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No to EP, yes to pacemaker/defibrillator

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  • No to EP, yes to pacemaker/defibrillator

    Hi, all,
    I guess the title of this says everything I need to say. I saw Dr. Gilligan today and he agreed to not do the EP exam and to present my case for a combination pacemaker-defibrillator to the insurance company. He says I need both atrial and ventricular pacing, so it will be a two lead. I found out that Medtronics monitors in China, but not in Beijing so he is going to check around to see if someone does it in Beijing. If not, I will go to Dalian. (Actually, Dalian is something of a resort city, so a twice a year break there could be nice, if I can plan the timing properly.) I will get the other two interrogations per year here. This is scheduled for next Wednesday.

    Dr. Gilligan also agreed that I am struggling with chf, but did not seem too concerned at this time. He brought up the idea of a myectomy or ablation again so I mentioned my small septal thickness. He checked and agreed that it may well be too thin (1.5) to ablate or cut, so said that the only solution for me may be a valve replacement, since the septum is hitting the valve leaflets and causing a considerable gradient. I think we both agreed that all this becomes a much less desirable option given my small thickness. He is hopeful that the pacing may help a little. He suggested that it could reduce the gradient by possibly 50%. My husband, Ed, and I agreed afterwards that probably I can function on two cylinders quite well, perhaps better than most people function on four.

    I am truly amazed at how good I feel considering that we came home late Saturday after being in transit for about 28 hours, had company yesterday, found out that my father was expected to die last night, did not sleep much all night because for some inexplicable reason (other than that I was seeing Dr. Gilligan today) my body decided to get rid of some of the fluid that I have carried for months, saw Dr. Gilligan today and faced all the decisions that finally had to be made, and then came home and made arrangements to fly to Kentucky tomorrow to try to see my dad before he actually dies. Whew! I guess I'll rest next Wednesday and Thursday.

    Pray for peace for my sister through all of this. She has had all the primary responsibility for my dad, is worried about me, and this morning put her son on a plane to go to China (of all places!) for eight weeks to teach English. She has HCM but refuses to admit that any of her considerable problems could have anything to do with HCM.

    Thanks!
    Rhoda

  • #2
    Re: No to EP, yes to pacemaker/defibrillator

    Geez, Rhoda. I'm sorry all this happens at once. I'll keep your whole family in my thoughts and prayers.

    Reenie
    Reenie

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

    Comment


    • #3
      Re: No to EP, yes to pacemaker/defibrillator

      Rhoda:

      You have really had a lot to deal with since you came home....you have been in my thoughts and prayers. How are you doing?

      I was re-reading your post last night and I realized that when I first read it, I missed seeing that you are getting your device on Wednesday. Wow! That's fast. Coincidentally, Wednesday is also the day that Olivia is scheduled to get her ICD. I am praying for a quick and easy procedure for you both.

      Take care,

      Abby

      Comment


      • #4
        Re: No to EP, yes to pacemaker/defibrillator

        Rhoda, dear friend,
        I know from the kind of person you are that your father will or has found peace. I’m sure he will make his presence known to you from time to time, and will help look out for you in the future.

        About your sister, what can I say? I had a few family members who never had time for illness also. In particular I think of my tanta (aunt) – she was my grandmothers sister and they spent their lives together. At the age of fifty-two my tanta was diagnosed with spinal cancer and was given only a short time to live – but she said no. The cancer went into remission. In her seventies she contracted uncontrollable diarrhea and the doctors gave her 24 to 48 hours to live – but again she said no, and the diarrhea stopped. When she was eighty she fell and broke both her hip and arm. The doctors said she would contract pneumonia and die, and it would be cruel to put her through the pain of setting the bones. Once again she said no. The hip healed. She spent most of the time in a wheelchair, but was still able to walk around a little. Her arm also healed, but the bones did not heal straight, and she favored it a bit. One morning, at the age of eighty-four she called my aunt (the closest one) and asked her to come over as that was the day she was going to die. They spent the day reminiscing with periods of tears and love, and as the sun set, so did this glorious lady.

        I hope your sister does go for help, now that the burden of your dad is lifted, but if she is anything like my tanta she will go on for many years to come.

        And as for you, I wish you a textbook procedure, a miraculous recovery, and phenomenal help from the ICD. Go get yourself fixed up hon.
        Burt

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        • #5
          Re: No to EP, yes to pacemaker/defibrillator

          Rhonda-
          You certianly have a "Very Full Plate". I know you great attitude will help you have a good "implant proceedure" for your ICD! Just think, in a couple of days - you'll be feeling better!
          I'll be thinking of you & your family
          BE WELL
          RONNIE

          Comment


          • #6
            Re: No to EP, yes to pacemaker/defibrillator

            Thanks, all for your thoughts and prayers! We are back in VA as of this evening. My father has not yet died, but is still expected to die soon. There certainly is not anything wrong with the hearts on his side of the family. He is 101, has had many bouts of pneumonia including two in the past three weeks, caught a hospital resistant staph the last time and still has it after a week on IV antibiotics, has unbalanced electrolytes, and yet his heart keeps ticking! We have been so grateful that he has never been like many elderly people, longing to die. Instead he has been grateful for life and thankful whenever he got better. But this time he clearly told us that he wants to die. so we pray that he will not continue to linger, even though it would be difficult for us this week, since tomorrow is the hospitalization pretesting and Wednesday is the big day for me.

            Actually, Abby, the date for my pacemaker/ICD has been in place for months, as the need was established in February.

            Thanks again!
            Rhoda

            Comment


            • #7
              Re: No to EP, yes to pacemaker/defibrillator

              My thoughts are with your family. Your father has lead a long life and is luck to have those who love him close by.

              Good luck on your ICD implant.

              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


              • #8
                Re: No to EP, yes to pacemaker/defibrillator

                Rhoda

                GODBLESS your family

                Shirley
                Diagnosed 2003
                Myectomy 2-23-2004
                Husband: Ken
                Son: John diagnosed 2004
                Daughter: Janet (free of HCM)

                Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                Comment


                • #9
                  Re: No to EP, yes to pacemaker/defibrillator

                  Thanks, all!

                  I am back home after the ICD implant yesterday and doing fine. Dr. Gilligan has me 100% ventricle paced to try to reduce the gradient. Below 60 bpm both the atria and ventricles will be paced. I am sore, of course, but basically doing fine. The first good sign I have is that my feet are not at all swollen for the first time in at least many months if not a few years.

                  Abby, how did Olivia's implant go?

                  Rhoda

                  Comment


                  • #10
                    Re: No to EP, yes to pacemaker/defibrillator

                    Well Rhoda that is great news, it will get better and better for you as the weeks go by. How is your dad doing, i have been thinking of you today, and remember keep that arm down

                    Shirley
                    Diagnosed 2003
                    Myectomy 2-23-2004
                    Husband: Ken
                    Son: John diagnosed 2004
                    Daughter: Janet (free of HCM)

                    Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                    Comment


                    • #11
                      Re: No to EP, yes to pacemaker/defibrillator

                      Hi Rhoda, and everyone else, too:

                      I'm glad to see your implant went well, Rhoda, and surprised to see that you were discharged on Thursday. It's great that you're feeling better already.

                      Olivia's implant went very well, taking about 2 hours in all (not including recovery time). She slept most of Thursday, but by yesterday was feeling much more like herself. She's still feeling a bit stiff and sore, but hasn't had any pain meds since yesterday morning. She was discharged late yesterday afternoon, and we are all so glad to be home again.

                      I asked how many ICD implants they do at Sick Kids, and was told they do about 18 per year, which is fewer than I had expected, although our EP said they are doing more all the time. Remarkably, Olivia's implant was the second ICD of the day. They do a lot more pacemaker implants, but not many ICDs. In spite of this low number, they do a fantastic job. The doctors and staff at the hospital are truly second to none.

                      How is your dad doing, Rhoda?

                      Take care,

                      Abby

                      Comment


                      • #12
                        Re: No to EP, yes to pacemaker/defibrillator

                        Abby,

                        I am so glad that Olivia's implant went well! Tell her she has an ICD twin in Virginia who is going to China in the fall! She can come for a visit sometime.

                        I had two aunts in Toronto Sick Children's hospital in 1911-12 with heart problems. Although theirs was complicated by possibly having had rheumatic fever (my mother always said somewhat puzzled, "We were told they must have had rheumatic fever while they were in the hospital, but we were not told that at the time") , they very likely had HCM as well. They, and my mother who was born without feet, spent a lot of time in and out of that hospital over the years, so I always hear of it with affection.

                        Thanks for asking about my Dad. He is steadily going downhill and cannot live more than a couple of days because he has stopped drinking as well as eating. We think he has lost the ability to swallow, but we also know that he wants to die and we feel that at 101 he has the right not be forced to stay alive by tube feedings or IV's. The sad thing is that his only surviving sister out of 10 children who lived to adulthood is 99 and would turn 100 in September, but she is also dying and right now it looks like a race to see which one will die first. Whenever I taught classes about aging, I always joked that I was rooting for getting my father's genes since most of my Dad's family died in their 90's whereas most of my mother's family died in their 40's or 50's. So, now I have an ICD, maybe I'll be able to give my Dad's genes a chance.

                        Rhoda

                        Comment


                        • #13
                          Re: No to EP, yes to pacemaker/defibrillator

                          Rhoda dear heart,
                          Being nearly 72 and still trying to enjoy life to the fullest, I can now understand a little better when an old person feels that they lived long enough. I guess it still would be hard to lose someone when the average life expectancy is somewhere over two hundred, but at some point people would still draw the line and say this far and no further.

                          My dad, after battling cancer for three years, reached that point when he was only 56, and my mom reached that point, with heart problems, when she was sixty-nine and one month – the exact same age as my sister when she died. They are at peace now, but still ‘visit’ from time to time.

                          I am so glad that you are doing so well with your implant, and it was very heartening to see you mention that you would be returning to China in the fall – hopefully together with your husband. Maybe now you could be more active and see more of the countryside – not to mention getting out of the way of those suicide drivers on the road.
                          Try and talk your sister into getting a check-up, and please take care of yourself too.
                          Best regards, - Burt

                          Comment

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