I have Interstitial lung disease. Coughing and S.O.B upon exertion.

I’ve also have ILD and there isn’t much for us people. If you have pulmonary fibrosis they have lots of clinical trials. I was in a pulmonary fibrosi trial and the last day ready to start the medicine they said that I had ILD. so no trial. The trial that I was to go in had Bextrograst for the trial and it had some good results. And I heard that they have used it for ILD. Mayo Clinic in Jacksonville FL. won’t take in new patients. I go to the gym 5-6 days a week and walk 30 minutes to 60 minutes every time I go. Plus I do some weights. But I’ve had my shoulder replaced and can’t do heavy weights. I’m doing an exercise program with Mayo in Minnesota and that is 12 weeks. I’ll be done next week. But if you know of any trials or anything else for us ILD people I would like to know. I walk on the treadmill and outside everyday. I’m doing from 5000 to 11,000 steps a day. I use oxygen at night when I sleep. It’s hard to believe that they can’t find something to help. My doctor in Florida is worthless.

Kathleen,
I was diagnosed with IPF in December 2023, my Lung Capacity was measured at 48% with the IPF in both lungs. My Left lung was much worse than the right. I had been referred to Mayo Clinic in Jacksonville, Florida ( I live in Central Florida) and they performed an array of testing which included a Broncoscopy and Biopsy’s. Prior to this I was never ill, had never been overnight in the hospital, had never been under anesthesia, and was trying to find the reason for a persistent cough.
I get your fear, as does my wife! Since those first initial tests, and my Left Lung Transplant in April of 2024 I have had multiple Bronchoscopy’s with Biopsy’s, now they are almost routine. While any “invasive” medical procedure has its risks, I had complete confidence in my team at Mayo Jax, I had researched their performance and found it to be the highest level.
Also I was approved for both a Single Left, and Both Lung’s Transplant. After the many tests performed it was determined that my Left lung was at 30% to 35% and my Right lung was at 65% to 70%, when a Left lung was available I accepted it, and have been amazed at the results!! I feel better than I have in a very long time, and the end result has been well worth the journey!!
You will have fears, and challenging decisions to make, we certainly did. Know you are not alone in this, see if there is a support group in your area, or through the hospital, also get into a Pulmonary Rehab program, and have it tailored to your Lung Health. If you need to reach out to me please feel free to do so, no one knows your potential coming journey better than someone that has been through it. I have seen this from being a part of our Mayo Clinic Lung Transplant Support Group.
Hope this helps you, and if you need to please reach out.
Sid

Thank you for sharing with me your experience,
Did you experience
Severe coughing at times?
Sometimes I just feel ill is this part of it? Also my chest will feel tight.
Thank you ahead of time for your reply.

If you can and your doctor has not told you otherwise, do what you can to move, i.e. bike, walk, do steps, anything aerobic within your abilities that also gets you coughing up the mucus. The mucus sitting in your lungs could be damaging you more— getting it out is important, at least it was for me. My doctors have told me that my exercise has kept the disease from damaging me more than it would have if I did not exercise. I asked them why no one ever told me to exercise and they said they stopped doing it because no one listened.

My mother died of Interstitial Lung Disease and while doing so I was focused on her until she died. Following that I started to feel breathlessness and was diagnosed with Interstitial Lung Disease, my mother was diagnosed early and lasted 7 years, I believe I had already had it for a year or more before being diagnosed. My lung capacity was 21%, I was referred to a lung specialist who proved to be an oxygen thief as I had admitted to being an ex-smoker and he seemed to be dragging me along, 7 months of him doing so I awoke in Intensive Care after 5 weeks of intubation, my wife ensured I was placed into the hospital my specialist was as I had awoken hypoxic and was rushed to Emergency. I could not even lift my finger or talk when I awoke. I fought over 4 months to regain the ability to move with the help of a team of physio therapists, but my lungs were deteriorating rapidly. I eventually had to be placed on high flow oxygen to enable me to continue physio, but just standing for 40 seconds dropped my saturation to 51%. I then began to request assessment for a lung transplant pointing out how I was let down by one of the lung clinic team members. I was rushed through the assessment process and told I had a 5% chance of survival, I was persistent for the sake of my wife and kids, and I was successful. After the operation I was in Intensive Care for another month and defied the odds as I sit here almost four years later, it has been no walk in the park, but I have been given a second chance. I was one of the luckiest people ever to need a transplant, after being approved I signed paperwork related to the operation and a donor was found 6 hours later. I was operated on the day after being approved. You have to advocate for yourself and push your doctors (if that is what you want to do), my mother refused to entertain the idea of a transplant, I felt I had no choice. I am lucky I am Australian and it cost me nothing.

Kathleen,
I was diagnosed with IPF in December 2023, my Lung Capacity was measured at 48% with the IPF in both lungs. My Left lung was much worse than the right. I had been referred to Mayo Clinic in Jacksonville, Florida ( I live in Central Florida) and they performed an array of testing which included a Broncoscopy and Biopsy’s. Prior to this I was never ill, had never been overnight in the hospital, had never been under anesthesia, and was trying to find the reason for a persistent cough.
I get your fear, as does my wife! Since those first initial tests, and my Left Lung Transplant in April of 2024 I have had multiple Bronchoscopy’s with Biopsy’s, now they are almost routine. While any “invasive” medical procedure has its risks, I had complete confidence in my team at Mayo Jax, I had researched their performance and found it to be the highest level.
Also I was approved for both a Single Left, and Both Lung’s Transplant. After the many tests performed it was determined that my Left lung was at 30% to 35% and my Right lung was at 65% to 70%, when a Left lung was available I accepted it, and have been amazed at the results!! I feel better than I have in a very long time, and the end result has been well worth the journey!!
You will have fears, and challenging decisions to make, we certainly did. Know you are not alone in this, see if there is a support group in your area, or through the hospital, also get into a Pulmonary Rehab program, and have it tailored to your Lung Health. If you need to reach out to me please feel free to do so, no one knows your potential coming journey better than someone that has been through it. I have seen this from being a part of our Mayo Clinic Lung Transplant Support Group.
Hope this helps you, and if you need to please reach out.
Sid

What was the surgery like, and what was the recovery process like when you have only a single lung transplant?
Thanks.