HCM-ers: Introduce yourself or just say hi

Hello @john67 , you came to the right place if you are looking for information about Hypertrophic Cardiomyopathy. It sounds like your cardiologist has enough information to at least give you three options, as you say. I'm glad your cardiologist recommended a Center of Excellence for treatment. This disease needs top of the line medical input and if necessary the best surgical team available. It is overwhelming at the beginning, I feel, because it seems most people with this had no idea this was lurking inside their heart. They were mostly fine, bumping along with a garden variety heart murmur or some SVTs and then it seems like all of a sudden you notice you can't breathe, your heart pounds like a turbo charged diesel Cummins motor, and even simple chores make you short of breath. You get dizzy, feel fatigued and have brain fog. I kept telling myself I get dumber everyday! I don't know about you but I just sluffed it off to generalized aging. It came on gradually but seemed like it just got worse really fast. Each person is different, of course, but a lot of us share the same symptoms too. Then there is the whole genetic factor. Where did it come from, could any siblings or children have it too? Have they told you if yours is obstructed? If you don't mind sharing, what were the three options you were given? On Mayo Connect, you never know who may see your post and be helped by your story. Keep reading and researching. You are your own best advocate!

Hello Colleen. Thank you for the welcome. In 2009 and 2019 I had heart ablations for afib. There was no mention at those times of HCM. There was an Air Force cardiologist that first mentioned my HCM around 2021. Since my ablation in 2019 I have been short of breath, having difficulty walking up stairs, light-headed, dizzy. I sought out a cardiologist in 2022 who confirmed by HCM and recommended I go to a Center of Excellence. Being from South Mississippi the closest center is Houston Methodist. My cardiologist there ran the usual test, MRI, echo, stress test to confirm my diagnosis. He has now giving me the three options for treatment. This was only last week. So, I am beginning my research as to which option would be my best.

Welcome, @john67. You've come to the right place to learn from other HCM-ers. I'd like to start by getting to know a little about your HCM journey. When and how did you learn that you had hypertrophic cardiomyopathy? What treatment or surgery have you had or are you exploring options at the moment?

Oh @lvon, I'm so sorry to hear that you are not receiving the level of care you would expect from Mayo at the Mayo Clinic Health System in Redwing.

I strongly encourage you to contact the Office of Patient Experience
Mayo Clinic Office of Patient Experience
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Phone: 844-544-0036 (toll free)
Fax: 715-838-5999
Email: opx@mayo.edu
Online form https://customervoice.microsoft.com/Pages/ResponsePage.aspx?id=nP9fomM_sk-aitm90DIfmk8irnmlZwZOoNvrYDAn1mdUNVNYWkpPRkY1SElVRlhZMDhZTVo1TzZQSy4u

Is all of your HCM care done at Redwing or do you also consult at Mayo Clinic in Rochester?

Hello! My name is John and I just joined the group. I hope to learn much about HCM here. Thank you all in advance.

I am so upset with Mayo Clinic HCM care. I have been with the Mayo Clinic in Red Wing for 12 years. There are good Drs I am sure at mother Mayo in Rochester But unfortunately they staff their their smaller clinics with the least qualified Drs . The last imaging was not even viewed with me and in fact I was not even given any type check up at all. No stethoscope to heart , nothing. I blame the care on the Mayo Clinic and their relationship with staff. I guess one needs to cut ties with Mayo Clinic altogether.

That is so great @hansj! I had to have a septal and papillary myectomy. The drug was not far enough along for me to try and I needed help sooner than waiting would allow. I know from experience that it was mind boggling how I used to be able to _______________ (fill in the blank) but no longer could because of the chest pain, shortness of breath, fatigue, brain fog. Walking and having to stop more than 20 times. Short of breath hanging laundry on the line. Bending over to tie my shoes. You must be so encouraged with your progess. And no surgical scalpel in sight! I do hope you continue to post here so others who read about your progress may benefit. There may be somebody reading who has not even heard of Camzyos and they will be able to share this information with their cardiologist. So I take it that in Canada, the drug company is footing the bill for the drug cost and trial protocols, and after it is over you are not sure of what happens? And if you're putting away snow tires it sounds like Spring has sprung in BC 🙂

I don't know the length of the current trial, but am hopeful that BC Pharmacare covers the cost when it eventually ends and the program stops providing it.
I can't over-state the improvement this drug has made in my quality of life in such a short time. I did quite a bit of physical work this past weekend. I was able to put away snow tires and also built some furniture bases, none of that would have been possible a month ago without many rest stops to catch my breath or stop the dizziness.

Monthy echo's sounds like a good plan @hansj.
In my opinion, it takes courage to join a trial for a brand new drug, so I hope you will come back and let this group know how you are doing and how this is working out for you. A lot of people with HCM can benefit from your experience and that of others taking Camzyos. You never know who may read your post and benefit from your journey. Did your cardiologist tell you how long you will be in the trial? Weeks/months/years?

thanks for the welcome! yes, I have monthly echo's booked to make sure everything is okay.