Welcome and Update :)

Hello Everyone!

  Welcome to my blog :) I figured this would be the easiest way for me to keep everyone updated!

 

   As most of you know I was set on going to the University of Pittsburgh Medical Center (UPMC) for my second double lung transplant. Unfortunately, while we were in the process of getting everything needed to get me out there for an evaluation their head Dr. of the transplant program stepped down and a new Dr.took it over. Because of this they are prolonging me coming out to be evaluated. So we have since redirected our focus to the Cleveland Clinic. When we initially started researching hospitals with the best success rate on double lung transplant redos both UPMC and Cleveland Clinic had equal success rates. We just then chose to primarily focus on UPMC and although, we have redirected our focus on Cleveland we are still working with Pittsburgh as well. 

  I am hoping to hear from Cleveland any day now with a date for me to come out and be evaluated. Getting the evaluation is just the beginning stages of this long journey and it has already been beyond stressful– oy vey!  But, hopefully once I get evaluated (and accepted-hopefully) things will start to be a little less stressful-wishful thinking?.. Most likely! I should also hear from Pittsburgh with a date as well. Once we visit both places, we will know which one definitely feels right which will help make the decision on where to go easier.

   

  I have been feeling pretty good. Sometimes I think I feel better than I actually do – my body has adjusted to not breathing well so I will "feel" okay when in reality my lungs are working extra hard,a little to hard, for my own good. In other words I should probably wear my oxygen more often than I do. I just absolutely hate going out in public with it on but, I also hate staying in the house – total catch 22.  I had a Drs. appt the other day and I was told that I have lost some weight, I asked why because I’m not eating any less, and I was told because my lungs are working that much harder it is more difficult for me to keep weight on. I was also told that a transplant will often be put on hold until you you have a BMI (Body Mass Index) of at least 18% and right now I am only at 17% I have to gain at least 5 pounds to get back to 18% which is a lot easier said than done.

 

  I’ve also started the evaluation process at MGH and because of it I seem to have Dr. appts 3-4 days a week. Having a car that is pretty much the same age as me (1988 Buick Reatta) that likes to break down 2-3 days a week makes this very difficult. If you should ever see my on the side of the road stop and say hi, I will most likely be the only girl waiting for triple A and wearing oxygen, haha. 

 

  Hopefully this catches everyone up on me. Hope everyone has an awesome Thanksgiving, I have so much to be thankful for and I am so excited to spend time with my family and friends and all while getting to eat awesome food!

Talk to you all later~Breathe Easy,

Ashley