Decline In Cadaveric Donors In Canada

In 1995 there were 437 diseased organ transplants in Canada. In 2005, there were only 414 diseased organ transplants. It has a lot to do with advanced medical technology. But, at least here in BC, where 85% of the population would like to be an organ donor, only 13% are registered, because they think that simply putting a sticker on your drivers license will qualify you as a donor. There is a link here to the transplant society in BC where you can go and get properly registered as an organ donor.

A Visit To The Clinic

Yesterday Sandra,and I went to the kidney clinic. We are always a bit apprehensive, because you never know what else they are going to find. However, mostly we had good news. Sandra's kidney functions have not changed since she started dialysis....between 10%-13%, which shows that so far, the dialysis works. The doctor is a bit worried about her blood sugar count, but we don't know why. Who would not have a high blood sugar count carrying 2 liters of glucose solution in the belly at all times? They still can't figure out why she stopped menstruating, as that is usually not a side effect of dialysis. On the 4th of July, we are going to the transplant clinic in Vancouver. I am again going to try to convince them to let me donate my kidney to Sandra. On the 27th. we are back to the kidney clinic in Victoria for cycler training. All this traveling can be hard on you at the best of times, never mind when you are not well.

Time For A Laugh

I find that a bit of humor always helps during dark times. Watch this hilarious video. I laughed so hard, my sides hurt. Evolution of dance: http://www.youtube.com/watch?v=dMH0bHeiRNg

The Disease Is Taking Its Toll

I have been so busy trying to advocate for Sandra, that I have not allowed the full impact of her disease to grab hold of me. Whenever I start getting depressed I try to do something to make it easier for Sandra. However, sometimes it is very hard. Especially when I see how desperately she tries to not have her disease have an impact on her daughter's life. Sandra used to be the mother who always volunteered to drive/pick up Kylie and her friends to, and from different functions, and there have always been a lot of friends in their home. Now, Sandra often have to say no, as the illness is taking its toll. Last night I cried myself to sleep. Sandra has to fill out some forms explaining the things she has had to give up due to her illness, and she asked me to help her with it. It broke my heart to actually sit down and remember all the things she used to be able to do without it exhausting her. The main change is of course, that she can no longer work. However there are so many other things, including ordinary household chores, socializing with friends....she used to love dancing for example. Everyone could always count on her to fix any computer problem they might have, but now she can only sit by the computer for short periods at a time. When it comes right down to it, her whole life has changed. It is all so unfair. But then, for whom would it be fair? I know of a little four year old girl who is going through this, and my heart goes out to her and her family. I wish I could be more positive, however, this is reality.

How Is Sandra Coping?

Considering everything, Sandra is doing quite well. We have had a few scares. The drainage bag is supposed to be clear, or it could be a sign of peritonitis. A few times it has looked a bit cloudy, just enough to make us wonder if we should call the PD team. But so far it is more clear than cloudy. She has also noticed that she does not have to urinate as often she normally does. They are telling us that is normal, as the dialysis takes care of the wastes. A huge change is that her periods seems to have stopped. Which is upsetting for a young woman. Usually the periods stop before dialysis, but returns after dialysis is started. In Sandra's case it is reversed. Sandra still experience pain at times. Mostly, now it is because she forgets to drain the tube of air, and she ends up with severe pain in her shoulder for up to 24 hrs. That usually happens when she is rushed during an exchange. Like picking her daughter up from somewhere.

Soon Ready For The Cycler

Sometime this month Sandra will train to dialyze through a nocturnal cycler. This means that a machine will do the dialysis through the catheter in her belly for 8-10 hrs. at night. She will not have to do the four exchanges per day. And hopefully she will not have to walk around with 2 liters of fluid in her belly all the time....it's like having a 4lb baby in there. As she is a night owl, Sandra is a bit worried about being hooked up to a machine for all those hours every night. However, we may find a way to get around that, by disconnecting between dwells. There is so much we don't know yet, but we are learning as we go along. I would like to send my love and appreciation to those who have expressed their wish to be tested as a potential donor, and to those who are currently undergoing testing. You are offering the ultimate gift. The process takes a long time, up to 9 months, and is nerve wrecking for everyone involved.