I called the Transplant Center this morning and spoke with the woman who has been coordinating everything for me thus far. I was looking for information on timelines and a bit more about what to expect.
I am still waiting for my psyc appointment, but that should be in May (apparently the Dr is bringing in another Dr to help with his course load as he is overwhelmed with all the refferals he is getting). The appointments with the nephrologist and the surgeon will follow within about 2 weeks, but right now they dont have an Operating Rooms open until July, so the wait time for surgery is about 3 months. I'm kinda hoping I can get scheduled for July as that still allows me to have the time off work that I need without infringing on our busy time. I know I will have to take as much time as I need to heal, and that with laparoscopic surgery I could be back within 3 weeks, but I need to be back at work, and be back 100%, before September.
My other question was about staying local vs going national. I am not opposed to going where I am most needed, but I think I would prefer to stay at home. Here I have my husband to take care of me, as well as a friend or two. I will have my own bed, and not be racking up a hotel bill. Apparently there is a very high demand for Kidneys, almost 1000, so as long as I am a match I should be able to stay here.
Part of me is still coming to terms with some of the reactions I have been getting, and although they do not have me doubting my decision or anything like that, they have made me wonder why I think so differently than other people that I know? The reactions I'm speaking about are not just ones that I have gotten personally when talking to people about my specific choice, rather from when talking about living organ donation in general. Things to ponder as I get back to my day...
Friday, April 30, 2010
Thursday, April 29, 2010
The Boss Knows...and thinks I should wait
Yesterday was an interesting conversation. I was able to sit with my boss and her husband (a rare thing) and talk about a few things that had been going on at work. After a bit of this I felt it would be a good time to talk to them about what I've decided to do.
I have to admit, I was a bit taken off guard with their reactions. I'm not sure what I expected, but I hadnt expected both of them to tell me to wait, and revisit this after a (minimum) year. They will both support me in going through this, but did say that they would rather celebrate me choosing not to go through with this, than celebrate a date for surgery being set.
I think the thought was that as the formal process has only been going on for 4 months, and I am so young (23) that I havent had the opportunity to think this through clearly. They asked how I would feel if down the road a close friend or family member (possibly a child) needed a kidney, and although I was a match, I didnt have one to give, as I had already given it to someone else. I've thought about that.
My thinking is that for certain I will be saving someone's life (or at least extending it), and there is a small possibility that someone I know will ever need a kidney, and I'm not willing to trade a certainty for a possibility. I dont think I will regret this decision down the road, I've done enough research to know what I'm getting into, what life will be like, and just something inside is saying this is the right thing to do. I'm going to trust that feeling and make it happen.
The other thing is by saving my kidney for someone who might never need it, I would be saying that the lives of my friends and family are worth more than someone elses, which isnt true. Just because I dont know them doesnt make them any less of a person or any less valuable. I also know, that life with one kidney will be normal, functioning, healthy, and long. I'm okay with that.
I firmly believe that should a situation happen where later in my life, if someone I know needs an organ, that they will get one. I believe that with everything that I am. And things have a way of working out for me, in better (and more) ways than I could have ever imagined. So I believe that this will work out, and it will be a good decision.
So the reaction wasnt what I expected, but I know that they will support me, and keep this to themselves (which is just as important as their support). I feel a bit better having told them, but know that I would have felt better if the main theme of their reaction wasnt "you shouldnt go through with this."
Be that as it may, its time to move on and get back to work as I wait for the psyc appointment to be set.
Small sidebar:
I'm not the youngest (Living) donor on record (thankfully), but I am among a total of 34,621 donors age 18-25, with 141 being in 2010 thus far (American Stats, sorry dont have Canadian ones, but will post a link if I find them).
I have to admit, I was a bit taken off guard with their reactions. I'm not sure what I expected, but I hadnt expected both of them to tell me to wait, and revisit this after a (minimum) year. They will both support me in going through this, but did say that they would rather celebrate me choosing not to go through with this, than celebrate a date for surgery being set.
I think the thought was that as the formal process has only been going on for 4 months, and I am so young (23) that I havent had the opportunity to think this through clearly. They asked how I would feel if down the road a close friend or family member (possibly a child) needed a kidney, and although I was a match, I didnt have one to give, as I had already given it to someone else. I've thought about that.
My thinking is that for certain I will be saving someone's life (or at least extending it), and there is a small possibility that someone I know will ever need a kidney, and I'm not willing to trade a certainty for a possibility. I dont think I will regret this decision down the road, I've done enough research to know what I'm getting into, what life will be like, and just something inside is saying this is the right thing to do. I'm going to trust that feeling and make it happen.
The other thing is by saving my kidney for someone who might never need it, I would be saying that the lives of my friends and family are worth more than someone elses, which isnt true. Just because I dont know them doesnt make them any less of a person or any less valuable. I also know, that life with one kidney will be normal, functioning, healthy, and long. I'm okay with that.
I firmly believe that should a situation happen where later in my life, if someone I know needs an organ, that they will get one. I believe that with everything that I am. And things have a way of working out for me, in better (and more) ways than I could have ever imagined. So I believe that this will work out, and it will be a good decision.
So the reaction wasnt what I expected, but I know that they will support me, and keep this to themselves (which is just as important as their support). I feel a bit better having told them, but know that I would have felt better if the main theme of their reaction wasnt "you shouldnt go through with this."
Be that as it may, its time to move on and get back to work as I wait for the psyc appointment to be set.
Small sidebar:
I'm not the youngest (Living) donor on record (thankfully), but I am among a total of 34,621 donors age 18-25, with 141 being in 2010 thus far (American Stats, sorry dont have Canadian ones, but will post a link if I find them).
Tuesday, April 27, 2010
One of the reasons why...
http://www.time.com/time/audioslide/0,32187,1983982,00.html
Right now I am hyper-tuned to anything involving organ donation and especially kidneys. I have been reading all about wait times and how Ontario has the lowest rate in the country for registered donors, how in 2008, there were 4,330 people on the waiting list for an organ transplant, 215 people died while waiting for an organ transplant, and various other stories which go to confirm that not many people do what I'm about to do.
There are so many stories out there about our health care system, scary statistics, and tales of woe. Heart warming stories are few and far between, so when I found this story, I wanted to post it as a reminder of why I am doing this.
I know that if it was my husband, I would be pulling people off the streets and begging them to get tested for donation. I would do anything in the world to keep him alive and by my side. We dont have children yet, but if we did it would make it all that more important to keep him alive. Dying due to a lack of organ donation is so horrible because its preventable, and its not really that hard to donate. Yes it takes time, a multitude of tests, and a bit of recovery post-op, but really, 6-10 weeks out of my life to give someone another 15years with their husband/wife/child/mother/father... thats hardly anything in the grand scheme of things. So seeing this story online this morning just reminded me of why I am doing what I'm doing, and strengthened my resolve to see it through.
Right now I am hyper-tuned to anything involving organ donation and especially kidneys. I have been reading all about wait times and how Ontario has the lowest rate in the country for registered donors, how in 2008, there were 4,330 people on the waiting list for an organ transplant, 215 people died while waiting for an organ transplant, and various other stories which go to confirm that not many people do what I'm about to do.
There are so many stories out there about our health care system, scary statistics, and tales of woe. Heart warming stories are few and far between, so when I found this story, I wanted to post it as a reminder of why I am doing this.
I know that if it was my husband, I would be pulling people off the streets and begging them to get tested for donation. I would do anything in the world to keep him alive and by my side. We dont have children yet, but if we did it would make it all that more important to keep him alive. Dying due to a lack of organ donation is so horrible because its preventable, and its not really that hard to donate. Yes it takes time, a multitude of tests, and a bit of recovery post-op, but really, 6-10 weeks out of my life to give someone another 15years with their husband/wife/child/mother/father... thats hardly anything in the grand scheme of things. So seeing this story online this morning just reminded me of why I am doing what I'm doing, and strengthened my resolve to see it through.
Monday, April 26, 2010
The Circle of Trust Grows
As I've written here before, I havent really been sharing what I'm doing with a lot of people as they tend to make a big deal out of it, and I'm not really interested in that. I just want to do my thing and move on with life, and the more people who know whats going on, the harder thats going to be.
But there are a few people I cannot hide this from, and one of those people is my best friend. I was fortunate enough to have her come visit for the weekend, and while happy-hour patio hopping on a Friday night I brought her into the small circle of people who know the full story.
I have to admit, its nice having a full 3 people who know whats going on, people I can talk to about this, and people I dont have to hide it from.
And my friend, she reacted exactly the way I needed. She was a bit shocked at first, but let me explain why I was doing what I'm doing, asked a few questions, and then we were able to continue on with our night. It didnt become this big thing or anything like that, she thought it was cool and all that, but didnt shower me with praise or anything. I dont want that. This is what I wanted and needed.
As for telling other people... I dont think I'm going to tell anyone else until a date is set for the surgery. And even it will very much be on a need to know basis.
But there are a few people I cannot hide this from, and one of those people is my best friend. I was fortunate enough to have her come visit for the weekend, and while happy-hour patio hopping on a Friday night I brought her into the small circle of people who know the full story.
I have to admit, its nice having a full 3 people who know whats going on, people I can talk to about this, and people I dont have to hide it from.
And my friend, she reacted exactly the way I needed. She was a bit shocked at first, but let me explain why I was doing what I'm doing, asked a few questions, and then we were able to continue on with our night. It didnt become this big thing or anything like that, she thought it was cool and all that, but didnt shower me with praise or anything. I dont want that. This is what I wanted and needed.
As for telling other people... I dont think I'm going to tell anyone else until a date is set for the surgery. And even it will very much be on a need to know basis.
Thursday, April 22, 2010
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.
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.
Thursday, April 8, 2010
Personal Directive Part 2
Wow. Did doing that ever mess me up in my head. I did not think that taking the time to think about my wishes and actually put them on paper would be so hard, or that it would affect me so deeply. I've talked about them before with friends and family, and was totally fine. But now... now I'm messed up in my head.
Now I want to take a look at my "List of thing to do before I Die" and start doing as many as possible as soon as possible. I want to quit my job and spend all my time with friends and family and make sure I am making the most out of my life. I know I can't do that, that I wont do that, but still... the thought of sitting behind a desk everyday when I havent seen my mother in months, havent talked to my grandparents in almost a year, and have so many people in my life that I dont know if they know how much I love them or how much they mean to me... that thought just drives me insane right now.
I just talked to my hubby and he said that he wouldnt trade what we have now for an eternity of something else, even if this is all we have. Then I started to cry.
I know the surgery is going to go well, I know I am going to get through it like the Rock Star that I am, and that a year from now you wont even be able to tell that I did donate. I do know these things, and I trust in the fact that everything happens for a reason, we just dont know it yet. For me, everything always works out for the best, always has, always will. And this is no exception.
I just need to get out of my head for a bit, I need to stop thinking about my own death and the size of my "things to do before I die" list. One of these days I will actually put that list in writing and post it here.
For now, back to work after a walk to help clear my head.
Now I want to take a look at my "List of thing to do before I Die" and start doing as many as possible as soon as possible. I want to quit my job and spend all my time with friends and family and make sure I am making the most out of my life. I know I can't do that, that I wont do that, but still... the thought of sitting behind a desk everyday when I havent seen my mother in months, havent talked to my grandparents in almost a year, and have so many people in my life that I dont know if they know how much I love them or how much they mean to me... that thought just drives me insane right now.
I just talked to my hubby and he said that he wouldnt trade what we have now for an eternity of something else, even if this is all we have. Then I started to cry.
I know the surgery is going to go well, I know I am going to get through it like the Rock Star that I am, and that a year from now you wont even be able to tell that I did donate. I do know these things, and I trust in the fact that everything happens for a reason, we just dont know it yet. For me, everything always works out for the best, always has, always will. And this is no exception.
I just need to get out of my head for a bit, I need to stop thinking about my own death and the size of my "things to do before I die" list. One of these days I will actually put that list in writing and post it here.
For now, back to work after a walk to help clear my head.
Personal Directive
As we are getting closer to actually donating, I think its time for me to think about a personal directive.
I have 1 appointment with a psychiatrist, then 1 with a doctor to confirm that all my tests are clean and I am good to go, then a final one with a surgeon. And as the lists of appointments dwindles and this goes from being something I have just been talking about doing, to being something I am actually doing, I'm not getting scared, I'm just trying to cover all my bases.
I want to be sure that in the horrible event that something goes wrong, that things are good in my life, the people around me know that I love them, and my affairs are all in order. I know things are going to go well and that all of this is just extra worrying that I dont need to do, but it helps me get in a good head space.
So today I am looking into personal directives and what I want...
The hard thing is I'm not quite sure. I'm really not. I've talked with my husband about a few parts of it, but its hard for him to talk about because he cant stand the thought of me not being there to grow old with. And frankly, I cant really either. But I know that the recepiant is to someone what he is to me, and I know I would want every elligible person on this planet to be donating if he needed an organ.
I did tell a close girlfriend of mine about the donation, and she has said that she will be there to help and take care of me post-op. Having her support meant a lot... She is a close friend and will take super good care of me. And by having that extra support I'm encouraged to think that a personal directive is nothing more than a precautionary measure, and am more okay about writing it.
It just makes me face the facts about my own mortality and being as my life plan was to live forever or die trying, I really dont like that.
I'll keep you posted...
I have 1 appointment with a psychiatrist, then 1 with a doctor to confirm that all my tests are clean and I am good to go, then a final one with a surgeon. And as the lists of appointments dwindles and this goes from being something I have just been talking about doing, to being something I am actually doing, I'm not getting scared, I'm just trying to cover all my bases.
I want to be sure that in the horrible event that something goes wrong, that things are good in my life, the people around me know that I love them, and my affairs are all in order. I know things are going to go well and that all of this is just extra worrying that I dont need to do, but it helps me get in a good head space.
So today I am looking into personal directives and what I want...
The hard thing is I'm not quite sure. I'm really not. I've talked with my husband about a few parts of it, but its hard for him to talk about because he cant stand the thought of me not being there to grow old with. And frankly, I cant really either. But I know that the recepiant is to someone what he is to me, and I know I would want every elligible person on this planet to be donating if he needed an organ.
I did tell a close girlfriend of mine about the donation, and she has said that she will be there to help and take care of me post-op. Having her support meant a lot... She is a close friend and will take super good care of me. And by having that extra support I'm encouraged to think that a personal directive is nothing more than a precautionary measure, and am more okay about writing it.
It just makes me face the facts about my own mortality and being as my life plan was to live forever or die trying, I really dont like that.
I'll keep you posted...
Subscribe to:
Posts (Atom)
