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Found 3 results

  1. Due to a decline in my pulmonary function and a horrible 6 Minute Walk test my scleroderma specialist referred me to a new pulmonologist. She was hoping I could be put on a new drug for Idiopathic Pulmonary Hypertension, Perfinidone, but that is currently in trial for scleroderma and won't be prescribed. I am hopeful that this new doctor will be the right fit; I liked her and she is knowledgeable in ILD, pulmonary fibrosis, scleroderma and transplants. She is going to review all of my CT scans and my tests. Although I made arrangements for her to have everything by my appointment of course she
  2. Yesterday was a 12 hour day at my scleroderma center between travel time, tests, and meeting with the specialist. I had my yearly Pulmonary Function Test and afterwards compared my Total Lung Capacity (TLC) and diffusion rate (DCLO or Dsb). They went down: TLC from 78% to 61% and Dsb from 39% to 37%. Then I had my 6 minute walk. Last year I started at 98% on room air and at the end of the test was at 96%, walked 1533 feet and did not desaturate during the test. This year I started at 98%, at 4 minutes dropped to 88%, was given 2 liters of oxygen and at the end of the test was at 92%. I wal
  3. Hello everyone, Well, the jury is in on all my yearly tests and basically I am doing as well as I can be. PFT: 55% lung capacity, 38% diffusion. They are now discounting a test from right after my kidney transplant where it went up to 43% as invalid and that means I have plateaued in the high 30's. Although that is not that great, it is great that it has stabilized. 6 Minute Walk: No desaturation, started at 98%, went down to 96%. This is very good because if I was desaturating along with the low diffusion it could be indicative of Pulmonary Veno-Occlusive Disease. (That was a new o
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