02/09/2011 Not a ZERO-But Happy With What I have!

So, in January I went off Prednisone-for good-finally! A year late-but defiantly worth the wait! I thought I was rejection/having more problems with restriction in my heart like I had in December went I went off the Pred., so I had an "emergency" heart biopsy for the next morning, but it showed up with the same results I have when I take my small maintenance dose (5 mg) of Prednisone (I got a 1R/1R-so still rejection). This was finally the good news I have been waiting a year for. I was supposed to come off the Prednisone last January, but because of my rejections and inflammation issues I had to go on many tapering's of it. I don't have to go back to the transplant offices until March/April and I don't have to have another biopsy until November (or unless the Allomap gives faulty results-I am not a fan of Allomap-it is a relatively new test and is still working out its kinks and I never get good results. But, hopefully since I am off the prednisone I will start getting better Allomap results).
A few weeks after the biopsy I started feeling better-it takes awhile for me to feel better after getting tapered off the prednisone-it is pretty hard on your body. I started riding my bike more, and I signed up for Team in Training to ride 100 miles in June!-a century ride! I am getting to do something that I have always wanted to do and something that most people don't have time to do. I am loving cycling and exercising! I got into cycling because it was the only exercise that was not hurting my back (laying on my back for hours during and after surgery hurt my back), but I was finally able to get a shot in my spine and it HELPED! so, I am able to do more walking an do different excercising.
I am working in speech therapy on my memory and hopefully that will help me. I don't know about it so far, but the brain is elastic so I am trying to work it out more and hopefully it will come back soon. I am taking one class this semester just as practice for next semester at SMU.
It is getting exciting to a.) be getting healthier, and b.) getting used to everything and just get into my routine and c.) being able to move on with life! I am getting more used to everything transplant related (like meds causing me to be nauseous, the pain in my legs, my migraines, and my memory). I haven't updated this in so long because I have been so busy and I am filling up my days again!

I never thought it would be this hard

Life rolled around and I got really busy and neglected my blog (while diligently reading-and thoroughly enjoying others). Lately, I have been writing in my own personal journal about my journey because I have just been having a few bumps in the road and I don't want to make this blog a downer blog, I mean to make it insightful, about the life of a young girl with a heart transplant.
I had a mostly enjoyable summer, except I am still having the pain, severe nausea, and I think the combine of these are causing exhaustion. My family members have a vacation home at the beautiful clear lake (keep clear lake green!), I ween there for over a week, I thought that being there would make me feel better, and it did a little, but it was not the magic cure my family though I was going to get from the green algae.
I think on of the hardest things about being a tx patient is that you are expected to always put on this happy face and act like you life is amazing now that you have this new gift of life. I outside world does not realize all of the complications that come with this gift and for me, adjusting to them is still hard.
Before Tx, they warn you that life will be different and you have to used to a life of a new normal, but I never in a million years would have though that a new normal would have been this (hard).
Part of the things is I have this date in my head (Nov 20th, 1 year after tx) and everything is supposed to be back to normal. I just can't get it out of my head that it is not going to be like that.
Anyways, I just started cycling (outside-I have only ridden the stationary bike-I haven't ridden on a real bike since I was like 13 years old). It is way better than the stationary bike. I love it. My goal is to do the Solvang ride November 13, 2010, which will be exactly 51 weeks post tx. Please pray for me to be able to keep on top of this and just for my over all general health. I am so lucky compared to so many of the other tx patients I know who are battling so my. Also, please pray for my family I know all of this stresses them out and my sister is in Texas-I really hope she can move back in December!