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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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  • I have issues

    Well Chistmas is past and I can not tolerate much longer with this a-fib. I just put in a call to my Ep and left a message asking when I will be cardioverted. It will be 30 days of this on the 30th, my INR's are within range at 2.4 and on Coumadin 5 mgs daily.

    I am not sleeping well as my chest is racked back and forth as I try to rest and all the flip flops and pacing are just very very distracting .. to say the least, I am SOB regularly , difficulty climbing stairs all the time, poor appetite, very , very intense and recurring chest pain and fluid issues that I have not experienced since prior to myectomy 3 years ago. I swell in the lower extremities all the way up to my thighs and it is hard fluid , pitting edema and after very little activity and time spent up and about. I was reduced to PRN lasix since a year ago and 20-40 mgs occasionally would take care of small fluid issues , now 40 mgs barely works and it takes hours and hours with bed rest to get my legs to go down and to even get my kidneys to put out. I am freezing cold most of the time and generally even though I tell everyone I am OK , I am not feeling OK.

    I can not tolerate the reversal of how good things were to now. I am losing my optimism and fear that a-fib will not stay away once they try to get me out of it.

    I feel that a lot of the problem is a-fib but , it is also taking its toll on me all the way around.

    Besides my EP I have put a call into DR. Maron for his perspective.

    This is very , very discouraging to me.

    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

  • #2
    Re: I have issues

    Sorry you are feeling so poorly Pam. I am thinking good thoughts for you and hope that this will all be behind you soon and that you will have a healthy and happy new year.

    Cynthia
    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
      Re: I have issues

      Pam,

      I'm so sorry you are feeling down from the a-fib. I know from personal experience that a-fib is quite debilitating having been in chronic a-fib with my old heart (and a bout of a-flutter with the new one). It sounds as if you've got all the pre-cardioversion requirements met so it shouldn't be long now. I'll be pulling for you to stay *out* of a-fib once you are cardioverted.

      Hang-in,
      Rob
      --Living life on the edge .. of a continent!
      Charter member: Tinman Club

      Comment


      • #4
        Re: I have issues

        Pam - My prayers and well-wishes are with you - Linda

        Comment


        • #5
          Re: I have issues

          Pam, I hope by now your EP has called back and you have a date for cardioversion. What a bummer to sit around and feel all the grinds and beats from afib. I am praying for you dear friend
          Midge

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

          Comment


          • #6
            Re: I have issues

            Pam

            I had no Idea you were feeling so bad lately, I sure hope you get things worked out, I'm on 360 mg of diuretics and I feel they do very little for me but I know they do because I have been without before and I 'm telling you I blowup like a balloon You are in my prayers

            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


            • #7
              Re: I have issues

              Pam,

              Sorry to here you are not feeling good. I hope you get a call back soon.
              Joe Del

              Diagnosed @ age 45 with HCM June 2004; ICD Implant: September 2004. Fifteen years prior was tested and told had an anxiety attack. Second ICD implanted May 5, 2009 with adding second lead.

              My biggest part is the depression and now on disability.

              Tested positive for HCM gene and all three children are negative.

              Husband and father of three children: Son 18 and two daughters 13 and 7.

              Comment


              • #8
                Re: I have issues

                Pam.

                I am so sorry you have had to go through this. A-fib is such a pain. We will pray for you and hopefull the Dr. will respond ASAP to get you back in a proper rythm.

                Peace,

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

                Comment


                • #9
                  Re: I have issues

                  Pam,
                  I'm so sorry to hear that you are having a hard time. I'm not too surprised that you haven't been telling us how bad you really feel, but I get the impression that you re very independent and don't like to rely on others, because that is part of the nurse in you- looking to help others but not focusing on yourself.

                  I experience a little bit of that myself ( actually a lot of that). When I am visiting a patient, or working a shift, I completely forget to drink enough, the timing of my meds gets thrown off if I work nights, etc, etc. Its just the nature of who we are that we look to others first, but it is time to focus more on yourself.

                  I don't have any personal experience with a-fib ( shouldn't have said that I bet), but I hope your family is helping you with household matters so you can rest more and take care of you.

                  You said that it takes hours and hours to get the fluid off when you take your lasix. I know how that would be discouraging especially during the day when you need to get things done, but have you tried taking it at bedtime? My kidneys work best at that time, and when I take my diruetic that way, I lose much more fluid. Tweaking that concept even more- I find that sleeping on my left side makes it works even better. These are things they just don't mention in the drug literature and are just my experiences, but it might be worth a try.

                  I haven't been posting lately, but I read everything, and I can't imagine how you deal with everything you have on your plate, but know that we are thinking of you, and will include you in our prayers. I hope today brings you more answers. Take care.

                  Judy
                  Dx Dec 2005 - HOCM with gradient of 80at rest, provokable to 150. Alcohol Ablation on Dec 22, 2005.
                  Echos in April 2007 shows 0 gradient at rest, but gradient of 100 on provocation

                  Comment


                  • #10
                    Re: I have issues

                    Pam,
                    I am sorry you are not feeling well - but I do hope this cardioversion does the trick. I was so touched by Robs post on this thread - Rob you have been through so much this year and here you are yet again offering support to others - you are such a kind soul, I truly mean that.

                    Pam hang in there and keep your wonderful attitude focused in the right direction - we are all pulling for you, praying for you and sending you good wishes..and hugs dont forget the hugs!!!

                    Love ya!
                    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


                    • #11
                      Re: I have issues

                      Thanks everyone for your support and care and advise. Any and all tips are helpful.

                      I am doing the couch thing with legs elevated , I just hate feeling the jolting in my chest that seems more pronounced while I try to rest.

                      I have not heard back from my EP office as to a date but did hear from my wonderful Dr. Maron. We both agree I will more then likely need to be on anti-arrythmics probably Sotolol and it is just when to start it. I probably will have the cardioversion and when the a-fib starts again; which appears inevitable, I will go to Boston to start the medicine. Even though my Ep is here in the Providence area, after what I recently went through with the kidney infection at that facility , I will not ( I refuse) go inpatient there. Having an EP familiar with HCM locally is not the same as having a staff and HCM clinic of experienced HCM docs and nurses available to me when dealing with someone with HCM and a-fib.

                      I did get a call from a very caring nurse manager at this particular facility appologizing for the horrendous experience I recently had there while lying on an ER stretcher for 16 hours with a 102 temperature.. He was very kind and understanding and told me he was embarrassed that a patient was so poorly cared for at his facility.

                      Judy I will try to take the diuretics at night consistently , I do feel also that they work better at night for me too. I think I just need to be consistant.

                      Again , Thank you all ..

                      and Rob ..I know you know first hand what is happening here, your insight is very respected and I 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


                      • #12
                        Re: I have issues

                        Pam.

                        Sotolol did the trick for me. Other than several breakthrough episodes Sotolol has helped me maintain sinus rhythm since July 2003. I hope it does the same for you.

                        Peace,

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

                        Comment


                        • #13
                          Re: I have issues

                          Pam

                          When I was hospitalized a suggestion was made for me to lie down at least 1/2 hour after taking lasix. For some reason lasix seems to remove more fluid after that.
                          Prayers for you to soon be feeling well without a-fib.

                          God Bless
                          Esther

                          Comment


                          • #14
                            Re: I have issues

                            Pam, I took Sotalol for 7 years and it did the trick for me. Good luck
                            Midge

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

                            Comment


                            • #15
                              Re: I have issues

                              OH Pam,

                              I was sooo hoping that you would be feeling a bit better. I know how depressing it can be in and out of hospitals, getting rotten treatment with the locals, and just feeling like krap. Have faith in Dr. Maron he has worked miracles with me and I'm sure he will find a way with you. I wish there were words that I could say that would make you feel all better but I cannot. What I can do is pray and maybe that will help, It seems to have for me.

                              Stay well my friend and I will be praying for you!

                              Mary S.

                              Comment

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