HOCM, Alcoholism & Making Positive Changes

Posted by shampoou @shampoou, Aug 9, 2023

I am a 57 y/o alcoholic and once i was diagnosed with hocum 12 short weeks ago i changed my whole lifestyle juss like that. I quit smoking and drinking because i was scared to pieces due to my diagnoses of hocm. I havent looked back, best thing that ever happened to me. Has any one else made positive changes since finding out about thir hcm? Please share!

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@gusgundy

Some good days when I can walk my dogs, some bad days when I'm either to dizzy or to short of breath that I can't. I have been to the Mayo (Jacksonville... Dr. Yamadi(?)) in 2020. When Camzyos was approved, I switched cardiologists to one who participated in the study

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Isn't this condition so strange? Good days and bad days, how true. It is great you have been to the Mayo in Florida and you are in the system. So you got in the study but are not a candidate for Camzyos yet, do you know what the barrier is or how long it may be before you get the green light? Dogs are such wonderful companions, do your dogs do the happy dance on the days you walk them? What sort of dogs are they?

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I talked to my doctor at Mayo in Rochester and although I don't have to get a defibrillator right away he said eventually that's probably what I will have to do I see in your earlier comment you feel bad for somebody that has to get one from what my doctor said it's not a negative or bad thing from what he said there is no pain and it's not scary like perhaps open heart surgery I just saw your comment about being sorry that somebody has to get a defibrillator is there anything I need to know or worry about

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@karukgirl

Hi there Suzanne, I welcome you too, to this wonderful forum. I responded to you just a bit ago, and see your post here as well. I am very proud of your determination to put you and your life first over the things that control you. I was a dedicated smoker for over 42 years. I quit cold turkey five years ago. I know the difficulties of giving up my "friend" the cigarette. I thought I would never be able to enjoy life without them. That was a lie! I am SO happy I quit. I won't lie...I still crave one now and again...but the cravings slowly got further and further apart as I made it through one day, one week, one month, one year! I know that alcohol affects the HOCM heart by "irritating" it. It can make you feel like your heart is pounding like a drum, or working so hard like a turbo diesel, and doing 125 mph in the fast lane. I believe the further you get from your "quit day", the more you are going to realize how much better you feel. You have HOCM to deal with now, and although we do not dispense medical advice here on Connect, we share information with one another. That information is so valuable, because now you know you are not alone, you're not crazy, you really are experiencing weird symptoms, like head rushes, feeling terrible after a big meal, gasping for air with little exertion, fatigue, chest pain, neck pain, swelling feet...just to name a few.
12 weeks is a great start. It is a life-time commitment to you that you need to make, and you need to learn as much as you can about your condition. You need to be your own best advocate. A lot of cardiologists are not familiar with this condition and you may have to educate them! This group is here to support you, because we all know what it is like, and sharing our journeys may help someone else in theirs. I noticed the first week or two after quitting smoking, that I had more energy. What did you notice first about when you quit?

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Ty for yourbreply. All and all i am fewlin great. I dont miss the smokes at all. I was grouchy and lost the first couple weeks but def betr now! Yes u r rite, the cravings are now fewer and further btwn. Yes on the heart beating heavy with drinking...never while i was drinking but def afterwards as i was lying down and trying to sleep. I have an awesome cardiologist dr. Steve ommen at mayo clinic rochester. Ty for welcomi g me to this group

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@shampoou

Ty for yourbreply. All and all i am fewlin great. I dont miss the smokes at all. I was grouchy and lost the first couple weeks but def betr now! Yes u r rite, the cravings are now fewer and further btwn. Yes on the heart beating heavy with drinking...never while i was drinking but def afterwards as i was lying down and trying to sleep. I have an awesome cardiologist dr. Steve ommen at mayo clinic rochester. Ty for welcomi g me to this group

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Dr. Ommen is a super star!!! So glad you have the BEST! He is probably the top doctor in the US and most likely the entire planet for all things HCM/HOCM.
I'm so glad you shared your update. I have not smoked in over five years, and honestly I am so very grateful I was able to quit, cold turkey. The cravings are gone, but when something stressful happens, I do have the urge for a smoke...I just ignore it and it goes away. I'm never going to be a slave to the stupid little cigarettes again. Done! I am impressed by your determination to do something to improve your life and your health. Your story may help someone else who thinks they just can't quit smoking or drinking. You are living proof of what tough determination can do! Great to hear back from you! Keep focused. Stay strong!

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@karukgirl

Dr. Ommen is a super star!!! So glad you have the BEST! He is probably the top doctor in the US and most likely the entire planet for all things HCM/HOCM.
I'm so glad you shared your update. I have not smoked in over five years, and honestly I am so very grateful I was able to quit, cold turkey. The cravings are gone, but when something stressful happens, I do have the urge for a smoke...I just ignore it and it goes away. I'm never going to be a slave to the stupid little cigarettes again. Done! I am impressed by your determination to do something to improve your life and your health. Your story may help someone else who thinks they just can't quit smoking or drinking. You are living proof of what tough determination can do! Great to hear back from you! Keep focused. Stay strong!

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Ty for the encouragement! Ty for ur thumbs up on dr. O..en, yes i have seen him on youtube and am somewhat aware of his awesomeness. I look forward to meeting him this coming tuesday at my appt.
Way to go on your accomplishment as well!
Xo

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@gusgundy

First time commenting. I was diagnosed with HOCM while I was in an alcohol treatment center. Sobriety didn’t stick right away, but the heart issues did. I’ve been sober just over 5 years now (I’m 58) and happier than I’ve been in decades. Just like sobriety, I have good heart days and bad heart days, but it is a condition I have to accept, just like my alcoholism.

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Awesome on ur sobriety!! We r about the same age and have plenty of life left to enjoy. Good attitude on the acceptance. Keep up the clean livin

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@gusgundy

@karukgirl , Thanks. I am currently taking metoprolol (not a candidate for Camzyos, yet) and have an ICD / pacemaker after one too many episodes of unexplained synchope.

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I had 1 episode of collapsing and havent had any since. I am a cadidate for a pacemaker type thing as well. Im glad u r all rite and nothing bad resulted from ur unexplained syncope. Fortunately i was in my home and i quickly came to and that was that. The whole episode lasted only 2 seconds if that . I went down from a standi g position and then came to a second later in a lunge position rite b4 hitting the floor...it was really bizarre. Good luck to u xo

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@gusgundy

@karukgirl , Thanks. I am currently taking metoprolol (not a candidate for Camzyos, yet) and have an ICD / pacemaker after one too many episodes of unexplained synchope.

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I am taking metropolol as well 37.5 mg every a.m. how much do u take? I am having an icd placed as well. My consultation and testing at mayo will be dec 20, 21 and 22. I will then make final decision and then hope to i stall jan or feb of '24.
How long were u off work after having icd placed? Do u have any issues or regrets?

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@shampoou

I am taking metropolol as well 37.5 mg every a.m. how much do u take? I am having an icd placed as well. My consultation and testing at mayo will be dec 20, 21 and 22. I will then make final decision and then hope to i stall jan or feb of '24.
How long were u off work after having icd placed? Do u have any issues or regrets?

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I take 100mg in the am and 50mg in the evening. From my last syncope to ICD installation was about a week-- once I decided to do it, I did not delay. No regrets. In fact, because it records everything, the cardiologists have data on which to base decisions.

The time you will miss depends on what you do. I recall having to keep my arm in a sling (which was also bound around my torso) for more than two weeks-- essentially I was told I couldn't move my left arm because it could pull the wires out before they healed in place.

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@gusgundy

I take 100mg in the am and 50mg in the evening. From my last syncope to ICD installation was about a week-- once I decided to do it, I did not delay. No regrets. In fact, because it records everything, the cardiologists have data on which to base decisions.

The time you will miss depends on what you do. I recall having to keep my arm in a sling (which was also bound around my torso) for more than two weeks-- essentially I was told I couldn't move my left arm because it could pull the wires out before they healed in place.

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Ty for your info! I appreciate u telling me part of your journey. I guess when reading u take more metropolol than i do iit makes me realize i have room for more if needed. Also sounds like urngood with ur icd and thatnit doesnt cause anxiety. I am a hairdresser so im planning on being off for 3 weeks .

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