We flew home on November 30th, a mere 5 days after surgery and here's the important points:
1. Wheelchairs are good. Trying to walk, no matter the size of the airport is not worth the pain it will cause later.
2. Medicate beforehand. I didn't, and it sucked. I only had T3s for the pain, and wouldn't recommend taking 2 as it makes me woozy, but 1 would have taken the edge off.
3. Earl came in handy. The hospital recommended I have a pillow or blanket between myself and the seat belt as a cushion and most airlines charge for these now, but Earl worked quite nicely. Not only did he provide comfort but the cushioning was greatly appreciated.
4. Wheelchairs. They are on the list twice for a reason.
5. A ride or a taxi, don't park at the airport. Airport parking involves walking, walking is not good at this stage. Chances are it's already been a long day with a lot of activity (especially if a certain dog gets out of your friend's house just as the cab arrives to take you to the airport and you have to chase him down before you can leave), and friends and taxis meet you at the curb which is a very good thing. Plus, they don't really let the wheelchairs out of the terminal building.
6. Rest. When you get home, just go straight to your wonderful warm, welcoming and comfortable bed and sleep. You need it.
All in all, its good to be home, and flying was way better than driving. Could not have survived every bump in the winter roads even on the way home from the airport, let alone from another city.
Tuesday, December 7, 2010
Wednesday, December 1, 2010
Freedom! Discharge Day
I loved Day 3. First, I had oatmeal with brown sugar for breakfast, which was the closest thing to real food I'd had in days, and second I got out.
Here was my conversation with the surgeon who checked in with me first thing in the morning:
Him: "how are you doing?"
Me: "I would like a shower and I would like to go home, please"
Him: "alight then, we should be able to do that."
He took a look at my chart, saw that I was eating and moving well and got started on the paperwork.
My husband showed up shortly, when and filled the prescription for T3 with codeine for pain management, a nurse took out my IV, and gave me a shower (I HATED not being able to wash myself - one of the reasons I wanted to go home), I got dressed in some loose fitting yoga pants and a sweater, and away we went.
Home at this point was my friend's house, he had very generously opened his home to us for the duration of our visit, and although there is no place like home, this was so much better than the hospital. 1, I didn't have someone bugging me every 4hrs to take my vitals. 2, I could pee without assistance. 3, I wasn't in a hospital with a room full of other patients, who I understand had their own issues, but at times were very noisy, and those times felt like they were always when I was trying to sleep. 4, I could wash myself (which granted I didn't do until the next day, but even knowing that I could made me so much happier).
Once at home I took 2 T3s and took a much needed nap. The simple activity of showering, walking from my room to the cab and then into the house was a bit much for me. I was exhausted.
This first day of freedom involved a few naps and not much more, even food-wise. I was/am still on mostly soups with some soft solids in them, nothing much more than that. So although the food did get better, we are still limited on what I can/should be eating. Lucky for me my husband is a pretty awesome cook, so when I am able to eat more, I know I'll be in good hands.
Here was my conversation with the surgeon who checked in with me first thing in the morning:
Him: "how are you doing?"
Me: "I would like a shower and I would like to go home, please"
Him: "alight then, we should be able to do that."
He took a look at my chart, saw that I was eating and moving well and got started on the paperwork.
My husband showed up shortly, when and filled the prescription for T3 with codeine for pain management, a nurse took out my IV, and gave me a shower (I HATED not being able to wash myself - one of the reasons I wanted to go home), I got dressed in some loose fitting yoga pants and a sweater, and away we went.
Home at this point was my friend's house, he had very generously opened his home to us for the duration of our visit, and although there is no place like home, this was so much better than the hospital. 1, I didn't have someone bugging me every 4hrs to take my vitals. 2, I could pee without assistance. 3, I wasn't in a hospital with a room full of other patients, who I understand had their own issues, but at times were very noisy, and those times felt like they were always when I was trying to sleep. 4, I could wash myself (which granted I didn't do until the next day, but even knowing that I could made me so much happier).
Once at home I took 2 T3s and took a much needed nap. The simple activity of showering, walking from my room to the cab and then into the house was a bit much for me. I was exhausted.
This first day of freedom involved a few naps and not much more, even food-wise. I was/am still on mostly soups with some soft solids in them, nothing much more than that. So although the food did get better, we are still limited on what I can/should be eating. Lucky for me my husband is a pretty awesome cook, so when I am able to eat more, I know I'll be in good hands.
I P Freely
Day 2 brought about the removal of my catheter. Yay! I was super stoked about that. It happened shortly after waking up on Day 2, after a breakfast of OJ again. The nurse simple came and said that she was taking it out, I was laying on my back, she reached inside the waistband of my PJ pants, grabbed the tubing and it was out. Simple as that. No pain or discomfort (other than having someone reach into my pants). I was now at a stage where I pee freely.
Which wasn't actualy true. I still had an IV, and my IV was plugged in behind my bed. So everytime I had to pee, someone (my husband during the day, a nurse at night) had to some and unplug the machine for me. But, it was great to be up and moving around even just that tiny bit.
Speaking of being up and moving around, I was also able to start taking short walks down the hallway (assisted of course by my husband), holding on to my IV stand which I rolled somewhat awkwardly alongside of me. Being able to take these short walks meant my days were not spent exclusively in bed, and that was a joy in itself.
Earl was always waiting for me when I got back, and I say always like I had more than 2 walks, which I didn't. Those simple walks of 50 and 75ft were exhausting. As the doctors, nurses, and transplant coordinators had been telling me, this was major surgery and I was not to underestimate the stress it would place on my body. Which I totally had, and that was my own fault.
My midsection was still quite distended, apparently it can take some time for the CO2 to be fully absorbed by the body, but I was more used to it at this point in time.
Day 2 wasn't very interesting. Day 1 my hubby, Earl and myself watched Toy Story 3, and today we watched Toy Story 2. Of which I slept through most of it.
It was almost easier to sleep during the day than at night, not sure why, but it was.
The other highlight of Day 2 was ice cream. I was almost on full fluids, which they tried at first with some vanilla ice cream in the afternoon. It was tasty! And I handled it well so I was able to have more than just juice and broth for dinner, and even had chocolate ice cream for dessert. Food got a lot better on Day 2.
Which wasn't actualy true. I still had an IV, and my IV was plugged in behind my bed. So everytime I had to pee, someone (my husband during the day, a nurse at night) had to some and unplug the machine for me. But, it was great to be up and moving around even just that tiny bit.
Speaking of being up and moving around, I was also able to start taking short walks down the hallway (assisted of course by my husband), holding on to my IV stand which I rolled somewhat awkwardly alongside of me. Being able to take these short walks meant my days were not spent exclusively in bed, and that was a joy in itself.
Earl was always waiting for me when I got back, and I say always like I had more than 2 walks, which I didn't. Those simple walks of 50 and 75ft were exhausting. As the doctors, nurses, and transplant coordinators had been telling me, this was major surgery and I was not to underestimate the stress it would place on my body. Which I totally had, and that was my own fault.
My midsection was still quite distended, apparently it can take some time for the CO2 to be fully absorbed by the body, but I was more used to it at this point in time.
Day 2 wasn't very interesting. Day 1 my hubby, Earl and myself watched Toy Story 3, and today we watched Toy Story 2. Of which I slept through most of it.
It was almost easier to sleep during the day than at night, not sure why, but it was.
The other highlight of Day 2 was ice cream. I was almost on full fluids, which they tried at first with some vanilla ice cream in the afternoon. It was tasty! And I handled it well so I was able to have more than just juice and broth for dinner, and even had chocolate ice cream for dessert. Food got a lot better on Day 2.
Post-Op Day 1
Hospitals are not great for sleeping, at all. Every 4hrs there was a nurse to take my vitals, and if that so happened to be during a few precious moments of sleep - oh well.
So Day1 started with a surgeon waking me up around 7am. He was a part of the team, but not my actual surgeon and thus I had never met him before. It amused me as people don't seem to understand why I did what I did. I have no connection with kidney disease, no connection with organ donation/transplant, I just decided to do it. He seemed baffled. He did take a quick look at the port sites and the incision (my 4 dots and a dash) and said that I was doing great and away he went.
I'm not overly sure what time things were going on during the morning, I was still pretty close with my morphine drip and that added a bit of a haze to everything. Breakfast for me was tea, orange juice, apple juice. Or that was what was served. I was only able to have the OJ, wasn't feeling very hungry.
One of the nurses washed me, which was an experience in itself. I am not a big fan of not being able to take care of myself, and not being able to wash myself was not fun. Plus, I am not a big fan of other people touching me, especially in all those places - even if its just to make sure I am clean. So I got a wash and was able to brush my teeth, which was super awesome. And I was able to put on PJ pants, which I cannot tell you how happy they made me. Finally my bum wasn't hanging out every time I rolled over! And I added some super soft socks as my feet have a tendency to be cold. I still had the compression stockings on as I was very sedentary and they help prevent clots, but they also helped keep me nice and warm. I couldn't put on a PJ top as I had my IV in and it didn't work with the sleeves. Which kinda sucked, but at least I was able to have pants despite the fact I still had my catheter in.
My husband arrived around 10am, visiting hours were from 12noon to 8pm, but the nurses did say he could come early if he wanted, but not before 10 as they had stuff to do. Which was true, I had 'eaten' breakfast and washed up after already meeting with a surgeon before he arrived. But it was so nice to see him. He always makes me smile.
In the early afternoon or late morning (again, not totally sure) one of the transplant coordinators came to see me. She brought flowers and a card from the recipient and their family. Apparently the recipient was doing great, creatine levels were down from the 600s to the 100s, which is huge, and it was like night and day for them. She said that quite often recipients have almost a grey pallor before surgery, and after they really get their colour back, which was a good sign, and this recipient was no exception.
To protect both myself and the recipient's anonymity, I won't share the contents of the card the wrote me, but I can tell you it made me cry. The recipient was a mother, father, son or daughter. They had a family. This person was now able to do things that mere days before they were unable to do. They had a future to spend with their loved ones that didn't involve 20hrs of dialysis a week. They thanked me for what I had done, for what it meant for their family and wished me a speedy recovery. Rereading the card now, it still has the power to bring tears to my eyes and lessen my pain. It was all worth it, plain and simple.
The rest of this first day was pretty uneventful, the only other thing to note was the physiotherapist came and had me stand up and take a few steps in place. I wasn't yet recovered enough to be walking, but standing was do-able. My meals were still clear fluids, so nothing really of note, and I didn't really 'eat' much as I had (and still have) very little appetite.
I kept the flowers my my bedside, the card in the drawer of my hospital table, and my Bunny Earl by my side at all times.
A while back while waiting for an appointment I was texting my best friend and we decided to name my kidneys Earl and Pearl. Pearl being on the right, Earl on the left. When my husband came to see me when I was first out of surgery, he came bearing a white bunny stuffed animal, and when we were thinking of names for him, my husband suggested Earl. Thus the recipient got Earl the kidney, and I have Earl the bunny.
This night, however, was not as uneventful. One of the side effects of morphine is nausea. Sometime during the middle of the night the nausea hit me like a freight train. It woke me from my sleep, I started pressing my call button for a nurse, and before they could even get there I was throwing up. It sucked. They wiped me up, gave me some gravol and a small dish for if it happened again. It did. Twice more. Each time worse than the last both in quantity of 'output' and in the retching which incidentally engages you abs which hurt my incisions. It was not a pleasant night. But, thankfully, it was the worst of my nights and really the only unpleasant part of my stay.
So Day1 started with a surgeon waking me up around 7am. He was a part of the team, but not my actual surgeon and thus I had never met him before. It amused me as people don't seem to understand why I did what I did. I have no connection with kidney disease, no connection with organ donation/transplant, I just decided to do it. He seemed baffled. He did take a quick look at the port sites and the incision (my 4 dots and a dash) and said that I was doing great and away he went.
I'm not overly sure what time things were going on during the morning, I was still pretty close with my morphine drip and that added a bit of a haze to everything. Breakfast for me was tea, orange juice, apple juice. Or that was what was served. I was only able to have the OJ, wasn't feeling very hungry.
One of the nurses washed me, which was an experience in itself. I am not a big fan of not being able to take care of myself, and not being able to wash myself was not fun. Plus, I am not a big fan of other people touching me, especially in all those places - even if its just to make sure I am clean. So I got a wash and was able to brush my teeth, which was super awesome. And I was able to put on PJ pants, which I cannot tell you how happy they made me. Finally my bum wasn't hanging out every time I rolled over! And I added some super soft socks as my feet have a tendency to be cold. I still had the compression stockings on as I was very sedentary and they help prevent clots, but they also helped keep me nice and warm. I couldn't put on a PJ top as I had my IV in and it didn't work with the sleeves. Which kinda sucked, but at least I was able to have pants despite the fact I still had my catheter in.
My husband arrived around 10am, visiting hours were from 12noon to 8pm, but the nurses did say he could come early if he wanted, but not before 10 as they had stuff to do. Which was true, I had 'eaten' breakfast and washed up after already meeting with a surgeon before he arrived. But it was so nice to see him. He always makes me smile.
In the early afternoon or late morning (again, not totally sure) one of the transplant coordinators came to see me. She brought flowers and a card from the recipient and their family. Apparently the recipient was doing great, creatine levels were down from the 600s to the 100s, which is huge, and it was like night and day for them. She said that quite often recipients have almost a grey pallor before surgery, and after they really get their colour back, which was a good sign, and this recipient was no exception.
To protect both myself and the recipient's anonymity, I won't share the contents of the card the wrote me, but I can tell you it made me cry. The recipient was a mother, father, son or daughter. They had a family. This person was now able to do things that mere days before they were unable to do. They had a future to spend with their loved ones that didn't involve 20hrs of dialysis a week. They thanked me for what I had done, for what it meant for their family and wished me a speedy recovery. Rereading the card now, it still has the power to bring tears to my eyes and lessen my pain. It was all worth it, plain and simple.
The rest of this first day was pretty uneventful, the only other thing to note was the physiotherapist came and had me stand up and take a few steps in place. I wasn't yet recovered enough to be walking, but standing was do-able. My meals were still clear fluids, so nothing really of note, and I didn't really 'eat' much as I had (and still have) very little appetite.
I kept the flowers my my bedside, the card in the drawer of my hospital table, and my Bunny Earl by my side at all times.
 |
| If this bunny had a green ribbon, it would be identical to Earl |
This night, however, was not as uneventful. One of the side effects of morphine is nausea. Sometime during the middle of the night the nausea hit me like a freight train. It woke me from my sleep, I started pressing my call button for a nurse, and before they could even get there I was throwing up. It sucked. They wiped me up, gave me some gravol and a small dish for if it happened again. It did. Twice more. Each time worse than the last both in quantity of 'output' and in the retching which incidentally engages you abs which hurt my incisions. It was not a pleasant night. But, thankfully, it was the worst of my nights and really the only unpleasant part of my stay.
Donation Day - 4 Dots and a Dash
For whatever reason my husband's post(s) seem to have gotten lost in the abyss of the Internet and thus its taken a few days to get you all the insider information on what it was really like to have the surgery to give a kidney away.
At Home
Thursday morning we wake up pretty early, and by wake up I mean get out of bed, neither of us really slept much, and off I go to take my second anti-bacterial shower. This one leaves my skin feeling a touch itchy as its now a bit on the dry side, but I don't have much time to ponder this.
At the Hospital
We grab my 'overnight' bag, which in hindsight was completely over packed, and head off to the hospital. Upon arrival we do not go through admitting, rather we go straight to the floors as previously directed and they were waiting and ready for us. The nurses direct us into a room where I am told to change. My clothes, jacket and boots all go into clear plastic bags that get labeled with my information, and I put on the garb.
Dressing for Surgery
This was rather interesting as I had only expected a hospital gown and housecoat over top, which I did get, but also got white, thigh-high compression stockings with a hole at the ball of each foot (I'm assuming so they can check circulation). On top of those were hospital slippers, the thin paper ones that are more for sanitary reasons than anything.
Once I was all dressed and ready the surgeon came in to have me sign a few final forms authorizing the procedure, any other necessary life-saving procedures, as well as a possible blood transfusion should the need arise (which they didn't think it would, but just wanted to cover the bases). Once the forms were all signed we left the stuff that was to go to my room (a nurse would deliver it at some point in the day) and walked to the surgical unit.
Surgical Unit
Here we were taken into a curtained-off area (similar to a ward with lots of beds and only curtains for privacy) where we sat and a few nurses came to introduce themselves and ask a few final questions (most of which they had asked when we first got there, but the duplication was a safety thing, so didn't bother me) - when was the last time I had anything to eat, do I have any allergies etc. The anestelogist introduced himself, as well as a few others on the team. It was about 8am when I said goodbye to my husband and went into the room.
The room had a table in the center that almost looked like a cross- the main part for my body, the cross part for my arms. When I got up on the table I needed to make sure not to lay down on the hospital gown as clearly they would need access to what was underneath it. I'm laid down and they start with the needles. I'm not a fan at all, but apparently the first set of drugs was to relax me, and the second set was to put me to sleep. I was totally okay with both sets. My view from the table was whomever was in the immediate vicinity and two of those large, round OR lights. Not scary, but a little unnerving.I didn't spend a lot of conscious time in this room, so I don't have much more to say about it.
The Surgery
Here's what I do know about what happened in that room and in surgery. Laproscopic surgeries typically tend to be a bit longer than open surgeries as they are working in a confined space, by mine was only 2hrs in and out. I could tell that my surgeon had done this many times before. While I was out, they did put in a catheter, IV, and of course took out my left Kidney (named Earl). During this time my husband was waiting in one of the surgical waiting rooms on the same floor as the one we went to upon arrival that morning; after the surgery was done the surgeon came out and gave him an update as to how it went, which was perfectly.
4 Dots
I have 4 laproscopic sites on my left abs, 1 beside my bellybutton, 1 a bit higher and to the left of my naval, right below my ribs, 1 in line with my bellybutton but almost on the side of my body, and one down from the one below my ribs. They vary from 5mm to 12mm in size (I'm not sure which ones are which to be honest). If I take the heel of my right hand, place it on my stomach near the bellybutton incision, at the tip of my fingers is the one on the far side of my body, at my thumb is the one below my ribs, and at the midpoint on my pinky finger is the lowest dot. Not a large area, but hopefully that gives you an idea of how they are spread out.
The Dash
The incision, is almost where my left leg joins up with my torso. Almost right on the crease of my leg/body. They do the incision here for cosmetic purposes, its easier to hide the scar. The incision is about the length of my pointer finger, 4inches or so.
Recovery Room
Apparently I was in recovery for about 2 hours, mostly still under anesthetic. I remember the nurse (male) waking me up with a warm washcloth on my face, and being very cold. They grabbed me lots of warm blankets and after what seemed like a few brief minutes of checking my vitals, took me to my room.
My Room
I didn't know most of this when I first got there, but my room was a 4 patient room in the surgical ward (the recipient was in a different ward to help protect anonymity). I was on a morphine drip to help manage the pain, and I had this handy little button, much like what I assume the ones they use on Jeopardy are like, to administer some when I felt the need. It would of course lock me out if I tried to get too much in too short a period of time, but I didn't really notice much of that the first day.
I was feeling pretty happy, I knew it had gone well which is what I wanted, and a little loopy from all the drugs running through my system. All of this I had expected. What I hadn't expected was how distended my abdomen was going to be from the CO2 they pumped into me during surgery. I looked like I was 5 months pregnant. Or at least it felt that way. My entire midsection was pretty tender.
I was on clear fluids as a diet, and still had both the catheter and IV. The catheter served 2 purposes. 1, to monitor my 'output' to make sure there wasn't blood in the urine or anything like that, and 2, there was no way I would be able to get up and pee as often as I would have needed to give how much fluid they were pumping through me via the IV.
Hospital food, not that great. Mind you, I wasn't exactly getting the best selection at this time, and even then could only manage a bit of orange juice and a few sips of vegetable broth.
I spent most of the day on my back, and had to get the nurses to assist me to roll onto my right side the first time as I was that tender. Of course I was still wearing that ever so lovely hospital gown, and thus when I was on my sides during the night, I constantly felt like my butt was hanging out, even when I knew it was covered.
I was so drugged up that day, and stayed pretty consistent with the use of the morphine, that although they woke me up every 4hrs to take my vitals (temperature, blood pressure, pulse, O2 saturation), I was out of it. Not saying that I was sleeping, that didn't happen much at all, but I was pretty out of it.
During the night my blood pressure did drop pretty low, 93/45 or something like that. It happened at the midnight vitals check but they didn't do anything that I could tell, other than to keep a pretty close eye on me. Apparently morphine can lower blood pressure, which combined with my typical blood pressure which was on the lower side of normal, resulted in the drop. Thankfully the next time they roused me to check my vitals it was a bit higher.
My dear husband was by my side all afternoon, having made call to the small group of people who know during my time in the recovery room. From his side, apparently those 'guest' chairs in the hospital rooms are not that comfortable, and the entertainment that we brought was mostly for him as I was too out of it for any of it.
Thus ends DDay.
At Home
Thursday morning we wake up pretty early, and by wake up I mean get out of bed, neither of us really slept much, and off I go to take my second anti-bacterial shower. This one leaves my skin feeling a touch itchy as its now a bit on the dry side, but I don't have much time to ponder this.
At the Hospital
We grab my 'overnight' bag, which in hindsight was completely over packed, and head off to the hospital. Upon arrival we do not go through admitting, rather we go straight to the floors as previously directed and they were waiting and ready for us. The nurses direct us into a room where I am told to change. My clothes, jacket and boots all go into clear plastic bags that get labeled with my information, and I put on the garb.
Dressing for Surgery
This was rather interesting as I had only expected a hospital gown and housecoat over top, which I did get, but also got white, thigh-high compression stockings with a hole at the ball of each foot (I'm assuming so they can check circulation). On top of those were hospital slippers, the thin paper ones that are more for sanitary reasons than anything.
Once I was all dressed and ready the surgeon came in to have me sign a few final forms authorizing the procedure, any other necessary life-saving procedures, as well as a possible blood transfusion should the need arise (which they didn't think it would, but just wanted to cover the bases). Once the forms were all signed we left the stuff that was to go to my room (a nurse would deliver it at some point in the day) and walked to the surgical unit.
Surgical Unit
Here we were taken into a curtained-off area (similar to a ward with lots of beds and only curtains for privacy) where we sat and a few nurses came to introduce themselves and ask a few final questions (most of which they had asked when we first got there, but the duplication was a safety thing, so didn't bother me) - when was the last time I had anything to eat, do I have any allergies etc. The anestelogist introduced himself, as well as a few others on the team. It was about 8am when I said goodbye to my husband and went into the room.
The room had a table in the center that almost looked like a cross- the main part for my body, the cross part for my arms. When I got up on the table I needed to make sure not to lay down on the hospital gown as clearly they would need access to what was underneath it. I'm laid down and they start with the needles. I'm not a fan at all, but apparently the first set of drugs was to relax me, and the second set was to put me to sleep. I was totally okay with both sets. My view from the table was whomever was in the immediate vicinity and two of those large, round OR lights. Not scary, but a little unnerving.I didn't spend a lot of conscious time in this room, so I don't have much more to say about it.
The Surgery
Here's what I do know about what happened in that room and in surgery. Laproscopic surgeries typically tend to be a bit longer than open surgeries as they are working in a confined space, by mine was only 2hrs in and out. I could tell that my surgeon had done this many times before. While I was out, they did put in a catheter, IV, and of course took out my left Kidney (named Earl). During this time my husband was waiting in one of the surgical waiting rooms on the same floor as the one we went to upon arrival that morning; after the surgery was done the surgeon came out and gave him an update as to how it went, which was perfectly.
4 Dots
I have 4 laproscopic sites on my left abs, 1 beside my bellybutton, 1 a bit higher and to the left of my naval, right below my ribs, 1 in line with my bellybutton but almost on the side of my body, and one down from the one below my ribs. They vary from 5mm to 12mm in size (I'm not sure which ones are which to be honest). If I take the heel of my right hand, place it on my stomach near the bellybutton incision, at the tip of my fingers is the one on the far side of my body, at my thumb is the one below my ribs, and at the midpoint on my pinky finger is the lowest dot. Not a large area, but hopefully that gives you an idea of how they are spread out.
The Dash
The incision, is almost where my left leg joins up with my torso. Almost right on the crease of my leg/body. They do the incision here for cosmetic purposes, its easier to hide the scar. The incision is about the length of my pointer finger, 4inches or so.
Recovery Room
Apparently I was in recovery for about 2 hours, mostly still under anesthetic. I remember the nurse (male) waking me up with a warm washcloth on my face, and being very cold. They grabbed me lots of warm blankets and after what seemed like a few brief minutes of checking my vitals, took me to my room.
My Room
I didn't know most of this when I first got there, but my room was a 4 patient room in the surgical ward (the recipient was in a different ward to help protect anonymity). I was on a morphine drip to help manage the pain, and I had this handy little button, much like what I assume the ones they use on Jeopardy are like, to administer some when I felt the need. It would of course lock me out if I tried to get too much in too short a period of time, but I didn't really notice much of that the first day.
I was feeling pretty happy, I knew it had gone well which is what I wanted, and a little loopy from all the drugs running through my system. All of this I had expected. What I hadn't expected was how distended my abdomen was going to be from the CO2 they pumped into me during surgery. I looked like I was 5 months pregnant. Or at least it felt that way. My entire midsection was pretty tender.
I was on clear fluids as a diet, and still had both the catheter and IV. The catheter served 2 purposes. 1, to monitor my 'output' to make sure there wasn't blood in the urine or anything like that, and 2, there was no way I would be able to get up and pee as often as I would have needed to give how much fluid they were pumping through me via the IV.
Hospital food, not that great. Mind you, I wasn't exactly getting the best selection at this time, and even then could only manage a bit of orange juice and a few sips of vegetable broth.
I spent most of the day on my back, and had to get the nurses to assist me to roll onto my right side the first time as I was that tender. Of course I was still wearing that ever so lovely hospital gown, and thus when I was on my sides during the night, I constantly felt like my butt was hanging out, even when I knew it was covered.
I was so drugged up that day, and stayed pretty consistent with the use of the morphine, that although they woke me up every 4hrs to take my vitals (temperature, blood pressure, pulse, O2 saturation), I was out of it. Not saying that I was sleeping, that didn't happen much at all, but I was pretty out of it.
During the night my blood pressure did drop pretty low, 93/45 or something like that. It happened at the midnight vitals check but they didn't do anything that I could tell, other than to keep a pretty close eye on me. Apparently morphine can lower blood pressure, which combined with my typical blood pressure which was on the lower side of normal, resulted in the drop. Thankfully the next time they roused me to check my vitals it was a bit higher.
My dear husband was by my side all afternoon, having made call to the small group of people who know during my time in the recovery room. From his side, apparently those 'guest' chairs in the hospital rooms are not that comfortable, and the entertainment that we brought was mostly for him as I was too out of it for any of it.
Thus ends DDay.
Wednesday, November 24, 2010
Anti-Bacterial Shower - Night Before Surgery
The last two days have been... waiting. Its been too bloody cold out to do much or go anywhere, thus we've just been hanging out and seeing the odd movie (or Harry Potter and the Deathly Hallows Part 1 as that was one that I wanted to see before surgery). The days have felt like we are waiting, and as its gotten closer and closer to D-Day (Donation Day), the air has become thick with anticipation. This has been 11 months in the making and it's finally here.
Tonight we got my bag for the hospital all together - pyjamas, slippers, toiletries, yoga pants, laptop, charger, phone, phone charger, books etc. Simple enough as most of it hadn't gotten unpacked in the first place, but still something weird to do. I've never been in the hospital overnight before, so this has been a whole new experience.
The final thing to do tonight was shower with a special anti-bacterial sponge. Two of these were given to me on Monday at the Pre-Op clinic, and I was given special instructions. One I was to use the night before surgery (tonight) and the other the morning of. I am to enter the shower as normal, wash my hair, face, whatever, then use the sponge to first wash the surgical area (left abdomen) then the rest of my body. The sponge had 3 parts to it. 1 was a soft sponge part that looked like it had been doused in some sort of liquid that had a faint red-ish colour, which I'm assuming was the anti-bacterial agent. The second part was a clear scrubber (attached to the sponge) with fine bristles that I was to use to scrub off the lather generated by the sponge part. The third was this light blue plastic thing that was sticking out of the soft sponge part. It came out and was a tool for cleaning under the nails. They weren't joking when they said they wanted all of me nice and clean.
It didn't smell like anything, and lathered mostly like regular soap, although some of the lather had a reddish-orange colour to it, It didn't colour my skin or anything like that, which was nice. And the bristles were soft and pliable, they didn't hurt at all, it felt like a very gentle exfoliation.
Not a big deal or anything like that, but was interesting to know I would need to do this as in all the research I did, I didn't find anything about a pre-op shower.
As for D-Day, my lovely husband will be blogging for me with his insights on how it went, any useful information he can find, and what the initial stages of the recovery process are like. I'll come back to the blog when I am coherent, as apparently this make take a day or so as I will be on some pretty strong drugs. I want to keep this as real-time as possible, and I hope that my posts as well as my wonderful husband's will help in whatever way. If there is anything specific that you would like either of us to take special note of and blog about, please comment and we will do our best to provide the answers you are looking for.
Many thanks for all of your support, and I am looking forward to blogging again soon.
Tonight we got my bag for the hospital all together - pyjamas, slippers, toiletries, yoga pants, laptop, charger, phone, phone charger, books etc. Simple enough as most of it hadn't gotten unpacked in the first place, but still something weird to do. I've never been in the hospital overnight before, so this has been a whole new experience.
The final thing to do tonight was shower with a special anti-bacterial sponge. Two of these were given to me on Monday at the Pre-Op clinic, and I was given special instructions. One I was to use the night before surgery (tonight) and the other the morning of. I am to enter the shower as normal, wash my hair, face, whatever, then use the sponge to first wash the surgical area (left abdomen) then the rest of my body. The sponge had 3 parts to it. 1 was a soft sponge part that looked like it had been doused in some sort of liquid that had a faint red-ish colour, which I'm assuming was the anti-bacterial agent. The second part was a clear scrubber (attached to the sponge) with fine bristles that I was to use to scrub off the lather generated by the sponge part. The third was this light blue plastic thing that was sticking out of the soft sponge part. It came out and was a tool for cleaning under the nails. They weren't joking when they said they wanted all of me nice and clean.
It didn't smell like anything, and lathered mostly like regular soap, although some of the lather had a reddish-orange colour to it, It didn't colour my skin or anything like that, which was nice. And the bristles were soft and pliable, they didn't hurt at all, it felt like a very gentle exfoliation.
Not a big deal or anything like that, but was interesting to know I would need to do this as in all the research I did, I didn't find anything about a pre-op shower.
As for D-Day, my lovely husband will be blogging for me with his insights on how it went, any useful information he can find, and what the initial stages of the recovery process are like. I'll come back to the blog when I am coherent, as apparently this make take a day or so as I will be on some pretty strong drugs. I want to keep this as real-time as possible, and I hope that my posts as well as my wonderful husband's will help in whatever way. If there is anything specific that you would like either of us to take special note of and blog about, please comment and we will do our best to provide the answers you are looking for.
Many thanks for all of your support, and I am looking forward to blogging again soon.
Monday, November 22, 2010
What does Anonymous mean to you?
When I was looking for information on Kidney Donation, what it would be like and the process, I found some clinical information and some short paragraphs on the experience but nothing real time or detailed. Some of the accounts I found were from a few years ago and I wasn't sure if technology or the procedure had changed and what it would mean for me. I didn't find anything that gave me a real understanding of what the process was like as it was happening. Some recollections were lacking in detail, or focused almost exclusively on the nature of the act and the life it gave to the recipient. Please understand, all of this information is valuable in its own way, but I was looking for something more. And I didn't find it. So I decided to chronicle my journey, in hopes that if there is someone out there looking to donate a kidney, that they would find this information valuable.
I know that the Kidney community is a small one, and please understand in no way shape or form am I trying to jeopardize any one's identity, including the recipient's. I have told very few people what I am doing and may tell more people when I am ready, but am not yet ready yet. I know that there are ways to find out who I am, so I ask for your understanding. Remaining anonymous is a choice that I've made, and I ask that you respect my decision, not only for me, but for the recipient. Their life is a part of this as well.
This blog has also become a personal experience for me. Its become a place for me to talk about the mental and emotional journey this has been, in addition to the physical one. As my husband is starting to realize, the blog itself has become a part of the process.
Pre-Op Day
I am super excited. Made it this far, have my hubby with me (although that almost didn't happen due to a slight mix up with the flights and the reservations), have a place to stay and a jeep to drive around town. Thankfully the wonderful home we are staying in is quite close to the hospital which again makes life just a bit easier.
This lovely winter morning held a 10:30am appointment at the hospital for a few final tests and some pre-op stuff (more on that in just a moment). Of course there was a touch of confusion at admitting as I am out of province and therefore things like health care numbers are treated differently. Add in the fact that I don't have a current health care card in my married name (its been ordered several times and has never arrived) yet the coverage is, and it was a solid 25minutes to get through admitting.
Once that was dealt with off to the Testing Center we went. Spot urine test and a final cross match. Lovely 12 vials of blood (and for some reason unbeknowst to me, she did not use a butterfly and thus each vial managed a touch of pain and increased my hatred of needles). I keep hoping each blood test will be my last, yet I never seem to get that lucky.
From here we went up to the Pre-Op clinic where we watched a video on breathing, coughing, and leg exercises. Was beneficial. Apparently there are risks of pneumonia and whatnot if you don't clear the fluid and secretions (which can pile up if you lay in one position for too long, especially on your back). The video also showed how to support the incisions with a pillow or cushion when coughing. Good to know there is a wrong way to cough. The leg exercises are particularly important too. They help with circulation and post-op mobility. Simple exercises like pointing toes 10 times, making circles with our toes 10 times in each direction, at least once per hour while awake. Thankfully my husband was there and I know that he will take care of me and make sure I do the exercises because knowing me, I won't remember.
From the video we sat and chatted with a Nurse. We went over some specifics regarding the surgery (what to bring to the hospital, what not to bring, ie bring slippers, leave jewellery or valuables etc), as well as a rather intimate questionnaire. Similar to donating blood, these questions are to ensure that not only am I healthy, but that the recipient is getting a healthy kidney with no surprises. As for the actual procedure, I will arrive at the clinic the morning of the 25th, they will admit me directly and I will get changed, we will go to a pre-op room where they put me under and insert a catheter. From there into the OR and its a 3-4 hr procedure, a touch longer than if they were doing open surgery. Post-op I go into recovery for about an hour where the nurses will check my vitals and make sure I am good to go. From there I will be moved to my ward and my dear hubby will be allowed to see me. I'll be quite out of it and likely won't remember much.
They will have me up and walking the second day and I'm not to get up without a nurse handy (even if my hubby is there) the first few times. One thing they were quite adamant about its the pain post-op. I will be on a morphine drip and need to make sure that I am regulating my pain as if it goes unchecked or I let it get too bad, then it takes longer for me to come back to a good place. Communication with the nurses is also key. They need to know if something, anything, isn't feeling right. If I'm nauseated, if I hurt, am hot, cold, itchy whatever, I need to be telling the nurses as these may be side effects and we need to deal with them ASAP. Gotcha. Again, my husband was sitting there with me through all of this and rest assured, if I don't tell the nurses, he will. He is pretty worried about me not because he is scared, but because we are each other's world and he doesn't want anything to happen to me. I will be well taken care of, which I love.
If you can't tell, it was a long day at the hospital. From meeting the nurse and going over her checklist, we then met with the transplant coordinator for this center, and went over a few things. The most interesting one was the organ interview. Its a generic interview they have for all different types of donations, including cadaver donations. So my relationship to the organ is 'self'. That one made us smile. Again, a few more intimate questions, but nothing too scary. The interview with her lasted 30minutes or so, then a quick visit with the social worker, more so she had a face for the name and we were done.
At least, we were done at the hospital. The surgeon's office was not in the hospital and our appointment with him was later in the afternoon so a quick bite of lunch and a parking battle later and we got to meet the one who will be cutting me open. Well, not open. 4 'ports' for instruments and 1 incision on the lower left side of the physical extraction. Oh! Totally awesome, as we go to sit at their desk, my MRI is up and I actually get to see my insides, the veins and arteries. Very awesome (I'm a nerd like that). It was a quick visit, but was nice at least seeing this person before surgery. Not seeing them would scare me a bit I think.
Then we were done with the appointments. When we got home it was on the phone to book a flight home for my husband. Thankfully it was pretty easy and we are all taken care of. Returning home on the 30th, together. Then it was time to relax and I must admit it was nice.
So from here I have 2 days off, no appointments no tests, just hang out time in this beautiful city, then Thursday morning is the big day.
That's where we are as of today, and I do hope that if there is anyone that is reading this wanting to know what the experience is like, that this helps. If not, please comment and let me know what you would like to know more about. For those of you who have been through this, if there is anything you would like to add from your personal journey, would love to hear from you.
This lovely winter morning held a 10:30am appointment at the hospital for a few final tests and some pre-op stuff (more on that in just a moment). Of course there was a touch of confusion at admitting as I am out of province and therefore things like health care numbers are treated differently. Add in the fact that I don't have a current health care card in my married name (its been ordered several times and has never arrived) yet the coverage is, and it was a solid 25minutes to get through admitting.
Once that was dealt with off to the Testing Center we went. Spot urine test and a final cross match. Lovely 12 vials of blood (and for some reason unbeknowst to me, she did not use a butterfly and thus each vial managed a touch of pain and increased my hatred of needles). I keep hoping each blood test will be my last, yet I never seem to get that lucky.
From here we went up to the Pre-Op clinic where we watched a video on breathing, coughing, and leg exercises. Was beneficial. Apparently there are risks of pneumonia and whatnot if you don't clear the fluid and secretions (which can pile up if you lay in one position for too long, especially on your back). The video also showed how to support the incisions with a pillow or cushion when coughing. Good to know there is a wrong way to cough. The leg exercises are particularly important too. They help with circulation and post-op mobility. Simple exercises like pointing toes 10 times, making circles with our toes 10 times in each direction, at least once per hour while awake. Thankfully my husband was there and I know that he will take care of me and make sure I do the exercises because knowing me, I won't remember.
From the video we sat and chatted with a Nurse. We went over some specifics regarding the surgery (what to bring to the hospital, what not to bring, ie bring slippers, leave jewellery or valuables etc), as well as a rather intimate questionnaire. Similar to donating blood, these questions are to ensure that not only am I healthy, but that the recipient is getting a healthy kidney with no surprises. As for the actual procedure, I will arrive at the clinic the morning of the 25th, they will admit me directly and I will get changed, we will go to a pre-op room where they put me under and insert a catheter. From there into the OR and its a 3-4 hr procedure, a touch longer than if they were doing open surgery. Post-op I go into recovery for about an hour where the nurses will check my vitals and make sure I am good to go. From there I will be moved to my ward and my dear hubby will be allowed to see me. I'll be quite out of it and likely won't remember much.
They will have me up and walking the second day and I'm not to get up without a nurse handy (even if my hubby is there) the first few times. One thing they were quite adamant about its the pain post-op. I will be on a morphine drip and need to make sure that I am regulating my pain as if it goes unchecked or I let it get too bad, then it takes longer for me to come back to a good place. Communication with the nurses is also key. They need to know if something, anything, isn't feeling right. If I'm nauseated, if I hurt, am hot, cold, itchy whatever, I need to be telling the nurses as these may be side effects and we need to deal with them ASAP. Gotcha. Again, my husband was sitting there with me through all of this and rest assured, if I don't tell the nurses, he will. He is pretty worried about me not because he is scared, but because we are each other's world and he doesn't want anything to happen to me. I will be well taken care of, which I love.
If you can't tell, it was a long day at the hospital. From meeting the nurse and going over her checklist, we then met with the transplant coordinator for this center, and went over a few things. The most interesting one was the organ interview. Its a generic interview they have for all different types of donations, including cadaver donations. So my relationship to the organ is 'self'. That one made us smile. Again, a few more intimate questions, but nothing too scary. The interview with her lasted 30minutes or so, then a quick visit with the social worker, more so she had a face for the name and we were done.
At least, we were done at the hospital. The surgeon's office was not in the hospital and our appointment with him was later in the afternoon so a quick bite of lunch and a parking battle later and we got to meet the one who will be cutting me open. Well, not open. 4 'ports' for instruments and 1 incision on the lower left side of the physical extraction. Oh! Totally awesome, as we go to sit at their desk, my MRI is up and I actually get to see my insides, the veins and arteries. Very awesome (I'm a nerd like that). It was a quick visit, but was nice at least seeing this person before surgery. Not seeing them would scare me a bit I think.
Then we were done with the appointments. When we got home it was on the phone to book a flight home for my husband. Thankfully it was pretty easy and we are all taken care of. Returning home on the 30th, together. Then it was time to relax and I must admit it was nice.
So from here I have 2 days off, no appointments no tests, just hang out time in this beautiful city, then Thursday morning is the big day.
That's where we are as of today, and I do hope that if there is anyone that is reading this wanting to know what the experience is like, that this helps. If not, please comment and let me know what you would like to know more about. For those of you who have been through this, if there is anything you would like to add from your personal journey, would love to hear from you.
Thursday, November 18, 2010
Its all coming together! Many Thanks...
These last few weeks have been stressful to say the least. There have been so many details to get sorted out as I near my last day of work (tomorrow), as we prepare to fly to the city of surgery (November 21st) and have my Father-in-law come stay with us for a week to help take care of me. Add getting a Physical done to the mix and its safe to say I have been busy.
Up until late this morning we still hadn't had any confirmation that we were going to be able to fly with Hope Air. Then that fateful call came and the news could not be better. My husband and I are flying out this Sunday and have our return flights all booked (assuming recovery goes smoothly). I am grateful to the social worker for all of her time and effort in arranging this, and to Hope Air for the wonderful service they provide.
Work. Its been crazy busy. I have had a temp in the office for the last three days that I have been training as she will be covering me for the 8 weeks I am off. She's wonderful, really is. Smart, and able to think and use common sense to make sure things run smoothly. Its been a bit of a challenge as being the only full time employee means that my job has a lot of components and we only have 3 days of training. I think she might be a little overwhelmed, but I do have 2 days before surgery next week when she will be on her own and able to reach me with any questions that she has. Of course this also means that I have a lot of tasks that I can't hand off as they need my special touch and need to get done before I leave tomorrow. My desk needs to be totally cleaned off and organized (a much larger task than the simple sentence may lead you to believe it is) and the list of tasks to do seems to be growing the more I go through my stacks of paper. I think its safe to say that I will be working late tonight.
Which doesn't leave a lot of time for getting my home in the condition I want to leave it in. I am normally a fairly tidy person, but when we have guests I like to make sure the place is spotless. I typically would do this a day or so before the guest arrives to ensure that I don't undo all of my hard work. The plan was to do a good section of the deep scrubbing tonight but both my hubby and I are working late. This in itself is not too much of an issue, but it does mean that the remainder of our weekend will be spent cleaning instead of enjoying the mobility that might take me a while to regain post-op.
As I mentioned, this is something that we would normally do our best to get started on much sooner, especially with areas that we don't interact with on a daily basis (ie the guest room); however as the best laid plans often do, this went by the wayside. I was contacted by the hospital where the surgery will be and told I needed a full physical and family history. Great. I called my doctor's office. They are booking into December and there was no way they could squeeze in a full physical. Which meant I needed to find a walk-in clinic that would do one. Again, not an easy task at all. I received the call Tuesday around 3pm basically saying if I didn't have a physical I wasn't going to have surgery. So despite a slightly busy work week I pretty much dropped everything that I was doing and started making calls. I was fortunate enough to find a clinic that does physicals on walk-in, and away I went. It apparently has been longer than I thought since I had my last physical as I didn't know they made you strip. Ya... down the just undergarments, and even then, only on the bottom. I wasn't exactly anticipating this and thus when the doctor gave the instructions to strip and sit on the bed thingy I was in a touch of shock. If I'm going to have to get naked, I prefer a bit more notice. Anyways, made it through, got the paperwork and thus ended what I thought was going to be a quiet night packing and cleaning.
One of the good things that happened this week was my mom sent me a surgery care package. Since she can't be there with us, and works during the week she wanted to do something to let me know that she was thinking of me. She sent 2 pairs of slippers (1 for the hospital - as I was advised to throw them out when I leave due to the germs they will have picked up) and another for recovery at home as I am prone to cold feet. There were yoga pants (2) and sweat pants, both with very loose waistbands that can be tightened with drawstrings as opposed to elastics as I have been advised that I will be tender after surgery and will struggle with waistbands. She also sent PJs for the hospital (these will be laundered thoroughly instead of discarded post-op) with a great waistband. My mom loves me very much and this was very, very much appreciated. In fact, its going to be 90% of what I pack for the trip as its pretty much everything I need, clothing-wise that is.
I'm busy, and a touch stressed (I haven't been sleeping the last 4 nights) but not worried about surgery. My husband and my mother take care of that for me, and a lot of the stress has been alleviated today with the confirmation of Hope Air flights.
And I know that I am making a bigger deal out of cleaning my place to within an inch of its life, but it really doesn't take that long and being the lovely procrastinator that I am, I have a feeling that even if I didn't have an impromptu physical or a late night of work that it would still get done this weekend.
The good news is its all coming together. My temp has done wonderful during training and knows where to go for help if she needs it, the tasks I have left to do before I go will not take me as much time as I think they will (as soon as I get my procrastination out of the way and just focus), my mom's wonderful care package took the packing stress away as I now have everything I need, and we have our flights. We have a place to stay with a good friend of mine who, in a more generous gesture than I could have dreamed about has also offered up a vehicle to use while in town, and family to help take care of me when my husband has to go back to work. I'm very lucky that this is all coming together so beautifully and I don't need to stress about anything anymore. Maybe, if I get enough done today, I will even be able to sleep tonight. Now that would be a real treat.
Up until late this morning we still hadn't had any confirmation that we were going to be able to fly with Hope Air. Then that fateful call came and the news could not be better. My husband and I are flying out this Sunday and have our return flights all booked (assuming recovery goes smoothly). I am grateful to the social worker for all of her time and effort in arranging this, and to Hope Air for the wonderful service they provide.
Work. Its been crazy busy. I have had a temp in the office for the last three days that I have been training as she will be covering me for the 8 weeks I am off. She's wonderful, really is. Smart, and able to think and use common sense to make sure things run smoothly. Its been a bit of a challenge as being the only full time employee means that my job has a lot of components and we only have 3 days of training. I think she might be a little overwhelmed, but I do have 2 days before surgery next week when she will be on her own and able to reach me with any questions that she has. Of course this also means that I have a lot of tasks that I can't hand off as they need my special touch and need to get done before I leave tomorrow. My desk needs to be totally cleaned off and organized (a much larger task than the simple sentence may lead you to believe it is) and the list of tasks to do seems to be growing the more I go through my stacks of paper. I think its safe to say that I will be working late tonight.
Which doesn't leave a lot of time for getting my home in the condition I want to leave it in. I am normally a fairly tidy person, but when we have guests I like to make sure the place is spotless. I typically would do this a day or so before the guest arrives to ensure that I don't undo all of my hard work. The plan was to do a good section of the deep scrubbing tonight but both my hubby and I are working late. This in itself is not too much of an issue, but it does mean that the remainder of our weekend will be spent cleaning instead of enjoying the mobility that might take me a while to regain post-op.
As I mentioned, this is something that we would normally do our best to get started on much sooner, especially with areas that we don't interact with on a daily basis (ie the guest room); however as the best laid plans often do, this went by the wayside. I was contacted by the hospital where the surgery will be and told I needed a full physical and family history. Great. I called my doctor's office. They are booking into December and there was no way they could squeeze in a full physical. Which meant I needed to find a walk-in clinic that would do one. Again, not an easy task at all. I received the call Tuesday around 3pm basically saying if I didn't have a physical I wasn't going to have surgery. So despite a slightly busy work week I pretty much dropped everything that I was doing and started making calls. I was fortunate enough to find a clinic that does physicals on walk-in, and away I went. It apparently has been longer than I thought since I had my last physical as I didn't know they made you strip. Ya... down the just undergarments, and even then, only on the bottom. I wasn't exactly anticipating this and thus when the doctor gave the instructions to strip and sit on the bed thingy I was in a touch of shock. If I'm going to have to get naked, I prefer a bit more notice. Anyways, made it through, got the paperwork and thus ended what I thought was going to be a quiet night packing and cleaning.
One of the good things that happened this week was my mom sent me a surgery care package. Since she can't be there with us, and works during the week she wanted to do something to let me know that she was thinking of me. She sent 2 pairs of slippers (1 for the hospital - as I was advised to throw them out when I leave due to the germs they will have picked up) and another for recovery at home as I am prone to cold feet. There were yoga pants (2) and sweat pants, both with very loose waistbands that can be tightened with drawstrings as opposed to elastics as I have been advised that I will be tender after surgery and will struggle with waistbands. She also sent PJs for the hospital (these will be laundered thoroughly instead of discarded post-op) with a great waistband. My mom loves me very much and this was very, very much appreciated. In fact, its going to be 90% of what I pack for the trip as its pretty much everything I need, clothing-wise that is.
I'm busy, and a touch stressed (I haven't been sleeping the last 4 nights) but not worried about surgery. My husband and my mother take care of that for me, and a lot of the stress has been alleviated today with the confirmation of Hope Air flights.
And I know that I am making a bigger deal out of cleaning my place to within an inch of its life, but it really doesn't take that long and being the lovely procrastinator that I am, I have a feeling that even if I didn't have an impromptu physical or a late night of work that it would still get done this weekend.
The good news is its all coming together. My temp has done wonderful during training and knows where to go for help if she needs it, the tasks I have left to do before I go will not take me as much time as I think they will (as soon as I get my procrastination out of the way and just focus), my mom's wonderful care package took the packing stress away as I now have everything I need, and we have our flights. We have a place to stay with a good friend of mine who, in a more generous gesture than I could have dreamed about has also offered up a vehicle to use while in town, and family to help take care of me when my husband has to go back to work. I'm very lucky that this is all coming together so beautifully and I don't need to stress about anything anymore. Maybe, if I get enough done today, I will even be able to sleep tonight. Now that would be a real treat.
Tuesday, November 9, 2010
Another day, Another Blood Test
I hate needles. Like, a lot. Ugh. *shudder*.
I thought last week when I went and had fresh blood pulled for the cross-match that I was done, but no such luck. That blood went to the hospital I am going to be donating at for a cross match, which went well, and today's blood stayed at my local hospital for another cross match. Apparently the double check is making sure that each lab gets the same results. My local hospital's policy is that they do a final cross match 1 week before surgery, but apparently the hospital I am going to be donating at won't need that as we just did a confirmation.
So, hopefully I am done with needles until the 22nd. The 22nd is the day of my pre-op clinic, which is essentially a full day of tests to confirm that I am healthy and that all the information they have is the latest and greatest. Chest Xrays, EKGs, etc. I can do that.
I did have a chance to talk with my coordinator just after the test today and we talked about some of the specifics relating to pre and post op. Again, the different hospitals do things a bit differently, but she did give me a general idea of what to expect.
My surgery is on a Thursday, so I will either be admitted on Wednesday or even Thursday morning. The surgery is typically first thing, and I will be pretty out of it right after due to the anesthetic. Apparently most patients report nausea after surgery due to the drugs and anesthetic, and they pump my abdomen full of CO2 to give the surgeons room to work so I will be really bloated. I will be in the hospital until my bowels start working, but apparently will also have a catheter in. Yay. The good news is they put that in just before surgery when I am already out. Apparently they need to monitor what is coming out as well as what is going it.
From the sounds of things, once I am out of the hospital I am good to return home and will have my 2week post-op appointment here.
As for what life is like immediately post-op, there is no lifting (nothing over 10lbs), no bending, lots of rest, and it will take a while to get my appetite back. I will need to make sure that I am walking and not in bed all the time but still resting when I need to. I can do that.
Apparently it is 3 holes for the surgery, 1 for the camera, 1 for the instruments, and 1 for the kidney removal. Oh! I totally forgot. Apparently it is a urologist who will be doing the surgery, a doctor who deals with nothing but the kidneys and kidney surgery. Just another one of those slightly different things, but still worth noting. Anyways, back to the holes. The one for kidney extraction is right by my bellybutton, and the others are one on each side. Apparently these take up to 6 weeks to heal (they heal from the inside out), which is one of the reasons why bending and lifting are out of the question for the first few weeks.
It will also take a while to get my appetite back and also to be on solid foods. I'm okay with that. My father-in-law (FIL) will be coming to stay with us for about a week when we get back (which might be sooner than expected) and the good news is that he makes fantastic soup. If I'm not up for solid foods or anything like that, at least I will have tasty soup waiting for me. Plus he is great company and since its getting cold out I will be pretty much confined to the condo. Will be really nice having someone there so I don't go stark raving mad because I'm alone too much.
I think I can handle everything thats going on, and know that between my husband and my mother I don't need to worry, they are doing enough of that between themselves.
I'm excited, I really am. Just not for needles. I really hate them. Hate everything about them. I'm not a fainter, but I do need to stay distracted when they take blood or it does make me light-headed and weak.
So here's my question to you: What was life like for you immediately post-op? What did it feel like? Any tips/tricks for making it easier? If you got a kidney, could you feel the change when you woke up? I'd love to hear about any/all experiences, the more I read the better prepared I am for my own.
Thanks!
I thought last week when I went and had fresh blood pulled for the cross-match that I was done, but no such luck. That blood went to the hospital I am going to be donating at for a cross match, which went well, and today's blood stayed at my local hospital for another cross match. Apparently the double check is making sure that each lab gets the same results. My local hospital's policy is that they do a final cross match 1 week before surgery, but apparently the hospital I am going to be donating at won't need that as we just did a confirmation.
So, hopefully I am done with needles until the 22nd. The 22nd is the day of my pre-op clinic, which is essentially a full day of tests to confirm that I am healthy and that all the information they have is the latest and greatest. Chest Xrays, EKGs, etc. I can do that.
I did have a chance to talk with my coordinator just after the test today and we talked about some of the specifics relating to pre and post op. Again, the different hospitals do things a bit differently, but she did give me a general idea of what to expect.
My surgery is on a Thursday, so I will either be admitted on Wednesday or even Thursday morning. The surgery is typically first thing, and I will be pretty out of it right after due to the anesthetic. Apparently most patients report nausea after surgery due to the drugs and anesthetic, and they pump my abdomen full of CO2 to give the surgeons room to work so I will be really bloated. I will be in the hospital until my bowels start working, but apparently will also have a catheter in. Yay. The good news is they put that in just before surgery when I am already out. Apparently they need to monitor what is coming out as well as what is going it.
From the sounds of things, once I am out of the hospital I am good to return home and will have my 2week post-op appointment here.
As for what life is like immediately post-op, there is no lifting (nothing over 10lbs), no bending, lots of rest, and it will take a while to get my appetite back. I will need to make sure that I am walking and not in bed all the time but still resting when I need to. I can do that.
Apparently it is 3 holes for the surgery, 1 for the camera, 1 for the instruments, and 1 for the kidney removal. Oh! I totally forgot. Apparently it is a urologist who will be doing the surgery, a doctor who deals with nothing but the kidneys and kidney surgery. Just another one of those slightly different things, but still worth noting. Anyways, back to the holes. The one for kidney extraction is right by my bellybutton, and the others are one on each side. Apparently these take up to 6 weeks to heal (they heal from the inside out), which is one of the reasons why bending and lifting are out of the question for the first few weeks.
It will also take a while to get my appetite back and also to be on solid foods. I'm okay with that. My father-in-law (FIL) will be coming to stay with us for about a week when we get back (which might be sooner than expected) and the good news is that he makes fantastic soup. If I'm not up for solid foods or anything like that, at least I will have tasty soup waiting for me. Plus he is great company and since its getting cold out I will be pretty much confined to the condo. Will be really nice having someone there so I don't go stark raving mad because I'm alone too much.
I think I can handle everything thats going on, and know that between my husband and my mother I don't need to worry, they are doing enough of that between themselves.
I'm excited, I really am. Just not for needles. I really hate them. Hate everything about them. I'm not a fainter, but I do need to stay distracted when they take blood or it does make me light-headed and weak.
So here's my question to you: What was life like for you immediately post-op? What did it feel like? Any tips/tricks for making it easier? If you got a kidney, could you feel the change when you woke up? I'd love to hear about any/all experiences, the more I read the better prepared I am for my own.
Thanks!
I wanna go again!
Skydiving was the best! OMG. I loved it!
We got to the dropzone just before noon, and watched an instructional video on safety procedures and how the actual jumping out of the plane was going to work. Pretty simple and straightforward.
There were 2 other tandem jumpers ahead of me, and due to the fact the season officially ended Oct 31st (they were only open this late in the year because the weather was so beautiful), there was only 1 tandem master (TM) and 1 pilot. So I had a bit of a wait, but got to hang out with the other divers and watch a few come down. Its a really small community, everyone seems to know eachother, and they are all super nice. I wasn't scared at all, my poor husband was scared enough for the both of us.
When it was finally my turn I could hardly stand still I was so excited. I put on my jumpsuit, and my TM helped me into my harness. He took me to an old fuselage that had the same setup as the plane we were jumping out of and gave me another quick tutorial on what the procedure was.
He got into the plane and I sat with my back to him, in between his legs. He strapped our hips together before the others got in as it was easier that way.
Two other solo jumpers went up on our load. It was about a 20min. climb to get to 10,000ft, and at about 7,000ft he strapped the rest of me to him nice and tight (and tightened my harness). At 10,000ft the door opened (and all that went through my head was it was a touch colder than I would have preferred) and out the solo jumpers went.
My TM moved over to the door essentially pulling me along with him, and I put my feet on the step that was over the landing gear. He tapped my hand that was holding the plane which was my signal to cross my arms over my chest and look up. Away we went. It was that fast. We did a somersault type thing and I was able to look up at the plane we had just jumped out of. Crazy. Because of the position I was in when we jumped, it was really easy to get into the proper form for the freefall. My arms were out, my body was straight, and my feet were trying to kick my TM's butt. We fell for 5000ft, about 30seconds, and he pulled the chute. It took about 700ft to fully deploy and then we played around doing turns and swings and all other kinds of antics (apparently my TM didn't get to do them with too many people as most were too nauseous). I was just having fun. It was the coolest thing ever!!!
He brought us around to the dropzone and landed us softly. Much to my husbands relief we had made it down safely with no injuries or malfunctions. I'm a bit of klutz, so that was a legitimate fear.
I had the biggest grin on my face and it didn't go away all weekend. It was such a rush and I wasn't scared. I was excited. This was something I have wanted to do for years and I finally did it. There was no way after all that talk and whatnot that I wasn't going to jump. And why be scared? There was an experienced jumper with me, and many redundancies upon redundancies to keep me safe. I was just along for the ride. And what a ride it is.
I know a few people that I have told about my adventure that say they have always wanted to go and have never been able to find anyone to go with, but to them all I say is 'just do it'. Its the crazies experience ever and as much as its fun to do things like this with friends, don't not do it because they aren't it to it. Do it for yourself, because you want to, and because you will never experience anything like it ever again (unless you go again, which I totally plan on).
So before I sign off, here is a question for you: what have you done from your bucket list? What is the craziest thing you have ever done? Would you ever do it again?
We got to the dropzone just before noon, and watched an instructional video on safety procedures and how the actual jumping out of the plane was going to work. Pretty simple and straightforward.
There were 2 other tandem jumpers ahead of me, and due to the fact the season officially ended Oct 31st (they were only open this late in the year because the weather was so beautiful), there was only 1 tandem master (TM) and 1 pilot. So I had a bit of a wait, but got to hang out with the other divers and watch a few come down. Its a really small community, everyone seems to know eachother, and they are all super nice. I wasn't scared at all, my poor husband was scared enough for the both of us.
When it was finally my turn I could hardly stand still I was so excited. I put on my jumpsuit, and my TM helped me into my harness. He took me to an old fuselage that had the same setup as the plane we were jumping out of and gave me another quick tutorial on what the procedure was.
He got into the plane and I sat with my back to him, in between his legs. He strapped our hips together before the others got in as it was easier that way.
Two other solo jumpers went up on our load. It was about a 20min. climb to get to 10,000ft, and at about 7,000ft he strapped the rest of me to him nice and tight (and tightened my harness). At 10,000ft the door opened (and all that went through my head was it was a touch colder than I would have preferred) and out the solo jumpers went.
My TM moved over to the door essentially pulling me along with him, and I put my feet on the step that was over the landing gear. He tapped my hand that was holding the plane which was my signal to cross my arms over my chest and look up. Away we went. It was that fast. We did a somersault type thing and I was able to look up at the plane we had just jumped out of. Crazy. Because of the position I was in when we jumped, it was really easy to get into the proper form for the freefall. My arms were out, my body was straight, and my feet were trying to kick my TM's butt. We fell for 5000ft, about 30seconds, and he pulled the chute. It took about 700ft to fully deploy and then we played around doing turns and swings and all other kinds of antics (apparently my TM didn't get to do them with too many people as most were too nauseous). I was just having fun. It was the coolest thing ever!!!
He brought us around to the dropzone and landed us softly. Much to my husbands relief we had made it down safely with no injuries or malfunctions. I'm a bit of klutz, so that was a legitimate fear.
I had the biggest grin on my face and it didn't go away all weekend. It was such a rush and I wasn't scared. I was excited. This was something I have wanted to do for years and I finally did it. There was no way after all that talk and whatnot that I wasn't going to jump. And why be scared? There was an experienced jumper with me, and many redundancies upon redundancies to keep me safe. I was just along for the ride. And what a ride it is.
I know a few people that I have told about my adventure that say they have always wanted to go and have never been able to find anyone to go with, but to them all I say is 'just do it'. Its the crazies experience ever and as much as its fun to do things like this with friends, don't not do it because they aren't it to it. Do it for yourself, because you want to, and because you will never experience anything like it ever again (unless you go again, which I totally plan on).
So before I sign off, here is a question for you: what have you done from your bucket list? What is the craziest thing you have ever done? Would you ever do it again?
Thursday, November 4, 2010
Novemeber 25th is a good day
A good day indeed. For not only is November 25th one month before Christmas, it is also the day of my surgery.
I found out today shortly after 12noon that a date had been set. I will be leaving this city on either the 21st or 22nd of this month, and will be under the knife (so to speak) on the 25th. Its here. Its real. Much to my mother's continued dismay (she worries) this is really happening.
My last day of work will be the 19th, and I will be off until late January. A temp will run our office while I'm gone...
I'm sorry for the disjointed post, sentence fragments and incoheretness, my mind is kinda all over the place right now. I mean, I have been waiting for the call for such a while, this process has been nearly a year in the making and its here. Its real.
That does give me pause, I can only imagine what the recepiant and their family are going through. For them this isn't some small thing, this is their mother, father, son, daughter, brother, sister back. This is a second chance at life. This is a hope and a prayer that everything goes well and my kidney is well received. My thoughts and prayers (although I'm not much for praying) are with the families in these next few weeks.
My transplant coordinator is already working on getting Hope Air involved, and I have to admit, free flights would be fantastic. My hubby and I were talking numbers a bit, and with my income going down to 55% on EI Sick Benefits, the flights would go a long way (hehe, punny).
Thankfully I do have a friend in the city I will be donating in who has graciously offered up his house for my hubby and I.
So after finding out the news I started calling, texting and emailing people. For the most part, all anyone knows (or all that we are telling) is that I am going away for surgery and will be gone for about 8 weeks. There are a handful of people that know the real story and after I had spoken to my husband and my mother I spread the word. its kinda funny, I did get a chance to talk with my best friend on the phone and she said "I don't really know what to say or ask in this situation, I mean, is 'congrats' really appropriate?" It was funny. I don't really know whats appropriate either, or what to say. This is new for me too. When I called people I started off the conversation with "November 25th." and we went from there. I didn't really know what else to say or how else to get that conversation started.
As I can tell that I'm starting to ramble and I know my thoughts aren't all together, I'll wrap up this post. But I do have a question for you: What was it like when they set your date (to either give or receive)? What went through your head?
I found out today shortly after 12noon that a date had been set. I will be leaving this city on either the 21st or 22nd of this month, and will be under the knife (so to speak) on the 25th. Its here. Its real. Much to my mother's continued dismay (she worries) this is really happening.
My last day of work will be the 19th, and I will be off until late January. A temp will run our office while I'm gone...
I'm sorry for the disjointed post, sentence fragments and incoheretness, my mind is kinda all over the place right now. I mean, I have been waiting for the call for such a while, this process has been nearly a year in the making and its here. Its real.
That does give me pause, I can only imagine what the recepiant and their family are going through. For them this isn't some small thing, this is their mother, father, son, daughter, brother, sister back. This is a second chance at life. This is a hope and a prayer that everything goes well and my kidney is well received. My thoughts and prayers (although I'm not much for praying) are with the families in these next few weeks.
Thankfully I do have a friend in the city I will be donating in who has graciously offered up his house for my hubby and I.
So after finding out the news I started calling, texting and emailing people. For the most part, all anyone knows (or all that we are telling) is that I am going away for surgery and will be gone for about 8 weeks. There are a handful of people that know the real story and after I had spoken to my husband and my mother I spread the word. its kinda funny, I did get a chance to talk with my best friend on the phone and she said "I don't really know what to say or ask in this situation, I mean, is 'congrats' really appropriate?" It was funny. I don't really know whats appropriate either, or what to say. This is new for me too. When I called people I started off the conversation with "November 25th." and we went from there. I didn't really know what else to say or how else to get that conversation started.
As I can tell that I'm starting to ramble and I know my thoughts aren't all together, I'll wrap up this post. But I do have a question for you: What was it like when they set your date (to either give or receive)? What went through your head?
Monday, November 1, 2010
Skydiving this Saturday!
I have a list of things to do before I die and every opportunity I try and cross an item off the list. I am always adding item to the list, places I want to go, experiences I want to have; there is an entire airborne section of which I am proud to say that I will be crossing a long-standing item off my list: Skydiving.Skydiving is something I've wanted to do for a very long time, and for whatever reason I decided that before surgery I wanted to cross something off my list, and the airborne section seemed most attainable. The other option was going on a discovery flight, however the real item on my list is get my pilots license, not just fly a plane. So I decided that skydiving was the way to go as it was an actual item on the list.
So this Saturday at 12noon I will begin the 30minute training before ascending to 9,500 feet where I will do a tandem jump with a 30second freefall. My lovely husband will be waiting in the drop zone (he refuses to be in the plane when I jump), I'm sure praying that I will land safely. I am a bit of a klutz (actually I am so much of a klutz that it has factored into what we look for in a home), so I do understand his fears.
Not gonna lie, I don't think it has sunk in quite yet that I am going to jump out of a plane on Saturday. Right now it just seems like I made an appointment for Saturday, similar to how I would make a hair appointment or something of the like. I am a bit of a chicken, so this is going to be very interesting... its sending shivers up my spine right now.
It's the whole 'live like you were dying' thing, the 'what if' scenarios that haunt me late at night have made me think about the life that I have, the time that I have, and what I want to be doing with it. Surgery is not without its risks (I really need to stop watching Greys Anatomy) and even routine surgery can go wrong. If something happens to me I want to have lived a life I can be proud of, a life where I have seized the day, made something of who I am and the time I have been so fortunate to have.
Thus, this Saturday I skydive. I don't know how I am going to actually do it, but I am going to find a way. And I can't wait to tell you all about it.
Until then, here is a question for you: What's on your list? Completed items? If you had the opportunity to do any 1 thing from your list right now, what would it be?
Sunday, October 31, 2010
I *hate* needles
24hr urine collection, not my favorite. I felt awkward and uncomfortable and chained to my home. I was scared to be out and about lest I had to pee. So I hung out at home most of yesterday. Which wasn't too bad, but it was a beautiful day out and the first Saturday hubby and I haven't either had something to do for work or been out of town in about 6 weeks. But, minor inconvenience.
So this morning I go to drop of the collection container, get a blood test, and give 1 more urine sample. I went as close to the end of the 24hr period as I could, as I was advised. But today's blood test... man do I hate needles! My left arm is typically the arm they draw from as I have skinny veins, but today after the needle was shoved in and wiggled around and I almost passed out, she decided the right arm might be the better alternative. So onto the right arm... I'm not sure if this was actually true or not, but it felt like the needle she was using was huge! It wasn't a tiny prick, it hurt! And since it was only 1 vial of blood today she didn't use a butterfly needle, the ones with the cord, she used a regular needed and so when she went to impale the vial to collect the blood she ended up digging the massive needle further into my arm and sending sparks shooting up and down. It was not a pleasant experience.
So now I have two track marks from today's test, and the urine collection is done! At least the last sample I had to give was a regular lab sample and not a 24hr one... that really sucked. I guess if I'm being honest it made me feel like I was sick, like there was something wrong with me. None of the other tests have made me feel that way, all the other tests have been to confirm that I am healthy (as I know this one was as well) and were just something I did. But this urine collection... not a fan.
I can see the bruises starting from the blood test too... long sleeves for me today so people don't think I'm turning into some sort of junkie with all the track marks I have lately. Ugh.. could never be a junkie, cannot stand needles.
So here's a question for you: what is your least favorite medical test/procedure and how do you cope?
So this morning I go to drop of the collection container, get a blood test, and give 1 more urine sample. I went as close to the end of the 24hr period as I could, as I was advised. But today's blood test... man do I hate needles! My left arm is typically the arm they draw from as I have skinny veins, but today after the needle was shoved in and wiggled around and I almost passed out, she decided the right arm might be the better alternative. So onto the right arm... I'm not sure if this was actually true or not, but it felt like the needle she was using was huge! It wasn't a tiny prick, it hurt! And since it was only 1 vial of blood today she didn't use a butterfly needle, the ones with the cord, she used a regular needed and so when she went to impale the vial to collect the blood she ended up digging the massive needle further into my arm and sending sparks shooting up and down. It was not a pleasant experience.
So now I have two track marks from today's test, and the urine collection is done! At least the last sample I had to give was a regular lab sample and not a 24hr one... that really sucked. I guess if I'm being honest it made me feel like I was sick, like there was something wrong with me. None of the other tests have made me feel that way, all the other tests have been to confirm that I am healthy (as I know this one was as well) and were just something I did. But this urine collection... not a fan.
I can see the bruises starting from the blood test too... long sleeves for me today so people don't think I'm turning into some sort of junkie with all the track marks I have lately. Ugh.. could never be a junkie, cannot stand needles.
So here's a question for you: what is your least favorite medical test/procedure and how do you cope?
Wednesday, October 27, 2010
24hr what?
*Disclaimer - I know the contents of this post are not of the nicest subject matter, but one of my objectives is to chronicle my entire experience throughout this entire process, and urine tests are a part of that, so they are a part of this.*
24hr Urine Test. Right. Just got a call from my transplant coordinator and although in this center they do renal scans, the center where I will be donating does Urine. Therefor she just faxed me a lab requisition and I will need to do a 24hr collection (which will likely happen on the weekend). They are testing for Creatinine (among other things) apparently.
So my understanding is that I will do a void first thing in the morning, then collect all urine for a 24hr period, stopping at the same time the next day. Hence they advised me to do it on the weekend (so I can keep the collection container in one bathroom). When I go to drop the sample off (or when I pick it up, which ever works) I need to do another urine collection and get a blood test as well (although I think the blood test needs to be at the end of the 24hr period).
The good news is apparently the receiving center has everything else that they need (including some fresh blood from Monday's blood test) and that if all the test results come back clear we are good to go.
So *fingers crossed* that I void well this coming weekend, and the next news item will be that I have flights booked and am headed out of province. Of course, I will continue to keep you all updated on the nitty gritties of the process, but in the meantime, here is a question for you: What is the best/worst experience you have had during a medical test?
24hr Urine Test. Right. Just got a call from my transplant coordinator and although in this center they do renal scans, the center where I will be donating does Urine. Therefor she just faxed me a lab requisition and I will need to do a 24hr collection (which will likely happen on the weekend). They are testing for Creatinine (among other things) apparently.
So my understanding is that I will do a void first thing in the morning, then collect all urine for a 24hr period, stopping at the same time the next day. Hence they advised me to do it on the weekend (so I can keep the collection container in one bathroom). When I go to drop the sample off (or when I pick it up, which ever works) I need to do another urine collection and get a blood test as well (although I think the blood test needs to be at the end of the 24hr period).
The good news is apparently the receiving center has everything else that they need (including some fresh blood from Monday's blood test) and that if all the test results come back clear we are good to go.
So *fingers crossed* that I void well this coming weekend, and the next news item will be that I have flights booked and am headed out of province. Of course, I will continue to keep you all updated on the nitty gritties of the process, but in the meantime, here is a question for you: What is the best/worst experience you have had during a medical test?
Monday, October 25, 2010
What is that? Is that a Match? I think it is!
So we have a match! An out of province match, but a match nonetheless.
Whee!
So I found this out last week, and this morning went for my cross-match blood test. Apparently they need as fresh as possible blood, so they wanted to get me in right before the courier was there.
Simple blood test, 6 yellow vials, a red and a lavender. A little woozy after, but thats more because of my distinct hatred of needles. They just bother me soo much!
But, the test has been done, away the blood goes and hopefully we will get a verbal confirmation within a week. I did run into my transplant coordinator in the lab, and she said that its normally 2 weeks to get results but because of my time crunch they have it flagged and will be able to give verbal confirmation hopefully within a week. Yay!
So from here, once we get the confirmation that I have passed the cross-match test, then I need to be accepted into the donor program of the recipient's province, and go through final cross-match tests which will likely be done in the few days prior to surgery.
My transplant coordinator is getting a social worker involved so hopefully Hope Air will be able to fly myself and my hubby out, and I have a buddy in the place I'm going that I have already cleared being able to stay with. Yay! Hopefully if this all comes together we won't have to pay flights or accommodations out of pocket.
So now it really comes to crunch time at the office and at home to make sure that I have everything set up for the temp, and my guest room set up for continued and long-term use for when the family comes to stay to help take care of me.
Which brings me to a question for you guys: What are your support systems like? Did many people know about your donation? Who was there with you post-op? Do tell!
Whee!
So I found this out last week, and this morning went for my cross-match blood test. Apparently they need as fresh as possible blood, so they wanted to get me in right before the courier was there.
Simple blood test, 6 yellow vials, a red and a lavender. A little woozy after, but thats more because of my distinct hatred of needles. They just bother me soo much!
So from here, once we get the confirmation that I have passed the cross-match test, then I need to be accepted into the donor program of the recipient's province, and go through final cross-match tests which will likely be done in the few days prior to surgery.
My transplant coordinator is getting a social worker involved so hopefully Hope Air will be able to fly myself and my hubby out, and I have a buddy in the place I'm going that I have already cleared being able to stay with. Yay! Hopefully if this all comes together we won't have to pay flights or accommodations out of pocket.
So now it really comes to crunch time at the office and at home to make sure that I have everything set up for the temp, and my guest room set up for continued and long-term use for when the family comes to stay to help take care of me.
Which brings me to a question for you guys: What are your support systems like? Did many people know about your donation? Who was there with you post-op? Do tell!
Wednesday, October 20, 2010
Trixcie Dates
So here is the trixcie part. My husband started a new job at the end of August and is not off probation until the end of November. If he takes any time off during that period, it is unpaid time. When I go off on medical leave my income (after the two week waiting period) drops to 55% of what I currently make. So we can't really afford to have him take any time off in November.
This wouldn't be a big thing except for the fact that my mother also recently started a new job, this time in September, and can't take any time off during the week either. So on weekends I will have lots of help, but during the week I am going to be on my own.
Again, this is trixcie because I need to be back at work by February, and planning for 8 weeks recovery, that means surgery has to happen in November. Which is going to be tough because my husband can't be there with me, and short of telling more people about this (which I'm still hesitant to do) I am going to be recovering alone.
So how to figure this out? If surgery is on a Friday, then I will have my hubby around (and my mother) for the first few days, which are likely the most crucial. But this all depends on when an OR is available, which might not be a Friday. And given the short notice of all of this and how much logistical work is going on that I don't even know about, Friday might not happen.
With only a small group of people knowing about this surgery, and even fewer of them in this city, this is not easy, and both my hubby and I have been slightly stressing about it. I guess it will be easier to figure things out when we have a specific date and arrangements can be made, but not having anything concrete to go off is hard (I'm not a fan of being in limbo).
As soon as I know more, I'll let you guys know. Until then, question for you: How did you deal with surgery and recovery? Who was there for you?
This wouldn't be a big thing except for the fact that my mother also recently started a new job, this time in September, and can't take any time off during the week either. So on weekends I will have lots of help, but during the week I am going to be on my own.
Again, this is trixcie because I need to be back at work by February, and planning for 8 weeks recovery, that means surgery has to happen in November. Which is going to be tough because my husband can't be there with me, and short of telling more people about this (which I'm still hesitant to do) I am going to be recovering alone.
So how to figure this out? If surgery is on a Friday, then I will have my hubby around (and my mother) for the first few days, which are likely the most crucial. But this all depends on when an OR is available, which might not be a Friday. And given the short notice of all of this and how much logistical work is going on that I don't even know about, Friday might not happen.
With only a small group of people knowing about this surgery, and even fewer of them in this city, this is not easy, and both my hubby and I have been slightly stressing about it. I guess it will be easier to figure things out when we have a specific date and arrangements can be made, but not having anything concrete to go off is hard (I'm not a fan of being in limbo).
As soon as I know more, I'll let you guys know. Until then, question for you: How did you deal with surgery and recovery? Who was there for you?
Friday, October 15, 2010
My own hesitancy
All the way through this process I have been blogging about tests, doctor's appointments, and random thoughts within about 24hrs of the event, or the event that triggered the thought process. Yet at the biggest moment in the process thus far I hesitated to blog about it. Yes, I've been busy with work (its our busiest time of year) but the same way I always seem to find time to email my best friend, I know that it would be easy for me to find time to update here.
So why the wait? Why has it been over a week since I got the call before saying anythings? To clarify that just a touch, I got the call, my boss knew right away as she was in the car beside me, and I promptly called my hubby to share the news (left a voicemail), and texted my best friend. I called my mom within a few hours as I knew it would be a bit more of a conversation with her instead of "Hi, got approved for surgery, very excited! chat more later, love you, bye!" and I wanted to make sure I had that time.
But why didn't I blog about it? What was stopping me? In all honesty I don't know. I've thought about it, it being both 'I should post' and 'why haven't I posted about this yet', and I've got nothing. Although I do think I am making up for the lack of posts in as this is my third of the night. As for the time delay, the best I can come up with is I wasn't sure how I was going to share the news with the 'world' and needed to let my back-brain sort things out (back-brain is my subconscious, I often put problems there that I can't consciously figure out a solution to, and when my subconscious has figured it out, I become aware of the solution). After all that time and subconscious activity I would have thought my announcement would have been accompanied by a bit more fanfare, however I am just not that good at coding and didn't know how to make fireworks go off when you got to my blog. That and they would be almost like a pop-up ad which I despise more than anything. So no fanfare, just a simple announcement that has now been buried under 2 additional posts. Meh.
Thankfully, blogging is the only thing I have had some hesitancy about in this whole process. Yes, I do think twice about what I am doing, but do I ever doubt my decision? No. Not for a moment. I was on the phone with my mother last night and we were chatting about this, and again babies came up. Her thoughts are I shouldn't do anything that could potentially harm my *eventual* babies, that they deserved every opportunity I could give them. I countered with 'the recipient is some one's baby. They have a mother and a father and a family too. Don't they deserve the opportunity to live?' Her only comment to this was that I was her baby.
This goes back to my thought process: Just because I don't know someone doesn't mean their life is worth any less than mine. My kidney is not going to a dump, to someplace where it will be wasted and any potential health risks will have been in vain. My kidney is going to give someone another chance at life. Therefor, any and all risks are worth it.
So here's a question to you: what are your views on the value of life? on human nature? Do you believe that all people are inherently good? Or all are inherently bad and have to be taught to be good? Nature vs nurture?
So why the wait? Why has it been over a week since I got the call before saying anythings? To clarify that just a touch, I got the call, my boss knew right away as she was in the car beside me, and I promptly called my hubby to share the news (left a voicemail), and texted my best friend. I called my mom within a few hours as I knew it would be a bit more of a conversation with her instead of "Hi, got approved for surgery, very excited! chat more later, love you, bye!" and I wanted to make sure I had that time.
But why didn't I blog about it? What was stopping me? In all honesty I don't know. I've thought about it, it being both 'I should post' and 'why haven't I posted about this yet', and I've got nothing. Although I do think I am making up for the lack of posts in as this is my third of the night. As for the time delay, the best I can come up with is I wasn't sure how I was going to share the news with the 'world' and needed to let my back-brain sort things out (back-brain is my subconscious, I often put problems there that I can't consciously figure out a solution to, and when my subconscious has figured it out, I become aware of the solution). After all that time and subconscious activity I would have thought my announcement would have been accompanied by a bit more fanfare, however I am just not that good at coding and didn't know how to make fireworks go off when you got to my blog. That and they would be almost like a pop-up ad which I despise more than anything. So no fanfare, just a simple announcement that has now been buried under 2 additional posts. Meh.
Thankfully, blogging is the only thing I have had some hesitancy about in this whole process. Yes, I do think twice about what I am doing, but do I ever doubt my decision? No. Not for a moment. I was on the phone with my mother last night and we were chatting about this, and again babies came up. Her thoughts are I shouldn't do anything that could potentially harm my *eventual* babies, that they deserved every opportunity I could give them. I countered with 'the recipient is some one's baby. They have a mother and a father and a family too. Don't they deserve the opportunity to live?' Her only comment to this was that I was her baby.
This goes back to my thought process: Just because I don't know someone doesn't mean their life is worth any less than mine. My kidney is not going to a dump, to someplace where it will be wasted and any potential health risks will have been in vain. My kidney is going to give someone another chance at life. Therefor, any and all risks are worth it.
So here's a question to you: what are your views on the value of life? on human nature? Do you believe that all people are inherently good? Or all are inherently bad and have to be taught to be good? Nature vs nurture?
Switching Sides
I was in the car with my boss running errands when the call came through. I was over the moon, doing a happy dance in my seat (she was driving) and she... took a deep breath. She told me that through all of this she had played devil's advocate trying to make sure I knew what I was doing (and I'm sure trying to convince me not to go through with it) but now that its been confirmed, she is switching sides.
Switching sides means that she has said her piece, and now will be there to support me wholeheartedly. She will be there for me, not just as my boss, but as a friend. I feel so blessed. I truly do. Donation is very important to me, and knowing that I have support and am not going to have to continually defend my decision makes it easier for me. It was going to happen one way or another, but its nice to know that the people I know and love are behind me instead of fighting me.
So to you, my wonderful boss, I thank you for your support.
And to any readers out there, what are your thoughts? What type of support have you encountered? How does it influence your decision? Would love to hear what its like for you...
Switching sides means that she has said her piece, and now will be there to support me wholeheartedly. She will be there for me, not just as my boss, but as a friend. I feel so blessed. I truly do. Donation is very important to me, and knowing that I have support and am not going to have to continually defend my decision makes it easier for me. It was going to happen one way or another, but its nice to know that the people I know and love are behind me instead of fighting me.
So to you, my wonderful boss, I thank you for your support.
And to any readers out there, what are your thoughts? What type of support have you encountered? How does it influence your decision? Would love to hear what its like for you...
We are Go For Donation!
Thats right, I got the call, the team had Rounds, and I have been cleared for donation!
They are putting me in the local tissue bank to see what they can find, as well as in the National Registry for possibly getting involved in a paired exchange. How awesome is that?
To be honest I am relieved. I was worried that they would say 'no'. I was worried that they would look at me and say 'you are a young woman, you haven't had kids, so thank you for the thought, but come back after you've had babies.' Don't get me wrong, my mother wold be over the moon if they said that, she thinks I should wait. And I think I should wait for babies. I'm young, I have lots of time, hubby and I are still getting things sorted, and now is the right time for donation, not for babies.
Getting back to the 'its a go for donation' part, YAY! I am super excited about this and now just need to wait for a match... Gosh... thats one thing I never really thought of, what if they can't find a match? I mean, I don't think that my blood type is that rare or anything like that... and I don't think that I would be so unique that there wouldn't be a match in the entire country. But I never really thought of that.
So where do we go from here? Well, I wait for a match to be found, then I will have a blood test (apparently they need fresh blood) to confirm the match, and although I am sure there will be a few more tests thrown in there, it pretty much goes to booking the surgery, final tests to confirm the match, then the surgery. Pretty simple and straight forward.
For me personally, as soon as a match is confirmed and surgery is booked I am going to start my time off work. Hopefully I will be donating in my current city, but if not I would need to be in the city of donation at least 4 days before (and at least 10 days after). That being said, I am sure there are going to be so many tests and things to do that I won't be able to give my job the attention it deserves, so I will take a few days before medical leave kicks in.
They are putting me in the local tissue bank to see what they can find, as well as in the National Registry for possibly getting involved in a paired exchange. How awesome is that?
To be honest I am relieved. I was worried that they would say 'no'. I was worried that they would look at me and say 'you are a young woman, you haven't had kids, so thank you for the thought, but come back after you've had babies.' Don't get me wrong, my mother wold be over the moon if they said that, she thinks I should wait. And I think I should wait for babies. I'm young, I have lots of time, hubby and I are still getting things sorted, and now is the right time for donation, not for babies.
Getting back to the 'its a go for donation' part, YAY! I am super excited about this and now just need to wait for a match... Gosh... thats one thing I never really thought of, what if they can't find a match? I mean, I don't think that my blood type is that rare or anything like that... and I don't think that I would be so unique that there wouldn't be a match in the entire country. But I never really thought of that.
So where do we go from here? Well, I wait for a match to be found, then I will have a blood test (apparently they need fresh blood) to confirm the match, and although I am sure there will be a few more tests thrown in there, it pretty much goes to booking the surgery, final tests to confirm the match, then the surgery. Pretty simple and straight forward.
For me personally, as soon as a match is confirmed and surgery is booked I am going to start my time off work. Hopefully I will be donating in my current city, but if not I would need to be in the city of donation at least 4 days before (and at least 10 days after). That being said, I am sure there are going to be so many tests and things to do that I won't be able to give my job the attention it deserves, so I will take a few days before medical leave kicks in.
Sunday, September 19, 2010
Ponderous and Pensive
My thoughts are random, and jump rapidly from one area to another.
Despite that randomness, today I have found myself thinking greatly about my kidney donation. I have a meeting with the Surgeon on Thursday, September 24th, and this will be the first meeting my husband will attend with me. The meeting is to discuss my anatomy, and which kidney they would take. I will need to get a blood test done as well as I am still working on getting (and keeping) my iron at a decent level.
From this meeting, the team will then go to a Round Table discussion, and my understanding is this is where the final decision, the go/no-go will be decided.
I'm not nervous about the appointment, I'm nervous about the decision. This is really, truly, something I want to do, and I am scared they will tell me no. I am scared they will say that I am a young woman who hasn't had children yet, and that thank you very much for the offer, but come back after you've had kids. I don't want them to say that. I want to do this, and as much as I know I will do this later if they say no now, I am ready for this now.
I now this is horrible, but I was thinking that maybe they will let me go ahead. I mean, I've had every test in the book. They've spent a lot of time working with me, testing me, evaluating me, making sure I make the grade. To have all those resources go to waste because of my age, and to deny someone a kidney, I think that would be a shame. But then again, that perspective is tainted by my own desire to do this.
The other thing I have been thinking about lately is speaking out. I have been adamant about remaining anonymous, but have started to think that maybe I could advocate for Anonymous Donation, and hopefully encourage more people to enter the program and help save more lives. The only reason, and I must stress this, only reason I would do this is to try and help. There are so many men, women, and children waiting for organs, and kidneys... you can live perfectly fine with just one. So with all the healthy people out there, and all the people that are fighting for their lives, doesn't it make sense to try and match them up? And if I can help with that, should I? Or stick to my original plan which was to donate my kidney, tell as few people as possible, and continue on with my life.
I don't know if anyone actually reads this blog, but if you do, I would really appreciate some feedback. What would you do? Speak up? Or Donate and continue on with life? Why?
Monday, August 9, 2010
Hope
I have been thinking a lot about the state of the world, about where we are as a culture, as a society, as a part of the global collective. What defines us? Collectively? Individually? What unites us?
I think that across all borders, political, racial, religious, age, gender, intellectual, the uniting factor is Hope. Hope for a better tomorrow.
Many people Hope for different things. They pray and they work relentlessly to make change. Change in their own lives, change in laws. Some fight for equality, for justice, for respect, for the right to marry, for freedom, for the environment. But what guides us, what gets us through the days, and especially the nights, is a Hope that all of our work will not be in vain, that there will be a better tomorrow.
Its discouraging to work so hard at something, anything, and never see a change. To think that you don't make a difference, that no one would notice you or your efforts were gone. To think that your small effort in changing your light bulbs to be more Eco friendly will not make any difference. To think that when you write letters for freedom, to sign a petition (or champion the petition) to change laws will never amount to anything, it breaks the heart, but not the spirit.
This is where the whole is greater than the sum of its parts, and that these small changes do make a difference. That is why we do these things, why we take these small steps, make these small changes, and continue to work and pray. Not all of these things are small, and most of them are not easy. Easy is too often the way people go, and it is rarely what is best (but who am I to say what is best?). That these actions will lead to a better tomorrow.
We Hope. Hope unites us across every border and boundary. Hope is universal.
I Hope that I can do something, however small, to create a better tomorrow.
What gives you hope? What do you Hope for?
Thursday, August 5, 2010
Just Adding to the List
I got to meet my little sister today. I have gone through the Big Brothers Big Sisters program and am finally becoming a Big Sister!
My little sister is super amazing! She is smart, funny, and is beautiful, inside and out. I'm really excited to begin hanging out with her, and can't wait to get to know her more.
Today at the intake meeting with my little, her mom, and the mentoring coordinator, I learned that my little is on a reduced sodium diet because she has had some medical issues, and needs to watch her sodium due to the state of her kidneys. She's 11.
That's just one more reason why I'm going to do what I'm going to do. I only just met her, and already I can tell what an amazing young girl she is, and if her kidneys failed and she needed a donor...
I don't even want to think about that.
But what I do know is that I believe in the good of this world. I believe that a single person can make a difference. I believe that despite what so many people have told me, donating my kidney is the right thing to do.
My little sister is one more reason why I am donating my kidney, and am proud to do it.
My little sister is super amazing! She is smart, funny, and is beautiful, inside and out. I'm really excited to begin hanging out with her, and can't wait to get to know her more.
Today at the intake meeting with my little, her mom, and the mentoring coordinator, I learned that my little is on a reduced sodium diet because she has had some medical issues, and needs to watch her sodium due to the state of her kidneys. She's 11.
That's just one more reason why I'm going to do what I'm going to do. I only just met her, and already I can tell what an amazing young girl she is, and if her kidneys failed and she needed a donor...
I don't even want to think about that.
But what I do know is that I believe in the good of this world. I believe that a single person can make a difference. I believe that despite what so many people have told me, donating my kidney is the right thing to do.
My little sister is one more reason why I am donating my kidney, and am proud to do it.
Wednesday, August 4, 2010
Possibilities Give Me Hope
I had a business lunch today with my boss and a local philanthropist and it was one of the most incredible meals I have ever eaten. We were there to talk about the possibility of providing a scholarship for one of the girls in our program, and all he said was "tell me what you need".
Not only is he more than willing to share his good fortune, but he helped come up with ways in which we can take his acts of kindness and make more of an impact on the local community. His focus was on saving one life. Making a difference for 1 girl. And he does this all over the world.
The possibilities for life that come from a man like this give me hope for a better tomorrow. He helps me believe that one person can make a difference, and that you only need to change one life.
I am very fortunate in so many ways, and I want to help in any way that I can.
Not only is he more than willing to share his good fortune, but he helped come up with ways in which we can take his acts of kindness and make more of an impact on the local community. His focus was on saving one life. Making a difference for 1 girl. And he does this all over the world.
The possibilities for life that come from a man like this give me hope for a better tomorrow. He helps me believe that one person can make a difference, and that you only need to change one life.
I am very fortunate in so many ways, and I want to help in any way that I can.
Thursday, July 15, 2010
Live Like You Were Dying
I am very thankful for all of the opportunities that I have had in my life. I have a wonderful husband who loves me more than life itself, I have a wonderful family that treasures me, friends so close they are family, and I have lived a life. In my short years here I have been to University, graduated with 2 degrees, spent 6 months in Europe seeing sights I never thought I would see in person. I've had experiences, I've had my moments (fitting follow up to Live Like You Were Dying is I've Had My Moments by Emerson Drive). I've lived a full life, and although I know that I will come out of the surgery with flying colours and go on to have a family of my own, get my pilots license, and continue to have random wonderful adventures; I know that if something happens and this is it for me, I will have lived a life I can be proud of, a life of no regrets, a life of love, passion, family, friends, and meaning.
I want to leave you with the lyrics that inspired my post today:
Artist: McGraw Tim
Song: Live Like You Were Dying
Album: Live Like You Were Dying
He said: "I was in my early forties,
"With a lot of life before me,
"An' a moment came that stopped me on a dime.
"I spent most of the next days,
"Looking at the x-rays,
"An' talking 'bout the options an' talkin’ ‘bout sweet time."
I asked him when it sank in,
That this might really be the real end?
How’s it hit you when you get that kind of news?
Man whatcha do?
An' he said: "I went sky diving, I went rocky mountain climbing,
"I went two point seven seconds on a bull named Fu Man Chu.
"And I loved deeper and I spoke sweeter,
"And I gave forgiveness I'd been denying."
An' he said: "Some day, I hope you get the chance,
"To live like you were dyin'."
He said "I was finally the husband,
"That most the time I wasn’t.
"An' I became a friend a friend would like to have.
"And all of a sudden goin' fishin’,
"Wasn’t such an imposition,
"And I went three times that year I lost my Dad.
"Well, I finally read the Good Book,
"And I took a good long hard look,
"At what I'd do if I could do it all again,
"And then:
"I went sky diving, I went rocky mountain climbing,
"I went two point seven seconds on a bull named Fu Man Chu.
"And I loved deeper and I spoke sweeter,
"And I gave forgiveness I'd been denying."
An' he said: "Some day, I hope you get the chance,
"To live like you were dyin'."
Like tomorrow was a gift,
And you got eternity,
To think about what you’d do with it.
An' what did you do with it?
An' what can I do with it?
An' what would I do with it?
"Sky diving, I went rocky mountain climbing,
"I went two point seven seconds on a bull named Fu Man Chu.
"And then I loved deeper and I spoke sweeter,
"And I watched Blue Eagle as it was flyin'."
An' he said: "Some day, I hope you get the chance,
"To live like you were dyin'."
Monday, July 12, 2010
"No! Absolutely not!"
So my mother-in-law knows. Wanna guess what her reaction was?
Needless to say she basically said that she thinks its great that I want to do this, but that I shouldn't. That I was putting my future children at risk, and living with one kidney is a completely different life. Which it isn't. And there is a greater risk that I will be hit by a bus walking to work than have complications during pregnancy.
Interesting piece of the puzzle... when we were talking about it, my husband asked her if I was donating to my best friend if that would change her reaction. "Absolutely." So she is an example of the issue being that its non-directed.
That continues to boggle my mind. And I guess I'm learning that I don't think the same way a lot of people do, because to me, just because I don't know someone doesn't mean that their life is not worth as much as mine, that its okay for someone else to die because of a 1 in 300,000 chance of complications. To me, I have the ability to do this, and to not do it to me is almost like playing God and deciding who lives and who dies. Each person has the power to save a life, via blood donation, bone marrow transfusion, or even organ donation. The process is albeit time consuming, but it is relatively simple, and it saves a life. Is it not worth taking a few hours and a few weeks out of your life to give someone years to love and be loved? If it were your loved one, nothing is worth more than a life, and so why would that change because I don't know the recipient?
The other question that both mothers have now asked is "do I get to pick who gets my kidney?" Do I get to say only a child can have it, or a single mother? NO! And I wouldn't want to either.
No, my kidney goes to the next person on the transplant list that I am a match for, regardless of who they are, how old they are, or why they need a kidney. Thats none of my business, and I don't want to know.
Moving on.
Now, all of the people that need to know, know. Now I just hope and pray that I am able to get my iron up and am approved for donation. I know that I will have all the support I need to get through this.
And of course, I will continue to chronicle my experiences, the tests, the surgery, and the recovery.
Needless to say she basically said that she thinks its great that I want to do this, but that I shouldn't. That I was putting my future children at risk, and living with one kidney is a completely different life. Which it isn't. And there is a greater risk that I will be hit by a bus walking to work than have complications during pregnancy.
Interesting piece of the puzzle... when we were talking about it, my husband asked her if I was donating to my best friend if that would change her reaction. "Absolutely." So she is an example of the issue being that its non-directed.
That continues to boggle my mind. And I guess I'm learning that I don't think the same way a lot of people do, because to me, just because I don't know someone doesn't mean that their life is not worth as much as mine, that its okay for someone else to die because of a 1 in 300,000 chance of complications. To me, I have the ability to do this, and to not do it to me is almost like playing God and deciding who lives and who dies. Each person has the power to save a life, via blood donation, bone marrow transfusion, or even organ donation. The process is albeit time consuming, but it is relatively simple, and it saves a life. Is it not worth taking a few hours and a few weeks out of your life to give someone years to love and be loved? If it were your loved one, nothing is worth more than a life, and so why would that change because I don't know the recipient?
The other question that both mothers have now asked is "do I get to pick who gets my kidney?" Do I get to say only a child can have it, or a single mother? NO! And I wouldn't want to either.
No, my kidney goes to the next person on the transplant list that I am a match for, regardless of who they are, how old they are, or why they need a kidney. Thats none of my business, and I don't want to know.
Moving on.
Now, all of the people that need to know, know. Now I just hope and pray that I am able to get my iron up and am approved for donation. I know that I will have all the support I need to get through this.
And of course, I will continue to chronicle my experiences, the tests, the surgery, and the recovery.
Wednesday, July 7, 2010
Telling the Other Mother
My husband and I decided that we were far enough along in the process that we should start telling a few people what I was planning. Out of respect for my mother, we decided to tell her first. Which we did.
But now to tell my husband's mother. I love her so dearly, I am very blessed to have such a wonderful relationship with her, and all of my in-laws for that matter. They have really made me a part of the family, and I enjoy a relationship with my mother-in-law outside of interactions with her and my husband.
Yet despite how wonderful the relationship is, I am still nervous about telling her. I get nervous when telling anyone about this. 1, because I am not overly confident that some of the people will be able to keep this to themselves (I'm fairly certain one person I told did not), and 2, because there is still the chance that I will not be able to complete the donation and then I will have to share that news as well. I suppose the 3rd reason is that I am not sure how to deal with this in the instance where I get a negative response.
For whatever reason, I feel as though I would be a failure if I am unable to donate. I am struggling to explain why I would feel that way, so instead of doing a poor job describing it and/or analyzing it, I'm just going to let it be.
The good news is, getting back to telling my mother-in-law, is that I think the 'information distribution' instead of the 'sales job' tactic worked well when I told my mother, and think that I will go down that same path this time round. *fingers crossed* that this will go over well, and that both her and my father-in-law will be there to support my husband and I through the rest of this process.
Yet despite how wonderful the relationship is, I am still nervous about telling her. I get nervous when telling anyone about this. 1, because I am not overly confident that some of the people will be able to keep this to themselves (I'm fairly certain one person I told did not), and 2, because there is still the chance that I will not be able to complete the donation and then I will have to share that news as well. I suppose the 3rd reason is that I am not sure how to deal with this in the instance where I get a negative response.
For whatever reason, I feel as though I would be a failure if I am unable to donate. I am struggling to explain why I would feel that way, so instead of doing a poor job describing it and/or analyzing it, I'm just going to let it be.
The good news is, getting back to telling my mother-in-law, is that I think the 'information distribution' instead of the 'sales job' tactic worked well when I told my mother, and think that I will go down that same path this time round. *fingers crossed* that this will go over well, and that both her and my father-in-law will be there to support my husband and I through the rest of this process.
Living in the What If World
I've been distracted for days. Feeling like I'm out of sorts or not quite present in my activities and interactions. I've been inside my head far more than is healthy.
I keep thinking, well, we don't have kids yet. And does it make me a horrible person to donate before having kids knowing the risks? What if something happens during pregnancy that harms my child? Is it my fault? Am I bad person if I do this?
Living inside my mind for so many days, playing out so many scenarios, has made me spend a few more hours reading stories of other's donations, their experiences, and most of all, their motivation.
Most of the stories I read were short and not overly detailed. Very few were non-directed or anonymous and even less were young women. But one, stood out for me. This post details his experience, and the struggle to balance his own life and make donation as 'easy' as possible with his work and his family while balancing the needs of his sister, the recipient.
The one thing that came clear that really reminded me of what I am doing, is that all of the steps that I go through, all of the tests and procedures I have gone through, those are nothing compared to living on dialysis, diminished quality of life, the thought of dying unless a donor can be found... Another person's life literally hangs in the balance here, and all of everything that I have gone through mean nothing in comparison.
I know that if it was anyone in my life who needed a kidney and I wasn't a match, I would be begging strangers on the street. I would pray that there was someone out there who was young, healthy, and able to donate that would do something like this.
Yes, there are risks. Yes, it is major surgery. No, I haven't had children yet. Yes, we do want children, and do want the very best for them. But I do know that there is a mother, a father, a brother, a sister, a son, a daughter, praying for a kidney, and that they would ask how I could put a (relatively) small risk and minor inconvenience before the value of some one's life.
So when I live in the what-if world, when my mind goes to those places and I lose sight of why I am doing this, all I need to do is picture my life without a loved one in it, someone who would have died when a donation would have saved them, I know that I could never say no, stop.
I am a strong person, I know that I can deal with whatever life throws my way, and having been thrown a lot, I know that whatever comes from this donation will only make me stronger. I am prepared to deal with the risks. The What If World, its just a symptom of my overactive imagination and not the world I choose to live in.
I choose to live my life to the fullest, to create a world I want to live in, to not be afraid of the risks of living. I choose to love my husband, to love my job, to be close to my family, to treasure my friends, and not to be afraid of what the future holds. I love feeling alive, like I am doing something with my life and not merely existing.
No, the What If World is not for me. Its a place I go to every now and then, but not where I choose to live.
I keep thinking, well, we don't have kids yet. And does it make me a horrible person to donate before having kids knowing the risks? What if something happens during pregnancy that harms my child? Is it my fault? Am I bad person if I do this?
Living inside my mind for so many days, playing out so many scenarios, has made me spend a few more hours reading stories of other's donations, their experiences, and most of all, their motivation.
Most of the stories I read were short and not overly detailed. Very few were non-directed or anonymous and even less were young women. But one, stood out for me. This post details his experience, and the struggle to balance his own life and make donation as 'easy' as possible with his work and his family while balancing the needs of his sister, the recipient.
The one thing that came clear that really reminded me of what I am doing, is that all of the steps that I go through, all of the tests and procedures I have gone through, those are nothing compared to living on dialysis, diminished quality of life, the thought of dying unless a donor can be found... Another person's life literally hangs in the balance here, and all of everything that I have gone through mean nothing in comparison.
I know that if it was anyone in my life who needed a kidney and I wasn't a match, I would be begging strangers on the street. I would pray that there was someone out there who was young, healthy, and able to donate that would do something like this.
Yes, there are risks. Yes, it is major surgery. No, I haven't had children yet. Yes, we do want children, and do want the very best for them. But I do know that there is a mother, a father, a brother, a sister, a son, a daughter, praying for a kidney, and that they would ask how I could put a (relatively) small risk and minor inconvenience before the value of some one's life.
I am a strong person, I know that I can deal with whatever life throws my way, and having been thrown a lot, I know that whatever comes from this donation will only make me stronger. I am prepared to deal with the risks. The What If World, its just a symptom of my overactive imagination and not the world I choose to live in.
I choose to live my life to the fullest, to create a world I want to live in, to not be afraid of the risks of living. I choose to love my husband, to love my job, to be close to my family, to treasure my friends, and not to be afraid of what the future holds. I love feeling alive, like I am doing something with my life and not merely existing.
No, the What If World is not for me. Its a place I go to every now and then, but not where I choose to live.
Monday, July 5, 2010
Now She Knows
So this weekend I told my Mom and Dad about my plans to donate. I was terrified. Nervous. I wanted positive support.
So here's how it went:
My husband and I took my Mom and Dad out to dinner to celebrate their birthday's (which are only weeks apart), and upon returning home, the four of us sat down to play some cards and I got things started.
Me: Mom, I'm thinking of donating a kidney.
Her: Please don't.
*Crap! Not the response I was looking for.*
But, have no fear, it did get better. The approach I took to this coversation was that I was there to get her thoughts and feelings, and to share information. This was not a sales job. This was information distribution.
So we started talking. She didn't really have a lot of questions for me, but looked as though there were many things she wanted to know. So I volunteered some information, I told her about the tests I had been through, how extensive they are, and what the process has been like thus far.
I also discussed with her the risks. Her main point is that I haven't had children yet, and she was worried about the risks both to me, and to any kids I may have.
Great. That I can handle. So we talked about them fairly extensively. Very happy that I had done my research and was able to provide quantifiable numbers to back up my points. I am very thankful that my husband was there with me. He was able to articulate things in a way that I was having issues with, and between the two of us, we remembered most of the research we've done. Having his support in telling the family was huge, and I think having his support helped my parents be more supportive as well.
Interesting point, Mom didn't seem to care that it was anonymous, her first concern was me. That made me feel pretty good actually, to know that above all she loves me and just wants me to be safe.
She is concerned about pregnancy and how hard it is on the body, and how hard it will be on mine with only one kidney, but with more information I think will be okay. Actually, she said she'd be terrified the entire time as it is major surgery, but that was her job as my mother.
My Dad on the other hand, he didn't say too much about this. His main comment was "you don't mess with Mother Nature." Duly noted.
Thankfully, they both did say that this was not their news to share, and would not be telling anyone else about this. Also, we talked about this on Saturday night, and had a normal Sunday, which was really wonderful. We were able to enjoy the time that we had together and not let this overshadow everything else.
Very glad that this is all done. Well, not all done. Its the In-Laws next weekend.
So here's how it went:
My husband and I took my Mom and Dad out to dinner to celebrate their birthday's (which are only weeks apart), and upon returning home, the four of us sat down to play some cards and I got things started.
Me: Mom, I'm thinking of donating a kidney.
Her: Please don't.
*Crap! Not the response I was looking for.*
So we started talking. She didn't really have a lot of questions for me, but looked as though there were many things she wanted to know. So I volunteered some information, I told her about the tests I had been through, how extensive they are, and what the process has been like thus far.
I also discussed with her the risks. Her main point is that I haven't had children yet, and she was worried about the risks both to me, and to any kids I may have.
Great. That I can handle. So we talked about them fairly extensively. Very happy that I had done my research and was able to provide quantifiable numbers to back up my points. I am very thankful that my husband was there with me. He was able to articulate things in a way that I was having issues with, and between the two of us, we remembered most of the research we've done. Having his support in telling the family was huge, and I think having his support helped my parents be more supportive as well.
Interesting point, Mom didn't seem to care that it was anonymous, her first concern was me. That made me feel pretty good actually, to know that above all she loves me and just wants me to be safe.
She is concerned about pregnancy and how hard it is on the body, and how hard it will be on mine with only one kidney, but with more information I think will be okay. Actually, she said she'd be terrified the entire time as it is major surgery, but that was her job as my mother.
My Dad on the other hand, he didn't say too much about this. His main comment was "you don't mess with Mother Nature." Duly noted.
Thankfully, they both did say that this was not their news to share, and would not be telling anyone else about this. Also, we talked about this on Saturday night, and had a normal Sunday, which was really wonderful. We were able to enjoy the time that we had together and not let this overshadow everything else.
Very glad that this is all done. Well, not all done. Its the In-Laws next weekend.
Friday, June 25, 2010
Options for Life
Options for Life - Viewer Discrection is Advised. from ODTAC on Vimeo.
Found this video on the Canadian Organ Donation site, and although its not speaking directly to anonymous donation and focuses more on Marginal donation, its still a worthwhile 12minutes.
Dear Mom, I'm donating a Kidney
Okay, so that might not be the best way to start the conversation, but I think its going to have to happen. A very wise friend of mine told me that parents (no matter how old the child is) do not like to be told that something is happening, they like to be involved in the process. So by telling my mother before the date is set, and letting her go through the remainder of the process with me, I am more likely to have her support and the relationship will be better long-term. Therefor I have altered my plan of not telling them until the date is set for surgery.
Thats wonderful. That really is. Now how do I do it?
But, I do know that I will have more support post-op and my husband will have some help taking care of me when I am convalescing.
I guess maybe the reason I'm scared to tell her is that I'm scared I will get the "negative support" that I got from my boss and her husband.
The weekend after I tell my mom and dad, we go visit the in-laws and I will be telling them as well. Not overly worried about that just yet, but I think a lot of how I feel about telling them will depend on what happens next weekend when I tell my mom.
The question is: If they hate the idea and are really against it, how will that affect me? And will they be able to support my decision even if they don't agree with it?
Any ideas?
Thats wonderful. That really is. Now how do I do it?
Part of my anxiety about this is I don't want this to overtake the weekend. I would just like to tell her, answer her questions, then move on. I want to see my family and spend time with them, not spend the entire time talking about this. So I'm thinking I might do it on Sunday before we leave, or maybe over dinner and a bottle of wine.
I love my mother so much, and I want her love and support. But, and there is always a but when it comes to family, I don't want her to spread this around. I don't know if I even want my brother to know. The more people that know the more likely this will get out or something, and I prefer to have it be just something I'm doing, then move on with life when it's done. And the more people that know, the harder that will be.
I guess maybe the reason I'm scared to tell her is that I'm scared I will get the "negative support" that I got from my boss and her husband.
The weekend after I tell my mom and dad, we go visit the in-laws and I will be telling them as well. Not overly worried about that just yet, but I think a lot of how I feel about telling them will depend on what happens next weekend when I tell my mom.
The question is: If they hate the idea and are really against it, how will that affect me? And will they be able to support my decision even if they don't agree with it?
Any ideas?
Too low to go
On June 16th I ment with the nephrologist (and the rest of the committee) and we talked risks and the gambit. The next day I emailed my transplant coordinator with a signed copy of my Personal Directive, and a note letting her know that my husband and I had talked about the risks and were comfortable moving forward. Then I got the news regarding my low iron. Blah! My iron levels are at an 8, and the acceptable range is 12-31. Thats really low. I'll have a lot of work to do to make sure that I get my iron up. And the transplant cant move forward until I get it up. Meaning the team cannot all come together and decide if I'm fit for donation. Mentally I'm good to go, and physically all my tests have come back looking good, but the only thing is my Iron.
To me, this seemed like a really small thing, but then I did some research, and here's what I found:
"The body needs iron to make hemoglobin, a substance in red blood cells that carries oxygen from the lungs to body tissues. Much of the iron our body is stored in the bone marrow that makes blood cells. When there is not enough iron in the bloodstream, the body uses the bone marrow reserves. If this iron stored in the bone marrow is low, red blood cells do not form properly: they are smaller than usual (microcytosis) and fewer. As a result, less hemoglobin is available to transport oxygen throughout the body."
Also: "Your body needs iron so it can make hemoglobin, a substance in red blood cells that carries oxygen from the lungs to body tissues. Brain activity, breathing, cellular respiration and every activity of the body depends on there being enough iron in the blood."
Note to self: Get iron levels up. My Transplant Coordinator did say that she has delt with this before and the treatment was IV iron. Eeek. I hate needles, with a passion. But, if thats what it takes, then thats what I'll do.
So today I go to my family doctor to work on this, and will be having all test results sent to the hospital as well to keep them in the loop. Cannot wait to have my iron levels back up.
To me, this seemed like a really small thing, but then I did some research, and here's what I found:
"The body needs iron to make hemoglobin, a substance in red blood cells that carries oxygen from the lungs to body tissues. Much of the iron our body is stored in the bone marrow that makes blood cells. When there is not enough iron in the bloodstream, the body uses the bone marrow reserves. If this iron stored in the bone marrow is low, red blood cells do not form properly: they are smaller than usual (microcytosis) and fewer. As a result, less hemoglobin is available to transport oxygen throughout the body."Also: "Your body needs iron so it can make hemoglobin, a substance in red blood cells that carries oxygen from the lungs to body tissues. Brain activity, breathing, cellular respiration and every activity of the body depends on there being enough iron in the blood."
Note to self: Get iron levels up. My Transplant Coordinator did say that she has delt with this before and the treatment was IV iron. Eeek. I hate needles, with a passion. But, if thats what it takes, then thats what I'll do.
So today I go to my family doctor to work on this, and will be having all test results sent to the hospital as well to keep them in the loop. Cannot wait to have my iron levels back up.
Wednesday, June 16, 2010
The problem is its Anynomous
Met with the nephrologist today (and by the nephrologist, I mean, her, the "student" doctor (its a teaching hospital after all) and my transplant coordinator. Gotta admit, it was not what I expected.
What I expected was to go there, sit the the Doctor and review my test results and confirm that I am medically fit to donate. Well, let me tell you, this went much different.
When I first got to the hospital, I had to go for a blood test for Tissue Typing. This normally would have been done to check compatibility with the intended recipient. However, since I am not donating to anyone in particular, this was done to determine the ins and outs of my tissue. Goodness do I hate needles.
Back to the meeting with the "Committee." This was more of a discussion of the risks, and did I really understand that this is not a small thing that I'm doing, and that once the kidney is gone, its gone. Yes. Got it.
I'm young. I'm married. I have not had children yet. And yes, we want kids. According to the nephrologist, that makes me her last choice for a donor due to the increased risks. She let me know of her personal bias, and I felt as though she treated me like a silly little girl who didn't know what she was doing and was too naive to know better.
We spent a lot of time talking about the risks, what they were, and how do I feel about them. The entire time I felt as though I needed to defend my decision and like I was being attacked.
Throw in a blood test (to check my iron levels) at the end of this 45minute fiasco and I was ready to leave. My boss and her husband have made it clear how they feel about my decision. They are against it. They think I should wait. And when I got back to the office, they were both there, and of course we went back to the discussion as to "Should I, or Should I Not". I felt attacked. I felt I was getting it from all angles. I know they love me a support me and are just being protective, but it was hard.
I ran into a girlfriend of mine shortly after this discussion, and although she supports me, she would never make the same decision, as there are slightly increased risks during pregnancy.
I was taken aback. I admit, I was confused and conflicted. I mean, if this many people were against the decision, did I need to rethink what I was doing? So when my husband and I were eating dinner we talked openly and honestly about all this, including the risks, and how this may affect us and any children we may have down the road. We are comfortable with the risks, we know that this is a relatively small in my life to potentially give someone back theirs.
The point of this post, more so than a chronicle of what this appointment and the process is like, is that I've figured out why people have an issue with my donation. If I said "my sister is sick and I'm a match" I would be considered selfish and not a good person if I didn't donate to her. If I didn't donate to my sister because of the increased risk to me as compared to the definitive fact that she would die without a kidney, most people would wonder how I could sleep at night. But because I'm doing this anonymously, there's an issue. It doesn't matter that its still some one's child, a mother, a father, a brother, a sister, a husband, a wife. Because I do not know them, this is a silly decision.
I get it. I know understand what these people have been telling me, I understand why they don't think I should do it. But now, more so than before, I am determined to go through with this. I believe in what I;m doing, I believe that I should be doing this, and know in my heart that this is the right thing to do.
What I expected was to go there, sit the the Doctor and review my test results and confirm that I am medically fit to donate. Well, let me tell you, this went much different.
When I first got to the hospital, I had to go for a blood test for Tissue Typing. This normally would have been done to check compatibility with the intended recipient. However, since I am not donating to anyone in particular, this was done to determine the ins and outs of my tissue. Goodness do I hate needles.
Back to the meeting with the "Committee." This was more of a discussion of the risks, and did I really understand that this is not a small thing that I'm doing, and that once the kidney is gone, its gone. Yes. Got it.
I'm young. I'm married. I have not had children yet. And yes, we want kids. According to the nephrologist, that makes me her last choice for a donor due to the increased risks. She let me know of her personal bias, and I felt as though she treated me like a silly little girl who didn't know what she was doing and was too naive to know better.
We spent a lot of time talking about the risks, what they were, and how do I feel about them. The entire time I felt as though I needed to defend my decision and like I was being attacked.
Throw in a blood test (to check my iron levels) at the end of this 45minute fiasco and I was ready to leave. My boss and her husband have made it clear how they feel about my decision. They are against it. They think I should wait. And when I got back to the office, they were both there, and of course we went back to the discussion as to "Should I, or Should I Not". I felt attacked. I felt I was getting it from all angles. I know they love me a support me and are just being protective, but it was hard.
I ran into a girlfriend of mine shortly after this discussion, and although she supports me, she would never make the same decision, as there are slightly increased risks during pregnancy.
I was taken aback. I admit, I was confused and conflicted. I mean, if this many people were against the decision, did I need to rethink what I was doing? So when my husband and I were eating dinner we talked openly and honestly about all this, including the risks, and how this may affect us and any children we may have down the road. We are comfortable with the risks, we know that this is a relatively small in my life to potentially give someone back theirs.
The point of this post, more so than a chronicle of what this appointment and the process is like, is that I've figured out why people have an issue with my donation. If I said "my sister is sick and I'm a match" I would be considered selfish and not a good person if I didn't donate to her. If I didn't donate to my sister because of the increased risk to me as compared to the definitive fact that she would die without a kidney, most people would wonder how I could sleep at night. But because I'm doing this anonymously, there's an issue. It doesn't matter that its still some one's child, a mother, a father, a brother, a sister, a husband, a wife. Because I do not know them, this is a silly decision.
I get it. I know understand what these people have been telling me, I understand why they don't think I should do it. But now, more so than before, I am determined to go through with this. I believe in what I;m doing, I believe that I should be doing this, and know in my heart that this is the right thing to do.
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