Pulmonary fibrosis worsening. Need info about lung transplant

Hi @jamesdonegan, allow me to tag a few members who are familiar with lung transplant to help offer support and tips like @francisanne @thegirls @helenrivera, @chickytina, @nnelson823, @nnelson823, @ktgirl, @sidney073, @kathy22, @jackiez and others

As we wait for others to join the discussion, you may also be interested in these related discussions:
- I've been told I need a double lung transplant https://connect.mayoclinic.org/discussion/double-lung-transplant/
- What can I Expect for my Lung Transplant Review?https://connect.mayoclinic.org/discussion/lung-transplant/

James, what questions would you like to ask lung transplant recipients?

Hi James, please feel free to ask questions. I am almost 2 years post DLT🙏🏼. Living a great life now that I can breath.

Hello, I am a heart/double lung recipient in April 2021. I am doing great and living life to the fullest.
Something that one of my transplant doctors told me was that you want the transplant when you are feeling good because you will have a better outcome post surgery. It’s opposite of what I thought-I should be on my deathbed when I got a transplant. Obviously you have to be sick enough to be elevated on the list. So it’s a bit of a contradiction.
I guess that’s a long way of saying it’s better to start the process early. It takes time and you have to decide where to be listed and even be approved to get on the list.
Hope this helps.

It's a bit different for me. I had pulmonary fibrosis, which wasn't too bad until I contracted COVID. Before COVID I had about 20% of my lungs that were fibrosed. After COVID I had almost all of my lungs that was fibrosed. I was fast tracked for a double lung transplant. I was bed ridden for a month, because I could no longer make it up and down the stairs at my house and was getting worse. Lying down still I was able to get my oxygen level up to 80% on 5 liters of oxygen. I went into the hospital on 30 liters of oxygen at 100%. They were able to reduce that after a few days, but I was still on 30 liters of oxygen. I had a UNOS rating of 75 at that time. I was in the hospital for a week prior to getting my transplant. After the transplant in the hospital, I would take my pain killers and get up and walk with anyone that would walk with me. It took me a while to get back in shape to be able to live my life the way that I wanted to, but I got there. If you can do as much as you can and your afterwards will be a lot easier for you and you will be in the hospital for a shorter time.

@jackiez
Hello Jackie
Thank you so much for your response and sharing the information on the process. My pulmonary fibrosis seams to have gotten worse in the last 6 months, any advice is much
Appreciated. I now have lots of questions for my doctor at my next visit. Definitely want to start the conversation about a transplant. I’m very much afraid because I’m 67 and not sure if there’s a cut off age. I’m in good health so hopefully age will not affect the outcome. Thanks again, your sharing this gives me hope.

@chickytina
Hello Tina
Your story gives me hope, I got Diagnosed with pulmonary fibrosis two years ago and I thought nothing of it but it’s taken a turn, coughing has gotten worse, out of breath much easier. CT scan says it’s gotten moderately worse since my last scan, and now very anxious about talking to my doctor about transplants. I hope they will except me with my age
67 but in good health and shape. Lots of questions, but reading your story certainly gives me hope. Thanks again

@jamesdonegan absolutely. Feel free to ask away!

@jamesdonegan, This is my online version of a "Thinking of you" card. It has only been a few weeks since I read your most recent post, but in the world of Health and a possible transplantation, it can feel like an eternity. (at least that's my personal experience with a liver and kidney transplant)
Have you been able to meet with your doctor and get some of your questions answered?