Saturday, 27 July 2013

Lets play the transplant game

Does this feel like a game to anyone else? A weird game that doctors secretly play in some basement somewhere? Lets play 'Who gets a new set of lungs?'!

My doctors have been throwing around the 'lung transplant' words for years. They would ask me if I was ok with them starting the paperwork process, to which I would say sure. Then at the next appointment three months later, they would ask the same question, to which I would reply "I thought you already did that". Then I was explained that my lung function was still slightly too high to be considered for a transplant but that they should get the paperwork ready just in case it drop down suddenly. I wanted to yell at them just to fill out the damn paperwork already!

When I was hospitalized in February, I was pumped full of antibiotics which caused my lung functions to jump up by 10%. This was great and the doctor mentioned that my lung function had improved too much for a transplant but that we should probably go ahead with the process. While she said that I was thinking 'of course you should go ahead with the process, two weeks ago you were panicking that catching a cold would be the death of me and now I'm good to go?". I was so confused. In the end, I was just on a medication high and once they were out of my system, my lung function went back to where it was before hospitalization.

Basically you have to be sick enough to require the transplant but healthy enough to survive the surgery and rehab. You also have to not have anything else wrong with you and you must be the perfect patient in every way. The Halifax doctors basically told me that you can be denied for any reason, too healthy, too sick, having something else wrong with you, not checking your blood sugar levels every day, looking at them the wrong way, etc...

Providing you aren't rejected, you move to Toronto to wait for the surgery and are started on an intense physiotherapy program. I was informed that because of all the exercise, people tend to see an improvement in their lung function causing them too become too healthy for the transplant. Then they have to wait until the lung function drops a bit but of course not too low because then they wouldn't have the ability to survive the surgery.
So your in Toronto, on an intense physio program which may make you too 'healthy' for a transplant, then someone has to die who is your blood type and body size, and you have to be the best candidate in the chosen pool of possible recipients. If there are multiple people who would be eligible and who are all around the same level of health, the person who has been waiting the longest gets the lungs. At least next time you will be closer to the top of the list!

You continue to play the 'transplant game' trying to stay in the magical zone between being too healthy and being terminally ill all while trying to be the perfect patient so one day you may one day maybe win a shinny new set of lungs.

I understand now why everyone is on anti-anxiety medication.  

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