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Laoshur Find out more about Laoshur
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  • Any suggestions?

    I am a woman aged 55, who was recently diagnosed with hypertrophic cardiomyopathy. My parents were quite old when they married, so my family history is limited, but all of my mother's family died at relatively young ages of heart failure. Two of my aunts on my mother's side had heart problems from childhood and the other three siblings in my mother's family died of sudden heart failure at relatively young ages. I realize that I have had symptoms for a number of years, but, although I have had a few stress echo's, no one paid much attention until about a year and a half ago, when I fainted while resting on a crunch bench while working out. I could hear my heart beating abnormally and stop before I fainted. Not long before that I had reported chest pain. The doc ordered an ekg and said it was abnormal, but claimed that further tests showed nothing of significance. After the fainting spell I had about 5 weeks of arrhythmia, but then it went away, so I ended up going to China to teach for this past year. After a few months there, I began to have fairly severe arrhythmia and fainted one more time while playing Solitare on my laptop, so I was glad when the university where I was teaching in Beijing was closed for SARS as that freed me to come to the US for tests. The cardiologist I saw here told me I have HCM and placed me on , which ended up causing me to have diverticulitis. So, I am now on 240 mg of Cardiazem and 25 mg of Toprol. I also have hypertension and am on HCTH to try to bring that back down.

    I asked the cardiologist whether I could climb the Great Wall (2500 steps straight up). He said that I could do anything I want, as long as I stop if I have symptoms. I asked what to do if I was half-way up and he suggested I just stop, wait for the symptoms to go away, and then continue. My classes are usually on the 4th or 5th floor with no elevators, so I get practice climbing nearly every day. I carry a laptop, projector, speakers, small boombox, text, sidewalk chalk, and any papers needed with me to virtually every class.

    I realize this is long, but I am planning to return to China Sept 1, so I would like all the info I can get, if possible. Any have any suggestions of ways to help make this possible would be deeply appreciated. I would love to talk with one of your specialists in HCM, but do not see that as feasible. I will say that I like my cardiologist and his "can do" attitude. He told me that I can call him any time from Beijing with problems or even questions and he will return my call.

    Thanks!

  • #2
    Re: Any suggestions?

    Hi,

    I'm not sure why you think it is impossible to see a specialist, but I would have to say I think it is imperative. Please call the office asap to talk to Lisa about your options.

    Your family history is NOT in your favor. I suspect that much more could be done for you and giving you permission to climb the Great Wall of China is not exactly in line with what a specialist is probably going to tell you.

    Take care and keep us posted,

    S

    Comment


    • #3
      Re: Any suggestions?

      If I were you, I would make it my business to see a specialist ASAP before I returned to China.

      I myself am a 38 year old woman with a family history that is less significant that yours, and with less pronounced symptoms, yet I have an implantable defibrillator, and I can promise you that I would be advised to stop such strenuous exercise, even with my ICD. At least, though, I am protected from sudden death, which in your case, sounds like a concern.

      Please, see a specialist before you take such big chances with your life. You only have one of them.
      Daughter of Father with HCM
      Diagnosed with HCM 1999.
      Full term pregnancy - Son born 11/01
      ICD implanted 2/03; generator replaced 2/2005 and 2/2012
      Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

      Comment


      • #4
        Re: Any suggestions?

        I agree 100% with the others. I would find a specialist and have more testing. When I went to Boston, I was given an echo and the doctors said that I was most likely not at risk for sudden death, but they wanted to cover ALL of the bases. I had an MRI and it showed the same as the echo, but understand that an MRI is clearer and they can see the dimensions more clearly. It's one thing to take a nice long walk or do low impact exercises in small increments, but to climb the Great Wall of China- I would have serious reservations....go see a specialist!!
        take care
        \"It is not length of life, but depth of life.\"

        Ralph Waldo Emerson

        Comment


        • #5
          Re: Any suggestions?

          Hi. I am posting the phone # for Lisa. Please do give her a call. 973-983-7429

          Reenie
          Reenie

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

          Comment


          • #6
            Re: Any suggestions?

            I will post more later...but try to call the office so we can chat.
            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


            • #7
              Re: Any suggestions?

              I want to add my opinion that you should consult an HCM specialist before going back to China!!! The fact that your current cardiologist ordered a diuretic (HCTZ) to control your hypertension tells me it is likely he does not have the fullest understanding of HCM. Diuretics are seldom used to control blood pressure in HCM as it makes the heart work harder when we are dehydrated--and diuretics remove fluids from the body.

              The beta-blockers and/or calcium channel blockers are the drugs most commonly used in HCM. They reduce the heart's workload and decrease the blood pressure without removing fluids from the body.

              Have you talked with Lisa??? She'll help a lot!

              Pat

              Comment


              • #8
                Re: Any suggestions?

                We had a nice chat today,,, and I think we are on the right path now
                If you need anything further...just call.
                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


                • #9
                  Re: Any suggestions?

                  I am glad to hear that you spoke to Lisa and that you will exercise caution in climbing the Great Wall of China. I am relieved you are now on the right track!

                  Another travel/climbing note..... a year or two before I was diagnosed with HCM (which was only about 4 years ago now), I climbed Masada in Israel which is also comprised of many steps. I had to rest every so often, but made it fine. (They have a tram that is for those who don't climb...I would probably take that now!)

                  Then, on my honeymoon (which was post diagnosis) we went to Ayer's Rock in Australia. There are warning signs everywhere saying things like, if you have a heart condition, don't climb. In fact, the day before we got there a German tourist suffered a fatal heart attack while climbing the Rock. There were some other reasons given not to climb (fear of heights being another one) and I don't remember the third. Anyway, my husband and I joked that I had all of the reasons not to climb. We took a picture of me at the base taking two steps as if I climbed Ayer's Rock, but you all know the truth. Also, by the way, my excuse is that the aboriginals say it is disrespectful to climb the Rock, so I didn't want to show any disrespect (not to mention I didn't want to end up as a crumbled heap at the base of the mountain!)
                  Daughter of Father with HCM
                  Diagnosed with HCM 1999.
                  Full term pregnancy - Son born 11/01
                  ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                  Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

                  Comment


                  • #10
                    Re: Any suggestions?

                    I must reply to this. I have HCM and as of May 26th so does my daughter who is 12. We do not have a history of sudden death, but my mother has the disease also. The first thing the cardiologist told her was no competitive sports, and the second thing was if she was in gym class and got and symptoms to stop what she was doing and UNDER NO CIRCUMSTANCES SHOULD SHE BEGIN THE ACTIVITY AGAIN. So as the others have said, please get a second opinion.
                    Life is too short to worry about the trival things in life, So live life to the fullest.

                    Comment


                    • #11
                      Re: Any suggestions?

                      I do think that the days of climbing the "Great Wall" are in the past...
                      Karen thanks for the input.
                      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


                      • #12
                        Re: Any suggestions?

                        Thanks to all of you, especially Lisa! I am trying to work out a schedule to see Dr. Gilligan. He is on vacation for a month, so they are trying to find a spot early in August. I really appreciate all of you taking such concern for me. I feel like I have been exhausted for more years than I can remember, but have kept going at breakneck speed because I did not want to be a hypochondriac. It is nice to have such a warm and caring group of people give me such good excuses to slow down a bit.

                        Comment


                        • #13
                          Re: Any suggestions?

                          Laoshur,

                          I just have to share this story with you!

                          The summer before my myectomy surgery, I was on business in Japan and decided to take some additional vacation days and go to Beijing. Of course I had to see the Great Wall! My guide drove me to one of the areas which had a cable car. Unfortunatly, to get to the car one had to walk uphill (steep). There were also more steps at the top of the wall. I had to do like you suggest. Walk until SOB, stop and recover, repeat. I made it up, but did not climb any parts of the wall that were steep once on top.

                          Another killer (no pun intended) was the Drum Tower in Beijing. This tower has about 100 stone steps straight up to the top. I made the first 20 before symptoms and then about 10 at a time after that. It took a long time but I made that too.

                          One good thing about this experience is that when I returned to the US, I had made up my mind to do something about these symptoms. This led to my trip to Cleveland and the rest is history.

                          I would like to someday return to Beijing and climb the Drum Tower again. This time without stopping (as long as I keep my heart rate within prescribed limits.)

                          Good luck to you.

                          Bob
                          Cleveland Myectomy Crew
                          Member since November 2002

                          \"Chance favors the prepared mind!\"

                          Comment


                          • #14
                            Re: Any suggestions?

                            Hi, everyone,

                            I had an EP exam on Monday and the doctor Lisa recommended found an atrial flutter which he treated with a row of four catheter ablations. I don't know if there is a direct connection or not, but my blood pressure has started dropping for the first time since I came home from China (it had been very high) and I slept through the night last night instead of getting up every two hours to urinate. I cannot see how what he did could cause this, but all I know is that it is what happened. So, I am feeling optimistic. Also, for those who have read my previous posts about the possibility of getting an ICD, the doc decided that I did not need one at this time, which is great! In addition he indicated that he now fully accepts the HCM diagnosis. Best of all, I am now headed for China on Sept. 1 without having to worry about adjusting to an ICD/pacemaker!

                            Thanks for all of your concerns.
                            Rhoda

                            Comment


                            • #15
                              Re: Any suggestions?

                              Rhoda, I'm so glad that you're feeling better. Good luck on your trip, and make sure you check in with us occasionally.

                              Reenie
                              Reenie

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

                              Comment

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