Monday, May 21, 2012

American Thoracic Society Dinner Conversations

We met so many interesting people at the American Thoracic Society's PAR Dinner last evening. The room was filled of presenters to the conference like me, representing a variety of illness. Several lost husbands or children to a lung disease while others were struggling with a bad diagnosis.

The couple sitting next to us had a premature daughter who was born at 25 weeks and is struggling with pulmonary hypertension. She is on oxygen 24/7. Her mom had made her presentation earlier in the day and was thrilled to have it over! We were both deeply touched by their devotion to their child and to each other. She is one lucky girl to have these two as her parents. They are fighting for her future.

I had spoken on the phone several times with Jack from Florida who was assigned to us, sort of as a handler. His daughter died of a rare lung disease which she fought all of her life, and died so very young after living six years with lung transplants. He had made a promise to her to start a non-profit to bring attention to her disease so that with money and research, a possible cure may be found. He shared her well-worn photo from his wallet with us. What a beautiful woman.

There were many people in the room representing other non-profit organizations and physicians who will be receiving awards from the ATS. One of these doctors was from the National Jewish Hospital in Denver and I was thrilled to be able to have a conversation with him. Susan, from our ILD Support Group, actually flies to Denver to meet with him regarding her lung disease. During our conversation, I asked why one of the very best medical centers for lung disease in the country is in the high altitude city of Denver? I learned that it initially was a center for tuberculosis whose patients did better when they were kept at lower oxygen saturation levels. So interesting.

It was also a thrill to meet the president of the Coalition for Pulmonary Fibrosis. Michael and I had met the founding women of CPF at a conference in San Francisco about four or five years ago. They were just getting started. I am so impressed by this organization as they really put money and focus on research. If you are looking for an organization to honor a loved one who has died of pulmonary fibrosis or a person who is currently struggling with the disease, please consider this organization.

I introduced myself to her and told her about our first encounter with CPF. When I mentioned that I also pass along all of their information to you, dear reader, she asked the name of this anonymous blog. I was pleased at her response. She knew of it and reads it!

We both were overcome with exhaustion, stayed awake while driving home (thank goodness!) and fell into bed. William and Kimberly were also in the city for the evening and got home just past midnight. No matter how old the child, I still had a hard time falling asleep until I heard them come home. Always a mom, I guess!

They are flying out this afternoon and back into their lives. Michael and I both have a crazy busy week ahead including my speech at ATS on Wednesday. I feel a nap coming on!

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