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Well another run around

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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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  • Well another run around

    I was told my pressures were too good to go on the transplant list and that my Oxygen was 25 and that it would have to be in the single digits for me to qualify for the transplant list and that i would have to be bedridden to go on the list the wedge pressure was a 6 this is all from the heart cath and the metabolic stress test,

    I was sent to this transplant team because i needed a transplant and this came from two of the best doctors Dr. Gilligan and Dr. Maron and now this doctor Dr. Herre says no, i can't walk across my house without becoming short of breath but he wants me to walk 2 miles a day and i sleep with oxygen or i hurt so bad in the morning i can hardly walk, I'm telling everyone i'm about to walk away and just live my life as well as i can, i'm tired of getting a run around, they were suposed to rearrange my meds to try to pull some fluid off and did nothing i mean he didn't even take a stethascope to my chest and i told him i had bronchitis and he said that is not my field and i said well were you not an MD before you were a cadio doc and so now i have to spend more money to see my primary care doctor so i can get some antibiotics, you know you would think he would listen to my lungs to make sure they were ok being i have been coughing alot in the last few days but no, i'm telling you guys i started crying in his office and i haven't stopped, i don't mean to be so negative about this but i don't know what to do anymore, you know i think some doctors just don't care anymore i think they have forgotten why they became doctors, i never thought i would ever say that, I need someone to tell me something to not make me not quit because i don't want to, that is what my brother did and it killed him and i think my neice gave up too from the way she sounded over the phone when i would talk to her well enough of my babbling i hope this isn't freaking anybody out, but i have come to the end of my rope and there is like there is nowhere to go now

    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
    Shirley.

    I am sorry you have to go through this disappointment. May God grant you peace.

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

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    • #3
      I'm sorry for the disappointments. Things will look better after you get a little rest. Just take care of yourself and call Dr Gilligan to let him know what the doctor told you today. Hand in there.

      Reenie
      Reenie

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

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      • #4
        Shirley,

        You need to call Dr. Maron and tell him the situation so that he can be your support and see what he can do. I would also try another transplant center. Don't give up! I know it's hard to not want to but maybe this transplant team wasn't who God had intended for you. Think about that! PM me if you need to.

        Beverly

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        • #5
          Shirley,

          I am so sorry things have been so frustrating for you (to say the least!) lately! I can sure understand why you are feeling so defeated right now! I would be too. I hope you start feeling better as the day goes on and that you no longer feel like giving up. I wish you much strength!
          Dolly~
          mom to Andrew(HCM) 21 years old
          Diagnosed \'95 age 5
          Myectomy \'96 age 6
          ICD implant \'99 age 9
          First ICD shock (X2) \'04
          ICD replacement surgery \'05 age 15

          *And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)

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          • #6
            Dear Shirley,

            Please do not give up! Those grandchildren need you around as do we!

            I will be praying especially that something will give you special encouragement right now.

            Rhoda

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            • #7
              Shirley,

              I'm so sorry about everything that you are going through right now. I can only hope that you can keep going, pushing, and doing everything you can to get the diagnoses you need.

              Can I tell you that your post was a bit of an eye-opener for me? I don't know if you know, but my mom got a heart transplant as a result of HCM.
              She had complications afterward, which I have explained in previous posts, so I won't go into it here. But anyway, she passed away 2 weeks later.

              The eye-opening thing was how bad you have to be to be on the transplant list. We knew my mom was bad, we had all the medical explanations and knew it was really bad, but she never verbalized her pain.

              We all tried to be very supportive of her, but it's hard when you are liviing in the moment, to face reality of a loved one going through so much. When we would talk to my mom, she would turn the conversation, like, "Well, this is how I am today, but how is....your job, your husband, your daughter, ect." It was so hard... you want to be supportive, let her know how much you care, yet feel like you couldn't be, because she wouldn't discuss it with you.

              I feel heartbroken that my mom lived through so much pain. I know how much pain she was in for months before the transplant. It is so terrible to know that someone you love is in that much misery. You just don't know what to do for them. Your heart is breaking, but you can't do anything but love them. It's so hard to be the loved one.

              You sound like you are fighting every day to just live and try to get through the day. I watched it with my mom. I understand, and I'm so sorry that you feel so bad.

              Please, Shirley, know that my thoughts and prayers are with you. Don't give up. I'm sure you have loved ones who feel like I did, and just don't know what to do.

              I'm sorry for the rambling post, too. I must have needed to get it all off my chest. Maybe it will help...?

              God bless, and best wishes,

              Debbie

              Comment


              • #8
                Hang in there Shirley, answers are on the way. I sent you a PM and got yours too.

                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


                • #9
                  Debbie i know what you mean about the family hurting too, i about gave up last night and just like everyone keeps telling me you have come too far to give up now and i have to believe there is someone out there to help me, my daughter talked to Dr. Maron earlier today being i have just been too upset to talk to another Dr. right now and he wants me to see another doctor in the group and i guess he is going to talk to the doctor because he knows him well

                  But first I think i will have a consultation with him to see what his view is on this, i can't go through this again i have cried for 24 hours now over this and i still will if i think about it and yes if it wasn't for my friends here and my family i would have given up a long time ago i mean I'm not just going through all this just for me , I 'm doing it for them too i mean i have a 4 grandchildren i want to see grow up and the youngest is just 4 and thinks she is 14, But i would like to thank everyone for your kind words and please keep me in your prayers as i do everyone here

                  Shirley
                  PS Debbie could you tell me what made your mother die, did her body just reject the heart or was it something else Thanks in advance
                  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


                  • #10
                    Shirley,

                    I really do believe that there is a journey to get to where you need to be. I think that you are on your journey. Every new doctor you see opens another door, brings a new idea, and maybe thinks of a new treatment. If you keep opening enough doors, you will eventually find the right one.

                    I know it is incredibly hard to have to keep going through the consultations, explanations, and endless appointments. It can be exhausting in itself, both physically and mentally. But it is getting you on the right road.

                    First of all, have you tried to bring a recorder to your appointments? I know that it helped with my mom. You know how it is, you go to an appointment, sit there and listen, and try to remember the questions you need to ask, and sometimes when the doctor is speaking, your mind is on your next question. You forget the exact answer.

                    I can only say that what happened to my mom is fact, but the reason it happened is what me and my family believe.

                    My mom developed a bleed in her brain, after a capillary burst. This happened 6 days after the transplant. The result was that her brain swelled, developed more bleeds, and she would, eventually, have been a vegetable if she would have survived.

                    After much discussion within our family and with teams of doctors, we followed our hearts and our mother's wishes. When it became completely evident that all hope of good life was gone for my mom, we asked the doctors to stop the anti-rejection drugs. My mom wasn't getting any artificial means of support, since that was her wish. She did not want to live as a vegetable, and that had been her major fear before the transplant. My mom had some complications before the transplant that could have predicated that. If you want more details, please PM me, and I will go there with you.

                    Anyway, we believe that the reason she got the capillary bleed was that before the transplant, her heart had become so weak that her brain wasn't getting the proper blood flow. The capillaries became weak. After the transplant, she had this young, strong heart pumping massive blood flow to her brain. The capillaries couldn't handle it. That's what we believe. No medical evidence there.

                    It was only two days after stopping the anti-rejection drugs that my mom died. The doctors at the hospital said that they had no idea what the effect of stopping the drugs would have on her. It was unprecedented after a transpant. Nobody they knew of had ever done that.

                    Shirley, I could go on and on about this. If you want more details, feel free to ask, and I will answer.

                    I believe that everyone is different and that every experience is different. So please don't let this freak you out in any way.

                    God Bless, and I will talk soon to you.

                    Debbie

                    Comment


                    • #11
                      Shirley, I am home and just checked messages. Had computer problems while gone. Sorry, for what you are going through. Your daughter has the right idea go through Dr. Maron. My feeling is maybe you need a transplant through a HCM center. We HCM patients are unique even in our tests leading up to transplant. Get Dr. Maron involved if possible. I am here to listen to your venting. Hang in there but remember we all need our day to cry once in a while. Grandchildren are a great incentive to keep going I just got bacdk from seeing our 2 youngest. It was great I am exhausted after a day and half travel coming home and going. But well worth it. If I can help just PM me.
                      Midge

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

                      Comment


                      • #12
                        Midge

                        Thanks for listening to my aggrevations, i have an appt with the head cardiologist here with the same group he is who Dr. Maron told me to see his name is Dr. Brush and Ken says if he doesn't get me on the list then we are renting the house out and moving to Minn for a while so we will see



                        PS the last HCM heart that was transplanted here was 7 years ago which that bothers me a little

                        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

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