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Dolly (Andrew's mom) Find out more about Dolly (Andrew's mom)
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  • It's happening again

    In reference to my earlier post below...........

    The exact same thing is happening again with Andrew as I type this. Normal rate beats for 6-7 beats, then very erratic beats for about 4-5 beats, then normal beats again................ constantly! There is no let up in them. I again listened to them with the stethascope and these seem to be a little more erratic then yesterdays, if that is possible. He again is very uncomfortable with them. I am having a hard time believing this is nothing to be concerned about! But I guess rather then just be told it is "just" PVCs and to go home again, we will just wait these out at home tonight.

    We did do a CareLink transmission today and his ICD did not record anything at all with yesterday's episodes. I was told it is set to start recording at 188 BPM and would not record anything under that. I know his heart rate never got out of the 50's last night while he was on the monitor during all those erratic beats those hours in the ER, so his ICD did not record any of it. He was having very erratic beats for 8+ hours, but not super fast ones.

    As of now his cardiologist has no idea what was going on other then what the ER docs report says when they fax it to him. And after telling a nurse that Andrew has HCM, has had a myectomy and has an ICD, then to have that very same nurse look at me minutes later, very concerned, and say "Are you aware he has a murmur????" does not give me much faith that they new what they were doing there last night!
    Dolly~
    mom to Andrew(HCM) 21 years old
    Diagnosed \'95 age 5
    Myectomy \'96 age 6
    ICD implant \'99 age 9
    First ICD shock (X2) \'04
    ICD replacement surgery \'05 age 15

    *And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)

  • #2
    Dolly - Can you get him on an event monitor or a holter? That would help the doctors see what's going on.
    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


    • #3
      I was just thinking of that when i had weird beats they stuck a holter monitor on me and captured them, good idea

      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


      • #4
        That's a good idea. Maybe I will call his cardiologist again tomorrow and tell him this was happening again, and see if he thinks a holter is something we should do. Do those record everything the heart does while it is being worn, or just fast heart rates?

        These episodes were showing up non-stop on the monitor in the ER last night, couldn't they have thrown a holter on him then and record them for his cardiologist? So he would have had an actual paper copy of them to look at? Or is that not something normally done?

        Those monitors they hook up in the ER, are they capable of recording and giving out some sort of "hard copy" of what it was showing all those hours?
        Dolly~
        mom to Andrew(HCM) 21 years old
        Diagnosed \'95 age 5
        Myectomy \'96 age 6
        ICD implant \'99 age 9
        First ICD shock (X2) \'04
        ICD replacement surgery \'05 age 15

        *And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)

        Comment


        • #5
          A holter monitor will record everything for 24 or 48 hours, however long its set up for.

          I think that they can print hard copies from those monitors in the ER. I remember when I was in the hospital once on a monitor that they would download it for my cardio.
          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


          • #6
            Dolly, how is Andrew today?

            Reenie
            Reenie

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

            Comment


            • #7
              Reenei, Thanks for thinking of Andrew. He was fine this morning so he went off to school. He said he only had a very few of those episodes throughout the day. Tonight he is going off to watch a basketball game, so it will be interesting to see how his evening went when he gets home.

              Last nights erratic beats ended up being different from Sunday nights. They again continued steady for hours, but this time there was a significant "pause" in his heart beat after each run of erratic beats. He also said he couldn't "breath" when those pauses were happening. He was still having them when he fell asleep. Both evenings they started about the same time. Makes me wonder if it was just coincidence or if it is maybe fatigue starting them. He is usually pretty wiped out about that time.

              I talked to his cardiologist late this afternoon. (waited all day for him to return my call) He had not gotten the report from the ER yet which was supposed to be faxed to him this morning. So he really didn't have any idea what had happened with the ER visit Sunday night. After filling him in best that I could he decided to do a holter monitor on Andrew. That is good! I asked him what he thought could be bringing these on and he said a lot of things, including progression of his HCM. So he wants to check this out better with a Holter monitor. Espescially after I told him I don't think our small town ER doc really knew what she was seeing that night. I heard too many comments on the order of "we are trying to figure out what is going on."

              He also asked if Andrew could feel them and I was like "OH YEA!" Can you sometimes not feel PVC's? I can't imagine how anyone could not feel those! They were so obvious on the monitor and even just by watching his chest "quiver" when he had them.

              The whole time we were in the ER I was watching his heart monitor intently, like it was this "must see" movie. The monitor was at the head of his bed, behind his head where he couldn't see it, but I could. These "episodes" came in two levels........ lets call them bad and monster size. Most of them were bad. At first he would say something every time he had an episode. "there's one" or "having another one" and then he realized I could see them for myself on the monitor and there were just too many of that kind to keep reporting it to me every time he had one. So he then only informed me when he was feeling a monster size one. He would say something like "There's a good one for ya!" or "How 'bout that one? That must have put on a good show!"......... knowing full well I was watching them intently on the monitor and he was making it sound like he was providing a good movie for me! At least he keeps his sense of humor when he is scared!

              But anyway, now I just hope he has some of these while wearing the Holter monitor!!
              Dolly~
              mom to Andrew(HCM) 21 years old
              Diagnosed \'95 age 5
              Myectomy \'96 age 6
              ICD implant \'99 age 9
              First ICD shock (X2) \'04
              ICD replacement surgery \'05 age 15

              *And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)

              Comment


              • #8
                Hi Dolly
                I'm sorry to hear that Andrew is having rapid heart beats. I know how scary they can be.

                Yes, you can have fast heart beats and not feel them. When I have my ICD interrogated, it picked up my heart beating 268 beats a minute for 10 minutes. Sometimes when I am awake I feel my heart beat fast, but it is very faint.

                I'm glad to hear Andrew is going to wear a holter monitor. Lets hope he has at least one episode that the monitor will pick up and Andrew's doctor will know the cause and treat it appropriately.

                Keep in touch.
                Esther

                Comment


                • #9
                  Hi Dolly,

                  I am going through a similar thing that Andrew is going through. I am somewhat better now though.

                  It started the night of Jan. 20, that Thursday was a really stressful day, I over-did it and I got dehydrated. That set off these long, long runs of PVCs. Sometimes the PVCs would last 20 minutes. It was driving me crazy.

                  I rested, rehydrated, no luck, the runs of PVCs still happened.

                  Went to the ER on Friday night, they did blood work, monitored me for 4 hours and then they said there was nothing they could do for me and sent me home.

                  While in the ER, my heart rate would go from around 105 to 50, then after the long run of 50 bmp (or so), then my heart rate would go back up to around 98, 105 even 120. Then the long run of PVCs again. When I was in the ER I would set off the v-tach alarms when I would get up to do something like get a drink of water, my heart rate would go over 140.

                  I felt all of the PVCs, still do. Some are stronger than others.


                  Then last Tuesday Jan 25, it switched to these awful crappy erratic beats. I would have a few normal beats and then some PVCs, then some normal beats, then some PVCs, good grief this is maddening. But, I have since come down with a chest cold (Thursday the 27). I don't know if that had anything to do with this.



                  There are names for these beats, they are called:

                  - Bigeminy

                  - Trigeminy

                  - Quadrigeminy


                  Verapamil does not help stop them for me.
                  This whole thing is very uncomfortable. I'm sorry Andrew is going through this. I hope he continues to feel better.

                  My erratic beats have lightened up a bit, but they are still happening.

                  I hope they can catch this on the holter. I called my cardiologist and he wanted me to come in to his office to have a holter monitor put on, but since I do not have insurance, I did not go.

                  I hope everything works out for Andrew, please keep up posted.

                  Hugs,
                  Eileen
                  49 yrs. old
                  Diagnosed at 31.
                  Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                  First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                  Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                  Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                  My brother passed away suddenly at 34 yrs old from HCM.
                  2 teenage children, ages 17 and 15.

                  Comment


                  • #10
                    I'm really glad Andrew is better today. I hope that the holter can catch something so you can get some real answers. Please keep us posted.

                    Reenie
                    Reenie

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

                    Comment


                    • #11
                      Hi,
                      How is Andrew doing today? Hope he is feeling much better. PVC's have been my worst symptom for quite awhile now. Mine however don't come in bunches, instead they are pretty constant. Every 2nd or 3rd beat ALL day long. Some days they aren't too distracting, but somedays I can't do a thing. I am wearing a holter right now, but I don't imagine much will come of it.
                      Keep us updated on Andrew.

                      Pam
                      It's not what you gather, but what you scatter that tells what kind of life you have lived.

                      Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.

                      Comment


                      • #12
                        Thanks everyone for all your responses. It sure is wonderful to be able to come here knowing I can find out what I want to know.

                        Pam and Eileen,

                        Sorry to hear you two are going through the same thing. I have seen how frightened Andrew is when he has them and how uncomfortable they are for him. It is nice to be able to hear from others who experience this themselves because I can only go by what Andrew trys to explain to me, and then i have to try and interpret that info by having to decide things like "Is this something serious or isn't it? Is this something I should take him in for? Is it as bad as he says?" etc.... so thanks for sharing your experiences with me!

                        I hope you two get feeling better also.
                        Dolly~
                        mom to Andrew(HCM) 21 years old
                        Diagnosed \'95 age 5
                        Myectomy \'96 age 6
                        ICD implant \'99 age 9
                        First ICD shock (X2) \'04
                        ICD replacement surgery \'05 age 15

                        *And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)

                        Comment


                        • #13
                          andrews mom.Im sorry to hear about whats happening with your son.I couldnt imagine how difficult that has to be,I have a 9yr.old whom I love so much.I pray andrew feels better and hopefully this is just a temporary situation or something that can be addressed by a medication adjustment,your son is in my prayers take care mike ob
                          One day at a time.

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