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

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

I had IDF and pulmonary fibrosis before having a double lung transplant (you can see my story). I have had many biopsies. In fact I just had another one last week with a bronchoscopy. There are risks associated with anytime that they give you anesthesia. They put you under, perform the procedure, and then wake you back up in the operating room. Due to having the tube down your throat, you have a sore throat for a couple of days. It really isn't painful, just sore. They will tell you what time you can have something to eat and drink. If you have hot soup or tea afterwards, it is supposed to help it heal better (I just never tend to).
I wish you luck and hope that you don't worry too much. Remember to give your worries to God, because you worrying about it won't help.

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.

Iam happy yo hear that you had a good outcome.
My oxygen rarely drops below 87 except when I exercise.
You helped me too see that mine isn't as bad as I thought it was.

Thank you. You have put my mind at ease.

Thank you for sharing your story.
After reading a few messages, I believe that I am not in as bad a shape as I thought I was.
I will take it a day at a time and try to stay positive.

Staying positive is the best approach! It will help create positive results!!

It helps to read positive stuff! thanks

I have gone through the same process including the lung biopsy. The prognosis is what it is. There were moments of sheer terror but for the most part I am pretty calm and in the zone about 98% of the time. I see the toll on my wife and that makes me sad. I told her this would be worse if it was her that was sick. I guess after 49 years we are pretty tight and I can tell you any space there was between her and I when I got diagnosed, Evaporated!
I have read a lot and started on a spiritual path several years ago when I was still healthy. This accelerated that considerably-as it is said many places suffering leads you to the source whatever you think that is.
I also, work out 6 days a week with my oxygen tank on, although at a greatly diminished capacity. Any dignity I had prior to this is gone....lol! Strange I was always a bit too concerned about how I looked anyway. This has helped tamp down the ego which was much needed. That doesn't mean give up or give in.
I have someone who talks to me now although I can't see him. I will give you an example, the other day I was feeling a bit down and I thought "I can't do so many things that I used to do" and immediately someone said "why don't you be grateful for the things you can still do". I keep looking around the room but there is never anyone there. Any thoughts who this could be? I hope he speaks to you my friend and God's speed.