walk it off....

listening to: "The Swarm" by Dismantled
feeling: sleepy

School started a couple of weeks ago and I've been noticing that it's been easier to walk lately. My doctors took me off Voriconazole to see if that would help and maybe it is. Most transplant patients get off that medication pretty soon after surgery but I've been on it since then so they thought maybe it was contributing to my difficulty walking. That, mixed with my physical therapy have created a positive outcome so far. It's crazy how there are so many little symptoms that doctors are completely baffled about. That's why us transplant patients have to stick together and share what we've experienced. I've got so many random things going on and it helps to talk to others who might have heard it or had it.

I am the first for a lot of things. Doctors always say, "we've never seen that before" or "that's never happened" etc. That's part of the reason I got my tattoo was because for once I wanted to do something that I actually chose to do and not that was chosen for me by fate. I understood the risks and consequences and did it anyway with the knowledge I had from researching it. Now, I'm even planning on my next tattoo on February 20th. They couldn't stop me, weee!!

That's another thing I'll vent about shortly. I love my transplant team at UCSF. They understand that I got lungs and want to live. They are there behind me every step of the way making sure I can live life but yet they can still protect me from doing anything extremely stupid. Haha! St.Joe's transplant team however is a team I do not trust with my life. Not to scare any of my friends that belong to their team but I just feel like they don't know how to handle post-transplant situations and yet are too proud to ask other teams for ideas or input. I feel bad seeing all my friends getting sick under their care. It's a long story that I could spend pages and pages venting about but I won't. I just want to say that it makes me sad and I hope that all my friends will question what is right and wrong and keep an eye on how they feel so they can catch symptoms in advance.

Now that I've had my mini rant (you don't want to hear what I really want to say haha) I found this article that is a great thing for future transplant patients. It's about freezing organs for transport and it would have been nice to have more time to get to the hospital. I loved living in San Francisco but waiting was hard with out being near my friends and my pets and in my own bed. It would have been nice to have the choice of being there or being home. Although, it was convenient to be right by the hospital all the time....


http://http//thefutureofthings.com/news/6276/frozen-organs-live-longer.html?addComment


Anyway, I'll try and write more. I like having this as a venting place for my health issues because none of my other friends really understand or want to hear about it. (Or maybe I'm just assuming that.) So, I'll make a point to write when I have something to say. Wish me luck on keeping that goal! Haha.