Friday, May 24, 2013

transplant testing?

I know folks have been wondering about my transplant options. Where we left off was waiting for testing. I had the initial intake with TO and I was to move to the next step: testing to see if I really could withstand an heart and lung transplant. I was told to wait until I heard from them - also because I do not have any numbers to the TO team. They were not given to me and since I am not in their system yet, I do not exist to them, yet.
I've waited a month to find out about testing. In the meantime I started composing an email with my multitude of questions to my cardio np to see if she could bridge me to answers. I did not send it. I have been hesitant all month, wondering how on earth am I going to do this even if the answer comes back that I am able to go through this. Their initial comments were that I was an "ideal" candidate, in that I 'passed' the first stage on the way to getting listed. The next step requires more testing and acquiring what they call a support person. They will not list you if you do not have said person. That means that that person (or persons) must live with you, or you with them in To. The support person is integral to the transplant because as I read in the manual, they do everything for you that you can't do for yourself. It includes but is not limited to taking you 3 times a week pre-transplant to physio, making sure you eat, making sure that all the meds are taken, filling out numerous ongoing forms, etc. etc. There is so much work that the support person needs to do that it becomes almost a full-time job. That's why most times it's a spouse or a parent (if possible) or even a child. I did find out that the support person doesn't have to be the same person. It can be a few people on a transplant person's team but only one person can be the main contact at one time. Meaning, one person can take a one month "shift" then the next person can take the next one and on. This is relevant because in the month of reflecting on this process I came to discover that my very own wife who took a vow of "in sickness and in health" will not, isn't able to, be that support person.
At first I felt the peaceful acceptance that working a spiritual program gives one. I started thinking about people I know in TO, and the one aunt I have there. In the end, there is no one. My emails to my aunt have gone unanswered (the only means of communication I have with her) and though I have friends there, everyone has a full-time life. No one else vowed what ma belle vowed so I wouldn't dare ask anyone else anyway.
By the way, that spiritual acceptance I once felt, that has drifted. It's hard to accept that my own spouse isn't able to be that person. I realize that's a lot to ask from anyone, and it's not okay to assume it should be your own spouse, but we do that (as a society) and I do that. I'm doing that. I have to figure out another way to one, not do that, and two, find others if I am to go down this road.