HCM-ers: Introduce yourself or just say hi

@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.

@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!

Hello 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?

@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.

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 !!

@ceclark41, you ask " Do I have to provide the ultrasound report from two years ago? "

If I recall correctly, you have been a patient at Mayo Clinic Cardiology. Are you wishing to have Mayo Clinic experts review recent imaging?

I have hypertrophic cardiomyopathy with a "suicidal heart" at age 84. Do I have to provide the ultrasound report from two years ago? My interventional cardiologist is very skeptical of my better health.
With a recent asthmatic bronchitis viral infection, I have a lower heart rate about 2 am.
There is a new pneumovirus reported as more infectious this year according to recent reports.
I'm hoping that I gradually have better heart health. I'm taking daily multivitamins with more vitamin C to reduce my hands and arms bruising, not just weekly! I have a reciprocal exercise cycle at home.
After 3 series of cardiac rehabilitation locally, the last one was not as good; I think I will do better at home.
Living in Eastern Washington State, I welcome our springtime which will include drought.

Hello there @ceclark41 ,
I see you have posted in the Hypertrophic Cardiomyopathy group...is this a new diagnosis for you along with your other heart issues?
I'm glad to hear that at least you are getting approval for a cardiac monitor, a heart rate of 44 is rather low.
What brings you to the HCM group?

C. Elizabeth at 84, recovery from recent asthmatic bronchitis results in low heart rate with coronary artery spasms with an LAD myocardial bridge. My cardiology group noticeably has slowed its response for effective treatment. A month later, my appointment for a cardiac monitor is finally accepted for next week. Is Medicare planning to not care for me?My heart rate dropped to 44 this early morning!

@mbi Welcome! It's about 6 months since you had your myectomy and you are moving ahead! You seem to be doing well! It's great that you are walking which I am always told is the best exercise and are mindful of the two other important partners to good health you can control. Do ask your cardiologist about further things you can do. We've had postings on our blogs from people who needed another myectomy, the outstanding factor seemed to be that it was done at a non-COE. Do ask your cardiologist about the liklihood of another surgery; you had the best perform yours at Mayo!