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mtlieb Find out more about mtlieb
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  • #16
    Re: Off to Cleveland...

    Jim, You probably won't get my post until you return. I am sorry I did not get to offer you my best wishes beforehand. I have been once again under the weather. Well you know that my thoughts and prayers are with you and it is a relief to hear that you will finally be getting the best care and treatment. You have been sitting on this keg of dynamite too too long. I do have a thought with regards to getting communications to your PCP, Cardiologist, etc . and getting some response if you have problems in the future. Do you have a fax machine? Well I write everything out , all info and requests dated and timed. I direct it to the doctor and then call the office to see that it arrived. That's when they say," Yes, MS. Alexson, I've put it in front of the doctor. This usually takes care of the delays I was experiencing or the disregards and any questions as to why no one gets back to me. They don't do it anymore. I'll be waiting to hear how you did. Hang in there. 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: Off to Cleveland...

      Jim, I hope all goes well for you, good luck and get this under control once and for all.
      Every great thing that has ever happened since the beginning of time has started as a single thought in someones mind.
      So if you are capable of thought then you are capable of great things
      Good luck and stay well.
      Glen

      Comment

      • #18
        Re: Off to Cleveland...

        Wow! One day I miss looking at the board and my partner in crime is going to Cleveland. Jim good luck I will seriously be thinking about you. You have become such a good friend and you need all the blessings you can get!

        I hope all goes well!

        Mary s.

        Comment

        • #19
          Re: Off to Cleveland...

          Mary... how the heck are you!???????????????!!!!!!!!!!!!!!!?????????
          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

          • #20
            Re: Off to Cleveland...

            Jim,

            This is your cuz in VA. I decided to check on this site to see what it going on with you after our phone call last week, and was shocked to see things had progressed so rapidly. I'm glad I checked in since you're not home. Who's going with you to Cleveland?

            Sorry to butt in on the board, but it seemed the easiet way to check on you since I'm sure you'll be checking in here as soon as you can. Please let me know if there is anything I can do to help. I've been thinking about you daily but had a bad UC relapse that kept me out of pocket.

            BEST OF LUCK IN CLEVELAND - WE ARE ALL PULLING FOR YOU!!!

            Love,
            Laura

            Note to board: Jim is my cousin, we grew up together. You are right in your assessment that he is a great guy and deserves all your support! I'm out of state and wish I could help more.

            Comment

            • #21
              Re: Off to Cleveland...

              Jim

              Hang in there buddy and if you need anything you have my E-mail address let me know how you are feeling or if you just want to talk we can do that too

              Your Friend
              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

              • #22
                Re: Off to Cleveland...

                Jim,
                I am thinking of you too! I wish you the very best....hang in there, buddy and let us know what's going on
                \"It is not length of life, but depth of life.\"

                Ralph Waldo Emerson

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                • #23
                  Re: Off to Cleveland...

                  Laura, welcome to our board.

                  Jim, do you have any answers yet?? Please update when you can.

                  Reenie
                  Reenie

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

                  Comment

                  • #24
                    Re: Off to Cleveland...

                    Hey Everybody,

                    Just got back from Cleveland.

                    First, I'd like to introduce you all to my cousin Laura, who posted earlier on this thread. Laura found the HCMA while researching my HCM, and decided to join up and throw some support my way. How cool is that? These are a great bunch of people, cuz

                    I am having a myectomy two weeks from tomorrow... thursday, june 10th. I'll be admitted to Cleveland Clinic next sunday, have my cath on monday, and then i will be under observation for two days prior to surgery to insure my kidney is okay from the dye. There have been no problems with the kidney whatsoever, so there are no worries there, but since i only have the one now, we just want to make sure it recovers from the dye completely before proceeding with open-heart surgery. I don't have my spare anymore, so we're being extra careful.

                    As far as the insurance issue goes, i got a call from my PCP finally. According to them, they called the insurance company today and were supposedly told that it is the specialist that must call for pre-authorization and that they were right all along. LoL. Ping-pong anybody? I give up! These people are driving me frigging nuts

                    Anyway, it was a great day. I'm on some Lasix now as well, and with any luck i'll be flooding the bathroom in no time!

                    Thanks everybody,

                    Jim
                    "Some days you're the dog... some days you're the hydrant."

                    Comment

                    • #25
                      Re: Off to Cleveland...

                      Jim, So glad to hear that there is a good plan in place for you. I think it is the best decision and you had to make it. You will feel much better after I am sure. Got to love that Lasix! Let the floods begin! We are all here for 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

                      • #26
                        Re: Off to Cleveland...

                        Jim,

                        I'll be praying! I hope the days go quickly.

                        Rhoda

                        Comment

                        • #27
                          Re: Off to Cleveland...

                          Originally posted by Pam Alexson
                          Jim, So glad to hear that there is a good plan in place for you. I think it is the best decision and you had to make it.
                          You are absolutely right, Pam. Although the drug-trials have been a bit harsh at times, i would never have felt comfortable proceeding with a myectomy before now. Right now, i feel that this is exactly the right course of action at exactly the right time... and i am the only one who could make that decision. I don't feel at all like i'm being 'talked into' having the myectomy. This is all my own diabolical plan

                          Jim
                          "Some days you're the dog... some days you're the hydrant."

                          Comment

                          • #28
                            Re: Off to Cleveland...

                            Finally some good news i hope everything goes well for you Jim i have been praying for you bud, relief is on it's wayi thought hoover dam broke when my lasix started working, get yourself a magazine and park in your bathroom for awhile and i can't take it after 6 pm or i'm up all night
                            Take Care

                            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

                            • #29
                              Re: Off to Cleveland...

                              Jim, bet you've never been so happy at the prospect of major surgery before! Good luck! I'm so glad for you.

                              Reenie
                              Reenie

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

                              Comment

                              • #30
                                Re: Off to Cleveland...

                                Aaaaaaahhhhhhh... Lasix is my friend
                                "Some days you're the dog... some days you're the hydrant."

                                Comment

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