I got a call from my transplant cordinator last night that I am still at 1R status (meaning some rejection). She is going to chat with my doc to get a game plan on when they want me to come in for another biopsy or what to change my meds to. The reality is that predinsone probably helps but I can’t stay on that forever because of how it destroys your body. I trust that they will make the best decision and if they are not worried at this point there is no sense in me getting worked up either. I feel fine and they said as long as I am not symptomatic that they are ok with not treating. On that note I had a wonderful work out at cardio rehab this morning. I spend most of my time on the treadmill going the fastest I have ever gone (3.6 on speed). I didn’t feel tired at all and actually didn’t want to quit but my time was up.
This afternoon I have been working on establishing the non-profit, which I think we have named “Young Adult Heart Foundation”. We are still open for suggestions for the name but so far that is what we are leaning towards. I have applied for an EIN and next will establish a domain to start our web site.
I also started writing the forward for Dane and my “Heart Healthy on a Budget” cookbook. He is doing such a good job at creating things to put in the book, and I really think he enjoys it too! Which brings me to my next discussion point.
First of all….I have one of the greatest gifts in life to be thankful for and I TOTALLY AM!!! BUT does that mean I have to gorge myself for the next 4 days!!???? I HATE that tradition. Why can’t it be I am thankful to be alive and eat a healthy meal to celebrate that or donate food to a local shelf and eat a normal fun meal? And why does a day of thankfulness have to be followed by more gluttany of SHOPPING!!! I am over it already. I mean that is where all the stress is!!! Stastically the day after Thanksgiving is the busiest day in the ER for cardiac patients. ISN’T THAT CRAZY!!! I challange people to update the tradition while still keeping hold of the origional meaning of the holiday. I am excited to see family and be with friends and am THANKFUL they are in my life and that I am alive, but that is where I stop.
Second, I have been warned by other transplant patients. The first holiday season after transplant is nearve wrecking. Because so many people maybe haven’t seen you and want to know what it is like and how you are doing. I get totally it. I give you guys one year. Then I want to be a normal part of the family. I know it takes some serious mind shifting (trust me my immediate family still struggles with this), but now I am just as health if not more than anyone else!! I am willing to tell my story over and over again to anyone that wants to know, but I don’t need special treatment and if I do I will let people know 🙂
Ok, back to working on the non-profit and book stuff. Maybe some snuggling with Lizzy but not Momo:)