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!

Friday, May 6, 2011

05/06/2011 Donor Family Ceremony-I made it into the Recipient Line!!!

By friend "Bean" and her mom Sue bk2nocal

05/06/2011 Donor Family Ceremony-I made it into the Recipient Line!!!
When I was first transplanted and was just getting into the recipient world, one of the things that I wanted most was people that were going through this with me and now I can say that after a year and a half I am meeting many transplant friends. Some recipients can get by without having to have that closeness with others who have gone through what they have to go through, but I find it so fun to make these new friends and it has been so helpful to learn so much from each other.
This last weekend was the Donor Family Ceremony that I attended for the second time this year. Last year I just sat in the crowd and watched it and even though I was on prednisone-I did not shed a tear? I don’t know how. But I was with Jackie, who was very emotional, I think maybe because even though I had to live through the transplant, I think that she was more psychologically there and saw a lot of things maybe I did not see. I think for me this is also a celebration of my life, everyday is.
This year I got invited to participate in the recipient line-meaning I got to go onstage infront of (I think it was) 300-400 donor families to show what their gift has done for others. These families were all families that had lost members from this last year and were still in pain, so I hope seeing how great and thankful the recipients are helps them-and shows them how their family members legacy is still living.

The recipient line