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  • Looks like I'm a potential member to the club...

    Goodness, what a day it has been today! (I'm being slightly sarcastic here; I don't know how else to deal with it other than trying to be amusing.)

    As I was laying on the table, having my echo, Dr. Maron walked in and chatted a bit. I asked him how the HCMA conference was, and he said it was fine, and oh, did I know that the HCMA president, Lisa, was standing outside the room? I said, "Send her in so I can say hello!"

    Next thing I know, there's Lisa and Kelly, watching my long, floppy thing (i.e., a very unusual valve leaflet) on the screen. Lisa took some pictures for prosperity, chatted a bit, and then had to leave.

    (It was nice to briefly meet you two! And what a funny coincidence it was!)

    Anyway, to make a long story short, I had some more evaluation done today, and the conclusion is two-fold: 1) I'm going to have an ICD; and 2) I've reached the burnout stage and will start the process of getting on the transplant list.

    To say that I'm shocked is an understatement. I mean, I know I've become more symptomatic with the AF and such, but as far as the HCM itself goes, my numbers aren't all that bad and I'm not obstructed. The fibrosis of the ventricles, however, totally came out of left field, and that seems to be of great concern.

    At this point, I don't know what to think. I certainly didn't expect to hear this news.

    I'm sure I'll write more about this soon, but I just wanted to get it out now.

    -- 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

  • #2
    Tim, what a shock this must be to digest and figure out. It is hard to know how to reply--I am so sorry for the bad news, yet I guess we need to be glad that if this is the case you have the expert information. For right now, I am holding you in my thoughts and wishing you well as you process the first round of this information and decide what to do and learn more. I'm sending very positive best wishes for you, Lisa Inman

    Comment


    • #3
      Tim,

      First, I wanted to say that there are many of us here will be there for you when you need us. Second, I know you have problems with a-fib, but why does Dr Maron think you are in 'burnout stage'? How does he know that you will ultimately need a transplant? I'm not saying he is wrong but it seems a little out of left field to me, especially if your 'numbers' are not that bad. The point I am trying to make is that nothing in life is guaranteed, both the good things and bad things. But then again, I'm not the expert.

      Can I also ask why and how they can know that you have fibrosis of your ventricles? Can echos detect this?

      Even if it gets to the stage of needing a transplant, there are many people out there who live great lives post-transplant. Many recipients live healthier lives than they have in years, and this is something to celebrate - if it comes to that.

      Take care buddy and stay positive.

      Paul
      Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

      Comment


      • #4
        Tim,
        Kelly and I were happy to see you - albeit for only a short time. To answer a question re: how can you see fibrosis - it is only with an MRI can we see this and I will have to assume that Tim has had an MRI.
        As for your heart, I did get a very good look at yours on the echo. I could see that the wall motion was not what it should be and that your EF was likely going to be low. It was not my place to say anything in the room and I actually would have rather stayed around to talk to you after you had finished with Dr. Maron, but had an appointment down at Mayo to get to so we had to run.

        Your mitral valve is really rather unique I have never seen anything like it, nor had Dr. Maron. I am sorry you had such difficult news given to you and it is my hope that the HCMA will be here to help you in any way we can in the future.

        Best wishes,
        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


        • #5
          Originally posted by progers
          First, I wanted to say that there are many of us here will be there for you when you need us. Second, I know you have problems with a-fib, but why does Dr Maron think you are in 'burnout stage'? How does he know that you will ultimately need a transplant? I'm not saying he is wrong but it seems a little out of left field to me, especially if your 'numbers' are not that bad.
          Can I also ask why and how they can know that you have fibrosis of your ventricles? Can echos detect this?
          Thanks for responding, Paul! Lisa covered some of this already, so I'll expand a little on what she said. I wrote my original post late last night when I was tired, and I should have detailed more.

          The fibrosis, as Lisa pointed out, was detected by MRI. Dr. Maron told me on my previous appointment that he has only been using MRI on patients for the past two years. Previously it was a diagnostic tool that had not been used for HCM patients. I can't address what he's found during that time, but I imagine at some point we'll all hear something about it. When I say "this all came out of left field," I'm being specific to the fibrosis. I knew I became more symptomatic with HCM in January '03, but believe me, the possibility of a heart transplant was the last thing I would have expected to hear, especially considering how rare it is for HCM patients.

          Right now, as I understand it, the pumping capacity of my heart is diminishing. The purpose of my visit yesterday was to verify and quantify this through three different procedures: MRI, MUGA scan, and echo. With regard to the MRI, Maron told me that there was a measurable difference between yesterday's results and the results from the MRI I had a few months ago.

          Hope that clears up a few things for you.

          -- T.
          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


          • #6
            Originally posted by Lisa Inman
            Tim, what a shock this must be to digest and figure out. It is hard to know how to reply--I am so sorry for the bad news, yet I guess we need to be glad that if this is the case you have the expert information. For right now, I am holding you in my thoughts and wishing you well as you process the first round of this information and decide what to do and learn more. I'm sending very positive best wishes for you, Lisa Inman
            I appreciate that, Lisa. I'm going to go a bit "woe is me" right now and say this news couldn't have come at a worse time. My mother passed away on 6/6, so I've had all the feelings surrounding that to deal with as well. In an odd sort of way, I'm almost glad she's not here to share in this news because she worried so much about me.

            Knowing what has been going on with me, Maron and his staff were so apologetic for dropping this bomb on me, but as I pointed out to them, there is no good time for bad news and I might as well know now what's going on.

            -- T.
            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


            • #7
              Originally posted by Lisa Salberg
              Kelly and I were happy to see you - albeit for only a short time. To answer a question re: how can you see fibrosis - it is only with an MRI can we see this and I will have to assume that Tim has had an MRI.
              Heh...how'd the pictures turn out?

              Yep, I had an MRI a few months ago and one yesterday. It was a long day for me with that and the MUGA and the waiting. I didn't get out of there until 5:30.

              As for your heart, I did get a very good look at yours on the echo. I could see that the wall motion was not what it should be and that your EF was likely going to be low.
              I don't have an exact number, but I believe it was in the 40s. The tech doing the echo explained the meaning a bit to me. I think she said 60 was normal.

              It was not my place to say anything in the room and I actually would have rather stayed around to talk to you after you had finished with Dr. Maron, but had an appointment down at Mayo to get to so we had to run.
              Not a problem. I would have liked to have talked more, and I had considered asking you to sit in on the consultation for the simple reason that I take horrible notes, and my hubby couldn't be there.

              Your mitral valve is really rather unique I have never seen anything like it, nor had Dr. Maron.
              Oh, it was the talk of my first visit! As I mentioned in the exam room, when I had the emergency episode back in November '03, when I was vacationing in Napa, the doctors originally thought it was ruptured, but after more consideration and examination, they realized it wasn't.

              I am sorry you had such difficult news given to you and it is my hope that the HCMA will be here to help you in any way we can in the future.
              I appreciate that. Like I've been saying, this possibility hasn't even been in my realm of thought for the entire time I've known I had HCM, so to say it's a shock now is sort of an understatement.

              -- T.
              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


              • #8
                Tim,

                I'm really sorry to hear that your mom passed away recently. It couldn't come at a worse time, though as you say there is no good time for bad news. I hope you have some good, caring people to support you right now.

                Take care,

                Paul
                Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

                Comment


                • #9
                  Tim, I know how it feels to get that news. At this point it is hard to except. The good news is there is hope. Your heart like mine had sounds like it is very stiff and just does not contract as it should. That is why your increase of symptoms. I was obstructed and had a myectomy 20 years before my transplant my EF was not a bad # but with the stiffness of the whole heart it makes no difference. I can tell you life is better for me post transplant. Take time though to take a deep breath and adjust to all of this news. I am sorry to hear about your mother. If there is anything I can do let me know. Please know you are in my thoughts.
                  Midge

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

                  Comment


                  • #10
                    Tim,

                    I am shocked to hear of the news you recieved. My belief is that your mother is in a place now where she can look over you and give you more strength now when you need it. You have been through so much and I am sure your head is just spinning. It sounds as though you are getting the best info (care) that is out there. Keep your chin up as best you can, and you know you can always PM me with some venting when needed. Take care of yourself buddy!

                    John
                    41 years old. Diagnosed with HOCM in Feb 2005. Myectomy at Mayo on June 8, 2005

                    Comment


                    • #11
                      Tim

                      I have mixed emotions for you right now, first i'm so sorry about your mom, i lost mine too it will be 20 years the 28th of this month as far as the transplant know we are all here for you and you can ask all the questions you like

                      Like you i saw Dr. Maron and he believes the only thing left for me is a transplant now here in va.My heart is also very stiff i have to wait on my V02 to drop or rather the Oxygen in my blood stream to drop and then they said they would put me on the list Good Luck and take it all one day at a time, it does get frustrating and remember to ask alot of questions

                      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


                      • #12
                        Tim, just know I'm thinking of you. Will write more later.

                        Reenie
                        Reenie

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

                        Comment


                        • #13
                          Tim

                          I know it's a very difficult time for. But I hope you know that we are all here for you.


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

                          Comment


                          • #14
                            Tim looks like we are in this together. I guess mine wasn't as much of a suprise as yours! It was said to me at day one I might need a transplant. I just never figured it would be so soon. I'm not sure if I have stiff ventricles or not. I've never had an MRI. And can't due to the AICD. My echo numbers are not that bad either. But, I don't know how much is due to me being paced 100%.

                            Are there any other test at all to see if the ventricals are stiff or have fibrosis? I'm just curious.

                            I'm going to assume that I didn't do all that good on the v02 if Dr. M. Maron is still pushing the transplant route. He's is the one that did the test. But, I am going to e-mail him and ask. I think I've called him enough this week like four times.

                            And yes Tim I have to keep humor though all of this too. My roommate suggest we build an Incan Temple and start holding scarifices like in Indiana Jones! He said then we will get ya a great heart! It was so bad but sooo funny. So, I hope you got someone to keep you laughing too through all of this!

                            If you need to talk you got my AIM, and I think e-mail. Of course I can see us fighting over a heart. NO its mine!

                            Best to you!

                            Mary S.

                            Comment


                            • #15
                              Tim,

                              I think I'm as shocked as you are. We've chatted about your situation in the past, and you've always felt that your symptoms aren't that bad, no obstruction, no need for a myectomy, etc. I can't tell you how sorry I am that you got smacked in the face with this kind of news right now. Please accept my condolences on the loss of your mom. If there is anything at all I can do to help, even if just to chat, please don't hesitate to ask.

                              Take care,

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

                              Comment

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