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I am constantly “haunted” by my granddaughter’s Neuroblastoma battle .
I had been diagnosed with a genetic disorder, Severe Mitral Valve Prolapse, approximately 25 years ago. Having been asymptomatic until recently, I chose to avoid further testing and/or follow-up procedures. (I worked as an architect while raising tree children as well as three grandchildren.)
When my youngest granddaughter, Amelia, was diagnosed with stage 4 metastatic Neuroblastoma and OMS in 2019, I put my health “on hold “, caring for her through three years of surgery, chemotherapy, radiation, immunotherapy as well as a multitude of other therapies at Comer Children’s Hospital in Chicago, Illinois.
Amelia has been in remission during the past year and asked me to “please take care of your heart, Grandma and I will teach you how to be brave and strong.”
It was then that I decided to do a follow-up with a Stress Test, CT scan, angiogram, as well as other required tests only to hear that I have “Extreme Mitral Regulation” which is a complication of Marlow’s Disease.
Upon going through many obstacles, I finally had the opportunity to meet with Dr. Abdallah El Sabbagh and discuss Mitral Valve Repair rather than replacement. He explained everything in great detail and I am excited to proceed with this procedure as soon as possible!
Despite the fact that everyone I had spoken with, lay and professional, insisted I have open heart surgery, I knew this was not a procedure I wished to proceed with at this juncture.
My intuitive nature had always saved me and my loved ones from making choices which may have resulted in mortal outcomes and I am confident that, once again, I have made the best decision for myself.
I have complete confidence in Dr. El Sabbagh and the Mayo Clinic team in Jacksonville, Florida!
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Hi @dianadobosz, welcome to Mayo Clinic Connect. You may notice I also listed your discussion in the Heart & Blood Health support group so other members who have discussed mitral valve replacement or repair can join the discussion to share their experiences as well. @bgl1, @afibjan, @hunby2blas, and @saganjames have all discussed having a mitral valve repair done and may be able to share their experiences.
@dianadobosz, it sounds like you have been through a lot with your granddaughter and her fight with neuroblastoma. She sounds like quite the fighter and I am sure her encouragement for you to seek help for your health issues had to really hit home. While our guidelines don't allow sharing of gofundme or fundraisers, your support of your granddaughter jumps off the screen.
@dianadobosz, It sounds like you were able to discuss your concerns with your doctor and find the treatment that is best for you. If you are comfortable sharing, were the benefits and risks of not opting for a more major surgery discussed?
Thank you, Justin, for including me in the Heart & Blood Health support group. I’m looking forward to sharing my experiences with other members who’ve gone through or are currently living with heart valve issues!
Dr. El Sabbagh discussed in great detail the risks and benefits of valve repair vs replacement and I am confident this will be the best procedure for me!
I have benign hypertension very well controlled with two small doses of medication but my cardiologist is at a large teaching hospital and happens to be expert in non invasive heart valve replacement/repair. I would absolutely trust him to do that should I require it. You're very fortunate to have found someone like that and I think you'll be just fine. My Aunt had a "finger in" to attempt to repair a heart valve disorder acquired from scarlet fever (she was 65 at the time and this was 50 years ago), she did fine and that WAS open heart surgery in its infancy. Much luck.