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Six Weeks Post-Ablation Update

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MartinKennedy Find out more about MartinKennedy
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  • #16
    Re: Six Weeks Post-Ablation Update

    Rhoda Dearheart,

    I too was wondering what was meant by 60% and 80%, but I supposed that the ejection fraction was the answer. Let’s see whose right.

    Well, we’re almost to the end of the semester, so you can get fixed up and I can stop worrying about you. Hope you heal fast enough to return to China with your husband. Tell me, have those wood ears helped any?
    Burt

    Comment


    • #17
      Re: Six Weeks Post-Ablation Update

      Ok

      I missed something what is wrong with Rhoda

      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


      • #18
        Re: Six Weeks Post-Ablation Update

        Shirley,
        I do believe that young lady put off a myectomy to teach another semester in China.

        I'm typing on my grandson's computer with a split keyboard and it's driving me nuts, sooo - -
        Be well, Burt

        Comment


        • #19
          Re: Six Weeks Post-Ablation Update

          Hi, Bert and Shirley,

          No, I did not put off a myectomy. I put off getting a pacemaker and possible defibrillator. The only reason I did this was because I did not officially learn the news that I needed these until 36 hours before my flight. The idea of a myectomy or ablation was mentioned for the first time during that same conversation, but not as a current suggestion, just as something I might need. That was a shock because my septum is only 1.3 cm so the idea of needing a myectomy or ablation had never crossed my mind. Apparently my gradient was sufficient to suggest that possibility. But, that is still in the future by at least six months because Dr. Gilligan wants to do the pacemaker and possibly the defibrillator when I come back and then wait to see how I do before proceeding with the more drastic measures.

          Our university's semester is not over until mid July, but I will start giving my finals in about 1 1/2 weeks and will be out of here July 3. I am scheduled to see Dr. G on the 6th and currently am scheduled for an EP exam on July 13, with a possible ICD implant on July 14. I am trying to find out the reason for the EP exam and also why the pacemaker was not mentioned, but have not heard. So right now everything is a bit foggy, but I plan to have something done at that time anyway.

          Meanwhile, I know I have not told you what has happened with the Chinese medicine. I started the real stuff about 1 1/2 weeks ago. Has this been a cross-cultural experience! Before I got it I was cracking jokes to Ed about "eye of newt and toe of frog" but somehow it got a bit less funny when I discovered that just one of the meds they gave me - one to take when I have chest pain - contained frog, toad, and a whole assortment of other interesting things all in a tiny beebee-like pill. For a few days I was taking two bottles of amber powder - as I understand it that is just what it says, ground up amber - and another bottle of some other unknown powder. I am very glad to say that I am no longer taking those. They were nearly impossible to get down. Now I am just drinking two cups a day of a terriblt bitter liquid made from boiling chunks of mussel shells, tree bark, fungi, and various unidentifiable plants and probably dried animals. I have a special pot that I boil all these in in this order: the mussel shells first while the other stuff soaks for 1/2 hour; then add the rest of the stuff - there is about 1 1/2 pounds dried - cover it with water up to 2 fingers width deep over the stuff and bring to boil and boil for 22 minutes; pour off that liquid and save it; Add water to one finger deep and boil again for 17 min. Drink 200 ml (a bit less than a cup) and save another 200 ml in the fridge and reheat it and drink it 12 hours later.

          So, the important question? Is it helping? DRUM ROLL .....

          I don't know.

          I have had a couple of days out of the last few in which I have felt better than I have in months. Once or twice my feet have not swollen, I have not had chest pain, and I seemed to have more stamina than in a long time. Yesterday was one of those days. We have company here from the US, a former student that I taught in the US but who is from Japan. We took her to the Great Wall yesterday and - no I am not stupid - I did not climb it. But going there involved going in and out of subways and a little climb up to where I could sit while they climbed. I was amazed because I was only short of breath once or twice, my feet swelled but not terribly, and I had no chest pain or noticable arrhyhtmias. I was almost (but not fully) convinced the Chinese meds were working amazingly. Now today was the opposite. We shopped all day, walking at slow speeds and only went in and out of the subway twice. My feet and legs look like stuffed sausages, I nearly passed out a couple of times after climbing stairs, I had chest pain, arrhythmias - the whole works. So, I am much less convinced of the benefits of the Chinese meds. But I will keep them up until I come home as long as 1) I do not see any increase in symptoms over what I had been having before I took them and 2) the Chinese docs do not tell me to stop my American meds. I will do this for the same reason that I took them in the first place - because my students worry about me and they genuinely believe that this is what I should do. I want them to know that I respect their opinion and I respect their culture, so this is a good way of showing it as long as it does not make things worse, and so far it has not. (I should mention that, although the great majority of people here believe pretty strongly in traditional Chinese medicine, a couple of students have privately told me that they think it is only good if you are not too sick, so they think it will not hurt me, but doubt that it will help.)

          So, that's the latest in Rhoda's Chinese saga.

          I hope that all of you who are at the meeting are having a great time! I am grinning just thinking about what all those docs there would think if they knew that a well-educated American patient was taking toad and frog and wood and fungi etc for HCM. Oh, well. I always knew I was a bit crazy!

          Rhoda

          Comment


          • #20
            Re: Six Weeks Post-Ablation Update

            Rhoda,

            You’re quite a girl. I am very, very glad to know you.

            Now if I could only get to see you – hint – hint.

            Burt

            Comment


            • #21
              Re: Six Weeks Post-Ablation Update

              All I know is that the nurses told me taht my heart is now working at 80% capacity and they see taht as a big improvement. I often get the details screwed up and maybe I am just too overwhelmed to focus on it. All I know is that I feel wonderful.
              Alcohol ablation January, 2004. Stent placed, September, 2003. Now...at age 53...working out, building a cabin, sober and clean. A 2nd chance at life. There is hope, there is a future. Have faith.

              Comment


              • #22
                Re: Six Weeks Post-Ablation Update

                Martin...great news. Good to hear your doing so well. Keep up the hard work, brother. It will pay off in the end...


                Tigger1
                " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

                Comment


                • #23
                  Re: Six Weeks Post-Ablation Update

                  Originally posted by Laoshur
                  At the risk of sounding really stupid, can you tell me what you mean by your heart working at 80% when it used to be at 60%? If you are referring to ejection fraction, that is not an improvement, as I understand it, so I assume you are referring to something else.
                  I'm confused. Wouldn't an ejection fraction of 80% be phenomenal? Anything between 55 and 75% is considered normal, right?

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

                  Comment


                  • #24
                    Re: Six Weeks Post-Ablation Update

                    Yes having an EF of 80% is considered hi that is what mine is, he probably meant the heart is working 80% better than before

                    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


                    • #25
                      Re: Six Weeks Post-Ablation Update

                      Actually EF only answers to the % of blood exiting the heart on each beat . It does not answer to the actual amount . If because the heart is impaired in it's filling as HCM hearts are, the actual amount of blood is most likely not the volume you would expect. The HCM heart beats very hard to eject the blood and does this at 80%. Remember that HCM hearts often have higher then normal EF's and this is not an accurate assessment of the HCM heart in comparrison to a normal heart.
                      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

                      Comment


                      • #26
                        Re: Six Weeks Post-Ablation Update

                        Pam: So if i understand you correctly... if my ejection fraction is in the low 50's right now (which it is), then that is actually much worse than a non-HCM heart would be with the same ejection fraction? Sorry... i'm having a 'glass is half empty' kind of day.
                        "Some days you're the dog... some days you're the hydrant."

                        Comment


                        • #27
                          Re: Six Weeks Post-Ablation Update-Ejection Factor!!!

                          I will sit down with my nurse on Tuesday morning to ask exactly what they mean by 80% of capacity...that may help all of us.

                          It does make me realize how much there is to learn about all of this.

                          Keep smiling! :P
                          Alcohol ablation January, 2004. Stent placed, September, 2003. Now...at age 53...working out, building a cabin, sober and clean. A 2nd chance at life. There is hope, there is a future. Have faith.

                          Comment


                          • #28
                            Re: Six Weeks Post-Ablation Update

                            Originally posted by mtlieb
                            Pam: So if i understand you correctly... if my ejection fraction is in the low 50's right now (which it is), then that is actually much worse than a non-HCM heart would be with the same ejection fraction? Sorry... i'm having a 'glass is half empty' kind of day.
                            Jim - I am not sure what Pam meant to say, but from what I understand, your ejection fraction is totally normal. Anything over 50% is considered normal, although many with HCM have one that is high...for example mine is like 75%. That means that my heart is beating harder than it should. Maybe since they took out the extra tissue yours is beating normally.
                            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


                            • #29
                              Re: Six Weeks Post-Ablation Update

                              Jim , is it really 50% or are you just pulling that # out of the sky?

                              Yes unless my nursing experience just went hoopy and after today I could be a liitle off my rocker. Ejection fraction is the % of blood ejected with the contraction of the heart. I would have to review again but 50% is what it is, 5% below the Norm value that you wrote in your previous post. I did not look it up, is the norm 55-75%? Mine also was 75-80% , I do not know what is is now 10 months post myectomy. Also other then to ascertain low EF's as with dilated cardiomyopathy I don't think EF's are of that much concern for HCM hearts. It something that non- HCM docs rely too heavily on when they mis-diagnose us and say, "you have a normal EF, your heart is fine. " Does this make sense? Pam
                              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

                              Comment


                              • #30
                                Re: Six Weeks Post-Ablation Update

                                Hey Gang,
                                Look what I found

                                http://www.chfpatients.com/faq/ef.htm

                                and to all – a good night.
                                Burt

                                Comment

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