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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

It seems like it has been taking forever (because it has been months) but I am nearing the end of my lung transplant screening at the 2nd center I applied to. The first center rejected me immediately due to extreme reflux and damage to my esophagus but the second one is willing to test further. I started this process around July and was told I would be finished in Sept. Here is the update on the current lung tests: My Pulmonary Function Tests were very similar to last year. I had a very slight improvement on my Forced Vital Capacity and a slight decrease in my Total Lung Capacity and

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

I have limited Scleroderma and Lupus. My rheumatologist has never mentioned having a PFT. Is it time for me to bring this up? I had a heart catherization 2 years ago and it did not show signs of PAH. I am 54 and was diagnosis with Raynaud's and Lupus 25 years ago. Four years ago was told I have limited. Is a PFT routinely done for limited? Those of you with limited what did you find when the test was done? Sarah