Living Well with a Bad Diagnosis - Lung Disease

Saturday, October 24, 2015

Passing Along Information

I love Saturdays. Home. Garden. Bookkeeping. Laundry. Puttering around. The garden is the main focus today but I will also begin to fill out the questionnaire for the counselor next Friday. You remember, the counselor that Dr. K. recommended I see because of being "manic" and that I need to learn to manage a chronic illness. I know I have to follow through, for the medical record, but I hope I don't see the counselor for long. I did my work spiritually, physically and emotionally in 2005 and 2006. When I look back, I have learned so much and have become such a different person with the innate feeling that this disease was the reason for my life. It was my path to walk.

At the end of the ILD Support Group meeting this month, a very nice older gentleman approached me afterwards and said, "You are so positive and have good energy. You are meant to do this." Wow. From a stranger. I am honored to be invited to meet a couple who are dealing with IPF. It is a rather recent diagnosis so they are still in the early stages of having little information and I have so much practical advice to share with them. Advice gleamed from experience. I also say that it is not that I know more but I am just further down the road.

Since I am not a doctor, I always offer my experiences then suggest they speak with their doctor about whatever issues we discussed. We are very lucky in the Bay Area to have two internationally renown university hospital and research centers. One is known for their cardiac department. When I hear of someone seeing a local doctor with a cardiac issue, I often wonder why they do not go to this one university hospital? It is the best.

My university hospital has a renown ILD Clinic. The couple I am going to meet have been seeing a local doctor and it became clear that they were not receiving the best of care. Things were slipping through the cracks. No mention of pulmonary rehab. No tests to see if he was strong enough to fly. No mention that having IPF is no longer considered 2-3 year prognosis. There is hope for a longer and good quality of life. These are smart people and they now understand the importance of being treated at my university hospital.

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