HCM-ers: Introduce yourself or just say hi

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.

Hello @hansj
Welcome to Connect. I read your post and thought how similar your symptoms were to mine. It just seemed to creep up suddenly, but when I thought about it, I realized I had been slowly getting worse over time. How excited you must be that you were approved to use Camzyos and you already feel so much better. Having HCM and knowing how it feels to have to 'catch your breath' and even easy walking causes chest tightness is not fun. And thank goodness you didn't go through with the alcohol ablation! You are correct saying timing is everything! I see you are from Canada. There are several folks here from Canada also starting this new drug. From reading their stories it sounds promising. You say you started the Camzyos two weeks ago after being accepted into the trial and are thrilled with what it's done for you. It's good you were accepted and you shared your experience here on Connect with others. It lets you know you are not alone and there are others going through your same journey. Will they use an echo to look for improvement in the pressure measurement? Has your cardiologist told you how long you will be in the trial?

Hi, my name is Hans and I'm 59. I was diagnosed with HCM a year and a half ago. Such an odd issue to suddenly have. I've always felt very healthy throughout my life and had lots of stamina until about 2 years ago. That's when I noticed I was getting dizzy if I carried something up a flight of stairs, this has steadily gotten worse to the point where I couldn't walk a full block any more without chest tightness. My doctor sent me to a cardiologist who put me on bisoprolol. I agreed to an alcohol septal ablation last year, but it was aborted when they couldn't isolate the flow to the specific muscle that needed to be shrunk. I was then referred to another HCM specialist for surgery.
They say timing is everything, and lucky for me Health Canada just recently approved the use of Camzyos and I was accepted into the trial. I started taking Camzyos 2 weeks ago and I've already noticed an improvement in my ability to walk further (I managed a full shopping trip through Costco without needing to stop to catch my breath). I had no idea I'd be so thrilled achieving something that I didn't use to think twice about.

Hello,
I am Jayme.