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About Me
HeartMama
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About Me
Mother of a heart transplant baby boy and a vibrant 6 yr old girl. My son, Brody, was recently diagnosed with complex V mitochondrial disorder. His mutation was on ATPase 6 & 8. This is maternally inherited, so my daughter and I are waiting to be tested to see if we are affected. I worked as an OB nurse for a year. Since then, I have stayed home to care for my children. His website is www.caringbridge.org/visit/brodytucker
Mother of a heart transplant baby boy and a vibrant 6 yr old girl. My son, Brody, was recently diagnosed with complex V mitochondrial disorder. His mutation was on ATPase 6 & 8. This is maternally inherited, so my daughter and I are waiting to be tested to see if we are affected. I worked as an OB nurse for a year. Since then, I have stayed home to care for my children. His website is www.caringbridge.org/visit/brodytucker
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Hugbook
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Just wanted to let you know that on 11-26 at 11-24 AM, Kylie Marie made her appearance in this world. She's doing pretty well and the !st heart surgery is scheduled for Monday
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Blessings on you and your family. May you have a wonderful Thanksgiving
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Blessings to you honey, you and Brodie are in my thoughts and prayers. Give me a holler if there is anything I can do to help you also
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Thanks for all the support and info
Prayer
MY PRAYERS ARE WITH YOU AND YOUR BABY ON YOUR JOURNEY WITH THIS MITO DISORDER. I TOO SUFFER WITH THIS ILLNESS AND OFFER MY SUPPORT AND PRAYERS. MCJ
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Support Groups
Close Congenital Heart Disease
Type: CardiomyopathyI'm a mother of a heart transplant baby boy. He was born with HCM which progressed very quickly. He recieved his heart trasnplant at 3 months of age on August 1, 2007. We are almost 7 months post-transplant. We are slowly adjusting to post-transplant life. I also have a 5 yr old daughter with excellent health.
Close Organ Transplants
Types: HeartI'm a mother of a heart transplant baby boy. He was born with HCM which progressed very quickly. He recieved his heart trasnplant at 3 months of age on August 1, 2007. We are almost 7 months post-transplant. We are slowly adjusting to post-transplant life. I also have a 5 yr old daughter with excellent health.
Treatments
- Azathioprine Working / Worked
- Definitely lost his hair! It seemed to work, but docs told us that after one rejection episodes, we have to switch from imuran to cellcept
- Cellcept Working / Worked
- We just started cellcept since my son had a rejction episode. He was on imuran, but now we've switched to cellcept. Seems to be working. I'm sure the GI side effects worsen his appetite.
- Prograf Working / Worked
- Working. We are told we will always be on prograf. We had a low level once, and I think that's when he started going into rejection. I think it works. The only reason why his level was low was b/c he kept spitting up his meds. GI side effects worsen his appetite.
Open Premature Birth
I'm a mother of a heart transplant baby boy. He was born with HCM which progressed very quickly. He recieved his heart trasnplant at 3 months of age on August 1, 2007. We are almost 7 months post-transplant. He was born at 34 weeks gestation. I also have a 5 yr old daughter with excellent health.
Open Mitochondrial Diseases
My son, Brody, was just diagnosed with complex III mito disorder. The docs are still testing specific genes within that disorder. Also, they are checking if it is mDNA or nDNA oriented. He has already received a heart transplant at 3 months of age. At that time he was negative for all genetic disorders they tested. He now has some involvement with his muscles and liver. We are hoping to find a center to take him as a liver transplant candidate.
Treatments
- CoEnzyme Q Working / Worked
- Carnitine Working / Worked
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