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Need Advice Please


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  • Need Advice Please

    I don't post very often but I read this forum every single day. I am 52 yrs old and was diagnosed with HOCM about 4 yrs ago. My local cardio sent me to Cleveland right away and I was seeing Dr. Asher till he moved. My last visit in Dec. I saw Dr. Lever. I really did not get a chance to talk much with Dr. Lever that day because when I had the appt. I had a really bad case of vertigo! He was very concerned and got me an appt. right away with another Dr. there that specializes in this. I spent most of the entire day waiting to see this dr. but I will have to say his treatment worked!!! It was the fastest I have ever recovered from a bout of vertigo. It usually last 4-6 wks and it was gone in 2 days this time. But after my echo I really did not even get to discuss much with Dr. Lever. My septum measures anywhere between 1.9 - 2.2 depending on reads it I guess. My resting gradient is 19 - 25 and with amyl it soars to 120 - 124. At times I am very symptomatic with SOB, tight chest and palpitations. I cannot exercise at all and sometimes have trouble even walking a mile slowly. I was not a real active person before I got this but I did work out 3 x wk for toning at a gym, went on bicycle rides and generally cleaned my house & yard often. The house & yard only get done now on a good day. But my good days still outnumber my bad ones and I have no chf or dangerous arrthymias. Last holter showed lots of premature ventricular contractions and premature atrial contractions but none of the docs seem concerned about this. So, the problem? The only thing that ALL of my doctors want to tell me on my visits is how I should have this myectomy done. I am scared silly of this operation. Partly because I've never had major surgery and the other part is due to seeing my Dad die within 4 days after being on a ventilator. I know he had HCM but it was never diagnosed. He used to faint all the time, had to have a mitral valve repaired and had irregular heart beats like crazy. His father died from a sudden heart attack ( supposedly) when he was in his early 60's and his brother just dropped over dead at work two days before retirement (heart attack is what they said) when he was in his mid 50's. I guess my Dad was lucky because he lived to be 72 even with all his health problems but he couldn't do alot. When I was first diagnosed they evaluated me at low risk for sudden death due to the fact I have never passed out I guess. Here are my questions: (1) Can your risk factors change for sudden death even though your symptoms remain basically the same ( they do last longer days than before) (2) Am I doing damage to my heart by keep on walking slowly till the tightness goes away. If I continue to walk the tightness goes away in about 10-15 minutes and I can go on walking. Is this dangerous to my heart. (3) How can I get my doctors to kind of let up about the surgery for awhile. I don't want it till I absolutely can't walk from one room to another but I get the feeling that they don't even want to see me if I won't have the surgery. It's like okay what do you want from me if you aren't going to do this. I guess I just want them to look out for me to make sure nothing changes as far as my risk for sudden death ( which I would consider an ICD ) and tell me if I'm doing anything to damage my heart further. Maybe I am in denial but if I can have a basically good life doing the activities that I do now why would I want to have surgery just to be able to run a few miles and clean house. I can hire someone to clean my house! Am I being bull headed and the docs will eventually just give up on me? I really don't want that to happen but the thoughts of surgery will get me symptomatic in no time and all I can see is my Dad with that tube down his throat dying. So how do I tell these docs this without getting them mad at me? I really need Dr. Lever and don't want him to think I'm just being obstinate.

  • #2
    Re: Need Advice Please

    Have you talked with Lisa recently. I think that would be # 1 on your list . She can give you very factual info on all of your questions.

    I am 51 and I had a myectomy at age 50 ;just 10 months ago . My gradient was also very high when provoked. I experienced many of your same symptoms and complaints. I sat on the myectomy decision for awhile also . It is a very big decision. I recognize and empathize with the trauma you have experienced with re. to your dad. Remember you are not your dad , you are you and much younger and at a time when you are relatively still strong enough to face such events. Perhaps speaking to a professioal could help you work through the process of at least seriously considering the doctors expertise and guidance in regards to your HCM . Trust of the experts is key to a lot here. When I decided I would go through with the surgery I did a lot of soul searching a lot of thinking and internal role playing of what all my options were and how the choices might play out . It helped me to come to terms . In the end I met with the surgeon and I entrusted my heart and my life to him to help me.

    You must also remember there are many variables with this disease ; what is good for one may be different for another. A myectomy is not a cure but if it is successfull your good days will be even more and you will have more endurance from activitry to activity. I am very pleased with the results I try to always keep my expectations real and grounded.

    There is data out there that documents that things with your heart can get worse if left the way they are. Lisa can tell you more. I know in particular that Dr. M. Maron who was a co- authorn author for an article ,stating the findings that CHF can in fact worsen in an obstructed heart. Many of us did not have any evidence that CHF was occuring until we got into trouble with it or had a crisis.

    So my advise is to consider all very carefully. Please consider the phone call that can help you immensely.

    Best wishes in your journey and keep us informed , we are here to help you.

    Dx @ 47 with HOCM & HF:11/00
    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
    Lead failure,replaced 12/06.
    SF lead recall:07,extracted leads and new device 2012
    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
    Genetic mutation 4/09, mother(d), brother, son, gene+
    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin


    • #3
      Re: Need Advice Please

      hi, we have a similar story. My father had known for yrs that he had a bad heart, but, we didnt know until 1996 that things were going bad. In 97 he got worse and by the end of the yr he had been in the hospital and put on oxygen. My brothers and I didnt know still what was going on. In 1999 he was lifeflighted to a nearby hospital and passed away on June 1st which is also my husbands birhtday. We only knew that he had congestive heart failure and pneumonia. He died right in front of me. less than a month later we moved from there (tx) to florida. In 2002 I was dx with HOCM that was July and in October I had the icd put in. The doctors looked me in the face and said we are really shocked that youre alive. The thickness was at 2.4 and with the ICD and meds they really thought I would be ok for a while but explained that if things got worse I needed to keep in mind that the myectomy or ablation were a possiblity. In June of 03 I spoke with the docs and weighed my options and with the advice of my doctors saying that I was really too young for the ablation (Im 31 now) that the myectomy was my best option. All the while I was actually more stressed and worried about my daughter who is almost & because she is at risk for this disease I really had accepted that I was going to have the surgery. I did alot of research and realized that I would not get any better, it was only going to get harder and harder so I was ok with it. I was on 240mg of verapamil at the time and still didnt feel any improvement. October 21st of 03 I had the myectomy done at UAB of Alabama by Dr. Pacifico, I was home that Friday. Ive learned to read my body pretty good if my heart starts to work a little harder I stop what Im doing and let the poor thing rest. I recently had a checkup and the septal wall is about 1.5 in thickness. I was also taking baby aspirin and was having horrible dizzy spells and my regular cardio doc said that aspirin therapy after a long period of time can cause vertigo so he said well youre not feeling good on the meds and thats what they are supposed to do is help then stop taking them. He said there are other meds for the pvcs but prolonged use can cause other severe problems. That was on the 12th of this month and Im slowly feeling better. We are a military familiy stationed in Florida and there isnt and HOCM specialist here local so we travel to a nearby Air Force base in Biloxi Miss to the docs there. They have been treating me for 2 yrs and I feel safe with them. Its hard for some to ever feel ready for the surgery, I was scared to death all the way up until the put me in the wheel chair to go to CICU to have the balloon cath put in the night prior to surgery ( that was done to give my heart some rest prior to operating) We all had tears runnign down our face and I couldnt let go of my husbands and daughters hand.....I had such wonderful nurses. If you walk and start to feel the pressure stop and rest its not safe to overwork your heart. I call them baby steps, its so very hot here in Fl that I havent been able to keep up the daily walks so I basically had to start all over, few steps each day and just slowly build up 5minutes for a few days then 10 then 15 then 20. About the surgery I kept thinking that if I waited to long to have it done then when I finally decided it may be too late. I dont even want to think about transplant. Its alot to think about, but, I still think to this day that if my dad had taken treatment for all of this he would still be here. He refused meds and would never go in for anything. Its so very much to think about


      • #4
        Re: Need Advice Please

        smccormick, I know you are frightened of the procedure. If your specialist is suggesting the myectomy, though, maybe it's time to consider it. You said that you want to be so incapacitated that you can't walk from one room to the other. My thoughts are that at that point you will also be really weak and won't be able to heal as well because you will be much sicker than if you did it now. Just something to think about.


        Husband has HCM.
        3 kids - ages 23, 21, & 19. All presently clear of HCM.


        • #5
          Re: Need Advice Please

          (1) Can your risk factors change for sudden death even though your symptoms remain basically the same ( they do last longer days than before) - Yes they can and they should be re-evaluated every 3-4 years

          (2) Am I doing damage to my heart by keep on walking slowly till the tightness goes away. If I continue to walk the tightness goes away in about 10-15 minutes and I can go on walking. Is this dangerous to my heart. YOu may be - you may not be -you need to see an HCM specialist and have it looked at sooner than later

          (3) How can I get my doctors to kind of let up about the surgery for awhile
          If it is what is best for you - he should not "let up" - but I think you know that

          It is time to head back to a specialty center and get that myectomy done and get back to living -- YOU ARE NOT YOUR FATHER - - You should do what is best for YOU!

          Take Care,
          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)


          • #6
            Re: Need Advice Please


            I am sorry about your dad. I lost mine on Christmas morning, 1999. He was 58.

            I know it is hard, but you need to separate your father's death and your surgery. Therapy was mentioned above and I would second that motion. Losing a parent is one of the hardest things to go through and if you haven't talked to a professional, I think it would be a good idea.

            It sounds like you need to book another appointment with Dr. Lever and see what he says about a myectomy.

            The thing about surgery like that is you want to do it when you are in all other ways healthy so that you recover well. If you wait till you can't walk around, it will be much harder to get back to even where you are now in your abilities.

            It is your decision, but if one of the best HCM doctors in the country thinks you should get a myectomy, I would start talking to a therapist about how to 1. be ok with needing a myectomy, 2. make the decision, either way, and 3. live with that decision.

            The doctors will not give up on you. They know it is your choice, however, they only want the best for you.

            I wish you all the best.



            • #7
              Re: Need Advice Please

              Well, my friend, you must be VERY frightened if you would rather wait till you can't walk from one room to another!

              Is it truly reasonable to let yourself drop to such a low level before taking action to lift yourself up to a more reasonable level of capability?

              I have spina bifida and a tethered spinal cord as well as HCM, and I have pushed like mad for surgeries that would help me. To date, I've had 54---- For me, multiple operations have been a way of life. Incidentally, this life has been a strong and capable life despite the heavy odds against me.

              Surgeries are very risky, but when they can move you from barely living to feeling strong and capable, they are truly blessings. For all of us, it's a personal decision, but I would rather take the risk that just might move me into a stronger position in life. I want to be just as alive as I can possibly be while I'm here. I know that sooner or later, I'll be dead, since that happens to everyone.

              No one can make these decisions for you. They are yours alone, but do remember that Doctors don't recommend surgery to hurt you. They operate to help you, and they rarely suggest such procedures if they think they will fail.


              • #8
                Re: Need Advice Please


                Last June I attended the HCMA annual meeting. In a room full of HCM experts, the most impressive to me was Dr. Lever.
                I was impressed by his directness. His suggestion of a Myectomy as the next stage of treatment should be considered essential.
                It is unfortunate that your fathers experience has correlated open heart surgery/ventilator with death. However, I am no stranger to parents passing away or with fear of surgery.
                One of my strongest memories was visiting my Mother after she had a triple bypass. But she did live another 7 years after that. My father slowly wasted away during the final two weeks of his life. Your father dying of post-op complications could not be easy, but watching a beloved parent pass away from cancer is just about as bad as it gets.
                I had a myectomy last February. Due to some scheduling conflicts between my cardiologist and the surgeon, I got to think about the surgery for 5 weeks. I would suggest that should you decide to opt for the surgery, you attempt to have it scheduled the next week. The less time to think about it, the less chance to be overwhelmed by trepidation.
                I too had not had major surgery. I too thought about the worse case scenarios. But I have a wonderful wife and two amazing children. Despite my fear, I had to do what was best for them.
                You have 3 choices in how to proceed.
                1- Do nothing. Continue with life and deal with the symptoms as best you can.
                2- Myectomy
                3- Alcohol Ablation

                You may not realize this, but if your concern is about sudden death, doing nothing may be the riskiest choice.
                Myectomy is actually the safest, especially if performed at an HCM Center like Cleveland. The mortality rate is almost non-existent. And once you recover your chances of sudden death drop down to the same as a non-HCM patient.
                I am not a big fan of Ablations. There are two groups of patients that should consider them. The first is patients over 60 who may not handle the stress of open heart well. The other is for younger patients who can not get over their fear of a Myectomy. An Ablation has a higher mortality rate then a Myectomy and it also has a lesser chance of success. But the mortality rate is still low, and the success rate is still pretty good. As long as you go in knowing the risks, it is a viable option. However, Cleveland’s policy is to not perform Ablations on patients under 60. So, you would either have to convince them or go on to a different HCM center.
                To be quite honest, had I been single, with no one depending on me, I probably would have gone with an Ablation. That’s how fearful I was of the surgery.
                I do not recommend you see a therapist as others have mentioned. I do think you are in need of Group Therapy. And these boards are the group. One of the ways I pushed through my fear was through conversations I had with several people on these boards. They were able to answer my questions. Now I give back. I have talked to many people on these boards who are due for surgery. One of them is having surgery this week.
                If you send me a PM, I would be glad to give you my phone number. Just understand that I will be a straight shooter, just like Dr. Lever. I will not sugar coat my experiences. Recovering from this surgery is difficult, but it is doable. 10 weeks after surgery, I survived 3 days of Disney World with two children under 6.
                Today, I feel great. As bad as some of the moments were, I can truly say it was worth it.


                • #9
                  Re: Need Advice Please

                  Thank you for your honest replies. I guess deep down I know that I need this surgery. I think that is one of the reasons after several failed attempts I finally quit smoking. It has been 6 months now and I know I will never smoke again! I think little by little I am getting myself and my body ready. Felix when you were having your myectomy I read every single day about you and even afterwards. I know you had some very bad days and I was pulling for you so I know it won't be easy but then again I also read about Jim's amazing recovery and thought maybe I'll be one of the lucky ones!!! Felix I will take you up on your offer about questions when the time comes!!! I know I'll have plenty and yes I prefer the the non sugar coated version. Thanks again for everyone's replies. I have an appt. with Dr. Lever in Dec. so guess I'll go from there.


                  • #10
                    Re: Need Advice Please

                    Hi There!

                    First of all, allow me to congratulate you on quitting-smoking. It is by far the hardest thing in this life i have ever had to do. To put this in perspective, if someone had given me the choice... i would much rather have had a second myectomy and go back on that ventilator for a couple hours than give up my cigarettes. You have done a fantastic job to be quit for six months, and a tremendous service to your heart.

                    Secondly... Yes, you are being bull headed. Have the surgery.

                    As several others have noted, your history bears a striking resemblance to many of ours, and certainly to mine. I watched my father die in a Pittsburgh hospital twenty years ago. It wasn't the ventilator that killed him, it was his heart. The ventilator was trying to keep him alive. He wasn't diagnosed with HCM at the time either, but we now know that he had it.

                    At the time of my myectomy, my resting gradient was between 144 and 190 mmHg, and nobody even wanted to test it under stress, so who knows how much higher it might have gone. After reading your post, i have to say that the quality of life you are enduring right now is about the same as what mine was at the time. Let me tell you first-hand buddy... you can do much much better. The prospect of open-heart surgery was not an appealing one to me for sure, but i finally just decided to buck up and have the darn thing. It was definitely one of my better decisions.

                    If you search around the board you'll find that i've had my share of troubles both before and after my myectomy, but overall i do think that my recovery was pretty amazing and i am quite thankful for that. There are others here though who have fared even better and have managed to pull ahead of me a bit in their recoveries. I'm trying my best to catch up now! LoL. It's not a race though... everyone recovers at their own speed.

                    It seems like everyone's biggest fear about the myectomy is the breathing tube, especially us guys. Did you know that this was Ridley Scott's motivation for designing the creature in the original Alien movie? He wanted an alien that would frighten his male audience just as much as the females, and played upon our irrational fear of having something stuck down our throats. True story.

                    It is good that you are doing your research, and hearing different people's experience on their surgery. Please remember however, that one man's experience is just that... one man's experience. Felix had a tough time with his myectomy, and we all feel like we went through it right along with him... but if you were to speak to everyone here on the board who has had one, i believe you would find that his situation was not typical.

                    Good luck to you, and take care,

                    "Some days you're the dog... some days you're the hydrant."


                    • #11
                      Re: Need Advice Please


                      It has been 2 years since my myectomy in Cleveland. Please do not take this wrong, but pick up the phone call Dr. Lever and do not wait until December. As others have said they still have good and bad days, but even the bad days are better than the goods days were 2 years ago. Last week we went to the Indiana State Fair and I was up walking around 8 hours in the hot sun and I was exhausted and it took a couple of days to fully recover. But, please look at what I wrote 2 years ago...

                      My symptoms seem to be getting worse, and it is getting increasing harder to work. My quality of life is already been greatly diminished. For example, I do not have the capability to take my kids to the state fair this year. This is not a quality of life a 44 year old should be living, and it certainly is not fair to my 2 sons ages 5 and 7. I thought having the gastric by-pass and losing 175 pounds would increase my quality of life. It’s sad to say that I cannot do 1/5th of the things I was able to do at 367 pounds.

                      The surgery works. My guess is your only regret is why you waited so long.


                      P.S. I would be feeling even better if I hadn't regained 60 lbs.


                      • #12
                        Re: Need Advice Please

                        It looks like everyone that has had this surgery is glad they did it! I have a few other things to get lined up, one being my insurance. I just realized that I don't even know if they will ok or how much they will pay on this. I know that before Cleveland was part of the system but that changed a couple years ago and now they only pay so much on my visits. I don't know how much they will pay since no one in my area would even attempt to do this. That's another thing to put on my "list". Another thing is to find a good cardio here in Charleston WV. The one I have now I don't think I would want to take care of me right after a myectomy. I'm working on changing docs now but here it is like a good ole boy network. Once you start with a cardiologist you are stuck with him for life. No divorces. No one else will even talk to you when they find out you have seen someone else! So I'm working with my PCP on how to get around this.


                        • #13
                          Re: Need Advice Please

                          we have aetna and I remember the insurance thing being pretty easy.
                          Dr Lever's office should even be able to help. I think because you are already seeing him, his office would actually even handle it. prequalification or something like that.

                          Surgery has made a world of difference for felix. before surgery all weekend he would just have to lie down . I can remember that we
                          drove to Florida last Jan and when we stopped I automatically said,
                          ok, I will take the kids to the playground so that you can rest. he said
                          "ill go" and I was in total shock! he was having one of his few good days.

                          now, i would expect him to go, and maybe even give me a rest!
                          The kids are so grateful that their daddy does all sorts of things with them now.



                          • #14
                            Re: Need Advice Please

                            Sue, Please call Lisa and talk with her. We have met a most impressive doctor from Charleston, WV. He has visited our booth a few times. I think he is president of the WV Lisa Fan Club. He used info we sent him to do an HCM presentation for the medical community in his area. You will both be able to benefit from exchange of info. Best wishes, Linda


                            • #15
                              Re: Need Advice Please

                              I have emailed Lisa for the name of this doctor as you had mentioned before how impressed you were with him. I wish you could remember his name. Lisa hasn't responded but I'm hoping she will get a minute to look up his name for me. I would really like to see him and established a relationship with someone in my area.


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