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HCM-ers: Introduce yourself or just say hi
Welcome to the Hypertrophic Cardiomyopathy (HCM) group on Mayo Clinic Connect - a place where you can connect with others, learn about living HCM, share experiences and exchange useful information.
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I'm Colleen, and I'm the moderator of this group, and Community Director of Connect. I look forwarding to welcoming you and introducing you to other members.
Why not start by introducing yourself here?
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Hello. My fellow HCM’ers. I wanted to introduce myself and thank the moderators of this group who encouraged me to join you. Like many of you I was diagnosed with HCM last summer at 58. This last year the journey has felt like being on a roller coaster ride emotionally, educational, life changing with both trials and blessings. It has helped me grow as a husband, a Dad, an employee, proud veteran and made be a stronger human being reminding me each day is a blessing. In the course of my treatment I have climbed the medical system ladder. First starting being treated by my local hospital, then Northwest Medical in Chicago and finally now an active patient in the Mayo HCM Clinic. Over the last 2 years I have made dramatic changes in my health. I lost over 80 pounds with 60 pounds to go. I changed my diet and now cut out almost all processed foods and on low sodium diet, I have been more active. I have grown my faith and changed my mental outlook from focusing on the negative in life to now focus on the blessings we all are given each day. Currently I don’t have HOCM yet and are in the early stages of this disease and are on some diuretics to control fluids. Some days are good others are not but finally have a treatment plan that working. Once a year I do my pilgrimage to Rochester to meet with the world HCm experts and feel so blessed that they are now part of my medical team caring for me. I am not an expert of HCm but have learned a lot in the last 2 years Name a heart test and I have done it. I am here to continue to grow and learn from you and vice versa share the bits of wisdom I have picked along this journey. Greetings to all you !!
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2 Reactions@hcmlvhrm1 Welcome to our merry band of big-hearted people! I see that you have been a part of several other blogs, including the related ICD blog. HCM is never a blessing, but it motivated you to take charge of your overall health including diet. Perhaps that is a VERY LITTLE bit of a blessing in disguise. By this time, you have probably done much research to find out all you can about this inherited disease. Have you read https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198? Another excellent resource is the Hypertrophic Cardiomyopathy Association 4HCM.org which provides free podcasts and zoom meetings on various topics related to HCM. Has anyone suggested genetic counseling? Such counseling may (hopefully) identify the specific gene causing your HCM. If your naughty gene is found, your children can be screened, those who have the HCM causing gene can screen your possible grandchildren. In my case, 123 genes known to cause HCM in 2022 were tested and all were normal. My son gets an echo every 5 years and my teenaged grandson every two, so far, they are fine. My first symptom that something was amiss was a heart murmur heard for the first time when I was in my 50's. Here is a link to read about genetic testing: https://www.mayocliniclabs.com/test-catalog/Overview/617281. Looking back, my dad most probably had undiagnosed HCM. Have you family members that showed symptoms? Again, welcome and we hope you will share your story as more chapters are added. I am so glad you are a patient at Mayo, you are in the best hands.
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2 ReactionsHello everyone. My name is Maria, and I am 60 years old. I am not officially diagnosed with HCM yet as I have not seen a cardiologist. I had a recent bout of asthma exacerbation that is not that is not getting better. My Pulmonologist ordered a CT chest and echocardiogram because of persistent shortness pain and chest discomfort. Both tests are highly suggestive of HCM with the echo report indicating a left ventricular mid-cavity obstruction. I have so many questions. The one the sticks out right now is my job. I am currently working as a Registered Nurse in a hospital, and it is a physically demanding job. I am currently on short-term disability With my ongoing symptoms where I get episodic shortness of breath and chest pain at rest that worsens with activity, I don’t know what would be a reasonable expectation to return to work. I am working with Occupational Health regarding my return-to-work status. The last time we met with my symptoms the way it is, the doctor thought that I can be placed on light duty “sedentary” assignment. I balked and told the doctor that I can’t even walk without becoming short of breath that I don’t know how I can be productive on the job. This was before the cardiac anomaly came to light. I am expected to see Occupational Health back before my leave expires. As it is now, I am still symptomatic, and I have not been referred to Cardiology (the echo was just done yesterday). I don’t know when I can be seen. In the meantime my leave clock is ticking, and I have no plans in place. Is it reasonable to ask for an extension of my leave?
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3 Reactions@mariapheneger I would surely think it reasonable at this time until you have a plan in place and have started on a treatment. This can be a serious condition. You need time to get your health back!
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2 Reactions@mariapheneger with you working at the hospital I would suggest you go to ED based on your symptoms and explain how you cannot walk without having breathing difficulties. You could also review your recent exams with them focusing on the echo. They should be able to connect you to a cardiologist quickly. It sounds like you need to be seen soon, especially if you have obstructive HCM. This may also help with any extension of short term disability if needed.
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1 Reaction@mariapheneger Welcome to Mayo Connect and the HCM blog! None of us would choose to belong to the big hearted warrior club, but here we are helping and encouraging each other. As a nurse, you know more than the average person about hearts and from your post, you are very aware how it this impacting your life. I don't know where you live, but strongly suggest that you affiliated with a COE (Center of Excellence) for the very best care. There may be cardiologists at your workplace who are knowledgeable in HCM or can refer you to one. @joeymopte and @mbharris posted, it is important to follow up and be your own advocate. Be a squeaky wheel as long as you need to be to receive the treatment you need and get back to your life. Please share updates as your journey along this highway, we are all on it, too!
@mariapheneger Here are a couple of links to information you may wish to pursue. Do learn all you can about HCM, it will help generate questions to ask your doctor. https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198 and https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/care-at-mayo-clinic/mac-20350208. I also highly recommend affiliation with the Hypertrophic Cardiomyopathy Association 4HCM.org where many people have an intake interview (I did) and are assisted in developing a plan to see well qualified cardiologists. Everyone is different with this awful disease, and I sincerely hope you take the next step in seeking treatment. How will you proceed?
Hi I'm Mike Melling, 52, from Lee's Summit, MO. My cardiologist referred me to Mayo due to having a thickening of the back wall of the heart he had never seen before. He said said this is HCM but not in the usual area. I've been having shortness of breath more often in the past few months and am taking 40 mg of furomeside everyday for some edema. Now is the wait for the video evaluation with the doctor there.
Hello @mikemelling , and welcome to Mayo Clinic Connect.
I'm so glad you found the Hypertrophic Cardiomyopathy group, and also that you have been referred to Mayo Clinic...you could not be in better hands!
Is your video evaluation scheduled yet?
Do you have your list of questions ready?
Being prepared in advance with a list will help you keep on track as you meet virtually.
There is a lot to take in after learning you have this condition, and the Mayo Clinic is a world leader in HCM and complicated cases.
Here is a link to HCM on the Mayo Clinic website:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
It sounds like you have become somewhat symptomatic, so it's good you are finding out now what you have going on.
Are you otherwise healthy and active?