I know there are many variables in waiting for a compatible lung . But does anyone know the average wait time to be transplanted?
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It really depends on what your rank is. The system goes up to 100. When I was originally listed, my number was 48 (average to be listed is usually 35-50). I was given an expected wait time of 3-6 months. However, I got worse and was reevaluated as 75. At that time I was on 30 liters of oxygen and they were just trying to get me in shape to be able to sit up. I luckily was able to get a new set of lungs about a week later. I know most people are on much longer. I wish you luck. However, as many have said try to be as active as possible as long as possible. Even if you have to take breaks that is ok.
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Thank-you for your reply, I know this disease progresses as it wants to. How long between diagnosis and Transplant. Just wondering. I’m just over 2 years after being diagnosed.
I was diagnosed in July 2019 with IPF, but contracted COVID with pneumonia in November 2020. I was getting winded after just walking a few blocks or just a flight or two of stairs. However, I went into the hospital in January 2021 because I couldn't shake the pneumonia. Between the COVID and pneumonia, the damage was a lot worse. Then I finally received my new set of lungs in May 2022.
I’m happy for you and your gift of life. I’ve had all my testing done already, was considered too early for transplant last September. They are re-presenting my case this month ((Dr. Alvarez) with the hope of getting me listed. I still do not have 02, 24/7 as my Sats usually stay 92 or so at rest, but they do drop to med to high 80’s with activity. Did you like Mayo Jax ? I think thus far they’ve been fabulous!!! 6 star rating in my book!!! How were they at transplant and post transplant?
I actually didn't go through Mayo, but the registry is the same one used nationally. As far as I am aware it doesn't matter where you register in the US for your placement on the list. However, the care that you received would be the difference and if your insurance company covers where you are going. My insurance company wouldn't cover Mayo.
Okay thank-you, can I ask which facility you went to? I’m just curious, Mayo has done all my preliminary work and my insurances have covered it.
I went to Mount Sinai in NYC. It was one of the only 2 that my insurance would cover for any type of transplant. When I looked into it, the team had the best accolades. I didn't even check the other hospital to see if they actually did lung transplants or not. The pulmonologist that I had at the time saw the write-ups of the team and told me definitely to go with them. Then when I interviewed the surgeon (yes, I interviewed him), I felt comfortable with his abilities.
Again so happy for you, I don’t believe you’re home are you? Unless you live close by the hospital. I know at Mayo I’ll have to be within 20 mins. For the first 3-4 months after transplant.
Yes, the requirement is that you need to be able to get to the hospital within 2 hours of the call. I never asked about afterwards, because I live within the 2 hours (with traffic 30 minutes no traffic, but that isn't often). There are a lot of restrictions for the first year, but they do ease up some after that time. However, I am still very cautious.
I know Mayo Jax are saying 4hrs from the hospital when you get the call they have a lung for you
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