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Hello and new to the group with HOCM diagnosis
Hello everyone,
I was diagnosed with HOCM this summer with multiple echocardiograms and an MRI. I had the genetic test, but no gene was identified. My father died of heart disease when he was 60, and there is a pattern of multigenerational paternal heart disease. I'm 74, athletic, fit and other wise very healthy. I am grateful for the good medical care I've gotten. It was a big surprise to have heart disease. Although I had been told occasionally that I had a murmur no follow up was recommended before this time. I am currently asymptomatic. I am taking Metoprolol 25 mg once a day in the evening, and instructions to stay hydrated. The obstruction is the mitral valve, and there is regurgitation and a moderate gradient.
I'm so happy to be part of this support group and will contribute anyway that I possibly can. Like many of you, I have faith in the Lord, and I am very blessed to have had a long and healthy life. Sometimes in the beginning of this journey, I was very frightened that I would suddenly die, or that I had "given" it to my two sons. Since I've learned more, I am calmer, but a bit obsessed!!!
Any suggestions are warmly welcomed. I wish you all a happy day and every success going forward.
Margie
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@walkinggirl thank you for your wise and thoughtful reply. I will find out more about my appointment in LA at UCLA.
@margieinsb
I do not recall if my gradient was high or not. FYI: I also have cardiac amyloidosis (stiff heart syndrome) and my heart does not pump adequate blood to my brain so I experience ischemic strokes. All 4 of my heart valves also regurgitate blood but not significantly. I also have a hole high in my heart in the septum. Surgery was tried through my femoral artery but the leads for my ICD interfered so it was not successful. I was placed on Eliquis to avoid blood clotting.
Jim
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2 Reactions@margieinsb
The alcohol septal ablation was done when I was awake. Naturally I questioned it but was told the surgery needs to be done that way. It was uncomfortable but the surgery was a success. My breathing improved tremendously.
Jim
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2 Reactions@jachrist
Thank you for taking the time to tell me more about your ablation - that you were awake and it helped your breathing.
Best regards, Margie
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1 Reaction@margieinsb
Hi Margie,
I, too, have had GI side effects on Metoprolol. I’ve been on it for almost 7 mos now. They started me at 25 mg & increased me after one month to 50 mg once a day. I had other side effects too (dizziness, breast tenderness) so they first tried switching me to Carvedilol & the GI upset was actually worse. They also tried me on Verapamil, which I had problems on too. The side effects on Metoprolol come & go. The dizziness is less now that I’m taking it in the morning. But the other side effects are still hanging around. I’m about to start on Myqorzos, as soon as my insurance co approves it. I’m hoping I tolerate it but am somewhat anxious about side effects on that as well!
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2 Reactions@danafitz
Dear Dana,
Thank you for sharing your medication experiences. I thoroughly understand how difficult having gastrointestinal issues can get. I truly hope you have success and tolerate the Myqorzos with no side effects. Best regards.
Margie
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2 ReactionsMargie,
You sound a lot like me. I'm older but had the same reaction. But 20 years later, at age 80, I'm fine. I've got to tell you during my 20 years, hcm research has been very encouraging. My key word of advice is "never stop moving". Staying active is critical to quality of life for me. Some people stop moving out of fear of overworking the heart. Talk to your cardio. Depending on your data, your cardio will recommend the level of activity perfect for you. My dad and his relatives had cardiac problems way before anyone knew about hcm. So, I didn't know about potentially getting it genetically. He never knew he had it. There are miracles often in the research and hcm science. I'm glad they found it. Knowing is so much better. Now you'll check out any symptoms earlier. A good cardiologist will stay on top of it. Life is darn good for me. I check out any symptoms and it's usually nothing or a med change is needed. Check out an international organization at 4hcm.org based in NJ. I attend online seminars to keep up with what's new with hcm. Cleveland Clinic has a lot, as does Mayo and other incredible universities. My father never knew. I feel luckier to know and to have an amazing team taking care of me. Sending hugs!
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4 ReactionsDear friend,
Thank you for sharing your HCM journey with me so kindly. Your reflections and insight are very helpful.
Right now I go to Pilates classes and walk 2 miles a couple times each week. Before my diagnosis this summer I attended more vigorous exercise workouts.
I’m sorry that your father and loved ones suffered heart disease, it was so sad to lose my beloved father when I was 21 years old. He also had diabetes -and died in 1973. Medical care has advanced greatly since then. I doubt that he ever had an echocardiogram.
We are blessed to have excellent care at this point. I’m excited about the new medications. Do you mind sharing with me what medication or treatment you’ve had?
Sending my thanks and prayers for your kindness and empathy.
Very best wishes for your continued health.
Margie
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1 Reaction@margieinsb Twenty years ago, they found it via an echocardiogram. It was urgent then as I couldn't walk 10 feet. I was weak. I had afib.
A new cardiologist read the echo, apologized for the practice missing it for years, and urged me to fly to Mayo quickly. Had a septal myectomy at Mayo. Reversed everything. Got my life back. Since then many med adjustments and on losartan and bystolic now to regulate blood pressure. No gene identified for me either. I think they're learning more every year about the genetics. Doesn't matter. I have hcm. Every 2 years, get very definitive cardiac MRI. Every year an echo. The word incurable really initially scared me. Looking back, I had no idea life would be so good at 80. I do less vigorous exercise now too. But I keep moving. Not often discussed here, found a relaxing hobby too. For me, it's art. Self taught acrylic painter. Stay socially connected. Volunteer too. You would not know I was dealing with hcm today. I do a lot of volunteer work with 4hcm.org to increase hcm awareness, so one day physicals, especially for kids, will include more cardiac related tests. 4hcm.org will tell you of sudden cardiac death of kids whose family, like us, did not know about hcm. My life is really good. More wrinkles, but good! Lol I never knew my initial fears would result in decades of this quality of life. Not sure I'd still be here today if 20 years ago, we didn't figure out the murmur was hcm. So very blessed. The other thing not often discussed in support groups is I had my son checked and notified my large Italian family of this genetic disease, so they could decide to get checked. Many probably did not get checked because of fear, but I felt that obligation to inform family. Personally I'm very glad I know!
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3 ReactionsIt’s wonderful that you’ve made your family aware of HCM and kudos for your volunteer work. Thank you.
I have two sons one 46 and one 52. Both of them have been urged to get echocardiograms, but I don’t think they are serious about doing so yet.
You were very brave to get the surgery! That has not been suggested yet for me as I don’t have the usual symptoms.
I love that you are an artist. I worked as a designer and still enjoy remodeling projects.
Let’s keep in touch and encourage one another in this way. Best, Margie