HCM getting worse?

@cash298 I found that sometimes you do have to take the lead. I've mentioned elsewhere that the local cardiologist that read my echo (which clearly screamed obstructive hypertrophic cardiomyopathy) in Sept 2023 only recommended another echo in a year despite many moderate to severe findings. Luckily I was concerned and made an appointment with a cardiologist @ Penn Med although I had to wait several months. She took one look at the findings and immediately suspected HCM and referred me to their HCM specialist. Penn Med is a COE and after additional testing, I was started on Camzyos in Aug 2024. Before I was started on Camzyos, the staff discussed different payment pathways and they did all the work. I have had to pay very little for the medication. Take it easy (emotional stress affects my heart), seek the best care, and advocate for yourself.

I was at the MAYO clinic for my yearly appointment when you emailed me. So sorry for the late response. Yes, my insurance, Blue Cross Blue Shield, does pay for part of my Camzyos. I am also in the REMS program through the drug company and they pay for part of it, too. Has your Cardiologist talked to you about Camzyos and how it can be covered? I find the staff at my cardilogist very knowledgeable about the funding issue. I have been a patient at University of Washington Heart Institute and now at Mayo clinic. Where are you located? By the way, when i moved from Washington to Arizona, I was informed that it was a good thing I had Blue Cross Blue Shield and not United Health Care since it is not widely accepted here. Have you found that Cigna is that way where you live? The reason I say this is Camzyos has changed my life. We pay for insurance privately so I can be covered for Camzyos because of my quality of life. It is a huge sacrifice for sure.

( Have you had the genetic testing to prove whether or not this is a pre existing condition? Just curious. I had the genetic testing and it wasn't proven this was genetic, however, my cardiologist explained that they only currently can test at a certain level and will soon have the ability to test on a "deeper" level)

@whidbey I had 123 known HCM genes tested after my septal myectomy, all were normal. The gene I have that causes HCM in me has not been discovered as yet - hopefully it will be by the next time I am tested (was told to check in about 5 years). You said "whether or not this is a pre-existing condition," and it is. Not everyone shows symptoms, but the gene is there. I never heard of HCM till I was in my 60's and had a heart murmur, testing - echocardiogram - showed the thickening near the mitral valve. The thickening grew worse over time (everyone is different with this), and it became obstructive. I realized my dad had it, I remember the symptoms. Hopefully, our specific genes will be found, meanwhile, family members are monitored with echoes.

@karukgirl
Thank you so much for responding.
I have been diagnosed for about 13+ years as an adult. I am 67 now. I became symptomatic about two years ago getting SOB every 30-40 steps. Soon after I developed Afib. I do no have the obstructive kind. The septal thickness is 2.3 cms. I am now having to manage both afib and HCM and its been challenging. I am having my second ablation tomorrow and hoping it works better this time. Not sure how thick it has to get before surgery is contemplated …..I realize there are other factors also of gradient and scar burden which is 7% ( MRI last week)
I am consulting and under the care at the COE in Houston. HOuston Methodist Hospital. Is there a need to get my case evaluated by experts at Mayo? Any input would be appreciated. I am a member of the HCM society.

@leenag Hello Again
I started the self referral process with the Mayo Clinic in Rochester and I got connected to Cardiology. They said they cannot do anything unless they receive a referral from my local cardiologist here. Is this what you also encountered. Is Cardiology the right department or is there a dedicated HCM center I should be connecting with. Also they don’t have a tele visit option as a first appt. I told them it’s just a consultation and assessment. I have MRI and ECHO that is from Dec 2025, that I can share etc. I guess if you could kindly share the process and what is involved I would appreciate it. I am in Afib now and not able to travel …….so not sure how all this is going to work. Did you use Rochester MN or another location. Thank you so much for your time and help with navigating Mayo.

For lucky123: I was not diagnosed until I had a heart attack at the end of a kidney transplant in the OR. I was pretty symptomless. But climbing stairs (with grocery bags) got harder and harder. When you find you are getting out of breath, stop, wait a few minutes for your heart to calm down, then proceed slowly ahead.
Listen to your cardiologist. And don't fret whatever. This can be treated.

@leenag My cardiologist here in Upstate NY contacted Mayo in Rochester. The people in the office here sent all of the information and I was accepted as a patient. That was in February 2022, received a patient number and invitation to open a patient portal account. First appointment was a phone conversation in May, surgery in July. One must be an insistent advocate for oneself or fall through the cracks - after the phone conversation, I was to receive a call from the scheduling department. No call. Called them after a week. No progress. Wrote on the patient portal - phone call from scheduling department received the very next day. Portal best communication tool once it's set up.

@walkinggirl
Thank you for your message. Do u remember if it was a cardiology dept or a special HCM team. The scheduler at the cardiology which is who I got connected to insists on a in person appt as the first appt. I prefer doing that after they have my data. She is just looking at me as a new pt. 🤷‍♀️

I'm 71 and have had symptoms for 20-30 years, gradually worsening. I avoided being honest because I didn't want there to be anything actually wrong as I am fearful of medical interventions and dislike taking medications. Based on a worsening heart murmur, I had an ECHO that showed severe mitral valve regurgitation and other signs of HCOM...I was completely shocked & really fearful at that point. However, I've been on Camzyos since 8/2024 with great results. Heart murmur is barely audible and I rarely have any symptoms. My fears turned out to be groundless and I am so grateful that I now understand why I've felt the way I did. I can only repeat what others emphasize and that is to make sure that you see a cardiologist that is a HCOM specialist.