Living Well with a Bad Diagnosis - Lung Disease

Friday, May 29, 2015


I must say, we clean up pretty good. Showered, shaved and in nice clothing we made our way into the city a bit early. No traffic. Found easy parking. We went to hospital cafeteria so Michael could have some protein and we sat and chatted. We also looked at our notes for the speeches and tried to relax. Then, I spotted a person from the pulmonary function lab, we had a great chat and that really calmed us down.

There was one bit problem: I felt horrible. I felt worse than Wednesday. My left ear was totally plugged all day long. Michael asked if we should cancel. NO! I will be carried onto the stage instead of canceling!

But, I felt pretty terrible all day. Nose running, coughing, exhausted.

We made our way to the auditorium. We were very early but it gave us time to feel the room. Michael was thrilled that it was smaller than a church. He gathered his confidence. Finally, the players arrive. The coordinator, three doctors and two other speakers gathered on stage, reviewed the program order, took our seats and suddenly, we began.

The head of internal medicine introduced one of the doctor's who introduced our Patient Advisory Board to the crowd and talked about what we actually have accomplished in a very short period of time. From there, we began.

The first patient spoke so beautifully, had little cards she read from, thanked everyone for attending, and had amazing remarks. Excellent! The second patient then spoke with both of his "hats" on as he is a patient as well as a retired physician. He spoke in their language. Then, my turn. I put my notes aside and just spoke. My brain was not 100% and I wish I had mentioned a few other things but I was mostly satisfied with my performance. Michael told me later that when I handed the microphone over to him, he thought, "How can I follow the other three speeches?" He spoke from his heart. He spoke about how if felt to have our lives suddenly change. The grief of not having the life you had planned. The fear of losing a spouse. It was very touching.

We then had a round table discussion about the technology issues. Do we like computer system? That sort of thing. This was followed by a quick question and answer session. I LOVED that. Then, it was done. Over. Finished.

But, sitting right in front of us was a doctor whom I have admired from afar for years. He is HIGHLY respected pulmonologist, is on the board of a pulmonary organization I support, he is on the board of a clinic in Italy and supports the doctor there who was behind one of the new anti-fibrotic drugs, I had seen him give a lecture about Hypersensitivity Pneumonitis in the same room we were in yesterday and saw for my own eyes why he is so loved. He is a hoot. I had never approached him. After the program, he came to introduce himself, I told him that I was thrilled to finally to meet him as I have been following him for years. We talked. He invited us to visit his parents in rural Georgia the next time we were in the area south of Savannah. They would take us out into the deep country for shrimp. The best shrimp ever. We also learned that he was just named the new Dean of the Medical School.

From the auditorium, we made our way to the Chancellor's meeting room where they had a light lunch and snacks waiting for us. This amazing doctor joined us and we all enjoyed a fun and rather deep conversation for the next 45-minutes.

Michael gave me the sign. It was 2:00 and we had not eaten as he had whispered into my good ear that we were going out. We all left together, made our way to the car and drove to British Don's across town. We had not seen him since he returned from two weeks in Hawaii. Life is tough!! He hopped into the car and we had a great, late lunch/dinner at our favorite restaurant owned by the Frenchmen. They were there, lots of kisses on both cheeks and we settled in for over two hours. It felt great to debrief about the speeches as well as hear about Don's vacation and the up coming wedding plans for his daughter in Nashville.

We headed out of the city by 4:30 and were just minutes ahead of the horrible rush hour traffic. We made it home in record time, Michael had a shot of bourbon over the rocks, even though it was not a Friday, and we watched the Giant's game. Life returned to normal.

I slept on the couch as I didn't want to keep him awake with my coughing. I actually slept well, only coughed around 2AM, fell back asleep and feel a bit better this morning. My ear? Still blocked. I am going to spend some time with mom today. She had her volunteer appreciation luncheon on Wednesday and had been so excited about going with a friend she had made while working at the main branch of the library. I also want to see how she is doing. We'll have a bit of lunch then I have a nice afternoon nap.

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