HCM and Heart Failure

Posted by leatole @leatole, Mar 4 8:02am

Hello, just wanted to introduce myself here- my dad has HCM and heart failure and is suffering with the following symptoms:

- Breathlessness
- Chest pain
- fatigue

He has recently been treated for sepsis and the NHS took him off all his medications- he is easing back onto them now, but each day is a struggle with the pain and breathlessness.

Does anyone else have a similar situation?

Thanks
Leanne

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

Debra, Volunteer Mentor | @karukgirl | Mar 4 9:51am

Hello Leanne @leatole, and Welcome to Mayo Connect!
I'm glad you found this site, and I hope you get some answers to your questions about your dad. Mayo Connect is made up of members, like you are now! And we are patients or caregivers mostly, so we can't dispense medical advise. We can share our opinions or experience though, and I can share that chest pain, breathlessness or shortness of breath, and fatigue are hallmarks of HCM or HOCM (Hypertrophic Obstructive Cardiomyopathy). I was in the beginning of heart failure when I had my open heart surgery.
I'm sorry to hear your dad has had sepsis recently...that must have been very scary! I know it can take time to recover from such a serious condition. I watched it happen to my significant other. He almost died! And it took months to recover. I can only imagine that having HCM or HOCM and having sepsis would take a huge toll on him health wise and otherwise.
May I ask how old your father is?
Does he have a cardiologist with good knowledge of treating HCM?
HCM is not common in a lot of cardiologist's practices, so often the patient goes undiagnosed and/or treated for something they may not have.
When is his next appointment with his FP or cardiologist?

jachrist | @jachrist | Mar 5 8:19am

Leanne,
Being short of breath, Chest pains, and fatigue is my norm. I've also experienced sudden cardiac arrest. Then had alcohol septal ablation.
Hope your Father continues to fight the battle.
Jim

jc76 | @jc76 | Mar 6 7:43am

@leatole I hope you are passing on those symptoms to your cardiologist. Hopefully you have the ability to see a heart failure specialist who has more more training in heart failure, and treatments. It is a specialized field in the cardiology medical field.

I do not have those symptoms. I have been see Mayo Heart Failure Specialist since 2006. We monitor my exercise, blood tests, physical symptoms and address them. There are medications to help with his symptoms and would strongly suggest you get with your cariolgist to go over those symptoms and develop a plan to address them. If you have the ability to see a heart failure specialist I would definetely recommend that.

boatsforlife | @boatsforlife | Mar 9 12:27pm

Hi @leatole . After 17 years of worsening chest pain, fatigue, dizziness, shortness of breath, ... I was finally diagnosed at 59 with obstructive HCM and put on the new medication Camzyos (https://www.camzyos.com/) in Sept 2023. Within days all of the symptoms disappeared. There was a fairly strict set of conditions that had to be met to get the drug so it might not be in the cards for your father, but it has been such a game changer for me that I recommend at least asking the cardiologist about it. I hope your father recovers soon.