So the last doctor\u2019s appointment with the pulmonologist was an interesting one. He took plenty of time to answer several of my questions. I asked about the last V\/Q scan, and I\u2019m due for another in February\u2013this is the gamma radiation scan that makes me radioactive for up to three days. It\u2019s cool\u2013they give me a sticker that says I\u2019m radioactive. One day, I might become she-hulk. I hear she\u2019s a lawyer. I wanted to be one of those at one time, a long time ago, in another lifetime, it seems.<\/p>\n
Anyway, I was asking about being put on the new CTEPH medication that was approved back in October of last year. I\u2019ve been told I can\u2019t be put on it until I get a good right-heart catheterization (RHC). As many of you know, after over an hour of trying to find and advance the line on my RHC, we had to stop the procedure, so we never got results. We\u2019re looking into the fact that my right-sided aortic arch (which is apparently extremely rare), is preventing the advancement of the catheter line. We\u2019ll see. There are other ways of doing the RHC though. We\u2019ll worry about that later.<\/span><\/p>\n But that\u2019s when the pulmonologist told me that not only do I have CTEPH, but I also have PH, from sleep-disordered breathing. He\u2019s been saying it was sleep apnea for a couple of years, but after three sleep studies all saying I don\u2019t have sleep apnea, I don\u2019t think he can continue to call it that any more. I agree I have a sleep disorder\u2013I have insomnia (clinical\u2013not just the stuff folks throw around and say they have insomnia when they can\u2019t sleep one night), and I also have reduced or absent REM sleep. I can sleep four to six hours in a stretch and not show a single REM cycle. I rarely if ever can sleep more than 5-6 hours without waking, usually closer to four.<\/p>\n This IS causing problems with my health, and it does need to be addressed. We\u2019re working on that. Sleeping pills didn\u2019t help, but I did find that the muscle relaxer my primary doc gave me helps me sleep quite well. I think we\u2019re going to work on that, since it helps.<\/p>\n Back to the doctor\u2019s appointment. I asked him why I hadn\u2019t been referred for the PTE surgery, and that\u2019s when he told me, and I\u2019m almost quoting here, \u201cYour breathing problems are a bit more complicated than just CTEPH.\u201d<\/p>\n But the basic gist of it all is that he doesn\u2019t think, and hasn\u2019t thought from the beginning, that I would be eligible for the PTE surgery. But everything I\u2019ve read and everything everyone in the support group is telling me is that EVERYONE who has CTEPH should be evaluated by a trained, qualified, experienced PTE surgical center. It\u2019s been three years now, and no one has even suggested that to me.<\/p>\n That\u2019s one reason why I\u2019m changing doctors.<\/p>\n I\u2019ve requested my medical records. I\u2019ve learned my pulmonologist has a bias against my weight, and that the other doctor who was under him actually was very good about documenting that the majority of the weight I\u2019d gained was fluid retention and that I would lose that when I was properly diuressed. It\u2019s like a comedy almost, reading my medical records. I\u2019ve been telling them for years that my breathing issues and weight gain came on VERY suddenly, and this one doctor just never believed me. He also insisted I had sleep apnea when I did not. He also was the only one out of five doctors who read a radiology report that said I had acute PEs but insisted I did not have them. He also was the the one who kept me on the warfarin blood thinners for two years, even though I was miserable on them, was on such a high dose I was bleeding all the time (from multiple orifices) and was losing my hair from it\u2013my hemoglobin and iron so low I needed a blood transfusion, and yet he still kept me on it. I\u2019m on Lovenox injections now, and I will NEVER go back to warfarin again for all the money in the world!<\/p>\n I could keep going. But the point of all this is that this doctor has done nothing in several years to make me feel better. He\u2019s basically keeping me at status quo, and I\u2019m not happy with where I am. He thinks this is the best it will ever be, and I disagree. I want the cure. I want to be me again, if that\u2019s possible.<\/p>\n And maybe some part of me thinks it\u2019s possible.<\/p>\n And I\u2019m going to keep looking for a doctor who thinks that too, and that\u2019s the one I\u2019ll give my money and time to.<\/p>\n I am so grateful for having found the CTEPH support group when I did, or I don\u2019t know how long I would have continued going on with my life, letting his horrible condition take more and more from me every day.<\/p>\n I\u2019m reclaiming my life.<\/p>\n Love and stuff,<\/p>\n Michy<\/p>\n","protected":false},"excerpt":{"rendered":" So the last doctor\u2019s appointment with the pulmonologist was an interesting one. He took plenty of time to answer several of my questions. I asked about the last V\/Q scan, and I\u2019m due for another in February\u2013this is the gamma radiation scan that makes me radioactive for up to three days. It\u2019s cool\u2013they give me […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[8],"tags":[],"class_list":["post-526","post","type-post","status-publish","format-standard","hentry","category-health"],"yoast_head":"\n