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ER run with Andrew (Moved post from wrong forum)

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Dolly (Andrew's mom) Find out more about Dolly (Andrew's mom)
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  • ER run with Andrew (Moved post from wrong forum)

    I just realized my orginal post was posted in a forum only moderators could respond to. I was going to add a couple things to it and couldn't. The original post is below, and then I added my additional comments/questions.

    I took Andrew to the local ER tonight because his heart was beating and acting very "wacky". When he first told me about it I took a listen with the stethascope. WOW! There was definetly something wacky going on. I had no problem hearing what he was describing. His heart would beat at a normal rate for about 6 beats, then go into a supper fast rate for about 6 beats, then back to a normal beat for 6-10 beats then back to the super fast rate. Then there would be a run of regular beats of anywhere from 30 seconds to 2-3 minutes. Then back to the super fast beat cycle again. This continued to happen every 30 seconds to a couple of minutes....... for two hours. I then decided to take him to the ER. He was hooked up to the monitor there for three hours and this pattern continued the whole time. It was almost scarey to watch them on the monitor. It happened continuously at the same frequent pattern for the three hours we were there.

    They called an "on call" pediatric cardiologist in MN at his heart clinic. It was decided he was having continuous runs of PVCs. They sent us home and said to come back if he starts experiencing any chest pains or other symptoms. I have read enough here to know normally PVCs are not concerning. But do they normally come back to back continuously like this for hours? It is now 6 hours later and they have not let up at all.
    New comments

    The whole time he was hooked to this monitor his heart rate stayed in the 50's, with an occasional drop into the 40's. Even during these episodes. Wouldn't PVC's cause an increase or change in the heart rate?

    And while the nurse was originally hooking him up to the monitor she said "Wow, I can SEE them!" meaning you could see his heart pounding and those funny quivers, just by looking at his chest!

    One more question...............will his ICD have recorded any of this?
    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, Andrew's ICD may have recorded some of this, depending on how the cardiologist has it programed. Have you talked to his cardiologist or just those docs on call? Get in touch with his doc today and make sure he knows they are persisting. Meantime, you know he has ICD to keep him safe, but if he really feels bad with them or developes worse symptoms, go back to the ER. Sorry he has to go thru this. Try to think if anything unusual may be going on to trigger this - caffiene? exessively tired?, etc

    Keep us posted, Linda

    Comment


    • #3
      Thanks for your response Linda. He was still having them when he went to bed last night (early this morning) and that was over 8 hours of this. They were still pretty constant, several of them per minute. I have not woke him up yet this morning to see how it is now. I do know they were really bothering him last night! They would make him gasp for breath, but he never had any real chest "pain" with them.

      I am going to be calling in to his cardiologist later this morning after the clinic opens. I will see if they want us to do a CareLink transfer. I really hope some of these were recorded on his ICD so they can see what was happening for themselves. The ER did do a quick EKG last night and had no problem getting a print out of several of these, but at the same I heard comments several times like......"I am not really sure what is going on" or "let's see if we can figure out what is happening." and "looks like the pacer caught that one" (HUH???)

      Doesn't make me feel too confident they knew what they were seeing!
      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


      • #4
        Dolly

        I hope you can get some answers today about Andrew's heart problems, i know i have a son with HCM and i worry about him even though he is 28 years old Good Luck and keep in touch

        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


        • #5
          Dolly, I've felt that way before myself. Mine were never sustained that long, but you could watch my shirt move with the arrhythmias. I hope you get some good answers today.

          Reenie
          Reenie

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

          Comment


          • #6
            Dolly ,
            I hope you get some good answers soon for Andrew and for you. What a stressfilled time for you all! Prayers .

            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


            • #7
              Dolly,
              How has Andrew been feeling? I have been watching for an update. Hope all is well. Thinking of you all.

              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


              • #8
                Pam,

                Thanks for thinking of Andrew

                He has not mentioned anymore PVC's, but it is common for him to not mention things after he has been told they are nothing to worry about. He really is a trooper when it comes to not complaining! However, it makes it hard for me to know what is going on with him and how he is feeling!

                I am still worried about him though. He just has not been looking right, even though he has not complained about any symptoms. He has had an ongoing cough for about 4 weeks now and looks fatigued and short of breath ALL the time. And it has gotten very hard for him to get out of bed in the mornings the past few weeks. Not sure if it is all HCM related or not.

                And to add to the worries................his knee reconstruction surgery has been scheduled for April 19th. This surgery will NOT be done at his cardiologist's hospital, (no orthopedic surgeons there) so we have appointments with cardiology and ansethesiology at the hospital doing the surgery to go over everything about his HCM in case there are any heart complications during or after the surgery. I am a bit concerned about him having a surgery that is not minor right now, since he does not appear to be feeling the best lately............
                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


                • #9
                  Dolly,

                  I'm sorry that i missed this thread the first time around but hope that Andrew gets to feeling better very soon. Concerning the PVC's... my own experience has been that they are not related to an increase in heartrate at all. In fact, i have experienced quite a few more PVC's after going on a beta-blocker and lowering my heartrate. While searching the internet for info on this, i found the following statement made by a Cleveland Clinic doctor in response to a patient's question in the Heart Forum:

                  Alot of people have more frequent PVC's when their rate is slower. An event monitor might help your doc define exactly what the rhythm causing your symptoms is.

                  Reply by CCF-M.D.-BKJ on 03/20/2004


                  So apparently this is not at all uncommon.

                  Take care and keep us posted,

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

                  Comment


                  • #10
                    Dolly, Call Andrew's cardiologist back and report his ongoing symptoms. Get this cleared up before surgery. Don't be afraid to trust your instincts. If you think he's having problems, check them out and be sure. Please keep us posted. Best wishes, Linda

                    Comment


                    • #11
                      Dolly
                      I can understand that your son doesn't share with you when he's not feeling well. My son was the same. I don't know why they do that. I think (in our case) Michael didn't want to feel like a whimp.

                      I agree with Linda. Please call Andrew's cardiologist before he has his knee surgery.

                      Take care and please keep in touch.
                      Esther

                      Comment


                      • #12
                        Dolly,

                        Thanks for the update on Andrew I was wondering how everything was going. I hope you get clear answers soon to help you feel better as he embarks on his knee surgery.

                        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


                        • #13
                          I took Andrew to his regular doc today. He started spitting up blood this morning along with the steady cough, shortness of breath and wheezing he has had for weeks. He has actually been spitting blood off and on for a couple months. When the doctor listened to his chest and lungs he said both sides were VERY crackly, wheezy and constricted. Andrew absolutely could not take a deep breath without gagging and coughing. They took chest x-rays to make sure he didn't have pneumonia, and those looked ok. For now he is being treated for bronchitis. He has a perscription for Zithromax and an albuteral inhaler to help loosen up his airways and try to reduce the coughing and shortness of breath. If this is not any better next week we are to go back in.

                          He also wants Andrew to reduce his beta blocker back down to 50 mg per day for now. His dose was doubled back in January due to tachycardia, and it is possible all these asthma like symptoms are related to the beta blocker increase, since the symptoms started shortly after his beta blocker was doubled. In about a week, if his symptoms are better then he is to start taking the double dose again. If the symptoms return after doubling the dose again we know it was the beta blockers causing an asthma type reaction.
                          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


                          • #14
                            Dolly, It can't hurt to call Andrew's cardiologist and keep him in the loop, esp when adjusting heart meds, but maybe your doc already has talked to him. I'm sorry Andrew has to go thru so much. I just hope you are able to resolve it all and stay on schedule to get the knee taken care of. That's prob a big thing in Andrew's mind. Please keep us posted, best wishes. Linda

                            Comment


                            • #15
                              Hi Dolly,
                              I guess that old saw is right. It’s not the years that make us old – it’s the kids.

                              Just wanted to say I hear you and feel for you. Watching the kids grow up is much tougher then it was growing up ourselves, isn’t it? I now have two sixteen year old grandkids, but I can sit back and watch my daughter go through with them what I went through with her. (It’s much easier the second time around let me tell you.)

                              Let me also echo the others and say to please keep your cardiologist in the loop. I usually accomplish keeping all interested parties informed by writing a letter and CC’ing everybody involved – and then fax / broadcast it out. I can do this from my PC, and I found it really pays in the long run.
                              Burt

                              Comment

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