Monday, February 14, 2011

Exciting News

My friend Jonathan is getting his heart transplant tonight-Valentines day-how fitting! He was in the hospital over christmas on IV milrinone, but because he does not have an ICD he could not go home. Then he though he could stay off the milrinone for awhile, so he went home, but was a status 2, for about a month! He had to go back to the hospital last Friday to go back on the Milrinone. Then the gave him the IV pump like I had and a life vest (like I was going to get) and let him go home for 1 day for his younger brothers birthday. Jonathan is 17 years old and I meet him at my heart transplant support group when he was an inpatient and trying to entertain him on facebook on chat-I have not talked on that since highschool, he made me sign onto that lol!. Although we are a few year apart, we have a lot of sililarities! He is supposed to be in his senior year of high school, but is having to take the year off to get a heart transplant. Amazingly he is taking it in stride! I am having to do the same thing with college.
I have been talking with Jonathan and for so long about the transplant, I am so excited for him tonight and I can't sleep!-It's midnight! I am remembering what my transplant was like, how I was feeling, what the afternoon, evening, night went.

I feel like my blog is naked! I haven't taken any pictures in FOREVER and I have nothing to put on here!

So it has been 14 months since my heart transpant. I am now ready and able to start doing things that I was not able to do before my heart transplant. I have found that Leukemia/Lymphoma Society (LLS) can help me do this and allow me to give something back in return. In the last year I have been in and out of the hospital and have seen many different things. I had the unique and very difficult experience of going to the department where cancer patients were being given chemo. This experience has only added to the connection I feel to LLS. That is why I have joined Team in Training (the fundraising arm of LLS). They will prepare me to ride my bike for 100 miles around beautiful Lake Tahoe, in one day!
Since its inception the Leukemia and Lymphoma Society has raised over a billion dollars. This has made a huge difference in the survival rates of blood cancer patients. Not only does the money raised go towards research, but it also goes towards patient services. Because of the support that I received during my recovery, I have realized just how important this aspect is for patients with blood cancers.
The financial commitment that I have made is $3,500. Please visit my website, at: to donate directly to LLS via credit card and to get updates on my progress. Donations can be made by check to the Leukemia Society. And of course, your donation is tax deductible. If you would like to make a donation and are able, it would be greatly appreciated if it could be made by Monday, March 14, 2011.

Thursday, February 10, 2011

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!