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heather Find out more about heather
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  • I'm listed!

    I wanted to let everyone know that I am officially listed for a heart transplant, status 1b. So, I am waiting at home. I was just listed on Thursday and it took a little while due to the drs. being unsure about my lung pressures being too high. I saw the dr. for the first time in June and he was like "ya, no problem. you should be easy to get on the list." So, I made an apt in July for a week of testing. They sent me home on Milrinone.and I had an echo in August that showed my pressures had dropped 15 pts. So, my dr. started me on Sildenafil 20mg/3 times a day. I started feeling really bad, SOB, my ankles were swelling, which I have all my swelling in my stomach, dizzy, just off! So, my dr. had me come back to Dallas for another right heart cath. It showed very little change in the pressures.. I was so upset. I just knew they were going to tell me to go home and spend the time I had left. They tried a Nipride drip and within an hour my lung pressures had dropped to normal. So, Thursday, my dr. came in after their transplant committee mtg. which I didn't think they would talk about me until the next week, and he said "well congratulations, you're listed" and went on to explain that since the pressures responded so well to the iv of the nipride, that it would reverse with a new heart. So, to go home, pack a bag, and get ready! .He said 1b usually wait 2wks-month and with me being A+ blood type, it probably wouldn't be long. So that's the story for now! I'm excited but very nervous!

    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.

  • #2
    Congratulations Heather! This is probably a most wonderful yet scary experience to prepare yourself for a heart transplant! I'm sure there are forums like HCMA that you can get involved in that are specific for heart transplant and support you through the process.....but keep us posted too.

    A call out: Has anyone heard from John/Matzbo who was moving to Texas to get listed for transplant? Wherever you are John...Hope it is going well you have suffered a long time and now hopefully you are in a much shorter line for a new heart. Blessings .
    After years of symptoms:
    Officially Diagnosed HOCM 2006
    Myectomy 3/11/13 at non-COE
    Extended Myectomy 7/23/14
    At Mayo with Dr. Joseph Dearani

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    • #3
      Hi Heather,
      Here's hoping you get a new heart soon! I know it's been quite a haul for you!
      Gordon
      Myectomy on Feb. 5, 2007.

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      • #4
        Hope the time goes by quickly Heather. I know you will keep us posted.
        Onward and Upward !

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

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        • #5
          OMG, Heather! how wonderful! that's my blood type, AB+...the best you can have because it is a universal recipient!! Don't worry...you will be in great hands...I will say prayers for you!
          \"It is not length of life, but depth of life.\"

          Ralph Waldo Emerson

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          • #6
            P.S. Milrinone made me so sick..was so glad when that pic line was removed!!
            \"It is not length of life, but depth of life.\"

            Ralph Waldo Emerson

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            • #7
              Heather - I was on an extended vacation & missed the news. Congrats! hope your wait is a short one.
              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 . . .

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              • #8
                Congrats Heather Hope it happens sooner than later
                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

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                • #9
                  Just letting everyone know that Heather is in surgery right now getting her heart transplant. Please keep her in your thoughts and prayers.
                  Daughter of Father with HCM
                  Diagnosed with HCM 1999.
                  Full term pregnancy - Son born 11/01
                  ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                  Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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                  • #10
                    Thanks Cynthia.... Will be holding her and her family in the light. If you hear how she is doing please let us know......that was really quick to get a heart what center is she at?
                    After years of symptoms:
                    Officially Diagnosed HOCM 2006
                    Myectomy 3/11/13 at non-COE
                    Extended Myectomy 7/23/14
                    At Mayo with Dr. Joseph Dearani

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                    • #11
                      Heather continues to improve. She is now out of ICU and walking around the floor of her step down unit. She will probably be back posting here soon. She will have to stay in Dallas near Baylor for 3 months before she returns home.
                      Daughter of Father with HCM
                      Diagnosed with HCM 1999.
                      Full term pregnancy - Son born 11/01
                      ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                      Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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                      • #12
                        That's great news.Here's hoping she continues to improve.

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                        • #13
                          OMG!! that is fantastic! Sooo happy for you, Heather! you can email me anytime with any question or just to chat....wonderful! P.S. be patient...it is a ways to recovery completely. You will be feeling great!!
                          \"It is not length of life, but depth of life.\"

                          Ralph Waldo Emerson

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                          • #14
                            Heather - Hope things continue to improve. Looking forward to your posts as a non-HCM'r !
                            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 . . .

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