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On my way to Boston

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Toogoofy317 non-obstructed hcm, AICD 11-01-02 and 10-6-05 Find out more about Toogoofy317
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  • #16
    Re: On my way to Boston

    Well,

    The long and short of it all! Even the folks in Boston are stumped. Unfortunatly "heart transplant" is coming up more frequent. They didn't jump into it to much because they want to see the results of a couple of more tests. So on Tuesday I am scheduled for both a nuclear stress test and a V02 stress test. They will then get back with me and discuss what needs to happen next.

    As far as work goes well its my choice. I was told that it would not make things any worse but I do need to cut back. I still want to try and work so maybe we can do it with restrictions. If not then they will back with the disability.

    So it is still the waiting game. I'll keep everyone posted.

    Mary S.

    Comment


    • #17
      Re: On my way to Boston

      Mary
      I will keep my fingers crossed that they find some thing to give you a better quality of life you take care and have a little fun ok

      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


      • #18
        Re: On my way to Boston

        Mary,
        We are all here rooting you on! Please listen to the doctors there and make wise choices. I am praying for you.
        Rhoda

        Comment


        • #19
          Re: On my way to Boston

          Mary,
          As you may know, I go to NEMC...I know that Dr. Maron & Udelson will steer you into making the best decision. Are they nice or what!!?? You are in excellent hands. I wish you the very best and hang in there...we are all pulling for you!!
          \"It is not length of life, but depth of life.\"

          Ralph Waldo Emerson

          Comment


          • #20
            Re: On my way to Boston

            Dear Mary,
            I know you are deeply concerned with your life expectancy in the event you do have a transplant. Think of your life expectancy without it. You told me that so far the longest living person with a transplant has it for about 26 years – but she is still living.

            Let me give you a little background on the procedure. As you would expect, the original transplant patients were people who were in dire straights medically, not counting their heart troubles. The successful patients never left the hospitals, and lived for months. As the doctors learned more and more of the care needed, the life expectancy grew, and then one day a patient actually left the hospital. At this time the life expectancy had grown to a few years.

            Now-a-days heart transplants are performed on normal people who are in need of a new heart, and life expectancy is no longer a real concern. As I mentioned earlier, a woman in Minnesota has survived 26 years already – she was done at the very beginning of the transplants performed in this country. There are also a growing number of people who have had a second transplant, which I expect starts the life expectancy clock all over again.

            Basically, what I am saying is that with the advances in medicine over the past twenty-five years projected forward another twenty years, I see no reason to think that your overall life expectancy will be diminished in any way. Actually, your current life expectancy will be enhanced back to normal. Overall, I would say that’s a pretty good deal.

            Keep your chin up hon. – Grand-pa Burt

            Comment


            • #21
              Re: On my way to Boston

              Mary,

              Sorry for you that things are still uncertain. Good luck with your tests on Tuesday. I hope they are able to get some clarity. Thoughts and prayers.
              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


              • #22
                Re: On my way to Boston

                Good luck Mary, lets hope that's not the alternative and they find a better approach.
                But if it is, at least you will have some thing concreate to deal with instead of all the crap you've been going thru.
                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


                • #23
                  Re: On my way to Boston

                  Still thinking of you.

                  Reenie
                  Reenie

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

                  Comment


                  • #24
                    Re: On my way to Boston

                    Mary -
                    Glad to hear you are in Boston - Glad to hear you are getting some answers - -Glad to hear you have OPTIONS. We do not always get the answers we want - but - it is good to get to the truth!

                    TAKE CARE!
                    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


                    • #25
                      Re: On my way to Boston

                      Mary,

                      Wanted to let you know that I am also thinking of you and wishing you the very best. You are facing so much and really are an inspiration with your fighting spirit.

                      Debbie

                      Comment


                      • #26
                        Re: On my way to Boston

                        Mary,

                        You are in my thoughts and prayers...STAY POSITIVE


                        Tigger1
                        " Real Courage Is Being Scared To Death But Saddling-Up Anyway "

                        Comment


                        • #27
                          Re: On my way to Boston

                          I too, am including your in my prayers. I hope that you finally get some answers. Keep your chin up.
                          Esther

                          Comment


                          • #28
                            Re: On my way to Boston

                            Hi All,
                            Just talked to Mary and she is very upset – to say the least. Yesterday she had a stress test, and shortly thereafter her pressure dropped to 45/12. They threw her into ICU and gave her something to push up the pressure.

                            Today they moved her to the regular cardiac floor, and her pulse rate was 160. She had stomach problems and threw up twice, and her stomach feels better now – but she still has a lot of pain in her chest, shoulders, neck, and back. Dr’s Maron and Udelman are gone until Monday and the attending cardiologist would only give her a pain killer by mouth that takes over two hours to start to take effect for her.

                            Her spirits are very low. She said it’s Florida all over again – nobody knows what to do to help her – they’re all stumped, but the pain and untoward effects continue.

                            I hate to post this, but I know you would want me to. If you have a few minutes during the week-end give her a call and try your hand at cheering her up – or at least taking her mind off her troubles for a few minutes. Her cell is still 407 – 361 – 5723.
                            Burt

                            Comment


                            • #29
                              Re: On my way to Boston

                              Burt ,
                              I am sorry to here that Mary is not doing well she has been on my mind as I am sure on others as well.
                              I do believe her particular condition and the complexity of it all together will require a multifaceted approach and unfortunatetly that takes time . Time for those of us who are carrying on with routine speeds along. For those like Mary who face many difficulties and obstacles, it is a slow arduous , often painfull and at times almost fruitless , seemingly endless journey.

                              It is difficult on the best of days to keep ones spirit going in the right direction let alone attitude and intellect. Laying there as they solve the multi issues or at least find relief for the individual often gives the patient a hopeless sense. We must all keep a positive spirit and attitude for Mary and send her all the prayer we have.
                              She is in a first rate center and I assure you and everyone else that DR. Maron and Dr. Udelson will utilize every resource and expert available to them to try and help Mary.

                              This place is in no way shape or form anything like what Mary has had in Florida. Although I can imagine that it feels similar as the process now starts over with a new bunch of eyes looking at all of Mary's history past and present and trying to find some resolution and help her. It will take time.

                              Mary , you are in my thoughts and prayers as well as your doctors that they will be able to find some answers.
                              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


                              • #30
                                Re: On my way to Boston

                                OK GUYS

                                I have a call into her for her to call me, she is on the phone i guess

                                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

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