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Kids / tubes tied


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  • Kids / tubes tied

    Hey hows everyone going ?

    Im doing really good , health's good jobs good and iv now lost 18kg and all is good my world .

    I been thinking about getting my tubes tied latly.
    One been iv always said i dont wont kids as long i carrie a risk of passing on the HCM gene to my kids i know its only 50/50 but after everythink i went though as a child and before transplant i dont think i could take the risk at all and
    Two been now that iv had a transplant having kids would be even harder, here in NZ iv been told its only been done once where a women who had a heart transplant had kids, my docctor told me if i was to ever had kids in furure my drugs would have to be lowed and that would put me at risk as well as the baby and on top of that i would have to be staying in Auckland the wole time i carring ,they dont like us who have had heart transplant to have kids .

    My question is because i know NZ is a small place and behind in alot of mebical stuff,has there been lots of succes story over seas of people having kids after transplant ? and my other question, in the furture(my life time) are they likly to be able to do somethink to stop the HCM gene been passed on ?
    And to those of you who have had kids did the HCM ever crross you mind before you had them ? you thoughts ?
    Was just wondring peoples opinions on getting my tudes tided ?
    my mother keeps telling me it will be diffent when im older im too young to make a choice like that ?but as my doctor has said iv got pretty good mebical reasons for it .

    Iv pretty sure this is what i wont to do and my doctor sounds like i shound be able to get it done ever thats im so young under medical reasons they should let me and my doctor doesent wont me having kids anywa, shes finding out for me and going to get back to me if they will let me get it done or not, but as im so young i dont wont to make the wrong choice if its somethink in the furture i will regrat doing right now im 100% sure i wont it .

    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)

  • #2
    Re: Kids / tubes tied

    There are now ways of doing in vitro fertization to avoid passing on the HCM gene if the gene has been identified. It is expensive, and may have certain risks to the embryo.

    I cannot speak to the risks of having a child following a heart transplant or how often it has been done. Have you tried googling "pregnancy" and "heart transplant" together to see what comes up?
    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.


    • #3
      Re: Kids / tubes tied

      I know here in the States they don't perform tubal ligation in failrly young women unless there is a compelling reason. Seems you do have 2 pretty good reasons, but I think its a bit drastic. Why not wait a while and see if your heart tells you otherwise. Who knows - 2years form now you may meet a great guy & having a family may seem worth it. I agree with Cynthia - Selective In Vitro is an option.
      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 . . .


      • #4
        Re: Kids / tubes tied

        Hi Margi,
        Glad to hear you're doing so great,can't add much to what Cynthia and Marc have said,but there is a online support group of just people that have been trasplanted , visit 'transplantbuddies.org' there should be some people there that can give you their experiances or advice

        Last edited by maztbo; 09-20-2012, 02:37 PM.
        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


        • #5
          Re: Kids / tubes tied

          Hey Margi,

          It is absolutely great news your life has been really good. You have been through so much, it is about time a bit of good comes your way. I am so thoroughly jealous of your weight loss, 18kg is nearly 40 pounds, fantastic!

          To put my two cents in, I feel everyone's recommendation of waiting to make such a big decision and looking into what other heart transplant patients have done first makes a lot of sense. Please take your time and I know you don't want to hear this, but you are so young. Life has so many twists and turns and maybe there is a good twist just waiting for a special person like you!!! I don't know your views or moral values on birth control, but if you are currently stressed out or afraid of becoming pregnant before you make your final decision, you always have non-surgical options to protect yourself from pregnancy. Just make sure nothing interferes with your medications.

          Be well, Janet
          Believe in the goodness of mankind.


          • #6
            Re: Kids / tubes tied

            I have had all of the procedures that can be had for HCM, and now am awaiting transplant. One of the first things that I did when I got to a quality HCM center, was to have genetic testing done. I also had my 3 children tested. As it turns out, only 1 of my 3 children were passed the gene that causes the disease. 2 of my children are never going to have to worry about developing, or their children developing HCM. Once the gene is identified in the carrier, it is 95% easier to find that gene in your offspring.

            With today's medicine, you could have yourself tested for the gene that is mutated in your own body, you will be able to have your unborn children tested in their first trimester of pregnancy. I don't know where you stand morally, but ending the pregnancy of a fetus with the gene is an option for you. It's not for everyone, because it's basically ending a life. You know what you had to go through as a young girl, but it would be terrible for you to never have known the great joys of parenthood, and all that come with it.

            I am just suggesting a scenario that may allow you to continue your life as a "normal" person, living life with all of the joys that come with it. Having children is one of the greatest things that you can experience. A simple blood test could tell you whether or not your unborn baby was a viable life, and healthy, without the worry's of having "sudden death syndrome"

            Good luck.


            • #7
              Re: Kids / tubes tied


              They will tie your tubes. I needed an ovarian cyst removed and my OBGYN brought it up to me as I had not thought about doing it until then. He said that since I was so high risk with my genetic heart condition and with how bad it was in 2007 that he thought I should consider it and he would be happy to do it while he was taking care of the ovarian cyst. I was 27 at the time.