1. < Hypertrophic Cardiomyopathy (HCM)

What does heart failure mean with HOCM

Posted by joannoxenham @joannoxenham, Jun 13 9:31am

Hello all, I’m trying to figure out if I have heart failure or if it’s worsening and what to do. Diagnosed at 52 with HOCM after my heart stopped after syncope and heart cath. ICD implanted and metoprolol Succ ER regimen slowly increased to 200 mg/day. I’m 60 now. Last year I went on camzyos 5 mg for about 5 months but has to stop due to “headaches from hell”. Tried alcohol ablation but didn’t have the right vein into my heart. I don’t want open heart surgery for septal myectomy. I don’t feel strong enough. After stopping camzyos, my symptoms returned with a vengeance. I gained 20 lbs mostly in my stomach and can barely garden or walk up the stairs at home without profuse sweating and beating heart, heart pain at night. Seems like the docs only look for ankle swelling. I’m not close to any HCM centers and just see a gen cardiologist who I’m seeing soon for icd check. Not sure if I should ask for diuretics or testing or what. Anyone with experience in this? Much 😊 thanks

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joannoxenham | @joannoxenham | Jul 11 1:42pm

Hello,
Thank you for your response. It seems hard to get the cardiologist to care about my symptoms if I’m not in eminent danger and my ef isn’t that low. But the symptoms I’m having are new and unexplained to me.

Can you tell me what other blog you wrote on as I’d love to read the info you shared about this. I am scared these symptoms will worsen to the point I can’t do much.

Thanks again 😆

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bettyann6 | @bettyann6 | Jul 17 11:13am
In reply to @walkinggirl "It never hurts to call and ask about making your own appointment, you may even be..." + (show)
@walkinggirl

It never hurts to call and ask about making your own appointment, you may even be able to contact them online "Contact Us" on the website. It would not hurt for your cardiologist to call them directly, I would think they would be extra willing to talk to another cardiologist and come up with a plan of action designed for you. Here is how it worked for me, others may have different stories: My cardiologist sent all of my test results to Mayo (EKG, echo, bloodwork....), for evaluation. I did not have to actually go there until a couple of days before surgery (that was the plan of action set up for me), and I did not have to return for any follow-ups, all was taken care of at home.

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This has been my experience as well. My septal myectomy was three years ago and so far, I’m doing very well. It has taken time for me to reach this level. But I am 84 so I’m really happy with my results.

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walkinggirl | @walkinggirl | Jul 17 1:35pm

bettyann6, I am so glad to read that you are happy and doing well! My 2nd anniversary is 7/21, Sunday, am active and hope to still be that way at 84! I hope that people reading your comment will be assured that age should be disregarded when seeking another opinion and consenting to surgery- I was 75!

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captainterry | @captainterry | Jul 17 6:32pm

Dear friend and fellow patient: you are only 60 yrs old and have many untapped possibilities for your care! Keep pushing for better diagnosis and treatment for this complicated condition of our hearts. Go to this web site 4hcm.org which is the national association for HCM by patients/ for patients. There is a great amount of help on this site and you can call them. Note there are 2 HCM Centers of Excellence in North Carolina and 3 in Tennessee. Contact numbers are provided for each. Some can provide cost assistance with travel from East TN.
You owe it to yourself..... Make some calls, dig some more, open some doors to a Center of Excellence. Discover what blessings might be in store for you, yet unknown and unrealized!
Curt ( many years with HCM - 2 yrs on Camzyos)
PS: Camzyos is available in a 2.5mg dose. Maybe this would help with headaches, or more experienced specialists would know some ways to manage side effects. God's Speed!

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blessmyheart | @blessmyheart | Jul 24 1:26am
In reply to @joannoxenham "So I can make an evaluation appt with a doctor at Mayo on my own? I..." + (show)
@joannoxenham

So I can make an evaluation appt with a doctor at Mayo on my own? I didn’t know if I needed to be referred. My cardiologist has no experience with hocm as I’m in a small town in East Tennessee. He just more or less goes on what I tell him but I don’t know what he should be testing for and looking for as far as hf goes. I appreciate the feedback.

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Definitely recommend a HCM center of excellence. Regular community cardiologist are just not trained in the details of this. Dr Ommen at Mayo is excellent

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1 reply
joannoxenham | @joannoxenham | Jul 24 9:34am
In reply to @blessmyheart "Definitely recommend a HCM center of excellence. Regular community cardiologist are just not trained in the..." + (show)
@blessmyheart

Definitely recommend a HCM center of excellence. Regular community cardiologist are just not trained in the details of this. Dr Ommen at Mayo is excellent

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I’m working on getting seen at Sanger Heart in Charlotte, NC, also a COE. Closer to home at 3 1/2 hr drive. Anyone familiar with them?

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