Living Well with a Bad Diagnosis - Lung Disease

Friday, August 11, 2017

Transplant Appointment

I went into the meeting with the doctor who began the lung transplant program at my university hospital feeling stronger. The PFTs went better than I had expected. My FVC went from 41 to 47 and my DLCO was up almost a point from the test three months ago.

He walked in the door and said, "I know you!" I explained how I was a speaker at a continuing education program for doctors that he was teaching several years ago, that I spoke at the American Thoracic Society's international conference about five years ago and that I sit on one of the patient boards. He reviewed my PFTs and my file and said that I was basically stable. I looked really good. He then sat back in his chair and said, "You aren't going to have a lung transplant anytime soon. Really, how often do you think you want to check in with us?" I was thrilled and replied, "Once a year?" Done.

Walking to the elevator, I made a vow that I have to get back to exercising everyday so I can bring my stamina back up. I want to feel fit again.

Between the PFT and the appointment at the Lung Transplant Clinic, I dropped off the Xray of my hand to the gentlemen at the desk of the Rheumatology Clinic deep in the basement. While getting a cup of coffee to take with me to wait for the appointment at the clinic, my phone rang. It was the Rheumatology people. They had no referral. I had dropped it off over a month ago and, thankfully, the woman used to work for the pulmonary clinic and knew me by name. When I told the woman on the phone that I gave it to the woman who used to work in pulmonary, she told me she would try to find the referral.

I never got another phone call.

So, after the visit with the Lung Transplant Clinic, I wandered back down to the basement where I was waiting in a line to see another woman at the desk, who was working with another patient. Suddenly, Christine (the woman who took my referral) walked into the waiting room, spotted me and came running over. "You caused quite a stir this morning," she said. While speaking with her, she tried to phone my primary to get a copy of the referral but they were out to lunch. She promised to follow up and phone me.

She saved me. I kept thanking her.

While in the car driving home, she phoned. Contacting my primary, they faxed an entire packet regarding my gout diagnosis to her and it was now in my files. She said they had what they needed for review and they would be in touch with me to make an appointment.

Check. Another worry off my list.

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