Thank you for the warm welcome....

I have never done this before so I hope I am posting correctly. Thank you for the warm welcome. Yes my daughter is now 20 and we have what we believe to be the best Drs since she is still alive. We really lived from the time she was 10, until that first heart rejected, when she was 17, in Complete denial. We took her to her appointments, administered her meds and pretended we were a normal family, determined to give this kid a normal life. Well, the last 3 years have been a horror, 3 more transplants totaling 4 in less then one year, mostly in the hospital for the last 3 yrs. they can't seem to keep her out of rejection. Her immune system is extremely strong. This is killing us slowly since she is our world and we want to see this kid LIVE life. She's been in comas, on ventilators, balloon pumps, LVADs, oh the list goes on, all just to keep her alive. We just don't know what to do anymore. No one can figure out why she keeps rejecting. Cellular rejection and antibody rejection over the years and she continues to beat the odds cause this kid is so strong. But now, I'm more worried then ever. They can't keep her out of rejection and have seemingly conferred with Drs all over the country and this heart has grown weak. We are waiting for her to come from her weekly biopsy now. I was googling to see if I could find another person alive with a 4th heart transplant because I am growing tired of hearing them tell us they are in Unchartered territory. I think we need some help.

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  • I will be sure to keep both you and your daughter in my thoughts and prayers. May you find daily the strength and hope you need to make it through this difficult time. Just know that you can always find support here in this community. May your daughter's doctors be given the wisdom they need to know what best to do for your daughter. May God bless you and carry you through. Many, many hugs.

    • Thank you. Hugs back. They told us yesterday that NO ONE had any idea why this is happening or what they can do to fix it.
  • Your daughter is a fighter Sue. Im praying for her to be well. Pray... Hope... and Dont Worry... God is merciful and will hear your prayers. Trust in him.

    • Yes she is. Thank you
  • Sue, you and daughter have gone through alot, is a second opinion an option?. I'm thinking maybe your docs. would give a referral to the Cleveland Clinic in Ohio , or forward records for review. This is #1 ranked hospital in cardiology in the U.S. You can check out their website at Cleveland Clinic.org  Good Luck to you !

    • I will do that tomorrow . Thanks for the input. Her Drs confer with people across the country every day looking for their opinions and help. Today we were told NO ONE they've contacted has any idea why this is only happening to her. We have no answers. I will try anything. We spend tonight searching options on the Internet again. There isn't too much out there. Luckily most people with heart transplants do well so we don't have much data to compare. It always seems to be only my daughter to has these odd complications and a 5th transplant will not be an option.
  • Found this for you Sue....

    Activist Recovering After 4th Heart Transplant

    Medicine: Otto Stoll, 51, who suffers from a disease that causes rejection of the organ, is recuperating as well as can be expected, a friend says.

    March 31, 1998|KATE FOLMAR | TIMES STAFF WRITER
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    THOUSAND OAKS — Citizen activist Otto G. Stoll was recovering Monday at UCLA Medical Center after his fourth heart transplant.

    Stoll suffers from transplant coronary artery disease--a progressive terminal illness--which weakens transplanted hearts over time until they fail.

    The 51-year-old's strong immune system essentially starts a low-grade rejection of each transplant as soon as he receives it, explained Santa Barbara cardiologist Joe Ilvento, who has treated Stoll for more than a decade.

    • Thank you for looking Rita but I found that awhile ago...I also found his obituary from 2 mos later in May of that same year. I googled him to try and contact him. Unfortunately he didn't make it. But thanks for trying. I appreciate the help.
      • I am sorry, I did know that. I have not walked in your shoes but you are an amazing mom. Hope and support is what carry us through the difficult times, so I am sending you hugs and support. 

        • Thank you. We are trying
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