HOCM, Alcoholism & Making Positive Changes

Rest assured, @shampoou, that you are doing the right thing. I was diagnosed with HOCM nearly 25 years ago. Immediately after the diagnosis I was implanted with a defibrillator/pacemaker device as a precaution. On multiple occasions I received a barrage of shocks from the defibrillator which led to PTSD. I loved to drink through my 20's, but it was more of a binge situation where I would have a night of heavy fun followed by many days of abstaining and recovery. In my early thirties I began to have severe anxiety attacks after one particularly hairy event when I received eight shocks in sequence from my ICD. One hundred proof bourbon became my best friend soon after. By 35, cracking open a bottle at five o'clock became a daily ritual. I convinced myself that this was a "magical hour" and that all drinking before this was problematic. My habit was somehow normalised because I had the discipline to wait. Flash forward ten years and my largely asymptomatic HOCM had developed into chronic heart failure and an A/V block that required the implantation of a Bi-V pacemaker which my heart depended on for two years to keep me alive. Alcohol is highly cardio-toxic, especially in people who already have structural and functional abnormalities intrinsic to their heart. This is a fact that everyone seemed eager to share after my heart failure diagnosis. I was honest with my doctors about my drinking for years. Never once did complete abstinence enter the conversation. It was always "cut back a little". That's like telling a serial killer not to stab so much. At the moment, I am nearly two months post-heart transplant and two years sober. My history with alcohol was largely overlooked in the the transplant process because I have the genetic variant that is responsible for HOCM. I am grateful for the second chance that I have been given, but my regret is immense. Living with my new heart is a blessing and a curse, and I often feel that I am undeserving of the blessing and that I have earned the curse. The meds you are on (life-long) have horrible side effects, your immune system is extremely weak, and the tumult of emotions is overwhelming. While I may have eventually needed the transplant without the drinking problem, I am fairly certain that it would have occurred at a later stage of my life. And I am not suggesting that my path will be your path. Every case of HOCM is slightly different. New medicines are on the market and there are procedures available that improve the prognosis of a considerable number of patients-namely, ablations and myectomies. Educate yourself on the particular way that your HOCM has mis-shapened your heart, it's severity and possible treatment plans. It's hard to offer advice on sobriety because I had no other choice. If I had not quit I would have died. You have to find the thing that works for you. I went through a recovery program and a good deal of counseling following that. Having another human being who you can be totally honest with and who you count on to hold you accountable is a huge thing for me. I, also, found that journaling about my low points, regrets, excuses, negative motivations, etc. while they were still fresh helped immensely. I have a concrete record of that time in my life and I return to those writings often to reinforce my commitment. I think that every person has a deep well of strength that they are largely unaware of until they are called upon to draw from it. I wish you luck and good favor as you find your way.

Welcome to Mayo Connect @exhcmposttx, and thank you for sharing so many wonderful thoughts and observations. You never know who may read your post and be helped by your words. I am glad to hear that you were able to conquer your demon in a bottle. I truly cannot imagine how unnerving it must have been never knowing when the defibrillator would fire off. I would have PTSD too! @danab knows a thing or two about your journey.
I am glad you found Connect and felt comfortable sharing your story with others. You have been through quite a lot and have an accepting attitude of gratitude. Now that you have a new heart, and no longer have HCM, have your HCM symptoms disappeared to be replaced by new ones?

If I'm being honest I have to say that my overall symptoms are worse in some ways, but I'm only two months post-transplant. The anti-rejection meds give me tremors in my hands that make it nearly impossible to do some things. When the transplant occurs your sternum is cracked open and then wired back together, so I'm constantly uncomfortable and have difficulty sleeping. There is a very real risk of picking up an infection that could threaten my life or lead to rejection of the new organ, so I have to be obsessive about cleanliness and avoiding risky situations. And I will have to be for the rest of my life. When your old heart is removed, the nerves are severed and your body cannot regulate your new heart rate in the same way. Mine never drops below 100bpm, so I feel my heart racing almost constantly. On top of all that, I have developed type II diabetes from the steroids that are part of the treatment regimen. For anyone who thinks a transplant is some miracle cure, it's not. It's a treatment for heart failure. With the HCM, I had occasional arrhythmias and some physical limitations. Some of these things will get better with time and some I'll have to learn to live with. On the positive side, I can walk more than a hundred yards without feeling like I am going to faint and I no longer need the defibrillator and pacemaker. Obviously, I am extremely thankful for the new heart and, since heart failure is a progressive, incurable condition, the transplant ultimately saved my life. I am grateful for that and have to hold that idea as my primary focus. Then, it all seems like a fair trade. For anyone with HCM, I would urge you to learn as much as you can about your particular form of the condition and be proactive about a treatment plan and lifestyle changes that will improve your prognosis. Many people live long, healthy lives with HCM and, as far as I understand, never reach the point where they need a transplant. My situation arose because of irresponsible living, bad genes, and a failure to ask the right questions to the right people. Also, I would urge anyone with HCM to have genetic testing and test their kids as it is an inheritable heart disease and sometimes goes undiagnosed until later in life. My biggest relief was when all three of my kids tested negative for the two main genetic variants that I possess which are believed to cause the disease.

Hi @exhcmposttx Welcome to a very small club of us who now have a new Heart to us anyway. Im approaching 6 years with mine and most of those complaints will be gone in less than a year. The Tremers probably about 6 months and they will get less and less as they reduce your meds. The delay due to the Vegas nerve I don't even notice anymore, I can easily walk 4-5 miles and play Golf which I love. So it will defiantly get better. As for getting sick yes we need to get used to wearing a mask a lot. I have had covid once and a few regular colds but nothing to severe. I typically wear a mask out in public indoors where I may be closer to people than about 6 feet. Outdoors when its dusty I will as I live in Arizona, so we get these dust storms but usually as I'm walking or hiking, I don't wear it.
One thing I noticed right away was my increase in EF % I went from a 40 to about 70. wow my blood flow almost doubled.
Also as for heart rate I started out at about 120 but now its typically around 70-80. So I hope that may put you at ease a bit. For me the other unconfutable part at first was food tasted lousy but now i have to put myself on a diet as Im back to loving food too much. LOL
So lets keep in touch and Im here to help with questions. The first milestone myself was driving again. they said I had to be off the pain killers before that and I was driving again at 6 weeks.
BTW I also had a drinking issue before this whole part of my life and I thank God i was able to quit about 9 years ago so I too am very farmiluar with being shocked many times prior to the transplant. I too had a for of PTSD and the hapest day of my recent life was signing the release to take that torture device out of my chest. My old heart got so bad I was getting shocked daily about 2 weeks before the transplant. My nerves were so bad that in the hospital waiting for a Heart they shut it off and just delt with external when needed. At least they could knock me out to deliver the shock. But like you said early on it saved my life multiple times. We seem to share a lot of details in common. Mine was damaged mostly from a flu bug that affected my heart. I devolved fluid around my heart and lungs that caused the heart to become enlarged. Thats when I got the pacemaker defiberator put in as a percausion. at first it never did anything but as my heart got worse I started having more arrythmias. For about 10 years all was pretty good. I was working and had a pretty good life. Went thru a couple of Ablations but it really didn't effect my life much. I did enjoy a few beers after work but never a lot at once. it just became a routine to have a few almost every day. Honestly no one really said it was affecting my heart. But when the arrythmias started coming all the time I read somewhere that alcohol can affect rhythm. So I was desperate to try anything and one day just gave it up. It was a conviction I believe God gave me to quit. and I'm glad I did, as you know drinking will get you off the approved list for almost any transplant. I believe now it was divinely inspired. So there's my story and I added this part based on reading your earlier post to the other person. Thanks for sharing.

Thanks for the encouragement @danab. So many similarities in your story. I just started Envarsus which is a time-released form of tacrolimus. I've already noticed that my tremors are better. I'm a musician and I could actually manage to play guitar for a few hours yesterday. I hope it stays that way because that was a big deal for me. I was getting kinda depressed thinking I would have to give that part of my life up. It's funny you mentioned the taste of food. I've had an issue with that since being released from the ICU. I don't know if it's the prednisone or tacro but it makes me feel better to hear that it goes away. Everything has a taste like an artificial sweetener has been added. It's good to hear the straight story from someone who has already been through what I'm facing. There have been a few setbacks but it does feel like things get a little better everyday. No rejection and all of my numbers have been excellent. I had the advantage that I was healthy enough to wait in the hospital for the right heart and I got a good one. I'm very thankful for that.

That's great and I believe it was the predasone for the tremors. I can understand the musician part. Not musicicalty.inclined but tremors would be a problem. Yes you are correct on the food, great analogy as I too don't like artificial sweetener. I found it interesting that meats and salads were the worst. Which of course are my favorite foods.