Just Diagnosed with HCOM

I was diagnosed with HOCM/HF in April. EF is 33%. A month later I was also diagnosed with Non-Hodgkins B-cell lymphoma. I also have stage 2 Chronic Kidney Disease and at the end of July severe stomach pain put me in the hospital where an endoscopy was performed finding 6 large deep ulcers with H Pylori infection. I just joined connect today and really appreciate the information being shared. I have sat and wondered, "how does one live with all these diagnoses?" I'm so glad I finally have a place to learn from the experience of those sharing here. So Thank-you!

I was diagnosed with HOCM/HF in April. EF is 33%. A month later I was also diagnosed with Non-Hodgkins B-cell lymphoma. I also have stage 2 Chronic Kidney Disease and at the end of July severe stomach pain put me in the hospital where an endoscopy was performed finding 6 large deep ulcers with H Pylori infection. I just joined connect today and really appreciate the information being shared. I have sat and wondered, "how does one live with all these diagnoses?" I'm so glad I finally have a place to learn from the experience of those sharing here. So Thank-you!

Wow, @kerryj2025,
What a crazy time this must be for you! I am so glad you found Mayo Clinic Connect.
I don't know where to start, you have so much going on.
I'd like to introduce you to one of our amazing Mentors, @gingerw .
Not only is she amazing, but she also lives with multiple scary conditions and is able to find balance in life. If you get a chance, read some of her posts. You will be inspired!

It's no wonder you have sat and wondered how to live with all these things.
There is a lot of coordination that needs to happen with all your different treating physicians, that's for certain. Each one needs to know what the other is doing to ensure you are getting not only the best care, but the right care.
It's easy to say just take it one day at a time, but when your day includes the list you have? That's just impossible to comprehend. Yet here you are! And I am so glad you are here.

I would assume (which we know what that means) that the conditions need to be prioritized and treated accordingly. Which one should be treated first? I would assume (there I go again!) that your FP is at the helm and directing all this.
It must feel overwhelming. Like a huge mountain you must climb.
Do you have a hobby you love that you can do?
Are you able to get outside in the fresh air and sunshine?
Do you have a faith background you can seek comfort from?

I'd also like to introduce you to another equally amazing Mentor, @loribmt. Her journey will inspire you. Her humor and strength to face tough, tough medical challenges is nothing short of amazing, and worthy of a Hallmark movie.

Here is a link to the Mayo Clinic hypertrophic cardiomyopathy. It's good to get to know your new heart condition since it's not going away!
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
Do you know what the next steps are for you?
Have you had time to even think about a second opinion?
It may help going forward to be certain there is confirmation and clarity as you lug your burden along this new and wild journey.

@hougoss
I see the mentor has already reached out to you with great feedback and information.

I have heart failure caused by cardiomyopathy. I see a heart failure specialist. In fact my HF doctor is the Director of heart failure and transplant division at Mayo Jacksonville.

A lot of cardiologist are experienced and knowledgeable on cardiomyopathy and hopefully you have one. If not seek out a heart failure specialist and like mentor mentioned second opinions if any doubt at all.

You did not mention your ejection fraction. Is us normal (50-70)? Mine went down to 25-30 until put on entresto and carviidol and has remain same since then. I was seeing a regular cardiologist at my home town for my cardiomyopathy. I wanted a second opinion and that is when I went to Mayo Clinic and saw HF doctor and electrophysiologist. My HF doctor changed my medications immediately.

Now some inspiration here. I was diagnosed with cardiomyopathy and heart failure in 2001. It is now 2025. I do sprint triathlons and exercise 6 days a week. When I went to Mayo for second opinion and then decided to stay with them I got excellent medical care. My EF had remained the same for 10 years now. When I do stress test at Mayo they come back low risk of cardio risk.

So stay positive. There are great medication and lifestyle changes to treat this, stay positive.

It has been a pretty busy past 3 weeks. I appreciate the information in your message 😊. I saw the cardiologist, my sleep apnea Dr, the ENT, pulmonologist and had a heart cath on Monday! My daughter, who had a brain tumor when she was 6 years old, has also had several appointments.. she’s a 33 year survivor which impresses many doctors. I’m her primary care giver. Finding a little extra time can be challenging sometimes. We seem to take turns having medical situations lol. Anyway, the results of the cath determined I need a septal myectomy (sp?) which is what Mayo had determined last April. I meet with the cardiac surgeon Oct 2nd. I have a dozen appointments between now and my cancer recheck at Mayo Nov 12. It’s like having a full time job but you don’t get paid… you pay to do it!!! Soooo, actually, I have 2 full time jobs LOL 😂. Fortunately, after my daughter was in a coma for 8 days in 2022, her dad has started to step up. He stepped up more after all my diagnoses this last spring.
So long story with a short answer… my kids hate it when I do that…. Hmmm. A little momma payback for the teenage years 😂. The heart surgery needs to happen, but it won’t be until they see if the cancer has spread or is behaving itself for now!

I too had an alcohol septal ablation at the Mayo Clinic. The surgery was uncomfortable but necessary. Your Cartiologist recommendations will depend on the status of your atrium, ventricle, and septum. In my case, I had a sudden cardiac arrest and definitely needed the ablation. If you have HCM or HOCM is certainly not a one size fits all.

I have been following several who are taking Camzyos but I have never been prescribed this medication. I am on Metropolol, Atorvastatin, and Lisinopril. After my alcohol septal ablation I still have chest pain and shortness of breath. Some days it's worse depending on my activity. However I now have Cardiac Amyloidosis (stiff heart syndrome) and I am experiencing ischemic strokes. I can feel the strokes which last anywhere from 30 seconds to 2 minutes. Some even affect my vision. I also now have a hole in the upper chambers of my heart in the septum. I had surgery to plug the hole but they could not get past the leads for my ICD. Now I have been placed on Eliquist (anticoagulant) to prevent blood clots. Also all 4 valves are regurgitating blood but not too bad so they are being monitored.
I'm dealing with the HOCM but this Cardiac Amyloidosis is no doubt going to be my maker. I had a brain MRI and I've had countless strokes which is causing short-term memory loss.