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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.
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I have just been informed I have HCM. The genetic testing was positive. Waiting to here from Doctors. I switch to the Mayo Clinic on Oct 23 2017 after going through a stroke 5 years ago. Then 2 years later I had a SCA was shocked 9 time by EMT’s. Had a ICD implanted at this time, and since then I have been Shocked 15 times in the last 2 years by my ICD. I look forward to learning more from others who have been there done that.
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1 ReactionI have just been informed I have HCM. The genetic testing was positive. Waiting to here from Doctors. I switch to the Mayo Clinic on Oct 23 2017 after going through a stroke 5 years ago. Then 2 years later I had a SCA was shocked 9 time by EMT's. Had a ICD implanted at this time, and since then I have been Shocked 15 times in the last 2 years by my ICD.
Hello, this question may have been asked and answered, but I didn’t see it. I live in Mississippi and was diagnosed in Feb ‘17 with HOCM. My local family doctor has suggested I see a specialist as a proactive measure. I have had an echo and electocardiogram from our local cardiologist. Where would you suggest I go? I follow another group that list the HCM Centers of Excellence but I just don’t know where to begin. Any input is appreciated.
Hi Kanaazpereira
Thank you for your reply. My husband also has Afib and I guess for that reason doctor's were saying may be u should do MAZE Procedure as well. It seems like there are side effects to that. I wanted to see if someone did this procedure and how do they feel.
How are people dealing with stress and fear of surgery??? We have 2 little kids and I am freaking out...what is the worst that can happen. My husband is scead too but he is not saying it out loud but I feel that..
I have introduced myself already but did not know where to post on thread of my post surgical of HOCM. I am three days past. Wow pain and very short of breath. The hardest thing to do is cough to clear the lungs. Best suggestion I can give is your respiratory care helper. Become their best friends. Pain levels are holding around 8 on day three but pain meds are helpful. Do not try to be a hero. Use the pain relievers. As long as I am not in pain, I can slowly walk with a walker and get myself up to potty. Eating is off. Can drink well. bowls a issue. So how did surgery go? Well I am so thankful I did not put it off anymore. I was obstructed more than thought. 80% is scary. Dr.s thought it was 69, Lesson here, the drs do not know what they can know until they put their eyes on the inside of your heart. Valves fixed as well as could be. a slight leak left on the mitral valve. It was necessary in me to get out quickly as the body was stressing. Daily there a good times. Without the drugs to push forward, this would be misery
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1 ReactionAre you being treated for your symptoms? It sounds like you could definitely use some help. Have you been seen at the Mayo HCM Clinic or any other HCM center?
Septal myectomy should make you feel alot better afterward. It will relieve the obstruction your heart is feeling. As for the MAZE, that is usually only done for patients who also have atrial fibrillation before myectomy. The hope is that it will restore you to normal sinus rhythm. I have not had one. It is not that common, but it is not uncommon either. I hope that helps somewhat. Sorry I can't be more specific. As it is open heart surgery, of course, there is always the risk that something will go wrong. However, at an expert center like Mayo, the chances of that are very small.
Wishing you all the best.
Hi Jim Hoffman here. Have gone from marathon runner to barely able to walk around the block. Sound bitter? Yes a bit. I am 81 plus and I guess I should be thankful that I am currently getting up each day. I will try to be more cheerful in the future.
Hi @jshah,
@cabgx6maze517 has written about having Cardiac Artery Bypass Graft x6 with Maze procedure; you can see his comments here:
https://connect.mayoclinic.org/discussion/hi-everyone-i-am-glad-to-be-a-part-of-this-community/
@patinhou was also considering the mini-maze procedure. See her comment here: https://connect.mayoclinic.org/discussion/good-morning-im-almost-66-years-old-with-infrequent-afib-and-on/
@jshah, may I ask why your husband is considering the Maze surgery with the septal myectomy surgery?
Hi kanaaz Pereira..he was not having any problem..at regular check up he was diagnosed with some murmur doctor suggested us for 2d eco..after that we came to know that he is having HCM with COA ...at 5 months of age he was operated for COA hoping that HCM will improve .but it didn't help nd later at 1.7 years of age he had another surgery for SCAM...he is under medical supervision nd at present is gredient is 90 Nd doc are sugesting for another surgery..at present he is taking metarol 25 mg twice a day...we have been told that there is no medicine to cure HCM .Is there any further development which can cure HCM.
Their is no family history of HCM
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