One thing that the social worker wanted me to get arranged was my Power of Attorney (POA) in case the transplant is not successful. However, I have been putting it off as it is not pleasant to have to imagine and talk about my eventual demise.
For those not in the medical field, a POA is a form that states that someone else can make decisions on your behalf on the off chance that something happens to you. So medically, that means they to make the horrible decision to end or not start life support or what kind of life support. If nothing is put in writing than the person has to blindly make decisions on what the person would have wanted. It helps to write out specifics to try to minimize their guilt and decision making.
Now that I am going to be on the transplant list (or 'listed' as they call it) in October, I guess I better stop procrastinating from writing one. The social worker told me that legally because my partner and I have lived together for more than a year, he would be considered my POA. I feel that my family knows what I would want but after working at a nursing home and hospital, I have heard a lot of stories about families brawling over the decisions I guess it is good to put it in writing on the off chance that my family tries to sue my partner for the right or something equally crazy. I always thought that a lawyer had to write up the document but the social worker told me just to write something confirming that my partner will be my POA. I don't think she meant a blog post so I will actually write something down on real paper.
So my partner and I had the uncomfortable conversation about how he gets decide to take out my ventilator and feeding tube if I am unresponsive but that if I get something like a UTI that is more acute and treatable to go ahead with treatment. I'm pretty sure I covered everything but it is all very confusing. My partner seems to be comfortable with making the decisions but it is much easier to hypothesize about death when I am feeling ok. It is not surprising that people have a tough time when trying to make medical end of life decisions for another person and even worse when other family members make them feel guilty or second guess their decision.
So I have my form and hopefully it does not have to come out for a long time. I am comfortable with my decision of not wanting to live on a ventilator or respirator for a significant period of time. Of course I will have to be on one post-transplant due to my body getting use to my new lungs but if it isn't going to work, I don't want it to turn chronic. I want to have a good quality of life and be able to do things for myself. However, if I get something acute like the chicken pox or a UTI, I would like that to be treated because dying from the chicken pox* would be incredibly lame.
*I chose chicken pox because I thought no one died from chicken pox anymore. However, I looked into it and it kills about 100 Americans annually. Who knew!