Marty

Way back in 2008, my university hospital began one of the first ever ILD Support Groups opened to patient and families from other hospitals from the Bay Area and beyond. Some people would travel well over 100 miles to attend these meetings, which would feature a bit of conversation then a speaker about a topic important to those of us with an ILD. It was an education-based support group.

During that first meeting, we went around the room and introduced ourselves and our ILD. From the back of the room, I heard, "Marty and I have Hypersensitivity Pneumonitis." I was riveted as I had never met someone with my specific ILD. During the early days of dealing with the disease, I had so wished I could just meet someone with my disease or talk with someone further down the road to give me help and advice. Marty and I made eye contact. After the meeting, we made our way to each other, stood in the hallway after everyone else left and talked for over an hour. I was the first person he had ever met with his ILD. We had lots of questions for each other regarding medications, diagnosis, oxygen needs, Worker's Comp issues, possible antigen and so much more.

We became friends.

Marty was a small man, a lot older than I thought and was in good shape. He was always surprised that Dr. K. banned me from flying because of being immunosuppressed as we were taking the same medications yet he was still flying. In the summer of 2012, he flew once again to his beloved Hawaii. While there, his lungs crashed. By the time he arrived home, he needed supplemental oxygen 24/7 for the first time and he was miserable. After dealing with this for over a year, he told me that he just hated being tethered to oxygen and was going to be interviewed for a single lung transplant at my mom's university hospital. They took one look at him, said he didn't appear to be his age of 70-years old and began the testing for the transplant.

It was during this time that he remarked to me that he so wished he had never flown to Hawaii.

I think he was finally transplanted in October of 2013, we met for coffee last December and he looked so tiny. He had lost twenty pounds during the process. We had exchanged emails and he came to a couple of ILD meetings since our coffee. I wanted to be a support to him but not a pest. This past September, we once again exchanged emails and I was very concerned to learned that he had been hospitalized during most of the summer, lost another twenty pounds, was home and back on supplemental oxygen 24/7. Recently, he had lost yet another twenty pounds and was wheelchair bound. Though he tried to sound upbeat, I knew he HATED being in that condition. I comment to Michael that there was no way he was going to be able to survive that amount of weight loss while trying to adjust to a new lung. Sadly, I was right.

Marty died in late October. He death has hit me very hard. I will deeply miss him.

As I told this story and looked around the room at the ILD Support Group meeting yesterday, I realized once again that there were only a very small handful of us who were also at that first meeting. All the others were either transplanted or dead. It makes me recommit to my exercise program and continue to eat well. I think that is what has kept me alive well past my prognosis date.