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Hello from an OG member -- Its been a long time


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  • Hello from an OG member -- Its been a long time

    Hey everyone,

    I have been on a break---for a few years!

    So much has changed over the years and I had to step away from the group for various reasons. I just dropped in this morning to see how my old buddies were and see there are a ton of new people who I have never met! I am sorry you have to be here, however, you know by now you are in good company.

    I was the first myectomy at what was at the time New England Medical Center, now Tufts. That was in July 2003. I had a rocky road for a few years but am finally stable I think. All signs pointed to eminent transplant a few years ago and then my E.F. stopped dropping. It never came back, but it never fell below 30. I continue to take Atenolol and my A.C.E. inhibitor and haven't changed my meds now in over 4 years. I still get to go see my old buddy Dr. Maron once a year only now...come to think of it, I think I am due!

    Anyway, I just wanted to say hi and for all the people struggling with this disease, there are some of us who manage to trudge through and although I am never going to be able to do what I used to do, it seems to have leveled out now and I am happy in my routine.

    Best wishes!

    NEMC's (Boston) First Myectomy 7-22-2003

  • #2
    Re: Hello from an OG member -- Its been a long time

    Hi Doug,
    Nice to meet you,it does seem to be a great group of people here forced together by an incidious and unpredicable desease. I'm sort of new here and I'd be completely nuts if I didn't get the support that everyone has shown me.Glad to see you're in a stable state and that you've a satisfactory routine in life, Keep on keeping on!
    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


    • #3
      Re: Hello from an OG member -- Its been a long time

      Doug - Good to hear from you again - Linda


      • #4
        Re: Hello from an OG member -- Its been a long time

        Doug - Glad to hear that you are stable and back to a normal way of life. I know that you were feeling discouraged when you left us.
        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.


        • #5
          Re: Hello from an OG member -- Its been a long time


          Nice to meet you. I'm a newbie so we never met before. Glad to hear you are stable. Fickle disease.

          Sounds like you were a pioneer for many of the rest of us - thanks!

          Toodle pip... Moosedreams
          Diagnosed HCM Nov 2009
          100 mg Atenolol; Baby asprin
          First Trip to CCF June 2010
          HCM Specialist at CCF... Dr. Harry Lever
          Septal Myectomy at CCF... August 9th 2010: Dr. Nicholas Smidera
          AICD w/pacer at CCF... December 20th 2010

          Once you choose hope, anything's possible. ~ Christopher Reeve

          Since we can not run in the park, we can be the ones to take a stroll, look around and enjoy the simple things in life. ~ Rosemaire1125



          • #6
            Re: Hello from an OG member -- Its been a long time

            Hi Doug,
            Glad you're here!

            Myectomy on Feb. 5, 2007.


            • #7
              Re: Hello from an OG member -- Its been a long time

              Hi Doug, glad to hear that you are doing well!
              "Some days you're the dog... some days you're the hydrant."


              • #8
                Re: Hello from an OG member -- Its been a long time

                Welcome back doug!
                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 . . .


                • #9
                  Re: Hello from an OG member -- Its been a long time

                  Welcome back! I did a quick search last night and saw some posts on there from Rob and I realized how much I miss him! That was a tough time for me and I took a step back as well guess I was scared that would happen to me. but, we are still here right?



                  • #10
                    Re: Hello from an OG member -- Its been a long time

                    Hi Doug. Its been a long time other then I see you on facebook. I was just talking about you to one of my daughters the other day; reminiscing and wondering how you were feeling and BAM you posted on the message board. Strange how those things happen huh? I will never forget how you helped me. One important way by coming to see me after my myectomy October 2003. Really you helped me see there was a light at the end of my tunnel.
                    So glad you are doing well and only have to see our friend 1x/year.. I still see him about every 4- 6 months. Though my EF remains around 50 I continue to experience a lot of HF symptoms. Recently, adding another diuretic to the regime is kicking me but I will endure to see it through.

                    Keep doing well and know that you are thought of often and fondly.

                    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


                    • #11
                      Re: Hello from an OG member -- Its been a long time

                      Hi HCMA
                      I've been on a little break myself. Thought I would pop in today and see whats new. I have been doing pretty good after my Myectomy at Mayo with Dr Schraff, he was amazing, the whole experience was amazing. Sometimes I still have pre-syncope symtems, but I'm are doing ok. I have come off a lot of medicines, So with that alone I feel much better. Hope to continue with good progress. Thanks for all info and good advice.
                      I am new to this site, Have had HCM for a while my septum grew from 14cm in 1998 to 27cm in Jan. 2003. Had a defiblerator dual pacer put in March 2003. Sometimes I feel like I still have the symtoms especially during menstration.


                      • #12
                        Re: Hello from an OG member -- Its been a long time

                        you just made me smile! so good to hear from you. I had been thinking about you a week or so ago! Well sounds like its been a rocky road... but you are still ON THE ROAD!!
                        BIG hugs and THANK YOU for coming on in to say hello!

                        Best wishes,
                        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)


                        • #13
                          Re: Hello from an OG member -- Its been a long time

                          PAM! Lisa! Mary! And to the new friends, hello.

                          Pam, I think about you and had hoped things were going well. Lisa dropped in on me when I was just out of being dissected by Rastigar and I know how much it meant to have one of the "team" drop by. I am really happy to have been able to check up on you and glad I was encouraging!!! I wish I had the chance to talk to you more Lisa, and that was now 8 years ago! But I am still kicking and causing troubles, so its a good thing.

                          Thing is, I drop by and read Rob's wife's blog at odd times and remember how much it effected me to be a part of people's life like Rob who were here for us only to slip away all too soon. I had just read his blog again and had to come and say hello. I am grateful for all the work you all do and know it helps people, but more important, you help SAVE LIVES! I would not be here without the information I got and connections I made.


                          NEMC's (Boston) First Myectomy 7-22-2003