Sunday, May 15, 2011

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!


  1. Allie - Thanks for sharing. I can only imagine how difficult adjusting to this life of what must seem like constant surveillance and medical concern must be for you. In many ways, I am thankful Bean is going through this so much younger as she'll never know any different. But, I am also sad that she will never know any different. Don't ever feel bad about sharing your truth. It makes others out here feel like they are not alone...and although I am sorry you have to suffer all those things, I am glad you're hear to talk about it and share with others. Hope you can get back on the bike soon!

  2. Allie....I WANT to hear the bad and the good. I want to know EVERYTHING I'm getting myself into with getting a new heart. I am waiting on an appointment for the complete workup for getting on 'the list'. I keep searching for people's experiences with heart transplants....the bad and the good. Keep telling it like it is. Your'e a big help to me :)

  3. You haven't posted in a while, hope you are well and hanging in there. Just wanted to wish you luck with school and let you know that I work with 2 nurses who are both transplant recipients and now work as transplant coordinators.

    Susan, donorcycle