Today turned out to be an interesting day. I started off the morning with my last IV dose of Meropenem (yay!) and then headed to lung transplant clinic. There my meds were adjusted to lower my immuno-suppressants. Another yay! I am especially pleased about my prednisone dose being lowered to 15mg. I really hope that'll help with my blood sugar control. Perhaps it'll help with my current food obsession! I want to eat all the time, even of I'm full! It's getting out of control!
It was also arranged that I would receive another Magnesium IV this afternoon. My Mag is still really low since transplant but I've been experiencing more muscle cramps lately. It was in the IV Room that I heard some good news- one of the CFers on the wait list got the call today and was waiting for surgery. I even got to talk to her mom this afternoon, which was really nice. I had originally met her during my six week program as our sessions overlapped. I know she's already had one dry run, so I'm hoping these lungs are right for her! My thoughts are with her tonight!!!
Last night on facebook, my status was:
Sandy knows seven CFers that are waiting for their double lung transplants at U of A. Seven! All under the age of 31. I hope they get their calls soon.
How cool is that?
Isn't it incredible the amount of CFers on the list? I imagine other centres are similar. I am taking a guess here, but based on the amount of transplants last year, CFers make up a fair percentage of the wait list and surgeries. Maybe up to 15-20%. Of course, those seven are only the ones I've met and there could be more. I had no idea how many of us are out there, looking for lungs!
I came across this article about a personal story of CF and transplant. You may have already seen Surviving Cystic Fibrosis in Maclean's, but if not, I found it very interesting. I totally remember this girl as a poster child for CF.
I am so hopeful for a cure for CF. I want others to experience something so profound. On the other hand, it didn't come in time for me. I can't deny that I crossed the line where my lungs were so damaged that a miracle cure wouldn't be enough. I needed a transplant. A different kind of miracle. One of love and hope on my side, and sorrow and loss on the other. I hope my donor family can take comfort in the fact that they chose to donate their loved one's organs. There are lives that they are responsible for saving and changing, including mine!
Here in Alberta, there is no registry. There are no websites to sign up as an organ donor. Sure, you can sign the back of your health care card. But it is ultimately up to your loved ones, your next of kin. They can veto anything you've signed regarding your organ donation wishes. It is so important for them to know and understand your wishes so they fulfill them. I can't stress that enough! I've seen several sources saying that Alberta has the lowest donor rate in Canada, yet the U of A Hospital does the second-most lung transplants in the the country. Interesting food for thought...
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