The Final Countdown

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.

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Late May, 2011

 

So go figure-I'm not done with tests.  In the defense of the Living Donor program at Foothills, they thought a crossmatch two weeks and a bit out would be close enough (they themselves needed to do it at that point to ensure they weren't  booking OR time etc unnecessarily).  But apparently some kind of national transplant board (or something like that) mandates that one be done within a week (ish) of the proposed surgery date. Off I go again! I should note that each time I go for these types of tests, they look at a bunch of things so it results in about 14 vials of blood being drawn. Awesome.  Good thing I'm good with needles. And at least I'm close.

I handed in my form and went to the "room" I've talked about before where one goes to wait for the blood to be drawn. I didn't have to wait long before the technician came in. As soon as I saw her I realized she was the very same technician I had on Test Day #1, way back in November. I kind of felt like I had come full circle. She carefully counted out the many vials in front of her on the tray. As she got started I commented on the number of vials and she smiled and agreed it was a lot. She then quietly asked "are you going to be a donor?". I said yes.  She asked if I knew when yet and I said "actually next week". She smiled again. When she was done taking the blood she must have counted the samples about 7 times. After awhile I glanced at her (I was curious if I could leave) and she said "I just want to make sure I'm not missing anything.  I don't want to be the one to make a mistake and cause problems for the surgery". Once she was sure she had what she needed she taped the cotton ball to my arm and said "Good luck. You re doing a wonderful thing".

I then headed off to see the living donor program coordinator for my pre-op stuff.  I had received a package the week before in the mail that was an assortment of photocopied booklets ranging from pain management to what to bring to the hospital. This appointment was to see if I had any questions about the package or the procedure. I didn't really (other than "where can I get a Walkman?" as the outdated materials had suggested I bring one for "downtime while in the hospital"). I confirmed that cell phones are okay (the manual said not to bring a cellular mobile device)  as long as they are used appropriately and quietly. Laptops are also okay but the hospital wont take responsibility for them.

I confirmed surgery timing (down to the OR around 7:30, back in my room between 1-3pm). Because I didn't get a chance to know these details sooner, I realized Charlie probably hadn't taken the best choice of days off for the week of the surgery. He was going to be off the two days after the surgery but not the surgery day itself and it was too late to change that without upsetting his employer.  Charlie is also a subcontractor so if he doesn't work, he doesn't get vacation pay or anything like that so we do have to be mindful of the lost income. I asked the coordinator if someone would be able to call him when the surgery was done so he'd be able to wrap up his day and get to me, if he couldn't get there sooner.  She said that would not be a problem at all-Foothills could call when I was in recovery then he could get to me for around when I'd be back in my room. Not ideal but who knows whether or not that will make a difference to me on surgery day.  I don know I really need him there for the 2 days after when they want me up and walking around.

Getting closer! Now if I could just find my Walkman and 'Amazing 80's' cassette, I'd be all set.http://www.youtube.com/watch?v=9jK-NcRmVcw

Fear & Dreams

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.

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May 26, 2011

I had another little anxiety moment while lying in bed last night about this "kidney thing". I don't know how the thought came about but all I could think of was "what was I thinking and why would I do this to myself.  Its going to hurt and its going to suck". What scared me more is the weird clarity I felt when having these thoughts, like the whole rest of this journey had been clouded somehow by optimism and goodwill.  I worried that going forward this was the only feeling I would have and that naturally it would only get worse with time. For some reason I thought the feeling would erase all the mental preparation and plans I had built up thus far.

Eventually I fell asleep but dreamed of nothing but kidneys, being late to the hospital and not having the right things at the hospital. I dreamt of trying to catch a bus to get there in time to prevent my bed from being given away. In one particular dream they were not going to let me into the operating room if I didn't have three books to read afterwards.  I was frantically trying to call Charlie and explain to him where those books might be (still in their Amazon mail wrappings, on the floor of the spare room as they are in real life). I woke up several times in the night very stressed, always having to use the washroom (which in my half awake state lead me to wonder if something was wrong with my kidneys-I mean why else would I have to urinate what seemed like every hour. I wondered if they were secretly angry with my decision).

I eventually woke up for good with my alarm at 5:01 AM. What a night-I was tired and felt like I had been running or something physical for hours. I got up, tripped over one of the Amazon books and started my day. In the shower I contemplated my initial fear and the dreams it created for me as I slept. Luckily the fear and anxiety had subsided for the most part and I was back to my cloudy optimism. Or sleepy optimism, depending on how you look at it. With a little over a week to go, let's hope that was it in the fear category.

The Dark Horse

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.

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May 21, 2011

It's funny how at the eleventh hour in any project or experience, something or someone comes along that surprises you. I think that is the universe's way of making you do one last shoulder check before the point of no return.  In this particular case, the dark horse that seemed to come out of nowhere was the husband of one of my closest friends.

Apparently they were watching the late evening news one recent night. I should preface this by saying that with toddler kids, the fact that they were both awake and speaking at this time of night was an event in itself. As the story goes it had been a regular evening with regular chores and family time. I was not a part of any of there conversations nor was anything related to kidney donation. The hubby, who we'll call Billy, has had actually very little to say on the subject of my kidney donation and he has known for months. Even at family gatherings or at other times when his wife brought it up as a conversation subject, he wasn't one to comment on it. Except that the other night, as they were both zoning out in front of the TV, he had something to finally say on the subject.

"Do you think we can get Lauren to change her mind?"

It's strange to have someone so close to your inner circle wait that long to voice opposition to something like this. It even came as a bit of a surprise to my friend (his wife). Billy is someone I've known a long time and I care about.  I value his outlook on things.  He's a very smart, logical guy and while I haven't agreed with every opinion he's had in the last 15ish years I've know him, I respect him greatly. So when this message made its way to me, I couldn't help but pause and think about it for a moment (or several hours actually).

Am I making a mistake? Is this a dumb idea? I was really surprised how much his opinion was causing me to doubt my decision. For some reason it was almost embarrassing to me that this was happening-like I didn't want to get caught having doubts. Was it just timing or was it because I was uncertain of my choice to donate now that it was real? What was with all this doubt? Why were these comments, out of all the ones I've received good and bad, affecting me so much? When did Billy become my voice of reason?

But I'm glad it happened. I think doubt is good when you know you’re ready for what’s next, even though you don’t know exactly how its going to go. When clarity and understanding is temporarily replaced by the shadows of doubt, the doubt can be very good at making you run through your decision one more time and review all the supporting factors (and consequences) to be sure you haven't missed anything or that the situation hasn't changed significantly. I ran through everything-from the scientific logic and statistics, to the emotional stuff. I tested myself.  I purposely read some "anti donation" web posts I found on some online forums-surgery horror stories and debates about it being unethical. I thought about the worst person in the world I could think of and then pondered how I would feel if THEY got my kidney. I went over all the what ifs, making sure I wasn't sugar coating anything too much.

While Billy's comments seemingly came out of nowhere, and I did lose a little sleep over it, in the end I think it's made me more confident in my choice to donate. I think I'm at peace now with my decision and I guess maybe I wasn't as much as I thought I was before this happened. Yet another great learning I've had along the way!

The Man in the Lab

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.

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May 18, 2011

As I mentiond before, while a virtual match has been made with my recipient, they of course want to do an official crossmatch test to ensure that Leftie will be well suited for his new home. So off I went (again) to share more blood. I picked up my form at the transplant clinic and headed down to the lab.

As I waited to hand in my form at the window, I reviewed it (as I have all my other forms).  This form was different and was specifically for crossmatch tests and looked to cover kidney, liver and bone marrow transplants. Each section was based on organ type and had an area listing both donor and recipient tests. I, of course, had the donor test checked off. As I was reviewing the forms the receptionist from the clinic came down with another stack of forms.  I made eye contact thinking I had perhaps they had forgotten to give me some other tests (wouldn't be the first time right?) but instead she peeked into the test room and handed the forms to someone in there.

It was then my turn at the check in window. The lab staff reviewed my form, my health card and gestured towards the room across the hall. This lab is different than most in the city where you wait till your name is called and they usher you into a private room the size of a broom closet. At this lab instead they have a larger room that has about 6-8 chairs set up throughout, facing all different directions with a little side table next to each. There is no rhyme or reason to which one you sit in and they don't seem to care. I've tried to sit in a different one each time just to see if my "view" of things changes. It's also kind of neat because you can usually tell exactly how long you will have to wait based on the number of technicians in the room drawing blood and the number of people who were already in chairs when you got there (plus or minus a patient who may be in the washroom). This time around there was an older lady and a middle aged gentlemen.  I sat to the left of the gentleman.

As I was getting settled with my coat and purse, the gentleman was beginning the blood draw process with his technician. He stated his name and date of birth as per the protocol. I noticed that he had a stack of test papers in front of him-it was he that the receptionist from the clinic must have brought the papers to. I couldn't help but notice that he has the same crossmatch form as I did on top of the papers.  He however had the two recipient boxes under "kidney" checked. I wondered to myself what the odds were of me sitting beside Leftie's new home. I do know that those on the transplant list have to have a crossmatch sample taken every 6 months to make sure the registry has the most up to date information on their typing. I also know (or at least think) that they would likely not schedule us to come in at essentially the same time.  However I do know that they were anxious to get the samples off to the lab by 8 AM. So was he it?

I thought about how things I've read have mentioned that part of the reason for anonymity for non-directed donors is that if we meet the donor, we might (without meaning to) judge them based on their age, how they look, their gender, their race etc. The worry is of course that the donor might say "I don't like the looks of that fellow" and then pull out of the donation because of that. I always thought that I wouldn't be that person, I wouldn't judge-but I will admit I did size the man up. But then after a few moments I found myself wondering what I was looking for exactly. He was an everyday person, nothing more, nothing less. I was indifferent. Would I be okay with him having my kidney if he were indeed the recipient? I realized (thankfully) that it really didn't matter to me what he looked like, what his situation was or his age etc. And I knew that no matter who gets it, I'm okay with the simply "giving it away" to whoever has been deemed medically most suitable.

It was one of those little tests in life that there is no way you can prepare for but its nice to know in my own way I passed. I know that odds are he had nothing to do with my donation, but it got the wheels turning for sure.

Wonderings

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.

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May 15, 2011

As I end my final few weeks with Leftie,  my mind can't help but wonder about where his new home will be (I have no idea why my kidney's persona is a he but lets go with it).  Will he be helping a woman or a man? How old will that person be? Will they live in Calgary or perhaps somewhere in the country? I wonder about their family-if they have kids, grandchildren or maybe they are single with a cat. I've thought about how long they might have been waiting for this transplant-odds are its been more than a year which I am sure has felt longer.

With transplant statistics what they are, the likelihood that its been longer is that much higher. According to the Kidney Foundations numbers for northern Alberta, as of June 2009 there were 115 people with end stage kidney disease on the waiting list for a kidney from a deceased donor just in Northern Alberta. The Southern Alberta Transplant program puts the average Alberta number at any given time at 150-200. There are many others in the process of going through the medical testing to be added to the list. The average wait time is 4 years from the time a person goes onto dialysis to receiving a kidney transplant.


I've wondered a lot about what the recipient felt when they found out there is a possible match. I have to assume they were excited but it probably was a bit surreal. A friend of mine (let's call her Sally) told me of a good friend of hers who was once in need of a kidney-pancreas transplant.  Because of his pancreas need, he was 100% reliant on a cadaver donor and was kind of permanently on standby, pager and all. Sally told me she happened to be with him when his pager went off. I got the impression from her story that it was a very emotional impactful moment to be a part of-one that she is likely never to forget and can probably still feel. I wonder if  Leftie's future owner will remember when they got the call with the same clarity. I wonder if they will wonder about me.


I also wonder how this month will go for them. Of course the big crossmatch test is this Wednesday which will tell everyone that we are indeed good to go. Oddly enough I'm not really wondering if that will go okay-my instinct says it will. Assuming that comes back negative, will the remaining weeks until surgery seem really long for the recipient? I have a feeling for me its going to fly by as there is much to do to get organized and get my life ready to slow down for awhile.


I wonder if I will be scared right before they wheel me into the OR.  That happened before one of my knee surgeries (I think the second one which occurred when my mom was vacationing in England months after my dad's death and I was relying on a boyfriend, a friend and my 18 year old brother for support and care).  I remember feeling very alone, very blind (no glasses or contacts in a very bland hospital hallway with no defining features) and very small in my hospital bed. I wonder if I will feel that way this time around.


I wonder how I am going to feel after the surgery. How much will I hurt, will the drugs make me sick, will I say something silly under the influence. I wonder when I will start to feel better and how long it will take till I am back to normal. I wonder if I will recover ahead of schedule like I seem to have after every other surgery in my life. It would suck if this is the one that ruins that streak.


I don't wonder if this is/has/will be worth it. It will be. It makes sense and it feels right. I also don't wonder if Leftie will like his new home. I think he will and I have confidence he'll know just what to do when he gets there. At least I hope so but I know its out of my hands. I'm wondering how Righty feels about all this and how quickly she'll pick up the slack (yes, she is a she).


I guess we shall see about all of it-won't we?

Crossmatch 2011

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.

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May 9, 2011

One of the last (if not only) normal hurdle to clear before the surgery is 100% a go is a crossmatch test. If I was donating to a family memeber or friend, this test initially would have been done way back in November.  Had I not been a match then and was not going to enter a paired donation program, I wouldn't have continued through to the other tests like the MRI etc.  However because "Leftie's" new home is TBD, it is a little different for me.

Basically when I started, if I understand correctly, they did take blood to be entrered into a matching system when I started but that wasn't done until much closer to the end of the process. Crossmatching is the final test of compatibility between myself and recipient. It is used to identify the presence of  antibodies that would damage the kidney (cause rejection). The basic test involved mixing the liquid part of the recipients blood (the part of the blood with the antibodies) with cells from me. If the cells get killed, there are antibodies that would cause problems with a transplant. Not good.


Based on the original sample they took last fall, I have been tentatively matched by computer to a recipient in their database. We would have been matched on blood type and tissue, both done via standard blood tests and they may have done a computer generated crossmatch as well. This next crossmatch test will "physically" confirm the match the program has made and also ensure that nothing has changed in the composition of my blood or the recipient's like the development of antibodies. Normally changes to the blood are uncommon, unless either party has been pregnant, received a transfusion or has had a transplant and/or rejection of a transplant recently. That being said, there is the rare chance that other factors could cause things to change-but I've been told that is very unusual. It's important to be sure as the better the match, the less likely the recipient is to reject the kidney.

I'll go in for this test about two weeks before the surgery as well as a slew of other blood tests to make sure I'm still okay.  They'll just look for infection, West Nile virus, pregnancy etc to be sure. Assuming that is fine, I guess we move full steam ahead to the scheduled surgery date.  They are moving ahead as though everything will come back as expected. It feels a bit weird to be "sure of a date" but still have to pass more tests.  I understand though as I wouldn't think scheduling a kidney transplant is ideally something one does last minute-you can't even get a hair appointments at a prime time in under two weeks notice unless you are lucky!

Supporters

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.

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May 8, 2011

I have a date.  Wow. That's crazy. Not only did it become more real for me but it has become very real for my friends and family. I honestly can almost see/hear the wheels turning in their heads as they try to process the infomation, the realization that I am doing this. In some there has been renewed panic (to give them credit I can see those people trying very hard to reign it it and approach me calmly). For others it seems like the news of a date has just made them want to cheer louder and root for me more. It's unlike anything I've ever experienced in my life.

One of my dear friends who has been very worried throughout the process but has still supported me wonderfully in spite of her fear, wrote me a well thought out email of 15 questions she needed to have answered to feel better about things, so she could support me better. Knowing how concerned she was and seeing how hard she was trying to wrap her head around everything to be there for me was lovely. My ex-boss, who had been so strangely quiet about the whole thing from November until now took the opportunity at the news of a "date" to express in his own way how he felt about what I was doing and how much he didn't think I was crazy for doing it. Another friend, a co-worker who has been hugely supportive for the entire journey, pulled out an entirely new story of a friend of hers who she happened to be with when he received the "call" he was getting a new organ. This story helped me appreciate what my recipient out there must be feeling right now and renewed my confidence in my choice. My little brother (okay he's 34 but still little to me) told me I was his hero. An army of Facebook friends and family sent me messages and posts filled with encouragement. The list goes on and on and I haven't even done anything yet.

You know in group activities or at summer camp when they ask the ice breaker questions like "What animal do you think you are most like?". My answer has always been the giant tortoise. They are generally solitary animals, a bit reclusive and  they do their own thing-very much like me. They exist around other creatures (and probably like them), but they keep a safe distance. Tortoises are part of the ecosystem but aren't a dominate force. In a lot of ways, tortoises are self contained units...they walk around with their "house" on their back. They aren't overly fast but as the saying goes, slow and steady wins the race. I've always seen a quiet strength in them. On another note, they also can live to be well over 100 years old, something I've always aspired to and can envision happening in my life (even with one kidney!).

I remember way back when, about a year or two after my dad died, I wanted what many slightly impressionable, slightly stupid 18-21 year olds want...a tattoo. But I didn't know what to get.  I knew I didn't want cute like a panda and I didn't want scary or "dark" (those who know me would understand that a dagger or skull on me would be almost laughable-there is nothing dark or edgy about me). I asked my boyfriend at the time what he thought.  He answered really quickly and confidently with "a giant tortoise".  I was a little surprised, having never had played the "what animal would you be" game with him. I asked him why and he said that I always reminded him of a rhyme his mother had told him when he was younger: "see the tortoise wide in girth, on her back she carries the earth". He said I am always carrying other people through things and that often I seem to have the "weight of the world" on my shoulders but I keep plodding on.  While it turns out the quote was from a Stephen King book rather than old folklore, it still resonated with me. Tortoise tattoo it was (and still is) on my lower back.

Where am I going with this you might be wondering-don't worry, this is the part where I bring it back to the kidney thing. This week, when the prospect of donating became real and a new wave of support seemed to rise up, something hit me. For honestly the the first time in my life I don't feel like the lonely tortoise, plodding along, by myself, doing my own thing. At the risk of sounding Walt Disney-ish, I feel like all the other forest creatures are walking with me, chirping and cheering me down the final stretch of  this path. People aren't just watching from the sidelines-my friends, family and co-workers are at my side, encouraging , protecting and believing in me. They are just as much a part of this journey as I am and it's awesome. I am humbled.

It's Real

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.

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May 6, 2011.

After playing a bit of phone tag with the living donor coordinator, we finally connected early Friday (today) morning. As much as I thought I was ready for everything, I was very surprised with what she had to say.

"We have matched you to someone locally and we were wondering what you thought about June XX". (I'm blocking the date for now)

No news about my last test, no preamble-just "how's June XX".  I felt like I had crossed a momentous finish line, even though in some ways I've only just begun. The coordinator stressed they did not want to pressure me but at the same time, it was slightly under a month and some things would need to be done sooner rather than later. Although I was as sure as ever that I wanted to do this, it just didn't seem like a decision one should make on the phone, in the moment without checking in with a few different people. Not that I needed permission but I felt like I needed some kind of a check mark. I told her I would call her back later in the afternoon.

I sat at my desk at work for a few minutes trying to figure out what to do next. Do I call my mom? Charlie? I instinctively opened Facebook and did a cryptic status update. I looked for my friend Sarah online...she was online but away. I noticed my friend Milton was online and quickly messaged him.  He was supportive and congratulated me (which seems strange but it was the first of several I would get Friday).

I then picked up the phone and tried to call Charlie but it went straight to voicemail. I felt like I couldn't continue on the list of people I "needed" to talk to without getting him first. I went and got myself a coffee from the kitchen at work and when I returned, he called me back.  I wasn't sure how to start the conversation (he is supportive but still seems a little weird on the subject) so I simply said "How is June XX?".

"For what?" he asked.  I responded with one word-kidney.  "Oh that.  Wow really? How much time do I need to take off of work?" I laughed and said we could talk about that later but I didn't think a ton given the schedule and his ability to adjust his days around things.

Next on the list was work - again not that I needed to ask but it felt weird making a decision that could see me off work for a couple of weeks without saying something to someone. My new boss (there was a department reshuffle over the last few months) has been supportive of the idea but was out of town on a course and unreachable. I opted to instead got to one of my primary "stakeholders/internal clients", a director, to make sure he was in line with the timing (although really, who is going to be "that person" to say no)? He reminded me there is never going to be a perfect time and that I needed to not worry about work at all when it comes to this choice. I was thinking that all along but I think I jut needed to hear someone else say it.

Then I called Mom. She was excited, nervous and worried. She was very apologetic that she couldn't be out here to support me (it will be in Alberta) and was most concerned with the logistics of how she would be notified post surgery that her girl was okay. I reassured her that we'd make sure all that was covered which she seemed satisfied with. A small part of me wonders if between now and then she reconsiders (with or without family pressure) to make the trip out here. I am okay either way with what she decides to do but it will be interesting to see if she has anyone give her a nudge to come out (Sunday is Mother's Day and she'll be with all the other hens in the family-a very logical group to peck away at her decision to stay in Ontario).

Feeling satisfied that I had enough check marks to give confirmation to the program, I waited a bit (I didn't want to seem too eager) and closer to lunchtime called them back and gave the thumbs up. Which makes it all so very real.

Pounding Heart

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.

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May 5, 2011

I came back from three back to back meetings to a brief seven second message from the transplant clinic.  I assume this means my CRP labs are back. I couldn't detect from the message if the news is good or bad and when I called back the coordinator was on another call and will need to call me back.  I cannot believe how nervous and anxious I am feeling at the moment.

I was thinking about it on the way to work this morning how important this donation has become to me. The process of testing and the idea of the decision itself have become almost living entities which I feel like I've formed a relationship with. The thoughts and feelings I've had along the way seem to have taken up more space in my day to day life than I ever could have imagined.

I went for a little walk around the floor here at work to try to calm my nerves. If she says everything is a-okay then I will be thrilled.  If she says more tests though-how will I feel? How much more of this donation/rejection roller coaster can I take? If she says no, I cannot donate, how will I feel with so much of an emotional investment made? I know part of me will wonder if I am rejected, if the reasons could have been spotted sooner. Although to be honest I still would have been fairly emotionally attached to this little "kidney thing" of mine, even months ago.

My heart is pounding. The only time its been doing it louder and faster than this is when I received the call from Global TV back in January but that was fuelled an entirely different set of nerves. I don't know why I want this so badly, why it feels so much like it was something I was meant to do but it does. I want to make a difference to some one's life. I want to give someone time back, give hope. The logical part of my brain is trying to pipe up right now that everything should be fine, everything should be able to go ahead...after all I made it to the surgeon phase right? Despite Dr. N's one concern? Or was that completely and oversight that she caught last minute (again, lol) that actually was meant to bump me back a step?

Oh how I just want to be approved.

Groundhog Day?

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.

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April 29, 2011

Remember the Bill Murray movie where he keeps living the same day over and over again?  There was nothing remarkable about that movie but it seems to be modernism for 'deja-vu".  Well in terms of tests, today was a bit of a Groundhog day.

About an hour after I left the clinic on after meeting with Dr. S, I got a call from the admin person there. "I'd like to fax you another lab form.  Dr. N wants to run a test". "What this time?" I asked, unable to remove the annoyed undertones from my voice despite my best efforts. "CRP" she chirped, cheerfully.  For you non doctors out there, CRP is our friend, C-Reactive protein.  Um what?  Didn't we do that already? I guess Dr. S had indeed talked to Dr. N about why she hadnt left notes on my file. Sigh.

"Didn't we do that already?" I asked.  "No we did other stuff but not that.".  I knew that the cheerful admin wasn't the one to have this conversation with so I gave her permission to fax the form and proceeded to write an email to the program coordinator.

"Didn't we do this already?" I typed, trying to remain positive and walk the line a bit.  I sent the email off and quickly got the reply: "No not that one". She went on to explain that way back in November, my C reactive protein had come back higher than normal. Which I already knew because we've already had that conversation (I even wrote stuff down about it when we did!).

Apparently though despite the conversation, the additional tests two months ago that tapped danced and tested for things that could impact the CRP levels but we didn't actually repeat that test. However if it comes back high again, Dr. N will want more tests.  Which again, I thought we did at the end of February.  Why else would I know the ins and out of c-reactive protein? I did a blog post about it!

I know this is all in my best interest and they want to make absolutely sure I am healthy which is fine but lets be clear on the tests we are doing! If we weren't looking at CRP in late February what were we looking at? And why couldn't we have looked at it with the other recent tests if it was a concern back in November?

After fighting with my computer to get the lab forms to print, off I went to Foothills this morning (because there is rarely a line more than 2 people) to give one more vial of blood.  There were actually 3 people head of me so i did have to wait a little bit but it wasn't a big deal. The technician admired my veins (good thing you can't get an ego about that or mine would be huge by now) and processed to mis-stick me so now, hours later, my right arm resembles that of an IV drug user.

The plus side I did get to overhear two patient companions (one a dad of an older special needs lady and the other a wife of a man with diabetes) talk about kidney transplants and how lucky they were that years later, their loved ones' "borrowed" kidneys were still going strong and there needs to be more living donors.  Maybe that was a little reminder to me to suck it up, look past the inefficiency of the testing process and remember this is a good thing I'm doing or at least trying to do.

Surgeon Time

This blog will be posted some time after it was written due to an outside directive to not talk about my living donor experience until after I have donated.  If you are reading this, it is because I have completed the donation process.

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April 28 2011

After what seems like more than a couple of months, I was back at Foothills today to meet with one of the surgeons (Dr. S), supposedly the last official step in the evaluation process. I never did write down any questions for him; I was feeling pretty calm about everything.

I first chatted with the program coordinator. She was still talking in "ifs" and "when's" -I know she is supposed to but it made the rejection fear kick in. She reminded me again that the next match period isn't until sometime in June so there was some time for more tests of required, albeit not a ton.

She left and I waited in the room for Dr. S. It was snowing...again.  I think every time I've been to the living donor program offices it has been -30 degrees and/or snowing.  Doesn't matter that its end of April...snow. I reread the liver poster on the wall-I think I have memorized the anatomy of the liver-not sure where that will come in handy as a skill. I could hear Dr. S going room to room checking in with his other appointments-he seemed like he was having a busy, frantic morning. About 45 minutes later, he paused outside of my room and came in. He looked different than the last time I saw him...he was in scrubs versus the polo shirt and khakis of our last visit. His hair was a bit wild, probably a reflection of the morning he was having. As he greeted me his face seemed to relax and he smiled, happy to see me. Maybe he was happy to have an appointment longer in duration than the quick check-ins he seemed to have had thus far.

He started by asking how I was, how work was etc. One of the things I like about Dr. S is that he seems genuinely interested in me as a person not just what we are trying to achieve-it doesn't seem like scripted small talk. From there we went on to my file.  He review it, asking the usual medical questions and summarizing the tests I had gone through and how I did on each one. He was concerned because despite the "approval" from Dr. N, she hadn't recorded any notes (grrr) which I guess was atypical. He said as far as he was concerned I was a good candidate and while he would follow up with her to see her thoughts, he believed I was good to go. He was very optimistic and for the first time in months, I felt optimistic about this "kidney thing" maybe happening.

Dr. S said that both my kidneys are the same and both only have one vein and artery each, making removal simplified compared to those people with multiple veins and arteries (it is still possible to work with donors in that situation but obviously the simpler, the better). As a result, he said if they went ahead, they'd like to use my left kidney. This would also be better for me as the surgery can be done laproscopically which is far less painful and invasive thank open surgery, and has a faster recovery time. Yahoo! I was on the fence about what my decision would be if they couldn't do this via scope-I'm glad I don't have to make that decision.

He then logged on to this very cool medical site that did a step by step breakdown of how the surgery would go-complete with pictures-both real and computer graphic models. I don't want to gross anyone out with the details but it was neat to see how they would "get to" the kidney. Obviously it involves moving the other organs that are in the way out of the way so they can have easy access. he also was able to show me the difference in anatomy on the right vs. left side so I could better understand the pros and cons each side has as a donation candidate.  I had already read about all of this but it was very neat to see at a much more granular level with pictures. At the time I remember thinking "this is cool!  I want access to this site so I can show people" but then I realized while there are a lot of people interested in how I do in this surgery, there are very few who want to know how the surgery itself is done.  Especially not with pictures.

He also did a quick physical exam-the usual listening to me breath. He checked my ears, throat check and feeling around my belly region. He took the opportunity while I was lying down to show me where on my stomach I could expect to see incisions and roughly how big they'd be. I found that helpful as it was much easier to appreciate the incision size when he traced the spots on my abdomen with his had than it is reading random measurements on a website. I have heard that each surgeon has their own preference for where they opt to cut and each area has pros and cons associated with it. While it might not be Dr. S who operates on me, it was still good to know what he would do.

Towards the end of the appointment he asked me when I'd like to do this.  I responded with a question "When do you want me to do this?  Isn't this kind of up to your plans?". He kind of laughed and didn't respond. I told him the the program coordinator had mentioned June being the next national match up. He said it was but that he was also thinking of doing something local with me-perhaps starting a chain which might take a little longer to put together. I told him I was flexible and that he should just figure out what's best. I then thought to ask him how much longer his idea would take (I mean are we talking months here?) and he said just a few weeks longer-maybe late June early July, that it depends. I asked him on what and he said the size of the chain.

"How big do you want the chain to be?" I asked.  He kind of laughed at me and made some comment about how I never have questions about the procedure itself and now I have all these questions about what he's putting together. He seemed reluctant to tell me but there was excitement in his eyes and face - maybe he didn't want to come off as the surgeon who was excited about surgeries? I don't know. He eventually answered "Four".  That's pretty neat. They probably won't tell me what it ends up being or if I am even a part of it but its a cool idea. I love the logistics behind these chains-it amazes me that places in the US have done up to 16 transplants as part of a chain in a couple of medical facilities in one city, same day. It is mind blowing the amount of planning that must go into these kind of things.

The appointment ended with his promise to follow up with Dr. N about her notes and he said the program coordinator would be in touch when they had an idea of timelines. I am feeling really good about things-maybe I am finally getting somewhere? Regardless, Dr. S made me feel better about things and back on track! Phew.