ILD Annual Luncheon and Lung Transplants

I was on my way to the ILD Support Group Luncheon when I spotted Carol from my rehab class. She has not been to rehab in almost a year and we had wondered what happened to her. She looks like she is in her 20s, works full time, has a 30+-year old son and has been dealing with bad lungs since she was a child.

There she was. I called to her, we hugged and talked. She had depleted very quickly since I had see her last and was actually on her way to an appointment at the Lung Transplant Clinic to be assigned a number and to begin the waiting game. She had already jumped through all the hoops, passed all the tests and was really ready to get new lungs.

She is relatively young in the world of lung transplants. I suspect she will do very well. My fingers are crossed.

I checked into the luncheon a bit early. The expert of my disease joined our table. She was on crutches with a broken foot and announced that she had a baby just 6-months ago! She and her doctor husband are older and had never had children. Her father keeps referring to the baby as a miracle. She looked fantastic and was still adjusting to a new little one in their lives. I asked her if Dr. K. ever retired or moved to another university, would she take me as a patient. She agreed to take me on. She also shared that Dr. K. was just given a huge honor by receiving an award from the “fellows” which, apparently is a very prestigious nod to her as a teacher. A big deal. I am not surprised. She is an amazing doctor.

Marty, who has HP and a member of the support group, also chatted a bit. He is not doing well and was teary just talking about wanting his life back. He is tethered to oxygen 24/7 and is very frustrated. After our conversation, he decided to begin the first steps beginning with the interview process towards lung transplants.

The beautiful Susan is retiring next month due to her diagnosis of IPF. It is rather sad that this brilliant woman who is at her peak in a very challenging job must retire because of her health. It seems so wrong but I wonder what she will do when that page is turned. I know that she will continue to be involved in her passions.

The luncheon was inspiring. Many lung transplant patients were present, all looking fantastic and a speaker was one of the transplant coordinators. Amazing people doing an amazing jobs. It is really a team of people, from doctors to staff to RNs to researchers to the patients. All working together. As they kept commenting, they all feel that they have more than just a job and that working with the lung patients has become a passion.

It was hilarious to hear how the hospital began doing lung transplants in the 1970s. Pulmonologist Dr. G. read about one in the New England Journal of Medicine and, in his words, said, “Cool!” He phoned the doctor, related the information to one of his fibrotic challenged patients who flew to the other doctor’s hospital and had the transplants. So, Dr. G. talked a heart surgeon into doing a lung transplant with him. He had another patient who was game, it worked and he said they were friends for many years. Now remember, this was before immune suppressant drugs were even available. These patients survived for over a decade without the help of our current array of drugs.

It was after many more successful lung transplants that the dreaded memo arrived from above asking who had given him permission to begin doing lung transplants. He smiled. By then, he had a whole system in place and he was off and running. Too late to ask permission! He built the entire Lung Transplant practice at my university hospital. What a guy.

I must say that it was a clear, warm beautiful drive home through the city then along the ocean cliffs. All the windows of the car were down and the temperature was In the 80s. It was only 2:00 when Michael met me at home, we sat in the garden, turned on the Giants and 49er games after a very light dinner of Scallops Wrapped in Bacon. See you next year, Giants!

Life is pretty darn good.