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Heart Disease: Let’s Talk About the Emotional Side
Heart & Blood Health | Last Active: Oct 1, 2023 | Replies (132)Comment receiving replies
@lailaamin , One of my life-long problems is HCM. Mine was first diagnosed at about age 15. I am now 80, and still have it, but I know now it is part of my systemic hereditary Gelsolin (Meretoja's, Finnish Amyloidosis), with RyR2 and FKTN and some other stuff. Now this is not to say this might be your problem as well, just that it is mine, complete with a couple dozen stents, total 30 heart caths, 2 CABG with 7 repair sections. Every organ, tissue and liquid I have has been impacted by this. Anyway, a low-carb diet, hi-exercise regimen, along with a constant growth of knowledge of what I have has been a lifesaver for me. Frankly, I have had to do most of it on my own, because of the emotional cost of the failed medical care we all seem to receive. Only the various images (CT, X-Ray, Echo, MRI, ECG, etc) have actually been trustworthy, so I rely in this evidence and some very good lab work from Mayo, Alnylam, Ambry Genetics for functional diagnoses. But even that is argued against by doctors who are extremely jealous of the top labs. So I completely agree there is a terrible emotional toll on HCM and other cardiology patients. I have had to struggle with temptations of suicide many times, to each time I have to go back to the materials I have collected over the years that show the reality of my issues. I bought Dr. Gertz big book on Amyloidosis, so several big clinics refused to see me any more because I had consulted with Minnesota Mayo. Well, actually, I did drive by a building of theirs about 40 years ago. Getting old with HCM and all the other signs of Gelsolin is not a pleasant life.
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Thank you for responding. Since age 15 you have been dealing with all of this? Unbelievable!! Mostly remarkable that you have found your way through it all. I must say I feel so alone in dealing with this then add COVID 19. What I have learned so far about HCM, I have obstruction with it, so HOCM, is that when present to ED, the doctors ate looking for a diagnosis to fit into their little symptom box snd pull out a familiar diagnosis and send you on your way . Only after my persistence that there is something wrong with me, I am not just hypertensive with anxiety. Stayed away from hospitals for over 26 years when I had my daughter send from January to March I went to ED 4 times before they finally did a Cardiac MRI and gave me the diagnosis of HOCM snd referred me to Mayo Clinic because nobody in the area treated HOCM. What about yourself? Did ypu have local doctors through the years that helped you, treated you? What were your symptoms at age 15, middle age, up to present? Have your symptoms changed over the years? How have you dealt with symptoms all these years, meaning what seems to make them better or worse? Are you doing ok today. Did you ever have the Septum Myectomy surgery? My best to you!