HCM-ers: Introduce yourself or just say hi

@joeymopete You mentioned that you had been diagnosed with mitral valve regurgitation as well as HOCM. When I had a septal myectomy in July (at age 73, like you), the surgeon also repaired my mitral valve.

I was told Medicare (and my supplemental insurance) did not cover cardiac rehab for the septal myectomy, but they did cover it for the mitral valve repair, so I had 12 weeks of cardiac rehab starting about 8 weeks post-surgery. If you had mitral valve repair and if this quirk in insurance coverage applied to you I assume your providers would have known about it, but it wouldn't hurt to ask.

Either way, good luck with your exercise program. Six months after surgery I am back at the gym 4 or 5 times a week, doing 40 or 50 minutes of cardio (treadmill, rowing machine, and/or elliptical) plus some moderate resistance training.

Each of us is different. Progress at your own pace and listen to your body.

Congrats on the successful surgery.

@joeymopete
After my septal Myectomy, I was told that Medicare wouldn’t pay for rehab. So my Dr told me to walk five minutes, 4 times a day. And gradually increase it each week. My surgery was September 26th and now I walk twice a day and average 3 miles each walk. Sometimes I do more, sometimes I do less. But I’m pretty consistent with 5-6 miles a day. Since I’m retired, I’m thinking of walking as my job. I feel so much stronger and don’t need to nap anymore. I’m expecting to feel 100% by my 6 month post surgery date.

@walkinggirl
Thanks for your interest.
If I understood correctly we do not need to do the dna test again. Researchers will use our sample and, I assume, they will notify us if our gene is identified.
My grandchildren have not had echos. I understand, protocol is that doctors/insurance will only do them if my their parent is diagnosed. It makes no sense to me! I continue to follow up on this! At least…my two kids are in their 40’s and show no signs of HCM.
Mayo doctors told me I would receive cardiac rehab and that I needed it to determine how my heart reacts to exercise. My nurse told me “everyone goes home with a cardiac rehab schedule.” I was then informed by Mayo (when I got home) that Medicare does not pay for it for HCM myectomy surgery. I could pay for it at around $350 a session. Maybe some people’s supplement pays it. I have not gone yet but invested in an Apple Watch and find that my heart rate, at least, is in a good range during exercise. I have a cardiac PA visit coming up and I can discuss some of these things further. It’s all a learning experience!

@joeymopete You had your myectomy in December, seven weeks ago and I am so glad to read that you are doing well and are excited with your renewed lease on life! I, too, am among the people who have not shown a mutated HCM causing gene, perhaps when I get tested again in a couple more years, the naughty one will have been discovered. Your family is wonderfully proactive with echoes, have the doctors of your grandchildren been told of your HCM? My grandson (16) goes to a pediatric cardiologist every 2 years for an echo (unfortunately, his insurance will not pay for it), to be sure he is OK. Has your doctor suggested cardio rehab for his/her "fairly active" patient (you)?

Do you remember what your septum measurements were?
What was your gradient?

I was diagnosed with HOCM a little over a year ago when my primary care doctor Dr. Houston (Mayo, Red Wing) felt that I should have an echocardiogram for my shortness of breath symptoms. That test and a stress test showed I had HOCM and a record gradient of pressure on my heart as well as regurgitation of my mitral valve. I tried Metoprolol and Diltiazem but they did nothing for me so Dr. Ommen (Mayo, Rochester) offered me four options and told me to go with my gut. I did. I chose a myectomy through open heart surgery with Dr Rowse (Mayo, Rochester).
I know of no one in my family who had HMC. Many of my relative have had echos now including my grown children and so far no sign of it. I did the DNA test but I was not in the 17% of known genes.
I’m 73, fairly active, and a grandmas of five. I am seven weeks out from surgery, my shortness of breath is gone, my asthma symptoms are gone and though I still continue to build up my strength, I’m excited about my renewed lease on life.

Hi im Tammie. Im 51 and have HCM along with Ehler Danlos Type3. I have a subcutaneous defibrillator because of the ehler danlos. Ìm now in a grade 2 diastolic dysfuction. I nursed in critical care for 23 years before these genetic conditions forced me into disability. I also passed these conditions down to one of my sons who has all of this with pots. However the doctors here in our home town are really good doctors but not really specialized in our diagnosis so i would really like to have a care team from mayo that is more advanced in dealing with complex issues such as mine and my sons.

@karukgirl
My doctor is at St Francis in NY. I have my first echo since starting camzyos next week.

So many thanks for your supportive letter! I have a group of nurses at UCSF who serve as a firewall between the doctors and the patients. So, I'm not able to get through directly to the doctors. One of the nurses got angry at me when I asked a sincere question about the ICD-pacemaker implantation. Her answer was: We've discussed this many times! But I was still terrified. You are right, I've had a lot this year. I also had a craniotomy to remove a brain tumor last year which resulted in a coma. Two weeks after my ICD implantation (September 8) my best friend of 40 years died suddenly. I gave the two hour memorial. UCSF says I must have this AV node ablation or risk the slow erosion of my heart. I guess I don't want that. But I know so little about the success rates of the AV Node ablation. This morning I agreed to the ablation at UCSF but not before Christmas. I will read the links. Thank you!

Hello Jen, @jih123 , and welcome to Mayo Clinic Connect.
Gosh...you certainly have had a tough journey, haven't you? You have been through a lot!
And you have comorbid conditions that require more than one specialty.

It is concerning and worrisome being told that you need to have a procedure (AV node ablation) so no wonder you are feeling depressed.
I would too!
Here is a link from Mayo Clinic on AV Node ablation and another about Atrial Fib:
https://www.mayoclinic.org/tests-procedures/av-node-ablation/pyc-20384978
https://www.mayoclinic.org/tests-procedures/atrial-fibrillation-ablation/about/pac-20384969
And here is a link from the Heart Rhythms Conditions group that you may find interesting:
https://connect.mayoclinic.org/discussion/av-node-ablation-pros-and-cons/
You say you feel like you "somehow failed".
Nothing could be further from the truth!
These things are not in your control, but thankfully, our advances in medical treatments have allowed physicians to be able to treat these conditions today, that decades ago they could do little for.
It is a blessing that you have been a life-long athlete, ate well, didn't smoke, etc, all that is going to help you going forward.

Be sure that you talk to your healthcare team at UCSF. They are a Center of Excellence and trained to assure you of all the risks and benefits to this procedure. Ask them questions, share your fears and concerns. You say UCSF says "I must get the AV Node Ablation"...is there another piece to that statement? Like if this, then that situation? In my experience as a patient we are given the facts, and offered the experts advice to proceed to a surgery or procedure, not the we "must". The decision is yours.

You've come to Mayo Clinic Connect to find answers and to learn you are not alone, and you're not alone Jen, you have a lot of other patients with your same diagnosis.

My advice is to learn as much as you can so you feel empowered to be part of the decision process. You have to be your own best advocate and your own best friend.
You need You to be your best You!
Have you had a chance to write down a list of questions you have for your care team?
I suggest you read the links posted and do some reading here on Connect and get your list ready.
When do you see UCSF again?