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Pam Alexson single mother of 3 wonderful young adults;a special ed teacher, an RN and a senior accountant. Find out more about Pam Alexson
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  • #16
    Re: I have issues

    Thanks everyone. Midge and Leon it gives me hope to hear that Sotolol has worked for you both.

    I was not well yesterday ; guess I had that 24 hour intestinal thing, vomiting and fever but before I was down for the count, I did find out that my EP is off until 1-4-07. I was more then a little miffed that I have yet to recieve a call back telling me this and it took my investigation to find this out. I mean a simple phone call back from the tech is all I am asking here and when she calls I will tell her so. I checked , she is not off and has been working. Why have a voice mail system if they do not intend to use it?

    Oh well my gripe today!

    Just affirms that she may do the cardioversion on me and maybe I'll skidaddle to Boston. Just do not want to be anywhere while people are taking lots of time off for the holidays if I can avoid it.

    For now I will continue to lay low and WAIT.

    Thanks for hearing my rant and all the kind words of wisdom and support.

    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


    • #17
      Re: I have issues

      Pam, I would be miffed too. Go ahead and rant to us.
      Midge

      Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
      ICD&Pacemaker 1996
      Heart transplant March 19, 2004 @ Mayo Rochester
      Mom of Kaye.

      Comment


      • #18
        Re: I have issues

        Pam

        Feel free to vent. That's what we're here for...support and to lean on.

        God Bless
        Esther

        Comment


        • #19
          Re: I have issues

          Pam

          You have had your share of problems with you and your family rant all you want, I sure give my share on here

          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


          • #20
            Re: I have issues

            Pam,
            I am sorry to hear about the a-fib. I know how annoying it is, I have been more in it, then out of it since October, add alot of V-tach beats and PVC's.

            At night is the worst, it just wakes me up. I cough as hard as I can, to help go back in sinus rhythm. Have you tried that?

            I hope the cardioversion works for you. My doctor does not feel at this point it is worth it. He suggested radio frequency abalation. I said I will go with the A-fib. I am a chicken..........

            It took four years and a trip to Boston for me to let them put a defibrillator/pacemaker in...........

            Good luck and I hope you feel better soon.

            Virginia

            Comment


            • #21
              Re: I have issues

              Thank you Virginia,

              Actually I have had a few coughing jags and they have done nothing to change the situation. I am very fixed in this a-fib and it does not want to budge. It malingers as strong as a normal sinus rhythm.

              I did here from my Ep office this AM and they are back and will be calling me to cardiovert soon. Lets hope she is successful and it stays when she does it. I am also however a realist and see very well the big picture, I think I will soon be heading to Boston to begin IV antiarrythmic treatment. My wish here is to be wrong and that I will stay out of a-fib on my own. Clinically speaking though, the writing is on the wall.

              Wish me luck.

              Pam

              As an added I have a 44 year old cousin who got this nasty stomach flu that everyone is getting... He went septic after aspirating on Christmas night and has been in the ICU since , intubated and in a coma having dialysis regularly. They have given him up a few times but he is still hanging in there. His sister says she will whisper in his ear today that I know he can beat this.. he and I have always been close and he gives me fresh eggs from his chickens. His name is Billy.. please pray for him everyone.
              Thank you, 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


              • #22
                Re: I have issues

                Pam,

                Good luck to you on your cardioversion. Dr. said I was too young (54) for anti-arrythmic meds. So I just deal with this annoying heart dance. I, like you wish that it would decide which dance it wants to do. ie: ballet(sinus rhythm)
                hip-hop (v-tach) or rock (a-fib) Laughter is the cure all they say.

                I will keep your cousin and you in my prayers.

                Virginia

                Comment


                • #23
                  Re: I have issues

                  Pam, your cousin and your family are in my prayers.

                  Virginia, ask again about the meds if you need them. I'm not sure you're too young, but your specialist would know best.

                  Reenie
                  Reenie

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

                  Comment


                  • #24
                    Re: I have issues

                    I heard this am after having another INR done that she will do my cardioversion Monday @ 8:30 AM. It will hve been 36 days with a-fib.

                    My cousin continues in a coma they have increased the diaysis, put him in a complete paralysed state; he was thrashing and twitching a lot, they state that his CT scans are still showing good brain activity but the pneumonia has advanced to his left lung.

                    While @ the hospital having my blood work done they were delivering my mom's brother via ambulance...Age 74, he has parkinsons and has been deteriorating for more then a week and on Oxygen for that long as well.

                    While in the waiting room for the lab I recognized some familiar family traits on another individual, I asked and he said yes, I am your mom's cousin . Seems he has had HCM by one of the other names of the disease for years and has been in A-fib for several years now ( in and out).. he takes amiodorone, was there for his INR and takes coumadin, he is about 72, he has been seen @ Mass General for years takes beta blocker and Digoxin, diuretics, has an aortic aneurism: stage 5 is "not a surgical candidate" has elevated lung pressures, takes prednisone for years which messes with his coumadin stability, recently had both lungs drained; gets pneumonia easily,says he also has CVD,adds that because the genetic heart problem was missed for so long , he went into CHF. He says his sister also has HCM; she is late 60's and is now in A-fib also, on "meds" and always "freaking out about it". His brother age 74 and nephew early 40's have a version of it and also CVD. The nephew had a SCD 2 years ago and was successfully defibrillated ( says it was a "heart attack"). The father, his brother has had 2 " heart attacks."

                    So this was a very full day!

                    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


                    • #25
                      Re: I have issues

                      Geez Pam, when it rains it pours. I am sorry about your family issues. I am very happy that you are going to cardioverted. Let us get you back in sinus and you will feel much better. Keep us posted. Know that you are in my prayers.
                      Midge

                      Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                      ICD&Pacemaker 1996
                      Heart transplant March 19, 2004 @ Mayo Rochester
                      Mom of Kaye.

                      Comment


                      • #26
                        Re: I have issues

                        Pam honey,
                        I am 74 and it sounds like I must be one of your relatives. I’ve also got other issues, but I just keep chugging on anyway.

                        Of course I now get ridiculous directions from the doctors which can’t help but make me laugh. For example – I am on 100mg of Atenolol. At 50 my BP skyrockets during dialysis. Today the home health nurse reported to my doctor that my pulse rate at 48 so I was told to cut back to 50 again – then I was told to “Drink plenty of fluids - - in moderation!” At dialysis they just ordered taking another ten pounds of fluid off me (They’ve already taken off 30 lbs) so one day I’m dry and the other I’m drenched. Talk about middle ground. They’ve added Prednisone for me also, but I do not know how long that will last.

                        Tonight I will send you as much healing energy as I can spare, and I want you to use it to the fullest. I just got word tonight that one of my friends died – and I DO NOT want to lose any others – thank you very much. Get under control and get better.
                        Burt

                        Comment


                        • #27
                          Re: I have issues

                          Well once again... "I've got rhythm, sweet, sweet rhythm...who could ask for anything more?"

                          Another chorus...I've got the beat , I"ve got the beat, yeahhhhh....

                          Had my cardioversion this am, am hoping , praying it will last .

                          Now after 38 days maybe I can get back to some " Normalcy!"

                          Yahooooo!

                          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


                          • #28
                            Re: I have issues

                            Pam - I am glad to hear that you are feeling better. I hope it sticks.
                            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: I have issues

                              You go girl! I am very happy for you.

                              Leon
                              God Squad co-moderator
                              Nothing is as gentle as strength and nothing is as strong as gentleness

                              Comment


                              • #30
                                Re: I have issues

                                I was wondering about you this morning, Glad to hear you are back in grove!

                                HEY!!!

                                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

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