Thursday, 11 July 2013

Scary life decisions

So while I am not approved for the transplant list, I was told today that I need to stop ignoring the fact that in a few weeks I will probably have to make a decision. I will have to decide if I uproot everything and move to Toronto to wait for what could be life-changing surgery or do I choose to do nothing. I know you are thinking it would be crazy not to go for the transplant but before you decide for me, let me outline a few things first.

1) I do not feel sick right now. I realize rationally that I am not healthy and I know I am sick. However, right now I am still able to function day to day, I do not have a cold, and am not in any pain. I am able to enjoy many aspects of life and I am not stuck in the hospital.

2) Just because someone says you will probably die in the next year or so without surgery, doesn't mean that you will. I'm not in complete denial. I know I have horrible lungs, I know I have a supressed immune system. I'm just saying that sometimes people live longer than what was medically expected.

3) There is no guarantee that surgery is going to make everything better. In fact, there is a good chance that surgery will not make everything better. People die in the surgery, they die after the surgery, or they die a year later. These people might have lived if they did not have the surgery. Or they might have died anyway.

4) I am terrified that the years I might gain from the surgery are going to be filled with hospital stays, pain-filled days, and an inability to enjoy life. I do not want to swap the life I have right now with that option. What if instead I could have just lived for a few years in the stable condition I have right now? 

5) Having a lung transplant can increase life expectancy by 4.5 years. That is great. But the numbers are surprisingly not that much different. According to that study,
"After one year, 84% of patients were alive while waiting for a transplant, and an equal percentage were alive after having a transplant. After two years, 67% of those waiting for a transplant were alive, compared with 76% who had a transplant. After five years, 55% of transplant patients were alive."

So the first 2 years make very little difference in survival rate and the article failed to provide any data for those waiting for transplant after 5 years which to me isn't very helpful. I couldn't find the actual study online.

6) People die while they are on the waiting list. I would rather spend my time pre-transplant with my friends and family than in a city far away. I understand logistically why that can not happen but it makes the decision so much harder. Every time anyone asks hypothetically 'what you would do if you thought you might die tomorrow?' I have never heard anyone answer 'move to a new city and wait for something to happen'.

7) There is part of me that wants to be rejected just so I do not have to make a decision. That part of me is going to feel incredibly guilty if I am actually rejected. According to everyone on the Internet (yes Wikipedia = everyone on the Internet), what happens to you in life is a result of what you think is going to happen. I know rationally that is not how life works but I still feel guilty  wanting the easy way out so I do not have to decide.

8) The crazy part is that the easier option is to do the transplant. It is because taking action and feeling proactive is the basis of our medical system. We love to be able to say that we did everything we could for the person when sometimes the best thing to do is nothing at all. (Great article exploring that topic in the elderly but could be applied to anyone with regards to quality of life) Is it worth living a extra year or two longer if I have no quality of life? No would be my answer to that question.

All that said, there is a possibility that the transplant would be perfect, that I would be one of the lucky ones who gets another 10 fabulous years. Who knows. I could live for years without transplant or I could die tomorrow. There is no one who is going to tell me that option A would be better than option B. When I make a decision, I will never know if the one I made was the right one. Unless I am that rare random person who is going strong 20 years post-transplant. But it would be foolish to make a decision based on what happens to the 'lucky ones'.

When did life get so hard?


helen soucoup said...


~G said...

We love you Alley.. :) You'll make the right choice for you..