← Return to HCM-ers: Introduce yourself or just say hi

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@jamienolson

Hello @fitchizumi, I would like to Welcome you to Mayo Clinic Connect. We are happy to have you joining our HCM group. I’m sorry to hear about your chronic long term health issues.

I would like to introduce you to other HCM members- please meet @lisa7, @debcrawford, @lynnkay1956, @quinn, @PatMattos. All people who are here discussing HCM. While we wait for the mentioned members to read your post- What questions do you have for them? Would you like to ask about exhaustion? Maybe there is something that is working for others that will also help you?

Have you had more than one opinion on a surgical option?

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Replies to "Hello @fitchizumi, I would like to Welcome you to Mayo Clinic Connect. We are happy to..."

What can I do about being exhausted all the time. I walk each morning about 1/2 to 3/4 of a mile. After a full night sleep I still wake up exhausted .

Get a date for surgery.

Do you feel tired, or more like out of breath? If the problem is feeling sleepy, maybe they can adjust your meds? You might be able to try a different dosage, or another type of drug like a beta blocker or maybe diltiazem, which is a different calcium channel blocker. Do you know if you are obstructed or not?

I struggled with verapamil , ca calcium channel blocker. It made me dizzy and tired. I then went to metoprolol, a beta blocker, which agrees with me more.

Was on Metoprolol,can’t take it I’m on the verapamil 120 now. Was 180mg. All that’s left norpace. Still having extreme fatigue. The heart doctor tomorrow!

Wishing you well, @fitchizumi. Please keep us updated after your appointment with the cardiologist tomorrow.

Dr. doesn’t think verapamil 120 is the cause of my fatigue. They’re going to do some bloodwork and check to see if I’m anemic! He said,heart is strong, HCM & Afib are my biggest problems. He doesn’t think I’m ready for surgery yet. See him in two months.

Ronald, I am always very fatigued, Plus my head never feels clear. I’m allergic to lots of medications . Metoprolol bothered me.Take Xarelto 20mg & verapamil 120 for the heart. I take a lots of medications for chronic health problems. don’t know what medicine bothers me. Could be a combination of everything I take.I could’nt handle a lot of blood pressure medicines pre HCM, in the past.

Hi @fitchizumi,

I hope you are keeping well. Have you been to the cardiologist for a follow-up?

Hi, Seen my local cardiologist he keeps saying I'm fine. Got a copy of his info about me after my January visit. It's "there's a dynamic left ventricular outflow obstruction" she definitely has hypertrophic cardiomyopathy with asymmetric septal hypertrophy. My husband and I decided we're going to get hooked up with someone from a center of excellence. In November I go to Lehigh Valley Hospital PA to see a specialist in HCM.my local cardiologist probably will not enjoy this but that's the way it is. I asked him two months ago if he knew a center of excellence he said I don't know what you mean. Then I asked if He ever had to send a patient ,for examples ,a my ectomy.he said two to Abington Hospital in is 31 year career. Hopefully he will except our decision to see a specialist and he will work with him. My cardiologist said I'm not ready for any kind of invasive treatment This past Friday I had PVCs extremely strong .the nurse practitioner finally got to me and thought it was caused by a combination of my G.I. problems ,possible drop in potassium. Thank you for asking, I think if everybody in the group and keep everyone in my prayers. I'll let everyone know what the specialist says thanks again.

PS I'm having a colonoscopy on the 11th of this month to see what's going on there.Fitchizumi

Hello,. I made my own.appointment with a Dr. Schaff, the surgeon. I was advised by my endro to see my cardiologist, because my thyroid condition was up to the max level. I happen to run across a mayo webinar, of my Icd, doctor/ genetic testing, and Dr.Schaff. I then called and made an appointment for a surgery consult. Whala!!! . Hade the surgery January 9th, of this year. A miraculous recovery, and no looking back. So thankful that I am not shy about advocating for myself. Energy level had tripled, my whole outlook is better. One of the key factors in my decision to go ahead with the surgery was insurance was great, and I was still healthy enough to withstand a major surgery.

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