If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Newly Listed

Collapse

About the Author

Collapse

MelliJ
MelliJ
Shy Heart
Find out more about MelliJ
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Newly Listed

    Hello - this is my first post on this particular board, though I've posted here before in other sections, about my husband, Evan. He had his first bout of CHF in July 2009, and received an upgraded ICD with pacemaker. Things were stable until early this year, when, after a few bad bouts of bronchitis, he developed CHF again in March. Due to the complication of the bronchitis cough, we didn't catch the CHF early enough, so he spent 6 days in the hospital earlier this month being evaluated for a transplant. He reached the burnt out stage of HCM in 2009, but did worsen significantly earlier this year. He was officially listed as a 1b last week, and is currently on IV milrinone. He is technically inactive right now because his lung pressures are still too high, but we are hopeful that after his next right heart cath (early August), he can active on the list.

    I thought this was an appropriate time to post an update about him and reach out a bit to people who have already gone through this or are going through it now. I've been following this board for almost two years now, and it's very inspiring to see so many people who are successfully getting through this. Evan isn't too good about reading online - it upsets him quite a bit, as he's still dealing with facing a heart tranplant, but for me, the best coping mechanism I have is information. So, this board is a lifesaver for me.

    I just wanted to post the update and thank everyone for sharing their journeys on here.

    Best Regards,

    Melanie

  • #2
    Re: Newly Listed

    Melanie - thank you for keeping us up to date. Everyone deals differently - I'm glad we are here to help you thru and in turn, that helps Evan. We will be watching for updates.

    Wishing you and your family the best as you move forward thru this next great step --

    Linda

    Comment


    • #3
      Re: Newly Listed

      Melanie, I hope the Milrinone helps him. I did so great on it for the 3 months I was on it. Having the Milrinone also makes him a little higher on the list. I am 7 years out and my heart is doing great. Feel free to IM me with questions.
      Midge

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

      Comment


      • #4
        Re: Newly Listed

        Melanie - Wishing you & Evan the best as you adapt to these new circumstances. One thing with HCM, its never a dull road.
        Marc
        Diagnosed @ 48
        Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
        Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
        AICD - Valentines Day '08, Spark Plug replaced 11/14
        After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
        Quietly going insane . . .

        Comment


        • #5
          Re: Newly Listed

          Hi Melanie & Evan, just got listed last week too (see Finally Listed!) would've been listed last Dec. but I wasn't in compliance with a UNOS protocal so I've had to wait 6 months,so that wait is over and a new one has begun.Starting the evaluation process last November I spent some time in the Cardio Myopothy unit up in Tufts that is solely dedicated to pre and post transplant patients, and got to meet and befriend some pre trans.people there and have followed their journeys, some waiting an excruciatingly long time on LVADs. It's a small communitiy out there of people like us, so any time you get to interact or communicate with anyone going through your same situation grab the oppertunity.
          Myself, I'm still having some difficulty wraping my head around this whole need to be transplanted, it's no brainer that I want to continue to live, (any day above ground is a good day!)but there are personal moral and spiritual issues I have in accepting this situation of needing someone else's demise for my own continuation in life. I wish I could be purely clinical and sterile in this approch that there's a heart available and that I need it and it be the donor (or family's) wish to donate,but I still think of the emotional severity of some family's loss.
          I'm coming to terms with this and other issues with the support and examples that I'm getting from people here who have gone through this whole process from the devastating diagnoses through the post transplant. Anyway you look at it's a scary and daunting process and I'm terrified but I'll get through it, (God willing)my family needs me and I enjoy being alive,and you will too, Evan. PM me if you want to.

          Take care, John F
          had HCM since birth
          'enlarged heart' identified in 96'
          HOCM dx in 7/08
          Myectomy 8/09
          extended Myectomy 5/10
          'End stage' HCM dx 8/10
          CRT-D implanted 9/10
          evaluated for Transplant 11/10
          Listed for transplant 6/11

          Comment


          • #6
            Re: Newly Listed

            John, Melanie and Evan, I had about 20 people at my house Sat. The majority of them had had an organ transplant, there was a living kidney donor and a donor mom. Needless to say she is an awesome lady to make that decision in their time of grief. Here is how she explained it. "Sarah lived. She died of a brain aneurysm. She was an organ donor. She saved other peoples lives. She lives on and it helps to know that her death helped so many others. God Bless all organ donors. I hope this helps, I as most recipients struggled with the survivor guilt. I have not met any donor families that are not grateful that their loved ones have helped save others. I will be seeing my donor family in about a week, we cry as we embrace but then we have great talks and share family stories. They are like an extended family. Please if there is a transplant support group near you GO. Everytime I have an appt at Mayo I try to go on Monday so I can go to group. 7 years later it really helps. By the way. There were 2 other heart recipients at my house one out 13 years and one out 22. Take care and I hope your waits are not long.
            Midge

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

            Comment


            • #7
              Re: Newly Listed

              Melanie , good luck with ever think and i hope his wait is short ,
              i had a heart transplant 2 and a bit years ago when i was 21 best think that ever happened to me i would do it again in a heart beat

              Margi
              Margi*
              http://margi-inskeep.blogspot.com
              Forever Young

              I was diagnosedwith HCM at 6.
              Went into Atrial fibrillation so had a ICD put in at 16
              Went into Heart failure at 17
              Got a heart transplant at 21(2009)

              Comment

              Today's Birthdays

              Collapse

              Working...
              X