Yesterday's ILD Support Group meeting featured Ken. His grandfather had IPF in 1975 and died three years later. He always felt that he might get a lung disease and his symptoms began in 2005-06 when he noticed he was short of breath climbing stairs and also had some heart palpitations. He had always taken care of himself and worked out, so this was very odd. I often wondered why I also was walking 5 miles, three times a week at a 14-per minute mile pace yet was short of breath running the stairs at work. He answered that mystery by telling us that the thigh muscles are used to propel our bodies up stairs and that those huge muscles require a lot of oxygen to perform that task. Thus, the shortness of breath.
He was 46-years old when he met with his father's cardiologist in Wisconsin. The doctor noticed that he had clubbing of his fingernails, ordered an x-ray which revealed massive scaring of the lungs. He met with a doctor at Mayo Clinic who didn't even suggest the option of transplants but told him he had IPF and 3-5 years to live but probably closer to three years. Ken was unimpressed.
His brother did a lot of research on lung doctors and transplant programs and Ken ended up at my university hospital. He and his partner of 41 years moved to the Bay Area because of their research and began the evaluation process for lung transplants, which took several months. They discovered that he also had scarring of his liver but it was a benign condition.
In July of 2011, he was in Wisconsin when he noticed a big decline. He had been on a cycle of plateaus then downturns but this was different. He was on 10-12 liters of oxygen 24/7 and just did not feel well. He was also housebound as he needed so much oxygen that he had to pull the big tanks with him wherever he went, which he found embarrassing. Though he continued to still work out, it was very minimal. He mentioned that it was very important to the entire process to continue to keep moving both pre and post transplant.
Back in San Francisco, he was placed on the lung transplant list on August 19, 2011.
Nineteen days later at 2:30 in the afternoon, he got the phone call. He was shocked that it was so soon.
At 6:30PM, a doctor was sent to evaluate the lungs of the donor who was in Reno, NV.
At 9:30PM, the doctor declared a match and the lungs were on their way. Ken and the donor were the right blood type, height, antibodies and chest size though they ended up shaving a little off the bottom to fit correctly!
At Midnight, Ken was rolled into surgery and it began at 1:30AM.
Tomorrow, I will blog about what happened post-transplant but I do want to write about the donor. He wrote to the family and has been in regular contact with them. The donor was a 33-year old woman from Napa who was having fun at the infamous Burning Man festival in the Nevada desert. She went for a bicycle ride, made dinner then began to not feel well. Vomiting began then she noticed she was losing feeling in her legs. She was airlifted to a hospital in Reno where she fell into a coma. Later, it was discovered that she had a cerebral hemorrhage. On her California driver's license, she had a donor sticker which allowed for her organs to be harvested. Her liver, panaceas and kidneys were also donated. Ken was the only recipient to contact the family.
As a side note, Ken asked to see his old lungs but later decided not to see them. The explanted lungs were biopsied and it was discover that he not only had IPF, which would have been the factor to kill him, but also had Non-Specific Interstitial Pneumonia (NSIP) and Hypersensitivity Pneumontitis (HP). All three. Wow.
Tomorrow, I will blog his complications, medications, emotional toll and how it is to live with lung transplants.
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