It’s not always easy!

These are some of my transplant buds-Evan, Venessa, Jonathan, and Me.
05/07/2011 It’s not always easy!
Update: 05/15/11 So this post is not the upbeat post that I usually write about and many people may not like it, so if you don’t like reading about that kind of stuff please just pass over this post. I was not even sure if I should post this because I am not trying to complain-so please do not take it that way, I am just trying to give insight into the life of someone with many awkward doctors appointments
On Saturday I was supposed to go on a big ride with Team in Training. I was really excited because Tuesday I had an amazing ride (like best time) and Saturdays ride was going to be on “home turf”. But I woke up and the accumulation of my medication side effects over a number of days were too much to handle and I just could not do the ride-then because I could not do the ride I was I was depressed/mad. This is the second ride in a row that I have missed as a direct cause of my transplant. It was just a lot to handle-for me at least. So back to my original post:
Since I became a transplant patient I feel like I have had to go through some things that have been pretty hard for me and I feel like each time I write it must be positive, but not all aspects of my “new life” have been positive. For example: during my surgery my sternum (the “breast bone” or the bone that connects the ribs) was cut-or I think it was really like skill sawed apart. They put it back together with little twist tie wires. I had an amazing, world class surgeon, so you would think that this would look beautiful, but honestly it looks like twist ties that goes around bread and they aren’t even. The reason I am even talking about this is that ever since surgery my sternum has been really uncomfortable, sometimes it feels like some of the little twist ties are poking out and kind of hurting me-they are in not means killing me, it is just annoying.
Before I had my transplant, I was very intelligent, but from the surgery (my brain got a little messed up with the heart lung machine) and my medications I am no as “on top of my game”. So I am being seen in the memory clinic/speech therapy. Here you go over everything that you are struggling with your memory and try to figure out ways that you will learn to compensate. To do this you have to tell the clinician everything you are having trouble with, for me this can be really embarrassing, it is telling someone you don’t really know things like forgetting to put on deodorant, or locking you key in the car all the time-or the worst for me was when she had me just write and then spell checked it. I did not have that many mistakes, but the ones I did have were basic, and made me feel really bad that my memory is where it is. It is hard to be so open with someone you barely know and I think I will have probably about 10, 1 hour sessions with.
So seasonally transplant patients go to “clinic”. Where before hand they get blood test, sometimes biopsies, maybe echoes, etc. and they get they results and go over EVERYTHING in clinic. Clinic is usually fun to go to because everyone is nice and it’s like “Cheers”- “Where Everybody Knows Your Name”. It’s fun to catch up with all the nurses and usually by the time you get there all the testing is over with! But then the Nurse Practitioner or Doctor comes in and starts asking you about EVERYTHING-and I mean EVERYTHING! Everything from what my bowel movements are like, to nausea, to depression. It is always so uncomfortable and I am always just waiting for the moment that the appointment finally ENDS! And it is a huge sigh of relief that I don’t have to reveal anything else about myself that I feel uncomfortable about, and because my mom and I get to go do something fun outside the hospital before we head home.
I am still getting used to the new “normal” of life: exhaustion, nausea, pain but there is no way I would exchange it for that old, damaged heart. This heart, Ruben’s Gift has been amazing and I have been able to do things I have never been able to do in my whole life, and before I received it I never imagined I would be able to do things I am doing now. Today I was able to climb the hills along California’s Highway 1-they are CRAZY!
And here is the Northern California TNT cycle team for spring 2011! They have been a blast!

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!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!