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.

Finally Listed!

Collapse

About the Author

Collapse

maztbo grew up in boston,but live on the cape now with my wife and three teenagers
maztbo
Major Contributor
Find out more about maztbo
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Finally Listed!

    Well after doing 6 months penance to a UNOS protocal, I got a phone call this morning from the transplant coordinator at Tufts telling me that I was accepted to receive a heart transplant by UNOS, being listed for now as a class II.The Drs. have told me long ago I'll never get transplanted from home (as a classII), and if things keep going at the rate they've been going, I probably won't be a class II long.Spent 4 days last week at Tufts getting IV lasix,that didn't do much of anything,but they did get to do another right heart cath.which makes the third since Nov.and 24 days as a guest there.My sob is almost constant, I'm 'spaced out' from any activity at all,and more increased symptoms than I want to bore anyone about,but I plod through
    life and try to contribute to the mundane things that need to be done. Since I found HCMA a year ago, so many negitive things, and deaths have happened in my life, and I don't think that I could of kept it together without some of the compassion from the 'board' and especially from a few of the very personal friendships I've made here. Thanks again for listening and being 'there' HCMA.

    There is power in prayer. 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

  • #2
    Re: Finally Listed!

    John -

    Your email this morning was the best medicine I could think of - put all my aches, pains and stresses in the background and was ready to go out and run the marathon (OK, a 5-inch marathon). I could not be happier for you, Susan and the kids - life is going to be wonderful for you and your family.

    Tell the doctors to put a rush on it now because I really don't want to come up to Boston in the snow - and you know there is no way I am not coming.

    Love you, John.

    Comment


    • #3
      Re: Finally Listed!

      John,
      This is a huge hurdle to overcome. Congratulations. Transplants are no walk in the park, but you will have the opportunity to continue to show people what you're made of. I hope your wait is not too long. Again, congratulations.
      L
      Onward and Upward !

      Diagnosed 4/07 HCM with fixed & dynamic obstruction
      Myectomy with resected cordonae tendonae 4/08 CCF
      ICD 10/08

      Comment


      • #4
        Re: Finally Listed!

        Praise the Lord! It has been a long process, I am glad to see you are making progress.

        Carol
        Luke 1:37 For with God nothing shall be impossible!
        ***
        2004 Diagnosed with HCM
        2010 Extended Septal Myectomy, Mayo Clinic with Dr. Dearani on 9/23/10
        2011 5 of 8 children tested and found negative
        2012 Hypothyroidism secondary to Thyroid ablation
        2013 A-Fib
        2013 Inconclusive genetic testing
        2013 April Fool's Day found me getting an ICD!!!
        2013 Second Myectomy with papillary muscle resection and tricuspid valve repair, Mayo Clinic with Dr. Dearani on 10/11/13

        Comment


        • #5
          Re: Finally Listed!

          Thats so great too here , i hope a heart comes for you soon

          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


          • #6
            Re: Finally Listed!

            That is wonderful news John! I will be praying for you!

            Comment


            • #7
              Re: Finally Listed!

              John, I feel your excitement. I am so happy for you and your family. Let me know if I can help in any way.
              Midge

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

              Comment


              • #8
                Re: Finally Listed!

                That's great! Here's hoping the wait is a short one.

                Gordon
                Myectomy on Feb. 5, 2007.

                Comment


                • #9
                  Re: Finally Listed!

                  This is great news!

                  I hope, and I will pray that your wait is short.
                  49 yrs. old
                  Diagnosed at 31.
                  Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                  First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                  Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                  Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                  My brother passed away suddenly at 34 yrs old from HCM.
                  2 teenage children, ages 17 and 15.

                  Comment


                  • #10
                    Re: Finally Listed!

                    John -For a guy who's gone the distance in such a short time (DX, research, acceptance, research, surgery, now listed) I applaud you for your courage, tenacity and general attitude. I wish you best on this new road. It'll be a rough road, but you're tough.
                    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


                    • #11
                      Re: Finally Listed!

                      John - so happy for your news - will be keeping you and your family in prayers.

                      Linda

                      Comment


                      • #12
                        Re: Finally Listed!

                        This is wonderful news! I hope your wait is not too long, and that you will get your new heart and have a long and full life! I know what a gift it can be be, as do the others on this board. Best to you.

                        Comment


                        • #13
                          Re: Finally Listed!

                          John, this is such great news and I also hope the wait is short and you will soon be writing to us of your recovery.
                          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


                          • #14
                            Re: Finally Listed!

                            John - I'm also so happy for this news for you! Wishing you a short wait and much success. Followed prev posts of yours and you seem to have the balance of mind needed. Will keep you in thoughts and prayers. Jlaurie

                            Comment


                            • #15
                              Re: Finally Listed!

                              Glad you back on the list! Keep a positive attitude my friend... we are here for you!
                              By the way... I am very glad that we are here too... knowing there is a place to go where you can talk.. vent.. and find friends who "get it" is really something when ya stop and think about it!
                              Best wishes for some good news soon.
                              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

                              Today's Birthdays

                              Collapse

                              Working...
                              X