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  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 didn't get them (they went into archives instead of my file but I had everything with me). I have an appointment with my PH specialist in a couple of weeks, followed by a right heart cath, and her thoughts are that another medication will need to be added to the Adcirca I currently take for PH. I now have to use O2 while sleeping as well as exertion. At the end of my appointment the doctor said she was excited about working with me, that she hates it when they send her someone who only has asthma. She said the fact that I am on anti-rejection medications that are also known to help fibrosis along with my complicated medical conditions makes me a challenge. She would like to get her other patients on the anti-rejection meds but they won't be approved. My final judgement is still out because I have felt that way about doctors before only to be let down. My CT scan was about the same as the last time when my lungs started to honeycomb. That is when I started the process for lung transplantation but discovered I am not a candidate. The major difference is that for the first time there is no ground glass on the scan. I questioned that and was told ground glass is how inflammation turns up on film so my lungs are no longer inflamed. This might be due to the anti-rejection meds. I still have end stage lung disease. My 6 Minute Walk Test was horrible. I desaturated quickly and never felt like I was getting any oxygen. I can always tell when the O2 is turned on and just didn't feel it. I walked 200 feet less than last time. I started out at 97% on room air. After 43 seconds I went down to 88%. According to the results they gave me 2 liters of O2 and I went down to 87%. They increased to 4L and I went up to 89% and then they increased to 6L and I went down to 87%. When I finally saw the numbers I truly believed that the O2 was not connected correctly so I am having a retest in June. This just doesn't seem right to me as I always come up with O2. Sleeping with oxygen seems to be helping and isn't too bad. I have started exercising again. I will keep you posted as to what happens with the PH Specialist and further testing. miocean
  2. 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 Diffusion. The differences were very minor and my scleroderma doctor, pulmonary hypertension specialist and I are very happy with that. The numbers are not good, but no severe decline. I still desaturated on my 6 Minute Walk Test but walked 50 meters further! I think Pulmonary Rehabilitation and exercising more contributed greatly to this. Although I have finished rehab I have joined a gym and am continuing to exercise as I don't want to lose what I have gained. My Echo confirmed the numbers of my heart catherization in August or September where my pressures went down to 23 (normal.) My PH specialist is continuing my protocol of Adcirca, a diuretic, oxygen during exertion, and exercise for now, I will probably have another heart cath this summer. My CT Scan showed very little change from last year according to my PH specialist! This is great news because last year my fibrosis had increased and my lungs had started to honeycomb. I haven't read the report myself yet. This week I spent a 13 hour day from start to finish at the transplant center. A two hour commute to and from, six tests and a meeting with the PH specialist. I had the CT scan, a Sniff Test to see if my diaphragm is working (it is), a chest X-ray, an arterial blood gas test, EKG, Echo, and the appointment with the PH specialist. I am still very impressed with the organization and professionalism of this center. I have had experiences with 11 hospitals in the past including kidney transplant screening so I have a good basis to judge. I now have a neurological evaluation scheduled in a couple of weeks and maybe a few more interviews but the testing part is finished. Once these evaluations are finished the center will let me know whether I qualify or not. It was last year at this time that I learned about the increase in fibrosis and developed pulmonary hypertension, putting me in the position to see if I am a candidate for a transplant. I started the transplant process and medication for the pulmonary hypertension but also put out a lot of positive energy that my lungs wouldn't get any worse and did everything I could to improve them including the rehab and a series of breath work. I have been seeing a therapist and working on dealing with the stress and anxiety of all of this. It hasn't been easy, it never is as we well know... So now this part of the journey is almost over and an answer is in the future. I have found some new, better doctors. I also learned about the GI damage scleroderma has caused. I am amazed at the dedication my husband has shown, the time he has given up, and his unwavering support. Sometimes I think it is harder on him than it is on me. I will let you know what happens next. One way or another, it will work out. miocean
  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 one for me and I am REALLY glad not to have it!) Echo: No signs of pulmonary hypertension. Slight enlargement of the heart and some hardening but probably no more that a person my age would have. No need for a right heart catherization. (Yea!) CT Scan:No increase in fibrosis since 2010 although there was a significant increase 2009-2010. No other treatment available since I am on myfortic as a rejection medicine and am on the highest dose. Lipid Profile: Off the statin for two months and my cholesterol has gone from 192 to 205, slight increase in triglycerides. I see the cardiologist next week and we'll determine what to do. The anti-rejection medicine I'm on causes high cholesterol. Kidney Transplant: Creatine is 1.2 and stable at 22 months out. Everything is going well. Skin Hardening: Softened to 0 from 45 on a scale of 0-50 over the 7 years of the disease. So, all is as well as it can be in sclerodermaland. I am following the typical pattern of diffuse scleroderma with sudden onset of symptoms and skin hardening, major organ damage, gradual softening of the skin and then a plateau. If I continue to follow the pattern I will stay where I am, but we all know how that goes and can only hope that it does. You all have encouraged me so much over the years, I hope this brings encouragement to others. miocean
  4. 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
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