If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you


No announcement yet.

HCM can take its toll


About the Author


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
  • Filter
  • Time
  • Show
Clear All
new posts

  • #61
    Re: HCM can take its toll

    Hospitals are places to avoid if possible. Get well soon, Pam!

    Myectomy on Feb. 5, 2007.


    • #62
      Re: HCM can take its toll

      Sarah, thank you for letting us know how your mom is doing. She is a source of strength and a caring person who helps us more than she may know with HCM challenges we all share. Hope she's back home soon. Give her our well wishes.
      HCM & diastolic/systolic HF (burn-out HCM) DX in 2010
      Brother 34, sister 45, & mother 73 passed away from HCM burn-out/CHF/DCM
      Sister @ 41 got heart transplant on Valentine's day 2002
      Oldest sister, diagnosed with HCM in 2010
      only niece cleared by genetic testing; son not genetically tested yet
      Suspected HCM in maternal grandmother (d. 39), 2nd cousin (d. 33),
      maternal grand aunt (d. 51), & maternal great grandmother (d. 50s); with hrt. conditions/hrt. surgery/kidney d.


      • #63
        Re: HCM can take its toll

        Sarah - I hope things are improving quickly. Please continue to keep us informed.

        My prayers -



        • #64
          Re: HCM can take its toll

          Man that is just sad. Pam sorry you have to go through this. Get better soon.

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


          • #65
            Re: HCM can take its toll

            Pam, I'm sorry you've had this setback. I'm confident you will fight this and will be back home in no time.

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


            • #66
              Re: HCM can take its toll

              Please give her a big hug and tell her prayers are coming her way and the rest of you too.

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


              • #67
                Re: HCM can take its toll

                Hoping and praying for healing and a smoother recovery. Thanks for updating us. Please let her know we're sending hugs.
                Philippians 4:4-9; Wife, & 39 yo Mom to 9 year old son and 6 year old son/daughter twins; Diagnosed with HoCM 1999; Cleveland Clinic Myectomy and ICD, January 2006.


                • #68
                  Re: HCM can take its toll


                  Stay strong and keep fighting for a quick recovery. You are in my thoughts along with many blessings for you.

                  Be well, Janet
                  Believe in the goodness of mankind.


                  • #69
                    Re: HCM can take its toll

                    Ouch! That's gotta be frustrating. Well, I am hoping and praying that this is just a speed bump on the way to a full and wonderful recovery.

                    Thanks for keeping us updated Sarah. Tell your Mom we are all pulling for her.
                    ICD 1/20/10
                    Myectomy 8/25/10
                    @ Johns Hopkins
                    Surgeon Duke Cameron


                    • #70
                      Re: HCM can take its toll

                      Hello everyone it is me Pam... Got home Sunday afternoon.

                      It is battle uphill, running low grade fever, no appetite, exhausted, pain. Having the visiting nurse in for daily wound packing, 5 cm deep cavern; they have to drain and poke a 4x4 into each time.

                      The night I went in; thursday I again had a whisper in my ear say, go get a mirror and look at your belly.. when this happened I actually said out loud I am not sure where a mirror is and at 10:30 @ night I am not sure I want to know anything at this hour. Bizarre I know, call it percocet or whatever, but this is how it always goes with me. So I found the mirror and was horrified at what I saw!
                      Scarlet red incision, spreading all over my belly like an expanding lake, with a hard indenting firmness. I called my daughter Sarah she said take your temp.. it was 102! She said call the oncall surgeon at TUFTS now! I did and he was so kind but firm and asked if I could please come in now and not delay. He met Tim and I in the ER an hour plus later. Immediately they did blood cultures and all the labs he started Vancomycin IV. They held me there till the AM and when they had a room.

                      That afternoon the surgeon who had been away for a week returned looked at it and said we are opening this thing. So with all the surgical residents surrounding they did that; poked me with long q tips that and drained an abscess and packed it with gauze. He told me I should get better now. They found bacteria in my blood so started a second antibiotic called Zosyn( sp). They then got the wound cultures back on Sunday and said the wound and blood was sensitive to Augmentin, so I could go home on pills and have the visiting nurse in to do the dressings.

                      So the concern and worry continues .. I am hoping no more can go wrong, but know how these things can go .. Noreen from Dr.Maron's visited and assured me they were very concerned about all this and worry for me. They are such a sweet HCM team ; Dr Maron, Noreen and Murdena.

                      While in the hospital it was an endless battle educating non HCM staff about HCM and the need for me to take my meds, at least the important ones even though my BP runs low. Every time the monitor showed PVC's too many and AT (atrial tachycardia,) I was sure I was heading into a-fib. Noreen helped them get it straight that I must have my anti arrythmic med sotalol 2x's day. This is always an issue and gets me going. The resident says in med school they breeze right over HCM and very little is understood by them as a consequence.

                      So thank you all for the continued support and well wishes and hugs .. I appreciate you all.

                      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


                      • #71
                        Re: HCM can take its toll

                        Hi Pam,

                        Glad to see you're home again it stinks having to go back to Tufts but there's no better place to be than there with a nasty infection. I wish you a speedy recovery,and we all miss you .

                        John F.
                        had HCM since birth
                        'enlarged heart' identified in 96'
                        HOCM dx in 7/08
                        Myectomy 8/09
                        extended Myectomy 5/10
                        'End stage' HCM dx 8/10
                        CRT-D implanted 9/10
                        evaluated for Transplant 11/10
                        Listed for transplant 6/11


                        • #72
                          Re: HCM can take its toll

                          Welcome home, Pam. Let's hope this is the last of these issues!
                          "Some days you're the dog... some days you're the hydrant."


                          • #73
                            Re: HCM can take its toll

                            I am glad to hear you are home. I hope the remainder of your recovery is uneventful.

                            Good thing you listen to your "little voice".


                            • #74
                              Re: HCM can take its toll

                              Have you ever heard the saying "the still small voice"? Glad you are home and that you listend that that voice. Hopefully you will be back on track soon!! Keep those visiting nurses inline!!
                              Onward and Upward !

                              Diagnosed 4/07 HCM with fixed & dynamic obstruction
                              Myectomy with resected cordonae tendonae 4/08 CCF
                              ICD 10/08


                              • #75
                                Re: HCM can take its toll

                                I'm glad you're home now. I hope this will soon be a really bad memory. Feel better!

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