Hypertrophic Cardiomyopathy: Dealing with Shortness-of-breath

Sounds like you need an alcohol septal ablation. Being that short of breath, no doubt your atrium, ventricle, and septum are thick so there is no room for blood. HCM no doubt causes shortness of breath. Even after surgery, I am still short of breath, but certainly not as bad.
Please speak to a Cartiologist and see the benefits of surgery. I had it done and it's not that bad. I'm still here.

If you have "obstructive" Hypertrophic Cardiomyopathy, which is what I have at my 64 years of age, I have been treated by a "certified"Camzyos Cardiologist who prescribed me Camzyos 5 mg and I have no longer chest pain or pressure, in only 1 week I was able to feel the difference now I can take my 2 to 3 mile daily walk. Please find a "Certified" Camzyos Cardiologist who can evaluate you and see if you can take that medicine. I wish you the best.

Perhaps a second opinion is in order. I was within a month of my 76th birthday when I had a septal myectomy at Mayo. There are factors other than age to be considered.

Welcome to Mayo Connect @lakeview. I'm so glad you found this community!
Thank you for sharing your story. Wow, I am so sorry to hear about how short of breath you are, I know it must be terrible!
You mention you are treated by a top notch cardiologist, but do you know if they are from a center of excellence (COE) and/or an expert in HCM?
I echo the suggestion from @walkinggirl, and would also recommend a second opinion. To be so short of breath you need a wheelchair and can't go more than 30ft is quite concerning. Do you have other co-existing conditions that this shortness of breath are also symptoms?
Do you know if you have obstructed HCM (HOCM)? If you do, has your cardiologist considered Camzyos as alternative to surgery?
I also second the thoughts of @walkinggirl, that age should not be a reason to not do surgery. There are many factors that go into a decision about open heart surgery besides age.
Have you considered seeking a second opinion with an expert in HCM?

Hello @lakeview and welcome. This forum has been immensely helpful to me in my walk with HCM. Even though you did not specifically ask about the medication mavacamten (Camzyos), I would encourage you to spend some time reading through the discussions at the link below. It doesn't help your symptoms to hear that others have similar stories, but for me it was reassuring to discover that I wasn't just crazy or lazy (although I may be both!).
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
You will find that lots of us have had very similar kinds of symptoms to what you describe - perhaps not quite as severe as yours. On a good day I could *stroll* on level ground but any kind of slope or stairs was out of the question. Bending down to tie my shoes? Ha! Ten minutes of recovery time after that. I was very lucky to be eligible for Camzyos and very lucky that it has worked extremely well for me. I hope you can get relief, whether by medication or surgery.

I am skeptical about taking camzyos, they can cause heart failure

I am also very skeptical about all medications. However, the protocol around Camzyos is very thorough and echocardiograms every month for the first 3 months and then every 3 months ensures that your doctor is keeping a very close eye on how the drug is affecting you. I'm almost 4 months into my Camzyos regime and have been surprised and pleased.

Thank you for your information, I don’t like the idea that you have to be checked so often, that means it is still a trial medicine….I don’t want to be a Guinea pig…also it is a conflict with one of my medications I have been taking for many years.

Hi @lakeview -

Sorry for your symptoms. The more I know the more optimistic I become my HOCM and other heart problems will be successfully addressed. Hang in there. Be thorough. Be patient.

Please carefully read all the helpful responses, especially
Debra, boatsforlife, and mpig.

Also, please realize heart failure is NOT cardiac arrest. All of us afflicted with HOCM are suffering heart failure to some degree. The HF term is unfortunate and totally misleading.

Immerse yourself in the CAMZYOS website. The thoroughness with which this drug is being implemented and monitored is so impressive. Skeptical like you, I asked the drug reps and my cardiologist if I was being used as a guinea pig. NO was the emphatic answer.

Most importantly, find yourself a cardiologist who is part of the Camzyos network—the REMS program. In NJ, I had many choices. You want cardiologists experienced with this amazing drug.

I asked all members of this group a couple of weeks ago how long it would take for benefits. The number of answers saying "immediately" or "within a week" blew me away.

I have symptoms like you do. But no wheelchair. After walking on flat terrain for maybe fifty feet, I get winded and must rest. Symptoms worsen later in the day and night. Other symptoms include feeling pressure or tightness in my chest. And lightheadedness. Any effort getting up from a resting position produces all these symptom every time. I have no problem bending over to tie shoes. (Everyone is different.)

My last advice is to make sure HOCM is correctly diagnosed. I've now had a specialized (for HOCM) echocardiogram (including injected dye and the valsalva maneuver), a stress echo on a treadmill, and a double catheterization beginning at the tops of both legs so all heart arteries could be checked.

In early Dec., I'll get a T-E-E, which is a tube down the esophagus which allows ultrasound to provide a picture of the working heart, including all four valves.

My cath suggests, in addition to HOCM, a mitral valve leak, which T-E-E will confirm. I used Camzyos for ten days, but was taken off until an accurate diagnosis of all my problems could be gotten. After the mitral valve is fixed, I expect to be put back on Camzyos, the results of which I'll comment on here.

Gary, Thank you for your helpful information….lakeview
On Wednesday, November 13, 2024, 04:14:43 PM EST, Mayo Clinic Connect < nf+7b6f4384+25387124@n1.hubapplication.com> wrote:

| ## reply above this line ##
|

|
| |

|

|
|
Mayo Clinic Connect
|

|

|
| @garyhawthorn mentioned you in comment on Wed, Nov 13.

Message
Hi @lakeview -

Sorry for your symptoms. The more I know the more optimistic I become my HOCM and other heart problems will be successfully addressed. Hang in there. Be thorough. Be patient.

Please carefully read all the helpful responses, especially
Debra, boatsforlife, and mpig.

Also, please realize heart failure is NOT cardiac arrest. All of us afflicted with HOCM are suffering heart failure to some degree. The HF term is unfortunate and totally misleading.

Immerse yourself in the CAMZYOS website. The thoroughness with which this drug is being implemented and monitored is so impressive. Skeptical like you, I asked the drug reps and my cardiologist if I was being used as a guinea pig. NO was the emphatic answer.

Most importantly, find yourself a cardiologist who is part of the Camzyos network—the REMS program. In NJ, I had many choices. You want cardiologists experienced with this amazing drug.

I asked all members of this group a couple of weeks ago how long it would take for benefits. The number of answers saying "immediately" or "within a week" blew me away.

I have symptoms like you do. But no wheelchair. After walking on flat terrain for maybe fifty feet, I get winded and must rest. Symptoms worsen later in the day and night. Other symptoms include feeling pressure or tightness in my chest. And lightheadedness. Any effort getting up from a resting position produces all these symptom every time. I have no problem bending over to tie shoes. (Everyone is different.)

My last advice is to make sure HOCM is correctly diagnosed. I've now had a specialized (for HOCM) echocardiogram (including injected dye and the valsalva maneuver), a stress echo on a treadmill, and a double catheterization beginning at the tops of both legs so all heart arteries could be checked.

In early Dec., I'll get a T-E-E, which is a tube down the esophagus which allows ultrasound to provide a picture of the working heart, including all four valves.

My cath suggests, in addition to HOCM, a mitral valve leak, which T-E-E will confirm. I used Camzyos for ten days, but was taken off until an accurate diagnosis of all my problems could be gotten. After the mitral valve is fixed, I expect to be put back on Camzyos, the results of which I'll comment on here.

| |

|

|
| VIEW & REPLY | |

|

|
| Unsubscribe from this content and see links to review my email settings. | |

|

|

|