Transplant Appointments and mixed news

TheDisneyDoll

DIS Veteran
Joined
Mar 12, 2014
Back in 2016 I received a double lung transplant after spending three weeks on life support in a coma caused by by end stage Cystic Fibrosis.
The transplant caused a lot of other health conditions that I currently deal with including diabetes, GERD, nerve damage and a handful of other things. After going through chronic rejection my new lungs were severely damaged and i'm in consideration for a second transplant should my health decline much more (i'm slightly to health just yet to be relisted)
I was inspired after making a comment on my personal blog how I struggle with managing my diabetes properly and I got a lot of replies of people going through the same thing so I collaged together this video over viewing my appointment.





I got some exciting news in the form of being offered a drug trial but I also received some bad new. I have severe acid reflux (GERD) and it is causing problems with my lungs, weight and I may need surgery in the future to fix it.
 

sjrec

DIS Veteran
Joined
May 31, 2016
I’m so sorry you are going through all this-I so hope you get stronger and better so you can fight this. :hug:
 

PollyannaMom

I was a click-clack champ!!
Joined
May 16, 2006
:hug: Glad you got some supportive comments from others who are struggling. - Things are always easier to deal with when you don't feel so alone. I hope the new routine works out!
 
  • TheDisneyDoll

    DIS Veteran
    Joined
    Mar 12, 2014
    Well we're continuing on this journey. Tomorrow I start the evaluation process ofr a second transplant. I should be resting and preparing but i'm so nervous I can't sleep
     

    TheDisneyDoll

    DIS Veteran
    Joined
    Mar 12, 2014
    Well I started the process of being evaluated for a second lung transplant. There's nothing I can do but wait to find out If my center will list me or not.

     

    Chuck-PA

    DIS Veteran
    Joined
    Aug 5, 2000
    Wishing you the best of luck! You are a brave young lady. My wife and I find your videos quite interesting. My son is 31 with cystic fibrosis. When we transitioned child care to adult care, my son decided to be non compliant. That was 13 years ago. 3 weeks ago, his PFT’s were 30. His lungs are badly damaged in the last year from scar tissue. He was admitted for a tune up.
    His pfts went to 47. But doctor not sure if he can keep his levels around there. My son goes back on the 16th for his follow up. Our son is currently picking and choosing which meds he will do. Doc will discuss more than.
    We go to the University of Penn in Philadelphia. They told him transplants are done in Pittsburgh. In case you need another hospital.
    How did Your family deal with the news of transplant and another? We are severely depressed.
     

    TheDisneyDoll

    DIS Veteran
    Joined
    Mar 12, 2014
    Wishing you the best of luck! You are a brave young lady. My wife and I find your videos quite interesting. My son is 31 with cystic fibrosis. When we transitioned child care to adult care, my son decided to be non compliant. That was 13 years ago. 3 weeks ago, his PFT’s were 30. His lungs are badly damaged in the last year from scar tissue. He was admitted for a tune up.
    His pfts went to 47. But doctor not sure if he can keep his levels around there. My son goes back on the 16th for his follow up. Our son is currently picking and choosing which meds he will do. Doc will discuss more than.
    We go to the University of Penn in Philadelphia. They told him transplants are done in Pittsburgh. In case you need another hospital.
    How did Your family deal with the news of transplant and another? We are severely depressed.
    If it’s any comfort I think most all of us CFers go through the phase of noncompliance. What helped me get through it was learning and understanding what each med does. When you can’t feel change or something working it’s hard to take the time to do all that so learning was my turning point.
    But I also did all that way younger though.
    I was actually listed for transplant for the first tim when I was 8. My PFTs has dropped into the teens and so they sent us off to St. Louis.
    I don’t know what my parents thought or how they reacted I was just captivated by this cool new hospital.
    I know when it came down to decide whether or not we were going I consider being listed we had some really serious conversations. It was something we kind of decided as a family but it was my decision in the end to agree to be listed. I was taken off the list around 17 for being too healthy.
    Going through the process as an adult was completely different. I had never met the transplant team at u of m nor was transplant more than a whisper In my appointments.
    I had been pretty stable for a while, the day my health really dropped from under me my doctor had just said something along the lines of “if we can just figure out what this infection is you should still have a good two years before we consider a transplant “
    He left my room and not even 35 minutes later I just had a spell where I couldn’t breathe so the rushed me over to the icu and put me on a high flow.
    I didn’t sign the transplant papers until the doctor in the icu told me he thought I’d make a great candidate for transplant and I just trust him. I was retaining g Co2 really bad so they made the decision to put me on ecmo. I wasn’t allowed to walk Or even bend my legs because of where they had to put the ecmo lines, so they kept me in a coma for comfort.
    I was on the list for three weeks in a coma and doctors thought I was getting to weak and they were going to take me off the list on Friday morning, and my call came Thursday night.
    If you don’t believe in miracles I don’t know what to tell you :)

    The lungs were good for 1.5 years. With the rejection it was so similar to when my first lungs failed I just woke up and couldn’t breathe. It wasn’t as severe as the lung failure but the added anxiety and PTSD didn’t help.
    I was supposed to be moving to Florida the next week to start my new full time job I. The magic kingdom at disney world. Like my biggest dream come true, but it turned out to be antibody mediated rejection.
    So it meant instead of working at Disney I got to do pheresis treatments to clean the bad antibodies out of my blood, and then I did a few rounds of chemo drugs to keep my immune system extra suppressed.
    Before the rejection my PFTs were 93%
    Come September they were about 23%.

    I can honestly say as a family it’s devastating. I mean we planned all my end of life arrangements and now it feels like we have to have these conversations again.
    And I just thought I’d have more time to be healthier. Most of my first year was spent doing rehab, I had to learn to walk again because of that coma. I did get to do some great things with the time I had though.

    Second transplant right now is still in limbo. If u of m won’t accept me I really want to look into Duke, I know several people who have had multiple lung transplants there, even thirds. But my sisters are juniors and seniors this year and if I have to move it would mean my mom or dad would go with me and I can’t uproot my family right now like that. So I don’t know.
    Hopefully u of m will take me back and the next lungs will give me more time to live again.
     
  • Chuck-PA

    DIS Veteran
    Joined
    Aug 5, 2000
    Thank you for responding to my post. How long did you stay in the hospital with your new lungs the first time? The doctors told my son, that someone would have to be with him 24/7 for the first year.
     

    Chuck-PA

    DIS Veteran
    Joined
    Aug 5, 2000
    My son had a great visit. He gained 8lbs. PFT’s were 48%. Over the past two weeks, he said he did Tobi 11 times and Pulmozyme twice.
    I noticed his voice is sounding raspy like yours. Is that because of CF?
     


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