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Stiff Heart - diastolic heart failure
Heart & Blood Health | Last Active: Mar 3 10:16am | Replies (214)Comment receiving replies
Hello, Teresa @hopeful33250
I did get some really good news regarding the amyloidosis--the scans and aspiration tests were all negative for amyloidosis. I still do have some diastolic heart failure and a degree of kidney failure. The scan showed atelectasis in my lungs, and my right diaphragm was elevated, however, that may be due to having right-sided polio. I'm supposed to go to hospital for a test to see if my right diaphragm moves at all during fluoroscopy or whether it's completely paralyzed. My follow up visit here with the pulmonologist doesn't take place until next June, and they haven't called me with a date for the test. So from the lung standpoint I'm still a little in limbo. But the cardiologist in Mayo seemed to think my lungs weren't the major cause of my shortness of breath.
I meant to write but wasn't really sure what to tell you. Anyway, this is what I know, and what I still don't know.
The news about NOT having amyloidosis, however was great. And it was the main reason I went up there, to make sure my children didn't have to worry about it. I will also see a new cardiologist down here, since I lack confidence in the previous one who did the cath and gave me a diagnosis that hadn't been tested for.
Thank you so much for asking.
Annie
Replies to "Hello, Teresa @hopeful33250 I did get some really good news regarding the amyloidosis--the scans and aspiration..."
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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Hi @annierae, Thank you so much for the update. I too, am glad that you don't have to be concerned with the diagnosis of amyloidosis, both for you and your children. I'll be interested in hearing what the doctors find out about the diaphragm. I look forward to hearing from you again.
Will you post again when you know more?