Friday, November 12, 2010

The Possibility of a Kidney Donation Trumps Regular Blood Donation

I was thinking about my "Test Day" and it occurred to me that making a blood donation next Wednesday, five days before the tests might skew the results, not to mention may leave me a little low on blood (they had mentioned the Test Day abs would take a "whole lotta blood" out). When in doubt, ask the question so I emailed my rep at the transplant centre and asked her (she hasn't asked where I got her email but google is indeed my friend!).  Turns out not only am I not allowed to donate Wednesday, but I can't until I am deemed unfit to be a donor, I quit the application process OR the kidney has been harvested and I am cleared post-op.  So sorry Canadian Blood Services, you cant have any of my O+ blood for at least about 4-6 months! My kidney is far more important.  The irony is that I am the new Blood Donation coordinator at BwB.  I guess I will just preach rather than practice.  Nothing wrong with that.

I was reading some stats today as Quebec is making some legislative changes to the organ donation process (which is awesome). Quebec currently has more than 1,200 people waiting for organ transplants. The biggest demand is for kidneys, representing more than 75 per cent of the wait list. Unless Quebecors have really "kidney harmful" habits that the rest of Canada doesn't have, I have to think the rest of the provinces have similar stats (skewed to population size of course).  That's a lot of people actively needing kidneys.  A Globe and Mail article in 2009 stated that in Canada, 35,000 people have kidney disease, and there is a chronic shortage of organs. Nearly 4,000 people are on the wait list for a kidney from a deceased person, a wait that can extend to a decade in Toronto and Vancouver, depending on the patient's blood type. Living kidney donation is an attractive option, comprising 40 per cent of all transplants last year in Canada.  Hmmm.  No wonder this is making more and more sense to me.

Thursday, November 11, 2010

Test Day

Yesterday a little after my last post I got a call from the Transplant centre. I must say the coordinator has a perfect knack for calling me at my desk at work in the 5 minutes there isn't a soul around as well which is nice. Anyway they had received my paperwork on Monday and after reviewing it have decided I am clear for the next round in the process-the half day of tests at the hospital.  She had quite a few dates in the next few weeks available and after some quick consideration I've opted to go in Monday November 22.  This decision was based largely on the fact my boss will be in Montreal at CAAMP that day and I wont have to come back to work, be deep in thought about all this and need to chat over the cubicle wall with him about other stuff.  I just know I will be in a spot where I want to reflect a little while I work, rather than chat about work fires and office politics.

As for the tests, I am to arrive at the hospital at 8AM after fasting for 12 hours (I am sure my disposition will be delightful after that long without water or food).  They'll send me down for a whole whack of blood tests.  Once I am done those I can grab something to eat and then will go up to chat with the co-ordinator about the program and get some more consent forms signed.  After that I am supposed to go to get a few other tests like X-Rays, an EKG and a MRI done (I think??) and should be done no later than about 10:30 unless there are huge wait times for any of those kind of tests.  Then I assume they take a few weeks to review the results and determine if I can move forward.  Sounds pretty simple.
I still can't talk about this at home but I guess I will just keep trying (gently) and eventually we can have a discussion about it. That's the only frustrating/sad part about this...I wish I could talk about it with more than just Sarah and Crystal.  All in good time.  I know he loves me and does support me in everything which is what matters.

Wednesday, November 10, 2010

To Tell or Not to Tell

I was reflecting this morning on what the coordinator of the Transplant program had said to me about how people do not always tell others what they plan to do until they know its for sure.  I completely get that however at the same time, the idea of this is taking up so much of my thinking time that I feel like I should be telling more people.  I also worry that if I wait to tell some people until I know for sure, it could be months down the road.  Assuming it is moving ahead, those people (namely my mother, close relatives and my boss) will definitely be miffed that I was "plotting this" without checking in with them for so long.  So when is a good time to "tell"?  What do you "tell"?  And how do you "tell"?
Let's start with the how.  Almost all of my family is in Ontario with the exception of my brother (Texas) and my quasi-in laws (Kelowna).  So a face-to face discussion with them is almost out of the question.  Email doesn't seem right either (and for those of you who know me, I think email is a solution to almost everything).  The phone seems weird (except for my mother) because I don't normally call them (see earlier point about the wonders of email) and you never know if its a good time to launch into something like this.  My boss is at least local, but finding the right workplace moment especially with how crazy it is has its own challenges.

"What do you tell" I guess depends on the level of interest expressed by the listener but you still have to go in with the right amount to let them know without freaking them out or worrying them and help them understand how it impacts them.  This obviously will be very different when dealing with my mother vs. my boss.  But there is overlap.  I want to sound confident and educated about my choice but I don't want to be encyclopedia Lauren if I can help it (I tend to do that).  I also don't want to sound too scripty.

As for the "time to tell"...obviously I am still stumped on that one.  I am starting to feel like I SHOULD be telling my mom and my boss especially.  I also feel like it might help to tell the BF's family so they are hearing it from me rather than him, in case they have questions etc. Maybe I will wait 'till I at least hear back about the forms I sent in.  That's probably what I will do.

I guess as with most of life's decisions, there isn't a rule book or a how-to guide and so much rests on instinct. 

Monday, November 8, 2010

This Is Why...

I know, I know-two posts in one day.  I am just amazed by the wealth of information and stories out there on the "net".  Today I was taking a mental break at work and came across this story on another blog.  A woman in NY who recently gave her Kidney altruistically (meaning non-directed, the way I plan to) received a letter in the mail from her recipient.  Here are some excerpts:

On Saturday, October 23rd, I pulled an envelope from my mailbox, postmarked from Bakersfield, CA. I barely had a moment to retrieve it from the box before my heart and eyes poured tears of joy. My hands shaking, my eyes crying and my heart filling with purpose. I haven't cried that hard since Ricky Martin came out of the closet. It was ridiculous and had I been in front of an audience, I would have died of embarrassment. It took about 3 minutes before I could even open it, I was admiring her handwriting and my mind was buzzing with curiosity as to what was inside. Quite honestly, I didn't care. She could have inserted a coupon for a free car wash and signed her name and I would have been satisfied. Just the very thought of receiving contact from her was very emotional for me. I had been waiting and wanting, but truly feeling like it might not ever happen.

I pulled out the notebook paper folded neatly inside and out popped a small photo of her taken with her husband and daughter. So, again, the tears were flowing like a river and I'm gasping for air. Look! - it's my recipient, there she is with my kidney inside of her!  She's real, and that's her family right there in front of my eyes! I can't believe it's real and that this is the person that is living freely with my crazy little bean inside of her. Unbelievable!

Her letter so beautifully scripted, so precise and elegant, so gracious and kind, thoughtful and caring. It was so much more than I ever had expected.

             " donating your healthy kidney to me has given me 
              a second chance at living a longer, more healthy, and 
              more fulfilled life. You, Angela are my 'Angel' and I 
              will always hold on to that."

              "...recovery for me has been going well. My labs have
               been great and the doctors are happy with my new 
               kidney function."

               "...know how grateful and thankful I am for the best 
               gift I could receive... your donation was the beginning 
               of a chain that will save so many other lives - may 
               God bless you abundantly for your act of kindess."

Two pages of sincere gratitude and honest thoughts that mean more to me than I ever imagined. After reading this, I now know that this was a big deal -  a very big deal. It's really real and I am amazed that I am sitting here today in New York, and my kidney is 2,861 miles on the other side of this country providing a new lease on life inside a woman that I have never met. It has finally hit me and this entire journey that all along seemed so simple is now so much more. I am thrilled and filled, with emotion. I am blessed and proud to have given this gift. I am so very excited to begin a beautiful connection with this woman that will forever be a part of me, this woman named Julia.

Again I am asking you, the reader, to please just entertain the thought for a moment as to how easy and possible it is to donate your healthy kidney to another that so desperately needs it.  I encourage you all to at the very least consider the conversation with yourself. You can't imagine how meaningful this experience is, and how little sacrifice you are making to provide someone with a much deserved quality of life that most of us take for granted.

This is why. Even if I never know who, or why or how it turns out...this is why.  Its for all the Julias and Bobs and Sallys and their parents, siblings, friends and kids.  And that's all I have to say about that.

Faxed the Forms!

Well I think I faxed the forms.  I stood over the fax machine at work for about 5 minutes before I felt awkward (I mean who faxes stuff anymore let alone 10 pages? People would have been wondering what I am doing!).  It appears they all went though though so I will wait to hear from the Transplant Centre again.

The one thing I am really not sure about is the whole travel thing.  While I don't mind travelling in theory, when you read the information and add it all up there are somethings that don't add up.  For example, the Kidney Foundation will cover 5 days of hotel stay and airfare.  Good right?  But another document says you cant fly for a month post-op (or maybe its 3 weeks but still...).  So let's say I  need to go to Halifax or Vancouver...fist of all I don't want to get stuck there recovering for 3 weeks-I'd rather do that at home.  Secondly if you are released from hospital after 3-5 days but cant fly for 21 but only have 5 days of hotel covered...where do you go?  And who pays for that?
If I could do it here or even in Edmonton it would be so much better.  I'd even contemplate BC or SK although the drive times are much further.  Its just not adding up but hopefully they have an answer for that.  Not worth stopping the process though.
Charlie still won't talk about it (he did ask me where I wanted my "Kidney Stuff" (the info kit) to go when he was tidying the kitchen on the weekend.  At one point I mentioned we'd eventually have to talk about it and he said "nope...just tell me where I need to pick you up from the hospital". least there is some kind of acceptance going on there!