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Just Curious - Reasons for Heart Transplant

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Janet McClure Single mother to two amazing kids. James is 13 and has HCM. Emily is 11 and recovering from TBI. Find out more about Janet McClure
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  • #16
    For Theo,

    I can say in my case, I know I am heading down this road because post myectomy, my heart has changed. I am no longer obstructed, but my ventricles have dilated, and the imaging is showing signs of stiffening. Also I have had a sharp drop in the ejection fraction (from 75 pre-myectomy, to 55 post, then 45 and to 35 one and two years post). All in all, I feel better than premyectomy, but I never really got the relief from the surgery that most do and I have shown sign of slipping back.

    I am techinically in the "burn out phase" or "end stage" both of which are not good terms and there is actually some lobbying going on to change them, because one can stay in this stage for many many many years before it gets worse.

    I suspect it is different for each person, but that is my story.
    NEMC's (Boston) First Myectomy 7-22-2003

    Comment


    • #17
      Well i seem to be in the same boat as most here as far as the burnt out stage i'm waiting to to go on the transplant list and boy is i getting hard, i get tired very quickly anymore here it is 7:30 pm and i could go to bed, but once i get there i can't seem to get to sleep so i end up taking tylenol pm to make me fall asleep does anyone else have this problem it is sometimes 2 or 3 am before i fall asleep and i watch my grandkids 5 days a week so i have to get up, hope everyone is well tonight

      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
        Ok, while we're on the topic of transplants when I went to the Mayo a few years ago, they told me to come back every 5 yrs. for re-evaluation and to definitely come back if I got to the "transplant" stage. Well, I wonder how I would be able to be on their transplant list when I live 16 hrs. from there. How would they do that? Would I get a call and have to fly down there ASAP or would they make me stay there. I mean one could be on the list for years! Just wondered if anyone knew how any of that works??
        Heather, 43, non-obstructive HCM, dx'd at age 14, AICD implanted 11-02, PVAI ablation done for a-fib and a-flutter 5-2010. 2nd PVAI done for a-flutter and a-tach 3-2014. 3rd PVAI for a-flutter June 2015, dr forgot to reset ICD settings and I went into vt and almost died, July 2015, July 2015-started tx work up, October 2015, put on list in Dallas and tx'd on November 14, 2015.

        Comment


        • #19
          Shirley

          I usually get tired about 8 p.m. I take Trazodone HCI (25 mg) to make me sleepy and it works sometimes. Other times I go to bed around 8-9 and I can't sleep so I get up and usually get tired again around 1-2 a.m. This is really hard for me because I must get up to get ready for work at 5:00 a.m.

          I also find that I get really tired early afternoon. I have found myself dozing off in front of my computer at work.

          I tried staying up until 10 p.m., but then I was so overtired I just tossed and turned.
          Esther

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          • #20
            I was transplanted for the same reasons as Scott. Quality of life. I could have stayed on meds for a while longer but My endocrine system had already shut down, my pulmonary system was being affected and my kidneys were shutting down. Even though I didn't meet UNOS criteria specifiably for a heart transplant all other things combined had made my life miserable. So as I seen it 'it was life or a life just existing. Having the transplant has given me 7years & 3months of a wonderful life. When people ask me would I like to change anything the only thin I would like to change is that my son didn't have the same thing. Other then that i wouldn't Change a thing,I have been truly blessed.


            Karen
            Karen Cicconetti
            Heart Transplant 1998
            Don\'t take your organs to heaven
            Heaven knows we need them here

            Comment


            • #21
              Scott , Dughr & Karen thanks for answering my question.

              So pretty much when a doctor says that one day you will need a heart transplant it means that you will reach burn out stage? Quality off life will diminish? What percentage can we say that people don't get to burnout stage by the time they reach their 60's, 70's?. I'm guessing that if someone like me has symptoms at 26 I may reach burnout by the time I am?

              Heather here in Vancouver I have assisted with promotions for the transplant society. I know that they only do transplants at St. Paul's so people have to fly in from all over BC. So when you have a match, you might get a call to say that you're next and you fly in, or if you may be called in if you are next. Most donors are brain injuries so I believe they keep people on life support until you get there. Check out this site for more info.


              http://www.transplant.bc.ca/

              All the best


              Theo
              26 years old, diagnosed April 2005. ICD July 2005.

              Comment


              • #22
                Originally posted by Grecoeuro
                So pretty much when a doctor says that one day you will need a heart transplant it means that you will reach burn out stage? Quality off life will diminish? What percentage can we say that people don't get to burnout stage by the time they reach their 60's, 70's?. I'm guessing that if someone like me has symptoms at 26 I may reach burnout by the time I am?
                Hi Theo,

                Speaking only for myself, and keeping in mind I am not a doctor or any sort of medical professional...

                A transplant was the LAST thing I ever expected to enter into my world. I was diagnosed at age 20 and, of course, I read up on HCM (or rather, IHSS as I was diagnosed). I got carried away with all the doom and gloom, but I was always well aware of the chance of sudden death. We didn't have the internet back then (that sounds so weird, I know) so reading up took a lot more effort. Nothing I read mentioned the efficacy of a transplant as a treatment for HCM.

                I have a relatively mild case of HCM; it's all the other things -- mainly the atrial fibrillation and now the fibrosis -- that have complicated matters for me. I don't know that I'd say my quality of life has diminished significantly, even after I became more symptomatic in 2003 because of the AF. I looked at this as a need for an adjustment in my treatment and went about my life under that impression.

                The fibrosis of my ventricles is the big culprit for me. As it gets worse, it will diminish the pumping capacity of my heart. What I don't know is whether fibrosis is the only factor that can diminish the pumping capacity. Maybe others can share their stories about that.

                I don't think any doctor could reasonably put a timetable as to how long it will be before a patient reaches "end stage." A vast majority won't get to that point. I'm under the care of a doctor who is considered to be the leading expert on HCM, and even he said there is no way of knowing how quickly my condition will deteriorate. It's his opinion that while we have the luxury of time, it is best to get on the list now rather than wait until it's at crisis stage.

                I hope this helps some...

                -- Tim
                Life is a banquet...and I got botulism! -- Me

                If time flies when you're having fun, will I age faster at Disneyland? -- Joel Perry

                Comment


                • #23
                  Hey all, thanks for the kind words--I'm kinda amazed at the reponse, but am happy to give something back. Cynaburst was right, I've been down for the count for a couple of days (nothing heart related) and it caught be by surprise. I'll respond more completely in a couple of days!

                  Cheers,
                  Rob
                  --Living life on the edge .. of a continent!
                  Charter member: Tinman Club

                  Comment


                  • #24
                    angall, to answer your question about what Mayo does if you live far away, like 16 hours it all depends on how long it takes to get here by plane. The requirement is be here in 4hrs. I live in Lincoln, NE which is a 61/2 hour drive but a 1hr. flight if you can get a private plane, and trust me there are people out there that can get it down.

                    Or the other thing they do is make you come a live here in Rochester, we have people staying here at the Transplant House that are from the East and West Coast waiting for organs. I even told the docs that I would move up here for the winter, just so I would be available in bad weather.

                    The one thing I do like is they keep you here for 90 days after your transplant to make sure everything is going great. At first I thought it would be a hasssle and I know I have complained about boredom but in the long road its the best thing for you.


                    By the way I saw my old heart on Thursday and let me tell you something, my ventricles were both about sealed shut.


                    Scott
                    Scott Stanley


                    Heart Transplant June 14th 2005

                    Comment


                    • #25
                      Hey Tim thanks for the feeback.

                      I just got an ICD implanted and I was told that It also has a 3rd option to correct AFIB. Do you have this one?


                      Its the lastest guidant.

                      Theo
                      26 years old, diagnosed April 2005. ICD July 2005.

                      Comment


                      • #26
                        Well in my case I have the family history of transplantation but I looked at it objectively because I didn't think I would end up on the transplant list or even needing one. Everyone out in the world who doesn't know what hcma is or doesn't understand me look at me strangely that's why I am glad there is this Hcma site and my family and friends. The family history of heart transplants include my dad, my half brother,my cousin who passed away and now my aunt and I are on the list.I do get down some days and it's hard but I keep an upbeat attitude and say hopefully one day I will get my heart and do all the things that I am not able to do now.
                        A few years ago they determined that I would need a defibrillator or I could die. Then I upgraded to a biventricular pacer last year. I have days where I am lightheaded and I do walk but many episodes of shortness of breath so that's when they started talking about transplant. I went to the hcma center at NEMC to see Dr. Maron for a second opinion and he said yes I would need one. So I went in for a regular right heart cath there my pressures were normal a week later they scheduled another right heart cath with exercise. I had to lift two heavy saline iv bags of solution and they had me do that about 25 minutes. My pressures really elevated so they said yes I would need a transplant. Also I didn't do well on the stress test my oxygen was very low. All of us who have transplants or are waiting like me. We should all be able to excel and write books. lol. Dream to touch the stars live to touch your dreams. That's what I plan to do once I am well and that's I wish for all of you. God bless everyone. And thanks for letting me vent.
                        Kimberly K. Plaster

                        Comment


                        • #27
                          Originally posted by Grecoeuro
                          Hey Tim thanks for the feeback.

                          I just got an ICD implanted and I was told that It also has a 3rd option to correct AFIB. Do you have this one?

                          Its the lastest guidant.
                          Hey Theo...

                          I haven't had mine implanted yet, but I am about 90% sure it won't be a Guidant model. I'm to have an ICD that has pacemaking capability, and I think Medtronic is the only manufacturer that makes such a device. I haven't yet seen the doctor about this (my appt. is for 8/30), but I imagine I will have the device implanted sometime in September or (ideally) mid-October.
                          Life is a banquet...and I got botulism! -- Me

                          If time flies when you're having fun, will I age faster at Disneyland? -- Joel Perry

                          Comment


                          • #28
                            Boy, this site has been busy. I had to fly to Pennsylvania for a funeral and got back late last night. I am glad you have all had so much input here. As far as transplant life goes. My life post transplant is so much better than pre. I have my independence again. (Flying alone across the country would not have happened 2-5 years ago. Re: living arrangements while waiting. It depends on the center. Mayo arranges 2 different charter companies to fly you in if you can be there in the allotted time otherwise like Scott says you live in Rochester until the time comes. Every person is different on why they need a transplant. Some people function well in Restrictive form of cardiomyopathy and others (like me) need to transplant soon. Medicines help some and others do not respond. It is just like with any illness. My experience has certainly been positive.
                            Midge

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

                            Comment


                            • #29
                              Tim,

                              Correction.. My leads are guident but my ICD is a Medrtonic. It also paces and corects A-Fib. You might want to ask your doc about this one since you have had a-fib before?


                              T
                              26 years old, diagnosed April 2005. ICD July 2005.

                              Comment


                              • #30
                                I know it is not popular to say anything in favor of Guidant these days, but I must say that I do have a Guidant ICD that includes pacing and at least some atrial pacing features. I am 100% ventricle paced and 3% atrial. But because of the problems with the programming on these models, some of the atrial features are now turned off. In spite of the problems with Guidant, which I agree are serious, I can say that I like mine and am happy with the advantages it brings.

                                Rhoda

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