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HCM and Weightloss Surgery, My story

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dannicki Married/no children. HCM Diagnosed 2003; ICD Implanted May 2007; Myectomy needed. Find out more about dannicki
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  • HCM and Weightloss Surgery, My story

    Hello HCM Community,

    I just wanted to share my story with you in the hopes that maybe it can help someone else. I was diagnosed with HCM around 2004 and it was totally devastating for me. I was medically healthy, no diabetes, no high blood pressure, low cholesterol and etc. My only vice was that I was overweight but absent all issues that come with being overweight. Somehow I was able to maintain my activity levels and weight. But when I found out about the HCM, I froze. I was afraid to do anything and the weight piled on even more. One day I looked up and I was 374lbs, swollen legs, couldn't walk one city block without chest pains, couldn't walk up or down stairs cause my knees hurt and very depressed. My doctors were having a hard time assessing me because they couldn't tell if my heart health was failing because of the weight or because of the worsening HCM. While I knew that weight loss wouldn't change the HCM, the added pressure of weight on a already stressed heart wasn't good. Along with the urging of my Doctors (all of them, Cardiology, Gyne, General Medicine) I made the decision to pursue weight loss surgery. Because I needed a period of rapid weight loss for my heart's sake, I chose the Gastric Sleeve procedure. It is more radical than the Lap Band but safer than the Gastric Bypass. To briefly explain the Gastric sleeve, think of your stomach shaped like the letter "D". Now cut the rounded part of the "D" and it will look like a cylinder and that's it! They removed about 70% of my stomach. I know that sounds radical even more so than the Gastric Bypass but that's what they did. It was truly an adjustment. This surgery was done on November 25th and as of today I'm at 253 pounds. I'm feeling pretty good and am trying to get a handle on my condition again. Essentially, I'm a totally new patient and my body is completely different. But overall it is excellent because I was once on 400mg of Metoprolol and 100mg of Imdur. Now I'm on 125mg of Metoprolol and no Imdur. My body doesn't need as much to get the desired results now. I share a brief part of my story to be a help. If anyone wants more details, I like to talk so feel free to let me know. My goal is to attack this condition from every angle, and the health portion for me is tougher than the others. Good Day everyone!

  • #2
    Re: HCM and Weightloss Surgery, My story

    That's quite a story. Losing about 1/3 of your body weight in just over half a year must be an enormous change! In any event, congratulations on your progress!

    You're certainly not alone in this. HCM patients have all the medical issues others have, plus some of their own. There are plenty of HCM patients with weight issues -- and as you know, those issues can be especially serious in HCM patients.

    So thanks for posting your story. I hope you keep us updated on what else you're doing, both for your weight and your heart.

    Gordon
    Myectomy on Feb. 5, 2007.

    Comment


    • #3
      Re: HCM and Weightloss Surgery, My story

      Wow, that's great! Keep up the good work )

      Comment


      • #4
        Re: HCM and Weightloss Surgery, My story

        Dannicki
        Thanks for sharing with all of us, so that others may benefit from your experiences.
        Wishing you the best in your quest for better health,
        Theresa
        Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.

        Comment


        • #5
          Re: HCM and Weightloss Surgery, My story

          Thanks for sharing your story!
          I know there are a few other who have had weight loss surgery and some who have lost a great deal of weight with other method - it is great to have options and great to hear about people fighting to stay health!

          Best wishes,
          Lisa
          Knowledge is power ... Stay informed!
          YOU can make a difference - all you have to do is try!

          Dx age 12 current age 46 and counting!
          lost: 5 family members to HCM (SCD, Stroke, CHF)
          Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
          Therapy - ICD (implanted 97, 01, 04 and 11, medication
          Currently not obstructed
          Complications - unnecessary pacemaker and stroke (unrelated to each other)

          Comment


          • #6
            Re: HCM and Weightloss Surgery, My story

            Congratulations!

            I'm a nurse at a hospital in Wis that is a Certified Bariatric Surgery Center. We do many, many surgeries per year and started doing the gastric sleeve surgery last year. The weight loss is still great, but slower than the bypass surgery. A good alternative for people whose anatomy doesn't work for the bypass or have other serious health issues that the bypass is not recommended for.

            Good for you, keep up the good work until you get to your goal.
            Michelle - mom to Krista and Tyler both HCM
            Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
            Tyler surgery: 1/98 myectomy

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            • #7
              Re: HCM and Weightloss Surgery, My story

              I would LOVE to chat about your weight loss journey. I have HCM (diagnosed 9/12) and am facing a transplant. I am having the gastric sleeve THIS Monday, Aug 5 and hoping for my health to improve so that I can hold off on the transplant as long as possible. I'm only 35, so the goal is to wait as long as possible. My story is very similar to yours, I was diagnosed with NO prior health issues, beside always being overweight. I have gained about 20 lbs since diagnosis due to exercise intolerance, and started this process at 261. I am currently 248 going into surgery, my goal is to lose 100 lbs! Please give me an update since 2009 and let me know how you're doing! Thanks!

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              • #8
                Re: HCM and Weightloss Surgery, My story

                I am preparing for the gastric sleeve procedure, just a few more days and we will be submitting all my prep work to the insurance company to get approval. I have lost 40 pounds on the prep diet( basically 4-5 smaller meals a day/10-15 gm protein at each meal- and add a fruit or a vegetable)and have 80 to 100 to lose yet.

                So many people recently have wondered why I can not just keep on doing what I am doing and not have the surgery. That kind of question is very discouraging. Doing it without the surgery, for me, would be like trying to surf without the aid of the surfboard! I guess I am a sprinter at heart, but not a distance runner.

                I want to be thin so badly. I feel better already, (More energy- fewer mobility issues)but I may have overdone it at the fitness center. I am trying to go 2-3 times a week to build myself up a little before surgery. I have been water walking, jogging etc. But I see others swimming, and thought it would be great to teach myself after all of these years - to swim. I am 60 this year. I used a noodle to support my arms face, and just used flippers on my feet to work on the right way to kick. I only did 5-6 laps that way, but after I left the pool that night- Friday- I set in my car for a while playing games on my cell phone, when I noticed some palpitations. I started checking my pulse and couldn't count past 8 without feeling a PVC. On Saturday I still had palpitions, but not as frequently, maybe one to two per minute.

                I want to go work out in the pool tomorrow, but what if I start up again with the palpitations? I forgot to mention that I hadn't had any noticeable palpitations for 2-3 years before this episode. It makes me really frustrated that now that I am working out- I get more problems.

                I'm thinking I should just get to the pool early tomorrow, and if I get a lot of palpitations, I should just show up at my PCP's office and ask for an EKG.... LOL. What do you think?

                JudyA
                Dx Dec 2005 - HOCM with gradient of 80at rest, provokable to 150. Alcohol Ablation on Dec 22, 2005.
                Echos in April 2007 shows 0 gradient at rest, but gradient of 100 on provocation

                Comment


                • #9
                  Re: HCM and Weightloss Surgery, My story

                  We need to listen to our bodies better. While I applaud your workout ethic, there are times we should listen and skip that day. Hopefully the next day will be better.
                  Marc
                  Diagnosed @ 48
                  Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                  Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                  AICD - Valentines Day '08, Spark Plug replaced 11/14
                  After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                  Quietly going insane . . .

                  Comment


                  • #10
                    Re: HCM and Weightloss Surgery, My story

                    Marc,
                    I actually did go workout on that Monday, but a very gentle pace and had no problems. Still waiting on the Insurance company's decision. I have not tried that strenuous activity of swimming again- maybe later in my fitness journey. You are right, totally. I do need to listen to my body more, but often it does not speak up until AFTER I have done too much. I have peripheral neuropathy in my legs and feet, and while I was doing to water walking and jogging- I had no problem.But the next day my right foot hurt and burned, making walking difficult. It took 3 more days to go way. Still, I need to keep working out, overall I do feel better.

                    Judy
                    Dx Dec 2005 - HOCM with gradient of 80at rest, provokable to 150. Alcohol Ablation on Dec 22, 2005.
                    Echos in April 2007 shows 0 gradient at rest, but gradient of 100 on provocation

                    Comment


                    • #11
                      Re: HCM and Weightloss Surgery, My story

                      Judy - Curious about the peripheral neuropathy, did anyone ever mention CMT?
                      Marc
                      Diagnosed @ 48
                      Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                      Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                      AICD - Valentines Day '08, Spark Plug replaced 11/14
                      After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                      Quietly going insane . . .

                      Comment


                      • #12
                        Re: HCM and Weightloss Surgery, My story

                        I must be having brain fog, but i don't recall/know what CMT is. I'm assuming the T stands for Therapy. What is it?

                        Judy
                        Dx Dec 2005 - HOCM with gradient of 80at rest, provokable to 150. Alcohol Ablation on Dec 22, 2005.
                        Echos in April 2007 shows 0 gradient at rest, but gradient of 100 on provocation

                        Comment


                        • #13
                          Re: HCM and Weightloss Surgery, My story

                          I am 5'2" and 210 lbs. This is the most I have ever weighed in my entire life. At the time I was diagnosed 10 years ago I was at a much better weight, but so limited on what I could do. With all of the complications I've had and experiencing Afib for the past year, I've become very concerned about my weight. Me and my husband have been starting to talk about weight loss surgery and what my options might be. I am wondering how many HCM patients have successfully had weight loss surgery and just how safe it is for a HCM patient to commit to a major surgery like this. I know I need to have these discussions with my doctors, but would appreciate any advice. Thank you

                          Comment


                          • #14
                            Re: HCM and Weightloss Surgery, My story

                            Hi Keason...
                            I'm sorry that you have not gotten any responses to your question, I can tell that you are very concerned about your health and wondering what to do next. I was hoping that there were some people on the forum that have experienced similar circumstances. If you look back through the posts on this thread there are a few responses from people experienced with HCM and weight loss surgery.
                            The "advice" you are asking for, really needs to be provided by your cardiologist. Major surgery always has risks with or without HCM. People with HCM go through major surgery for various reasons and do well with the proper monitoring, fluid balance, and medications etc. However, what you are talking about is elective surgery....and you need to gather information on all your options for weight loss and then discuss them with your cardiologist concerning the greatest benefit with the least amount of risk. I'm sorry, that is probably not a very satisfying answer.....But I'm sure after you do all the homework and discuss it with your MD you will come to a decision that feels right for you. I myself have a BMI of 34, not quite as high as yours...but I am chipping away at the pounds VERY slowly(4 lbs in 4 months) with healthy eating....the hard part is not being able to exercise regularly with my HCM symptoms. So I sympathize with your situation. Having just had a myectomy a year ago....just even the thought of another surgery is something I personally do not want to entertain.
                            I wish you the best of luck in your research and decision making. Keep us posted.
                            Last edited by JillC; 04-28-2014, 11:36 PM.
                            After years of symptoms:
                            Officially Diagnosed HOCM 2006
                            Myectomy 3/11/13 at non-COE
                            Extended Myectomy 7/23/14
                            At Mayo with Dr. Joseph Dearani

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