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.

If this bunny had a green ribbon, it would be identical to Earl

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.

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.

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.

Hospital Gown, House Coat, and my Red High Heels

Last night was my MRI to look at the veins and arteries of my kidneys to help the surgeons determine which kidney to remove (which one will be easiest to remove) and to make sure both kidneys were functioning at a level which will enable my body to function with only 1.
So here's how it went. The test was scheduled for 630pm, I was to arrive at the hospital by 6, and was to fast for 6hrs prior.
Upon arrival I am given a questionnaire to fill out mostly pertaining to prior surgeries and any instance where I would have metal in my body. Thankfully I don't have a pacemaker or screws in any bones, and the tattoo that I have is over 3 weeks old (its 8 years old actually). I fill out the form, and get to change into the hospital gown, and robe. Everything had to come off except underwear and shoes. Of course I managed to still look fashionable in my red high heels. Or at least as fashionable as one can look in such a situation.
I do admit it was a joy having to wait in a general waiting room with friends and family of other patients while in such a fashionable outfit, instead of a waiting room normally reserved for patients who have had to change.
Needless to say the wait felt rather long, due in part to the fact they didnt call me for my test until 7pm.
At this point a technician went over the form I had just filled out ensuring I fully understood everything and walking me through the MRI.
I laid down on the "bed" and the tech went vein hunting. My veins are not easy to find on the best of days, and they like to hide when I am not well hydrated. Being as I had been fasting for over 6hrs, it took 2 techs 2 arms to get a vein that worked. Did I mention I hate needles? Super fun.
On the "bed" I have a needle in my arm, some cage-esque device over my abdomen, and am strapped in. The vein on my left side had a tube which would carry the contrast into my body, and it was hooked around my left fingers to keep it in place. In my right hand I had a panic balloon in case it was too much and I needed to stop the test and get out immediately.
They put me into the machine and that was certainly an experience. I've never had an MRI before so this was all new to me.  The top of the machine was hardly 4inches from the tip of my nose, there was a bright light and a fan. I fully understand how the fan would help keep air moving and help people with claustrophobia, but for me, it just made me cold, and I am frozen at the best of times.
I had these headphones on to get breathing instructions as it was important for when they were taking the pictures. And also to muffle the incredibly loud noise of the machine.
The instructions were "breath in, breath out, breath in, breath out, stop breathing" and I was to hold my breath until they told me to resume. This was about as hard as it sounded. Thankfully when they were walking me through the procedure before we started the told me about how long each time was going to take, and it was easier when I counted as compared to me just holding my breath and having no idea when it would be okay for me to breath again. Each time it was about 23 seconds, and there was 1 longer one of just over 30seconds.  They took several pictures in this way, and each time the machine made a new and different, yet equally loud and annoying noise.
Then the contrast was inserted. This felt akin to slowly dipping my arm in very cold water as the contrast worked its way through my veins. I didnt really feel it through the rest of my body, mostly just the arm. Once the contrast was in they took another series of pictures, same breathing instructions, waited 2mins, and took the final series. The entire test took about 20minutes.
The pulled me out, unstrapped me, took the needle out, and I was free to put my red high heels on, change and leave.
How did I feel during all this? It felt like the world only existed in that small space, and I lost all concept of time. I didnt feel claustrophobic or anything like that, but I did feel nausuated and disorientated when it was finished.
It wasnt a hard test, and other than the multiple needles looking for a vein it was relatively painless. If they hadnt been running late I would have been at the hospital for about an hour.

The last things I have are a meeting with the psychiatrist (the appointment still hasnt been booked and likely wont be until May), then with a Doctor to go over all the test results and to determine which kidney they are taking, and finally on to the surgeons. How many surgeons and transplant specialists depends on if I am staying local, or if I am going to be going somewhere else in the country for the surgery.
I hope to be able to donate in this city as I dont think  I would be comfortable trying to recover in a hotel.
And as we get closer to being confirmed for surgery I am getting to a point where I am going to need to tell my boss. I havent said anything at this point, although I did tell her I was going for an MRI, and was 1 step away from telling her the full story. I told her about the MRI so she would know that some of this has been going on for a while, and wont be caught fully off guard when I do tell her. My husband thinks I should tell her the full story when I get confirmed, but I am leaning towards just telling her that I need surgery to remove a kidney and leaving it at that. I dont want any accolades or special treatment, and I know if I tell her it will be very hard for her to keep this between us. I know I need to figure all of this out, but I also know that it will be a while before I tell her as there is really no point until I am confirmed as a donor and the surgery is booked.
For now, I'm just happy to be back in regular clothes and out of the hospital gowns.

Deciding on the Journey

This blog is about my personal journey to donate a kidney as an anonymous donor.
I am starting this 2 months after my initial meeting with the Live Organ Donor Coordinator and figure I should bring you up to speed on how this came about and what's happened thus far.

The Decision
I have been a blood donor for several years, which started because in 2005 my brother was T-boned by a semi and needed blood. Since that time I have been donating as often as I can as it was some one's blood that helped save my brother's life. After one particular donation I was given a pamphlet for the One Match program, and I signed up. Through my research into what One Match is I came across information on organ donation.
This was something that struck a cord with me and I decided to research further. At the time I was a starving student, and unable to take the time to recover from surgery, let alone afford the time off work. But it stuck with me. My life finally became settled in December, I was done school, married, moved to a new city and was working at a new job. All of the bumps in the road had been sorted out and I finally had the stability required to revisit organ donation.

I continued to research what donation was, the risks, what life was like post-donation and through it all I decided that I wanted to do it. The city in which I live just started the Anonymous Donor program, and I am the first to go through it. I contacted the Living Donor program, and on January 25th went in for my initial meeting.


The Road Thus Far

At this initial meeting they described for me the tests I would need to go through, what the surgery would be like, what to expect in life after, and the difference that I would be making in someone's life.

For tests I would need 2 urine tests, a blood test, abdominal ultrasound, a kidney function test, and a full body scan.
Additional requirements include a meeting with a social worker, a psychologist, and a few others which havent happened yet.

I have 1 urine test left (glucose level) and the full body scan. The urine test I need to go for 2hrs after eating breakfast, which unfortunately due to a busy schedule is why I havent been able to get that one done yet.
The MRI is scheduled for April 21. I have to fast for 6hrs prior to the test, and as its in the evening so I dont miss work, I anticipate being a bit cranky.

The interesting test was the kidney function test. I was told that I needed to be well hydrated and right before going in they even had me drink water. I was given an injection of radioactive material, laid on a imaging slab and contrast images were taken for 30mins, then every hour for 2 hours. I was able to look on the screen and see the green of the radioactive material work its way through my body through my bloodstream.
That was the other "fun" part of this test. Bloodwork. Every hour for 2 hours following the injection. Just a note... I hate needles. Hate them. Cannot stand the thought of them, and I get squeamish if I see one. Any type of blood test or injection into a vein makes me nauseous and light headed. Apparently one of the reasons I had to be well hydrated is so my veins would be nice and plump, easy to stick. Right. Apparently by the time the third and final blood test was being done my veins were not in great shape as it took 3 attempts to find a vein. I almost passed out.
But I did it. Thankfully. And my understanding is that I am pretty much done for blood tests until a match is found and surgery is approaching.

The other interesting part of this process thus far was the visit with the Social Worker.
She was a wonderful lady, and I had a great time talking with her. She asked about me, my personal medical history, my family, my support systems, my husband; my reasons for donating, how I came about deciding to donate, and what I expected to get from this. She told me that as an anonymous donor I would probably never meet the recipient of my kidney, and I told her that I was okay with that. I dont feel this person would owe me anything, or that I would have some sort of say in how they live their life. The only thing I would want is that this person, whoever they might be, would do something, however big or whoever small, to make a difference in this world.
I'll fill out more of the details on this in a later post, and will continue to blog about what the road to donation is like.