Wednesday, June 23, 2010

"When will he be better?"

A question we get a lot is "When will he be better?"
The short answer ~ when he gets a transplant...but the more accurate answer is this is something Dwayne will live with for the rest of his life.  Even after his previous transplant he took a cocktail of pills in the morning and at night to keep his body from rejecting the kidney.  He will always need to go to specialists for regular blood work to ensure things are in working order...but all of that is a joy compared to living his life without that transplant, which is why "the transplant" is the short answer.

The next question is quickly followed up with "I thought his sister was a match?" 
Well, yes she is...but there is more to it this time around.
Dwayne's body has built up a tremendous amount of antibodies.  There were the antibodies developed with the last transplant as his body tried working with a foreign organ.  There are also the antibodies developed after he had so many blood transfusions when he was sick.  The trouble for Dwayne now is that the "perfect match" is not as easy as his sister matching him.  The antibodies are very aggressive in his system and want to attack anything foreign (his blood beats up her blood - and you think it ends when they grow up - haha) making a transplant pretty difficult.

So where does that leave us for options?
Well, for any of you Grey's Anatomy fans...you may remember the ultimate kidney transplant when they had a number of patients that were willing to switch kidneys with each other?  In Canada this is referred to as the "Paired exchange program".  Basically, we need friends, family, strangers that are willing to give up a kidney for Dwayne to first be cross matched with him (you never know, you could be one of the 2% in the population!) and if that person does not match Dwayne, then they can register on the paired exchange list for Dwayne.  This information will then run through the system across Canada hopefully finding a series of "connect the dots".  One example is of a man who was willing to donate to a person in Vancouver, he matched a person in Calgary, whose wife matched a person in Toronto, whose spouse matched another person in Toronto, who matched the original patient in Vancouver.  Confusing?  Not for the transplant teams.  They ensure that all of the surgeries happen at the same time, flying the organs to the designated cities and instead of helping just one person (ie. Dwayne) suddenly at least one other person if not a chain of people get their dream of a transplant filled too!

How does this impact the donor?
Well ~ the transplant team and website have a far more detailed answer...but my "non medical" version is this.  Minimally, if at all! 
Many people can live with just one kidney.  In fact, I read recently that there are quite a few people born with just one kidney and it may never be discovered because it just doesn't cause a problem.  The prescreening is so extensive to rule out anyone who may have potential health risks where donating a kidney may not be in their best interest.  I believe the one risk is a heightened blood pressure, but again, this is part of the prescreening process.  I can not stress enough that the team at St. Paul's is thorough in their testing, but also in the information they give potential donors to ensure that any decision made is a well informed one.

The last bit I have time for today is to note the contact information...

Donor nurse coordinator ~ St. Paul’s Hospital

604 806 9027

Thanks for taking the time to read my long winded post today!  Still working my way around the "blogging" world and appreciate you reading what I have to say!

Monday, June 14, 2010

And so it begins...

After a few days of trying to figure out the world of "blog" I am attempting my first post. 

Dwayne and I like to think of ourselves as independent.  We try hard to handle his health issues on our own, not bringing down those around us.  What others consider "so sad" or "so hard" is our regular life.  We might be guilty for taking it all on and not really talking about it.  This of course drives our families crazy, but sadly has kept us from keeping in touch with people that aren't in our daily circle.  Inevitably when catching up with those farther away (or even those in Victoria we don't see often enough) the conversation and questions come up about Dwayne's health.  Sometimes I think we feel like a broken record...things are the same, yup, still not great...waiting for a miracle...etc.etc.etc.  We always appreciate all of the care and concern, we always appreciate the questions especially as people try hard to understand what we are going through...but for us it just seems hopeless sometimes and we don't like to bring others down with our stories.  So to avoid sounding negative, we unintentionally miss out on keeping in touch with some of our greatest friends & family!


I am hoping with this blog we can include those who wish to be included a little more in our life on dialysis!  Thank you for all of your support ~ Kris & Dwayne