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Stiff Heart - diastolic heart failure
Heart & Blood Health | Last Active: Mar 3 10:16am | Replies (214)Comment receiving replies
Hello Annierae! I haven’t been on this support group for a while. I just got back from the Cleveland Clinic after having a heart Cath. And being moved to grade C diastolic heart failure. I was reading through some of the posts on diastolic heart failure and came across yours, and was astounded to see that your pressures in your left ventricle were exactly the same as mine. 23 to 30! Anyway, I read a lot of your journey and I wonder how you are doing now? My biggest symptom is constant shortness of breath. Of course it’s the worst when I’m walking and absolutely the worst when I’m walking up any kind of incline. Stairs are a real problem. I am on fFarxiga, but it doesn’t seem to have done anything to help. I also take valsartan . I try to walk most days but it’s been difficult in the winter. Now that I know I am stage C I am going to be a lot more careful about sodium in my diet. I’m also going to try to drop 10 or 15 pounds- at any rate, I hope you are doing very well and I’m so glad to see that you went to the mayo clinic. I go to the Cleveland clinic and I’m very happy with them but like all the rest of us wish somebody would come up with a treatment that could help reverse this condition! All the best! Hope to hear back from you
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Hello @tcokeefe
Thank you so much for writing! Yes, I went to Mayo in 2020, I just realized how long it had been when I read your post. I'm sorry to hear you're going through this. There is so much to consider when you study diastolic heart failure. I'm so glad you've found a place for treatment who is working with you, and that you're happy with! Yes, I wish someone could come up with a treatment for reversal that would work, too!
Reading your symptoms was interesting. I checked them all off in my head as I was reading them.
As for me, I'm managing. At present I don't have a cardiologist. I do have an internist who is wonderful, and also seems to understand post polio, and it's hard these days to find physicians who do because most have never seen a case of polio. (I'll be 72 within a week, and medicine has changed. My trip to Mayo Clinic was interesting, but not entirely satisfying. They were looking for amyloidosis, but when they didn't find it I felt almost as if they were saying, "Well, we're done here." and that was it. I have to admit it was a difficult time for them, too. They had just been forced to let hundreds of nurses go due to the lack of the covid vaccine, and the place was much more disorganized than I'd ever seen it.
Anyway, having said that. the good news was I didn't have amyloidosis. The not so good news was that they looked no further. The PYP SPECT/CT scan report did contain a note from the radiologist saying, "The SPECT/CT shows decreased activity in the left ventricular myocardium". No one ever mentioned this to me and I didn't see it until well after I was home and looking through my records. They released me as soon as I had the last series of tests and there was no followup visit after that. (I did receive a letter from the cardiologist saying I needed to lose weight, which is true.) Now, a few years later, it doesn't seem any better, but only somewhat worse. I am scheduled for another ECHO in a few weeks. This was ordered by my Pulmonologist, interestingly enough. We'll see what that shows. As far as I know, no one has given me a stage, as they have you. (I think I may have been one of those patients who has fallen through the cracks.)
Anyway, I so hope the best for you, and I'm thrilled that you seemed to have a team that was working for your benefit! It sounds as if you have a great team!
~Annierae