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.

Transplant Recommended

Collapse

About the Author

Collapse

Equestriansrock I am 25, married, and planning for the future. My family has a strong history of HCM and I just received my genetic testing results. Diagnosed at about 13 and had an ICD implanted 11/2013. We are looking into all of our available options to ensure future generations do not have to suffer from this disease. Find out more about Equestriansrock
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Transplant Recommended

    I had a follow up scheduled with a new (to me) doctor at John's Hopkins the other day due to a lack in follow up with my usual doctor there. I saw Dr. Judge who is a member of the transplant team and very familiar with HCM. During our visit he went over my last years VO2 stress test results with me which I had not previously seen. Apparently they are quite alarming. My VO2 max was 11 with good effort. The Dr informed me that based on these results and my physical symptoms and limitations that I would be eligible to join the transplant list. What a shock for me! Even though I have always felt bad I just assumed that they would let me keep plugging along like this until I ended up worse. He said there are no other appropriate treatment options available to me that would improve my condition. It was suggested that I could wait to list however the healthier I am the better the process would go... now comes the big problem. I want to have a child of my own. I was informed that pregnancy after receiving a transplant is highly discouraged. So now we have to decide if we want to wait to list and try for a baby or just forget the idea and start the process of listing. I know there is always adoption, but I feel strongly about having my own especially since I know their are options available to prevent me from passing on the gene. I realize I need to place a call to Lisa on Monday I'm just feeling very overwhelmed and upset right now. There are a lot of things to consider and it's causing me to just break down. I want to be better but I am very scared about what could happen.

  • #2
    Re: Transplant Recommended

    Gosh, so much on your plate.

    I will tell you that my own experience was that my heart got alot worse after pregnancy. So that is something to consider. You could possibly use a surrogate and have PGD done with a surrogate to avoid HCM and to spare the wear and tear on your body.
    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.

    Comment


    • #3
      Re: Transplant Recommended

      ???? I was never told this on asking my consultants (pre-transplant). I've known women to have transplants and go onto having children so don't give up all hope. Try and get a second opinion from another doctor, I know 1-2 years after surgery it's not advised of course for recovery. I'm guessing it's something related to the medications after the transplant that may affect the baby so the doctors would need to regulate that?
      Diagnosed with HCM @ 6 years old.
      Father & 2/5 sisters affected
      ICD Implant in 2011
      Evaluation for Transplant in process.

      Comment

      Today's Birthdays

      Collapse

      Working...
      X