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No transplant for me

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shirleymahoney Born In Tulsa Oklahoma and have a wonderful husband and 2 great children Find out more about shirleymahoney
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  • No transplant for me

    I won't be having a transplant, to tell you the truth i don't want these people operating on me, this doctor all he did was checked my chest in one place ask me how my breathing was upped my diltiazem to 300mg a day and told me he would see me in 6 months and he is the head cardio doc in the group and i had to ask if he had talked to doctor Maron and he was reluctant to say anything, he just said that he did talk to Maron and he told Maron my Oxygen was not low enough to go on the transplant list and Maron said OK and that was it , i don't know if that was all that was said but that is all he would tell me, and so as of now I'm not going to go to another doctor, the stress alone is killing me, just I'm going to just live life the best i can until something happens, i would like to thank everyone for the support

    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

  • #2
    Dear Shirley,
    My what a whirlwind you have been experiencing these days. Please know that you are in my prayers and I am sending you my love and encouragement!

    Over the weekend, I met a wonderful husband and father of a women in Colorado that had had HCM before she had a heart transplant in 1996. I asked him if he had ever heard of the HCMA - "No, can't say we have. It sure would have been nice to have a group to help us through such a tough time" I asked if he had had his children screened, "well, not all of them. The youngest is only 10, so they are waiting for her." He seemed to be very well informed even without us. I asked him if he and his wife would join our group and help others.

    So I gave him my story, the information about the HCMA & message board. I asked him to have his wife help people like yourself, that are going down the path of a possible heart transplant. He was very excited about sharing the informaton with his wife upon his return to CO.

    I may not know what to say at all times, but I do know there are people that I am meeting that will be able to help you and so many others on the message board. Hang in there sweetie! We love you and honor you for who you are and what you have offered so many others on this board.

    I send you my love and support, now and always!
    Sharon

    Comment


    • #3
      Shirley,

      Sorry to hear the news. I know what you mean about not wanting to see another doctor. I was also told that I have to wait until my levels went down. Unfortunatly, it's a numbers game not a quality of life game. Who cares if you can't walk to your car without feeling half dead as long as your O2 is above 90% you are not that bad.

      I guess their are alot of people who are worse off than us who need it more. I know this sounds harsh and forgive me but " at this point I don't care about other people" I need help and I want a life. I want to go a month without being admitted to the hospital for unbearable chest pain, sob, vomiting, hypotension and you name it. I'm tired of my days off consisting of nothing but doctors appointments. Today I had three tomorrow I have three more then I go back to work! ( oh by the way I have finals today and tomorrow) When I do go back to work at a sit down job that I should be able to handle just fine. I sit at my desk with sweat pouring off of my head and neck and pain shooting down my arm. But, yet I'm not allowed to talk about it to anyone because of the undue hardship it will put on my fellow co-workers who are nurses!

      But, I can't even get disability. My local cardio tells me that I'm strong and should tough it out. I need to get worse before I qualify. Where exactly is the line that says I'm bad enough NOW. I can't help but wonder which is going to give out on me first my mind or my body because I'm under so much stress that I'm on the verge of breaking. I think I'd give anything just to not have to worry about this da*n heart condition and go have just one good fun day with my friends. I live 45 minutes from Daytona Beach and I've not been there for two years because I'm afraid to be that far away and get sick. Isn't that just pathetic!

      I'm sick, I'm tired, and I can't get any help. I can't imagine that my life has to get worse before they will even consider helping me.

      Sorry Shirley for using your post as my pity party. I truly do sympathize with you and I hope my outburst will help with your stresses too. Just know you are not alone.

      Mary S.

      Comment


      • #4
        Shirley,

        What a frustrating experience. I swear that sometimes you walk in a place and they have no clue what they are looking at. You want to ask, "Have you even read anything about me, specifically? I'm so sorry you didn't have your coffee yet, but treat me as an individual, with respect and caring."

        I'm sorry for all the ups and downs you've been through.

        I will keep pulling for you.

        Debbie

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        • #5
          Shirley.

          I am so sorry you were treated in such a casual manner by the Dr. I continue to lift up the people on this board. May you experience peace and relief as you continue to push ahead.

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

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          • #6
            Shirley,

            I too am sorry for all the troubles and struggles you have , you too Mary.

            I have found that the doctors that can not compassionately and empathicly reach out to a patient who is suffering , probably need our pity. What a sad thing not to be able to travel along beside a patient to give them a sense of peace , understanding and validation for all their suffering to give hope that the day will arrive and they will get a chance to live more normally. How nicer if he had said, "we will be monitoring you very closely and we will be here for you when and if that time comes along."

            I have had many people approach me in the past and ask why transplants are not done on individuals right from the get go before trying surgery and meds that fail one after the other and the person is left to suffer? The only explanation I have been able to give is , although the quality of life for an individual may be poor , their heart or other failing organ is still functioning and able to sustain life. This does not negate that the individual is indeed suffering only that the organ is doing a job , albeit poorly. Transplants are risky also and as we know things can go wrong there as well. No medical person in their right mind would or should put a person through those risks, removing their heart and replacing it or another organ unless their is no possibility that life could continue with this failing organ or it shows active present and ongoing decline and deterioration.

            This is the only way I have been able to understand the need to wait for the levels to drop. I have had to step up and see that life can simply be horrible while individuals play the wait and see game. It is sorrowfull for the waiting one when you are the one doing the waiting and not having the quality of life to enjoy. It is tremendously hard to see the world around you go on as you feel left behind and you are not able to see into the future to know if anything will change for the better. When you already have a very big dose of "worse " in your daily life , it is hard to fathom that you must become even "worse" , before you can be considered for transplant.

            I will hope and pray for you that if this is the course your HCM heart must follow and that things do get worse for you, that you get listed quickly and recieve a transplant soon after. Please take your time to grieve this new bad news and emotional setback, just do not give up . You are a fighter Shirley and you need to come out fighting. We are all in your corner as you have been for all of us.

            Hang in there and we all hang with you.

            Big hugs, 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


            • #7
              Shirley, I am so sorry. I don't want you to be having to go through all this. I personally think you should call Dr. Maron and talk to him and see if he can help you understand all of this. HCM is so misunderstood in the cardiac world that maybe transplants for HCM should only be done at HCM centers. I will keep you in my prayers. Please PM me anytime. Hang in there.
              Midge

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

              Comment


              • #8
                Shirley,

                I am sorry things are not working out with the transplant. At this point what I know for sure is that we are here for you... it may not be a transplant...but if we could get one for you we would

                You are in my thoughts.

                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


                • #9
                  Shirley,
                  There is light and there is hope. I am with Midge on this one. I would say set up an appointment with Dr. Maron and he can shed some light on this. I want you to feel better and know that whatever happens we are all here for you. Take things day by day. I am waiting for my transplant and that's what I do. It sounds like the Doc you saw wasn't very good but there are good docs out there. Take care.
                  Kimberly K. Plaster

                  Comment


                  • #10
                    Thanks everyone

                    I think I will put a call in to Dr. Maron, see what is going on being this doctor seem to be very vague on answering me i think Dr. Maron had a lot more to say to him then this doctor was willing to say, and believe me i did tell him a few things when i was there, i told him when he said he thought i was doctor hopping to try to find someone to put me on the list and i said you had no right to say that to me and the only reason i was there was because my family didn't buy into what they were saying and and called Dr. Maron and he and my family wanted me to go see this Dr. brush, they said my oxygen had to be in the single digits to qualify for the list or go through a sudden death episode so i guess i have no choice here, unless i want to sell my home and move to where i can get help but right now i have my father here and that is not possible, i just don't understand changing my meds and not wanting to see me for 6 months

                    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


                    • #11
                      Dear Shirley,

                      I wish I had answers, but I don't. But I do have prayer, so I will.

                      Rhoda

                      Comment


                      • #12
                        Shirley,

                        I seriously don't understand this doctor. The experience I had with transplantation just doesn't at all seem to match what this doctor is saying. I don't get it. Is getting put on the transplant list so discretionary? I wonder.

                        Again, I'm so sorry. Is there someone else you could see, for a different opinion? Could you trying to see other doctors and see what could happen that way?

                        When my mom was on her journey to her transplantation, we had a discussion, and I will never forget what she said. She told me that she was so much more than this disease. She got tired of her whole life being dedicated to the disease. Going to so many doctors, everybody looking at her, and only seeing the disease, not her anymore, and basically, every waking moment becoming about HCM.

                        I do understand that. The energy spent in fighting this disease, going to the doctors, trying to have as normal a life as possible, yet, the deeper we get into exploring our treatment options, the more time we have to spend on them. It's frustrating, to the extreme.

                        The whole point is, I bet you are so tired of all this. But you have to keep fighting.

                        Shirley, I am so pulling for you.

                        God bless,

                        Deb
                        (Debbie)

                        Comment

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