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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 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
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 walked 1468 feet. This is a decline and I know from past experience that dropping that low usually means home oxygen therapy. I asked the techs if they though I would need it and they didn't think I would because I came up very quickly after getting the oxygen. After that came my Echocardiogram (Echo) The center lost power during the last picture of my test! Even though the machine was plugged into a "red" plug that goes directly to generator, it screwed up my test and it wouldn't upload. So that meant a long phone call to tech support, three other people in the room all telling the tech to do different things, and I am just thinking this is so par for the course for me and now I have ANOTHER story to tell about my mishaps with the medical machine. The end result is that my test would have to be read manually from the machine. My guess is that it will have to be done again. Fast forward a couple of hours to my appointment with my scleroderma specialist. She did not have the results of my Echo. Because of the decline in lung function I will need a CT scan of my lungs, no surprise. I knew that was coming. They were holding off on an annual CT scan because I have been exposed to so much radiation over the years, but now it will be necessary. Depending on the CT scan and Echo a determination will be made for a right heart catherization. I've already had 2 due to pre-testing for the kidney transplant so I know what to expect and I knew this was coming. She also gave me a prescription for home oxygen to use when "I am on the treadmill or doing aerobic exercise" (I do neither.) I said I understood that legally the script would have to be written due to the drop below 88% but that in all honesty I would not get this set up right away. I am going away and cannot get it set up before I go or where I am going. I have an appointment with my local pulmonologist when I return and will run everything by him, as well as another consultant. I brought up the calcinosis on my buttocks, something that has been an issue since onset 8 years ago and hasn't been given much attention and all of a sudden I became a patient of interest! My doctor is taking part in a research study on calcinosis. It is a 3 year study to track the development and severity of it in scleroderma patients. I have paperwork to read and sign, my doctor insisted on my taking it home and reading it very carefully. Basically it allows access to my medical information, there are no drugs involved, tests would be covered by my insurance, and I can withdraw at any time. I was asked if I had calcinosis on any other part of my body and I reminded her that in 2006 I had a biopsy done at my C-2 C-3 vertibrae for a mass that turned out to be calcinosis. I even made the medical journals for that one because it is an unusual place for it to form. She didn't remember so I pulled out my handy dandy looseleaf notebook, organized by organ or body part and whipped out pages of reports and tests from this. She made copies to look over and gave me prescriptions for x-rays of my buttocks and hands (so much for the exposure to radiation.) Then we went over the results of my bone density scan from November. My gynecologist prescribed it and went over the results with me then, in general things have improved each year since my transplant, except for a small negative change on a hip. I have been diagnosed with Oestopenia for several years. My gyn did not see any problems with the report but my scleroderma specialist did so I now have a prescription for Fosamax but cannot go on it until I discuss it with my nephrologist and will also run it by the others on my medical team and that won't be for a couple of weeks. So I now have 20 pieces of paper to add to my already way to thick file and plan on putting everything aside for a while since I cannot do anything about them right now and nothing is so important it cannot wait. Sometimes I just get tired of it all. All of it is starting all over again, the testing, the doctor's, more medications. I have diffuse scleroderma with total organ involvement, a kidney transplant, medicine that causes cancer to prevent rejection and causes even more GI problems than the scleroderma by itself, the only treatment for my lungs would be lung transplantation, blah, blah, blah, we all know the drill. I try to stay positive but other times I just want to say "I QUIT!" I know you are the only ones I can openly express this to, and know this is just temporary. If you have any advice, especially about the calcinosis study or the tests and medications, I appreciate it. miocean
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