Duke Transplant Evaluation Decision - Friday August 13th
All week I've been taking stock of last weeks evaluation, discussions, etc. If nothing else it's a way to pass the time until I get "the call". Now this call is not "THE CALL" (the call that a new set of lungs is waiting for me) but it is still an important call none the less. This call will reaffirm or change my thoughts on where I'm at in the transplant process. Currently I'm thinking that I'm getting closer but probably have at least a year or maybe two until it's time to get listed. My health is at the point where this could change suddenly given another big illness or two. My local doctors think about the same as I do. So, will the Duke docs make the same conclusion???
Well the call came at the most interesting of times. After being out of town in NC for a week and returning to finish off the deck we/Randy has been building, we hosted 15 or so at our house for two days of Phish concerts. Honestly sometimes I wonder when I'll have time to get transplanted. Anyway, the call came on Friday just as we were loading up the bus to go to the show. It was the last possible moment I was home before leaving for the night. But it was also the best possible moment for it to come. It relieved that sense of waiting hanging over my head all week and let me enjoy the rest of the night.
Lauren the pre-transplant coordinator made the call. Just as I expected they don't think I'm ready to be listed yet. The gameplan is to do the following:
1) Have an endoscopy & colonoscopy here locally to further investigate my GI issues.
2) Start on a drug called Reglan to help my esophogus heal.
3) Come back in 3 months for follow up and additional tests at Duke.
Whew what a relief! As usual things are what they are. In this case they are also exactly what I need :) Now back to life.
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Glad to hear you don't have to have new breathers yet. You'll be so glad you are already evaluated when the time comes for your tx. I waited too long and was sooo sick I thought I wouldn't make it through all the testing. I love your day by day evaluation testing breakdown. It will really help others facing their own tx journey. I Love Duke and am so glad I chose to come here. Now I'm looking forward to getting released so I can go HOME! Have A Great Week and Weekend! :)
ReplyDeleteHi Steph,
ReplyDeleteI just found your blog from JamieBug's links. Our stories are pretty similar. I am 40 (YAY!) and currently a pre-transplant pt at Pittsburgh. I have been seeing them for 2 years, not listed yet. My fev1 is around 29%. I totally understand finding the balance in this gray area we are in. I want to keep my lungs as long as possible but I also don't want to push my luck! It is a tricky thing to balance physically and even more so mentally.
I would love to know what yoga you do. i would like to add yoga to my current workout regimen.
I look forward to getting to know you and hopefully sharing this journey we are both on.
Hugs,
Debbie