What a roller coaster of a ride I have been on! Since my last post, a lot has happened. Unfortunately, the treatment that I had before Christmas, to try and stop my rejection from progressing, did not work. So, I have been continuing to get worse. My lung functions and weight have continued to decline. I just got a feeding tube placed recently, to try and help with the weight issue. Hopefully i can get some of what I lost back.
In the middle/end of January, I went to Duke, for a full week of Transplant Evaluation testing. At the time, I was on the borderline of needing to be actively listed or not. A couple weeks later I had a check in with my CF doctor in Maine. At that appointment, I had declined again. Both in weight and lung function. I got admitted to the hospital. I had my feeding tube put in, and started antibiotics. While I was in the hospital, I talked to my Transplant Doctor on the phone. She informed me that with this new decline, that It would be time to get listed for lung transplant number 2. She said she wanted me to relocate to NC, as soon as possible, so I could get Active on the list!
That brings us to now. We have been preparing ourselves, and everything else we need, to Move. We have been given a very short amount of time to achieve this all. We are moving to North Carolina this Friday (March 1st). We will be staying there until I get my lung transplant, and then for recovery afterwards. There is no set amount of time, as we don’t know how long I will have to wait on the list, or how long recovery will take. We are praying for no complications.
We are anticipating being there for at least 3 months, and it very likely may be more than that. We had to sign an apartment lease for at least 6 months down there. We will have to pay for our home expenses/mortgage/rent, etc., in both states, until we return. We also have my caregivers (husband and mother), taking unpaid time off of work, for months, to take care of me.
It’s a heck of a lot to take on. I am staying positive. I know I can get through this again. It will be a tremendous battle, but I have the fight. I need to be here. I can not leave my son this early in his life. I do not want to leave my husband a widow, or leave my family and friends without me. I play a very important role in my loved ones lives, as they do mine.
We are going to need all the help we can get, to get us through this second transplant journey, and onward. I will never be able to thank you all enough. You are all my world, my rock, my foundation, and the reason that I am still here. I am so extremely blessed, to have amazing people like you supporting me. I will never give up the fight.
If you are able, and wanting to donate towards my Second lung transplant, just click the donate tab here on this page. every single cent counts. I promise It means more than I can ever express. As usual, I am sending all my love to everyone!