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

Announcement

Collapse
No announcement yet.

HCM can take its toll

Collapse

About the Author

Collapse

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
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • #31
    Re: HCM can take its toll

    Thank you Sarah for the update.

    I understand the low calcium. I had thyroid cancer years ago (they removed my parathyroid glands). When I have surgery, and I cannot take my supplement calcium, I get low too. Hopefully they will give her some IV calcium and bring her levels back up real soon.


    Wishing the best for Pam. Prayers and positive thoughts for her.

    Lots of hugs to you both.
    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


    • #32
      Re: HCM can take its toll

      I have been gone from the sight, I have had some issues, but didn't know Pam was even having surgery,please tell her she is in my prayers and thoughts of course

      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


      • #33
        Re: HCM can take its toll

        Grateful for the update, Sarah. Glad the surgery is behind her and praying for a smooth and quick recovery. Please let her know we're pulling for her!
        Hugs and Prayers,
        Theresa
        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.

        Comment


        • #34
          Re: HCM can take its toll

          Prayers for a speedy recovery.

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

          Comment


          • #35
            Re: HCM can take its toll

            Thank you Sarah for the update. Your Mom has tons of support here.
            ICD 1/20/10
            Myectomy 8/25/10
            @ Johns Hopkins
            Surgeon Duke Cameron

            Comment


            • #36
              Re: HCM can take its toll

              Please send a big ole hug to Pam from me!
              we are thinking of you!
              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


              • #37
                Re: HCM can take its toll

                Pam, you are in my thoughts and prayers. A big TEXAS HUG to you...........


                Bob
                Diagnosed HCM 03-2009
                6-2009 Evaluated at Tuft's ICD/Pacer implanted/diagnosed with DD and severe scarring/no obstruction
                8-2009 Evaluated at the Cleveland Clinic/Myectomy recommended/gradient w/Armyl Nitrate
                10-2009 Myectomy CCF
                11-2010 Approved for Transplant Listing

                "I no longer live but exist" Bob in Texas.......

                Comment


                • #38
                  Re: HCM can take its toll

                  Thanks Sarah.
                  Midge

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

                  Comment


                  • #39
                    Re: HCM can take its toll

                    Hope you're doing well Pam, we're all sending our love and missing you!
                    »-(¯`·.·´¯)-> HCMA LOVES YOUR HEART <-(¯`·.·´¯)-«
                    Murmur detected in childhood (3rd gen, 3 clear siblings)
                    Chronic dyspnea, dizziness & palpitations (21+)
                    Echocardiogram showing 3X thicknesses 2000
                    Cardiac CT 2009 no significant obstruction or plaque (Yay!)
                    Cardiac MRI 2010 showing septal scarring (Boo!)
                    Verapamil 280mg a day (metoprolol starved extremities)
                    ICD MAR 2010 - Canadian Trials St. Jude FORTIFY

                    Comment


                    • #40
                      Re: HCM can take its toll

                      Thank you everyone, lovely friends( I am on drugs now)LOL .. I am back home d/c'd late yesterday afternoon. Lots of rest and recovery now .. lots of staples to come out.. all in good time. I guess I was quite lucky given all that was going on inside my quietly, albeit consistently protesting gut. Once again it was rather amusing to hear ? You are so different in person as to what can be visualized with such a concerning and serious history.. I continue to be blessed that that is a positive thing when they meet me. I just chuckle and they ask what I have that gets me through all this... makes me look different then how it so easily could be presumed to look and be. I wish I had an explanation, it came in a bottle,or I wish I could give some to those who could benefit , I wish there were a recipe. I am simply blessed and surrounded by so much love, care concern and inspiration by everyone I have met, continue to meet and who care for me... I guess that's what it is. The spirit is a strong force and I have been given a good one.

                      My kids said I was quite comical verging on a belligerent Archie Bunker while coming out of sedation. They said it was amusing and they had to keep telling my ICU nurse that that was not my personality. Wish I had a recording of that one!

                      Once again thanks for all your prayers, thoughts and positive inspirations.

                      Dr Maron came by and said he felt this was more then I had gone through with my open heart..maybe it was... but I am a head of it all now

                      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


                      • #41
                        Re: HCM can take its toll

                        Good to hear from YOU, Pam and I'm so glad that you are home and now on the road to recovery. Get some rest !!
                        Onward and Upward !

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

                        Comment


                        • #42
                          Re: HCM can take its toll

                          Glad to see you home Pam, and that they left your sence of humor intact, would of loved to hear your Archi Bunker imitation. Get well soon.

                          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

                          Comment


                          • #43
                            Re: HCM can take its toll

                            Welcome home, Pam! So good to hear from you.
                            "Some days you're the dog... some days you're the hydrant."

                            Comment


                            • #44
                              Re: HCM can take its toll

                              Delighted to see that you've been sprung!

                              Gordon
                              Myectomy on Feb. 5, 2007.

                              Comment


                              • #45
                                Re: HCM can take its toll

                                I'm sure the velvet chaise missed you. Glad you're once upon it again & on the road to a healthy & speedy recovery!
                                Marc
                                Diagnosed @ 48
                                Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                                Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                                AICD - Valentines Day '08, Spark Plug replaced 11/14
                                After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                                Quietly going insane . . .

                                Comment

                                Working...
                                X