HCM-ers: Introduce yourself or just say hi

@luckyhowreyou I didn’t realize I responded to a listing from ten years ago. Didn’t see the date until I reviewed it again. Shows you where my head is! So overwhelmed I don’t know if I am coming or going. And trying to navigate past bills from tests and upcoming estimates as well. Getting different answers from insurance and hospitals. OMG.

@luckyhowreyou You had this HCM all your life, it's inherited. If we ask 100 different people their experiences, we will hear 100 different stories. I was asymptomatic until I was in my late 50's/early 60's. It very slowly became worse -SOB- and when I was 75 needed a septal myectomy, 3 weeks shy of my 76th birthday. Life is very normal and active.

Yes, a very few people have sudden death, a friend's husband is an example, thought it was a heart attack, was undiagnosed HCM. DNA test done, the gene was found. His brother, brother's 3 adult kids, my friend's two sons were all tested 3 of these people have the gene and they are all closely monitored, one got a pacemaker.... The point is that once you are diagnosed and receiving care, it becomes a chronic managed disease geared to your unique needs. I take 50 mg Mettoprolol every morning to keep my heart from "working too hard."

It's so frustrating to manage insurance and all the rest. Would it be helpful if a relative or friend can work with you to keep all of these things on track?

Where do you receive care? How has HCM affected your daily life? Are other blood relatives monitored?

Hi,

My name is Sue. I was formally diagnosed with HOCM 7 years ago after being seen by cardiologists 10 years prior for " coronary artery spasms" diagnosed on a cardiac cath.

I have been a patient at Mayo for over 6 years, feeling blessed to have my primary management there.

I live in Racine County in Wisconsin and maintain my annual visits with my cardiologist. I also see a cardiologist nearby, for the just in case emergency and have clearly stated the main direction would be from my cardiologist at Mayo.

2 years ago I had chest symptoms that were not diagnosed by an ER, local cardiologist or primary care physician. One message to my cardiologist prompted a referral to Pulmonology at Mayo. It was at that visit that a longer term (symptomatic for 4 months) pericarditis was diagnosed and immediately treated.

I am so thankful and pleased with the outstanding care I have and continue to receive at Mayo.

@luckyhowreyou You are definitely not alone here! From your post, I believe that you are taking this one step at a time. May I recommend that you look at the website 4hcm.org of the Hypertrophic Cardiomyopathy Association? This organization helps big-hearted people like us navigate this journey with HCM. There is a link to schedule an intake interview, no obligation and no cost. You will probably be glad to know that this organization lists Northwell Health/Northshore University as a COE (Center of Excellence) for HCM. LIJ, in New Hyde Park, is affiliated with Northwell. (I am originally from LI, the hospitals and their systems and affiliates are now all unfamiliar to me.) NYU Langone is the other COE. Please do keep us posted as you move along!

@walkinggirl thank you. I did some research and saw LIJ/ Northwell Northshore was awarded the COE in May of this year. Very happy to hear that. Also one of my physicians who is affiliated with them mentioned their heart center was excellent when I brought up St. Francis. Getting a recommendation from a health provider is great. Also my NP in my pop office worked in cardiology there for ten years recommended them highly. She even said she would call to see if any one of her previous coworkers is still there. I would love to go to the Mayo Clinic as a previous boyfriend grew up in Minnesota, but they do not take my insurance and traveling would be difficult.

Hello everyone. My name is Elias and I live in New York. I was diagnosed wth HCM in 2015. It was discovered by chance as I had never had a symptom of HCM. From being a Hyper, full of energy kid and always very strong when someone needed help, running 5 times a week...fast...about 7 miles a day on a seasonal schedule to dancing the night away...never a hint. The only symptom I realized I had was I would sweat much more than others when running back and forth at an airport or an event where I had to get things done in a certain. Being hydrated helped that. I will stop here as I don't know if I have already written too much for a newbie. I am very happy to be here.
Elias

@eliast Hello Elias and welcome to Connect! No, you have not written too much for a newbie, you wrote what felt right to you at this time. You have been living with HCM and reading between your lines, you are wondering how this will affect your very active life as you go forward.
We do not give medical advice, please ask your doctor for guidance with running. Yes, staying well hydrated is extremely important even when you are having a less active day.

Where are you receiving care? We highly recommend a COE, Center of Excellence. When you say NY, do you mean the city or in the state? Langone, part of NYU does it all and Columbia U has a HCM Center. If you live in the city, lucky you, public transportation can get you to either place.

We encourage people to learn as much as possible about their HCM diagnosis. Knowkedge is Power. In your browser type Mayo Clinic HCM and choose informational links. You will read about causes, symptoms, tests, treatments and more. You are a unique individual, your treatment will reflect that.

You will read that HCM is almost always genetic. Have other family members been diagnosed? Experience heart issues? Because you have hcm and known about it for 10 years, have relatives been monitored for it?

Have you had diagnostic tests? What has your doctor said? Looking forward to hearing from you.

I am a seven year-old female with obstructive HCM… Prior to three years ago they had me on high doses of metoprolol and I could barely function… No energy tired all the time and a lot of weight gain. I was finally sent to an HCM Center where I had the cardiac MRI and the echocardiogram. My gradient was 120 and my septum thickness was 18. I was a great candidate for CAMZYOS REMS program and they got me on with a grant. I was on 5 mg for the first six months with almost no difference in EF or ingredients so they move me to 10 mg and my ingredients went down to zero! EF was also improved no data whether or not my septum thickness was changed. I was taken off metoprolol except for a low-dose at bedtime. I am also an asthmatic and get fatigued easily and cannot bend over without lightheadedness and dizziness. I do not feel that the CAMZYOS has contributed to fatigue, and since I was previously asymptomatic, I don’t have much comparison other than that I still have a lesser amount of shortness of breath from my asthma and cannot do any heavy activity without shortness of breath and fatigue. All in all I think CAMZYOS is good and I’m glad to see the price coming down some because I wonder how long grants will be available

@jules21 Hello and welcome to Connect! I see you posted 4 different discussion items, in this one you shared your experience with Camzyos. You are 70 (correct?) and metoprolol made you quite fatigued. Along with HCM you are also living with asthma.

You attribute the shortness of breath (SOB) with asthma rather than HCM, it must be a challenge to pinpoint! What does your doctor say? Ask if "gradient was 120 and my septum thickness was 18" is significant obstruction. Do ask the HCM doctor if your fatigue, lightheadness, dizziness is due to obstructive HCM or the asthma - or both. I am glad to read that Camzyos seems to help!

We encourage people to learn all they can about HCM, helps generate questions from you and enhances understanding as doctors explain things about this disease. Here is some information you may wish to read: https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198

When did the fatigue and lightheadedness begin? Ask if the asthma meds you take, if you do, react well with the Camzyos.

@walkinggirl
Thanks for your note
I have HOCM and I have borderline asthma as I mentioned…. I had a heart murmur that went undiagnosed for almost 30 years until four years ago when I first got an echo and diagnosed me. I have low blood pressure, no blockages no a fib. I’m a never smoker and a non-drinker… Yes, shortness of breath did initially come from HCM and the metoprolol that I took for the first year. My shortness of breath has diminished quite a lot with CAMZYOS. I avoid things I’m allergic to so my asthma is usually under control.