Friday, December 10, 2010

The Good People

I promised when I started this blog that not only would it follow my emotional journey through this experience but hopefully it would also shed some light into the experiences that are "part" of the process.  So over my next few blogs I'd like to talk about my people experiences so far, good and bad.  That way if people who come across my story ever are considering doing the same thing, they get a snapshot of the pluses and minus of this process.  Today let's talk about the good.
I wrote in the beginning about my fears and nerves when it came to telling key people in my life about my decision.  As much as I have always seen myself as a very independent "lone wolf" kind of a person, obviously their opinions mattered greatly to me, hence my hesitation in letting them in on the secret.
Eventually the key people were all told and I felt a little more confident about my choice.  So I told a few more people. I'm still being selective in who I tell when for a few reasons.  The first is that you need time to have a decent conversation about it-its not something that lends itself well to elevator conversations.  And secondly I am still trying to get past my own shyness and unease with attention being on anything related to me.  As a result of this I think I personally have told about 15 people directly and a handful more have been made aware via Facebook.
I have to say I am absolutely overwhelmed by how much support I have been shown by so many people.  People have gone out of their way to share very personal stories about how kidney disease has impacted people in their lives. I've had more than one person (!!) tell me about how they themselves or their spouse have just one kidney and they are very healthy. There have been emails sent from family members and friends that have been filled with so much love and support I get teary reading them. I've also had at least a couple of friends share my story with their other friends via social media to help generate awareness and the need for more living donors. There was the crazy test Doctor and ultrasound tech who told me I was doing a good thing and wished me well so enthusiastically.  I had an amazing post dedicated to my story by Robin, a friend I haven't chatted with in over 2 years, on her blog. There have been offers from people willing to drive me to work after the surgery which isn't even a sure thing yet (I can't drive for a month). I have to say it kind of feels good as the "lone wolf" to turn around and see that I have such a wonderfully strong and supportive "pack" behind me backing me up.
Regardless of how this journey moves forward, I wanted to make sure I captured and paid tribute to all of you who have contacted me directly or even just supported in spirit by reading and following my progress.While there have been a few "negative nellies" which we'll talk about another day, the kindness I have received from people has been pretty awesome. 

Thank you so much.

Wednesday, December 8, 2010

Tests Without Results

Am I there yet?
In my lunchtime yoga class today i was pondering the "Kidney Stuff" (yes I know you are supposed to clear your mind in yoga but if you know me, that ain't happening.  At least I wasn't thinking about work).  I was thinking about how I kind of feel sightless in this testing process, as though I am wearing a blindfold or something. You see, despite all the poking, prodding, x-raying and imaging, you don't know where you stand or if you are moving ahead in the process until you get the next call from a whole new office booking another step in the process. I know with some certainty that the fact that I am moving ahead indicates I didnt epic fail any of the tests but were there any mini red flags? Am I in "normal" health or am I exceptional in any categories? 
It seems odd to me to have given over 16 vials of blood and not know a thing about what the results are. Same thing applies for all the other tests compelted so far.  Ok, I get that the x-rays just were to show that I did indeed have kidneys and that there were no heart lung issues from a tumour perspective-I didnt really need an update on that. And the ultrasound same kind of thing.  I don't know-I guess I was expecting maybe a weekly or biweekly check in from the transplant program to tell me where we are with things and what's coming up.  They did give me a list in the beginning but I've done all those tests already.  The coordinator showed me another list (I didn't get a copy) that had more of the phase 2 and 3 tests on it but things dont seem to be happening in the same order as her lists.  Like the psych test-that wasn't even on this list! The social work test was but at the very end of phase three.  But when the social worker found out I was seeing psych she panicked because I hadn't seen her yet! But when I told her I couldn't come and see her on a days notice so that I could see her pre-psych. she put our meeting off indefinately.  It's all very confusing and out of order.
I know the system is new and that these programs are all "learning" their way through this.  I am patient and I will surf my way through the system until they kick me out or deem my kidney(s) fabulous. Its just a little unnerving to feel like I am standing in the dark waiting for the next person to come along and shove me forward.

(P.S. If you use "Google Image" (what I often use to find free pics for this blog) and enter the term "Blindfold" some pretty kinky/naughty pictures come up! Good thing no one was watching me :)

Tuesday, December 7, 2010

Next Up-Renal Scan

In a little over a week I go for what I would consider to be a "phase II" test-the Renal Scan. The Renal Scan is by far the longest test I will have to do.  It involves three to four hours at Foothills (Special Service building-with the exception of the Cancer Clinic I will have been to every building on the hospital Campus after this).  They've gone so far as to tell me to bring a book.
This was also the first test where they have just "told me" rather than ask me when my appointment is and how I "have to" be there at a certain time. I guess because these second phase tests are more specialized and harder to book so they don't want to give me options in case I get picky. Although I would think most people wanting and willing to donate a kidney to a stranger are pretty "go with the flow" patient kind of people.
The test itself involves a lot of "hurry up and wait". It will start out with me being injected with very small amounts of radioactive materials (radiopharmaceuticals) which will track my organ function and structure, (which is different than x-rays which looks at anatomy). The radiopharmaceuticals are attracted to specific organs like the kidneys and emit gamma rays that can be detected externally by special types of cameras.These cameras work in conjunction with computers used to form images that provide data and information about my kidneys. The amount of radiation from a this procedure is comparable to getting an x-ray. After the first hour they'll take images.  Then I wait for another 2 hours and they take some more.  Each image session takes about 30 minutes. I'm not sure but they might do blood work each time too.
The good news is that I can eat and drink before and during the wait so I wont have to deprive myself of a morning coffee or even water or juice. I think I might even be free to wander the hospital during that time too so I can get refills! But just in case there is a gown involved I will load up my purse.
The other good news is that this is the start to a romantic long weekend with Charlie in Banff (a birthday present he got me back in October).  I so need a weekend away and I think this is our first solo weekend away which makes it even better.  As long as a few radiopharmaceuticals don't get in the way :)

Sunday, December 5, 2010

You've Asked, I'll Answer

As more people becoming aware of that I am doing, more questions seem to be coming up.  I think this is great as I am a big believer that knowledge reduces worry/fear and brings understanding and acceptance. So here are answers to just a few of the questions I have received:

Why are you doing this?
This is a big one. I don't really have a solid "two line" answer.  Its a good thing to do and I am in both a healthy and genetically safe place to do it.  If the transplant I take part in works (which there is a 95% chance of), I am saving a life.  I am also dramatically improving the quality of life for that person, giving them and their families a better day to day. So its quantity and quality thing!

Why help a stranger?
Another common one. In Ontario as of  March 31, 2009, the waiting lists for organ transplants totaled 1,667. The large majority were for kidney transplants (1,185), followed by liver (306), lung (64), heart (48), kidney- pancreas (37), pancreas (22), small bowel (four), and heart-lung (one). The first 2 groups can be helped by living donors in addition to cadaver donation (although not as ideal) but if they are on the reported list, its likely they do not have a match in their family or immediate social circle. So if you look at kidneys alone, in March of 2009 almost 1200 people in Ontario alone were depending on stranger like myself to come forward or for a cadaver donation. I know if it were someone in my family waiting for help like this, I'd be hoping for someone to find it in themselves to help a stranger.

Will it affect your ability to have kids?
I am pretty sure kids aren't in the cards for me for other reasons but this is not one of them.  I could have as many as I want with one kidney.

How does the "travel to donate" thing work?
If they opt to put me on the national registry (which I suspect they will want to due to my blood type), I may be matched with someone from another city/province and I would have to travel there. They schedule transplants every three months right now and I'd have at least a months notice of the actual surgery date. Not every hospital does transplants so it would likely occur at a major centre in Toronto, Vancouver, Halifax, Montreal etc. There are smaller centres in places like London, Lethbridge that do perform transplants but they likely wouldn't send me there. This is because the hospitals are smaller, making it harder to keep my identity and the recipient's anonymous which apparently is a must for the program before the operation.  Travel costs would be reimbursed by the Kidney Foundation of Alberta and some charities may also chip in assistance with things like flights, transportation etc. The program is very new so there are a lot of pilot programs that aren't "absolutes" for every case and may depend on timing and geography. Bottom line though is I wouldn't be out the money it costs to travel. I also wouldn't have to be in a strange city longer than about a week either (I know earlier in the process I was worried about a 3 week "no fly" rule"-apparently that's more if I was heading back to India or Germany or something)

Will you get to meet the recipient?
Before the operation no. I wont even get details on him or her. This is to stop me from changing my mind because of a preconceived idea I might have about who should get my kidney.  In other words I have to be just as OK with a 60 year old single man getting it as a 30 year old married mother with 5 kids. However they have told me that if after I am curious about who they are or if the surgery worked, they could shared some information as long as all parties agree. It sounds like its similar to my adoption search where I could opt to share as much or as little as possible and/or we could exchange a letter through the donor program or meet if all parties were willing.

More to come I am sure...