11/15/10 Survival Mode

11/15/10-Survival Mode
I am not sure if I have written on this topic before, but even so, more thoughts came up about it when I was at a TRIO meeting last Thursday. One person there needs a transplant, but they are nervous of the surgery (which everyone is-who isn't scared of any surgery? but for anyone out there waiting for a transplant, all I can say is it was not as bad as I though it was going to be) and they don't like to take medicine (I will get to this later in the post-but I feel for them here also).
Before I got my heart transplant I steadily took more and more medication starting the January before the transplant (January 2009). From January to July I did not really feel like I HAD to take every dose. Then in July I HAD to take more medications and to function I HAD to take every dose, but I guess because of my age and my rebellious nature, every once in awhile I skipped a dose. When I skipped one of these doses I felt awful, at this point I was taking anti-arrhythmics, diuretics, K+, etc. I think though it was good to get to go through this experimental phase then because now I know how quickly I will feel sick if I miss just one dose. Before the transplant I NEVER took liquid medication, no one told me that I would have to take liquid medication after the transplant for awhile, so it was quite a surprise to me when I was given it in the hospital right after transplant. At first I almost said that I could not take it, but I decided before I made a fuss, I would at least try and take it, and I was able to take the medication. This is when I think my body was in "survival mode", I was able to do things that I would not normally be able to do, like have multiple IV's put in, and other painful things. I think at this point after surgery my body was doing anything it needed to survive and I think this mode lasted for many months after. It was a hard few months after the transplant also, the first few weeks when the tweaked my meds and I had to have a cath every week (my neck was sooooo sore) were really hard. Fore many months the all of the medications made me sick and my back was a mess. But eventually life has gotten much better and in a few days I will be 1 year out and I think I am out of this survival mode and into a more normal life mode. Now it is easy to take all of these medications. Someone was asking me yesterday how many pills I take a day, and I told them it was about 50 total (some are more than one of the same pill) and they were shocked, before transplant I would be shocked, but now I don't think my medication regimen is that bad, I am pretty used to it.
In heart news:
One of the nice things about transplant is that you have gone through all of this pain, so after you can go through nearly any painful thing. One doctor told me that an injection in my back was going to be pretty painful-I honestly did not notice it. I had to get things burned off my skin and the doctor told me to tell her when I could not handle the burning any more-it really never bothered me, I just wanted the stuff off and the procedure done so I just told the doctor to finish it so I did not have to do this again. After she said that usually people tell her to stop as soon as she starts. After getting a heart cath and a heart biopsy I feel like I could withstand just about anything.
I went off Prednisone-for the 2nd (and hopefully last) time (on Saturday Nov 13-a day to be marked in my Tx history)! I am having a biopsy on the 1st to make sure everything is ok, except for being tired (which is expected) I feel fine, no irregular heart beats, so I think all is well and I am done with Prednisone for awhile!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!