Andrea's Esophageal Valvoplasty fund
It is with a heavy heart and great humility that we come here to reach out for help. We are asking for even the smallest contribution for which we will be very grateful. I'm 43 and I'm facing a life-changing surgery soon. Our 7 children and my best friend/husband of 25 years are excited to see their mom and wife get the chance to regain a normal life after suffering from two failed acid reflux surgeries. We are all tired of hospitals.
I have suffered from GERD for 25 years. The symptoms began happening while we were expecting our first child. I developed a hiatal hernia at that time. Over the years it's become harder and harder to manage the symptoms. I have also found I have a very bad reaction to PPIs and H2 blockers. In 2015 I was told I needed surgery or I would more than likely develop cancer. We agreed to undergo a Nissen Fundoplication in 2016 by a very skilled surgeon. However, the surgery began failing within months of having it done and completely failed 8 months in. In 2017 we then had it redone almost a year later, with a few modifications to help anchor things down. The second one fully failed in a matter of 2 months leaving me with a slipped Nissen wrap and another hiatal hernia. In my search to try and understand why my body couldn't hold the wraps, I was diagnosed with a genetic condition called Hypermobility Ehlers-Danlos Syndrome. It's a connective tissue disorder where my body makes faulty collagen. It affects my joints, skin, tissues, ligaments, and tendons and really any part of your body that uses collagen. I have had a lot of medical issues my entire life and this helps explain the problems I've had. With this new information, we have spent the next 2+ years researching my condition and trying to figure out my best options to fix these failed surgeries.
I have been diagnosed and am fighting with many medical issues related to the failure of the fundoplication which includes gastroparesis (Partial stomach paralysis. It can take around 9 hours for me to digest a small meal), GERD, another hiatal hernia, Problem absorbing the needed nutrition, chronic SIBO (Small Intestine Bacterial Overgrowth), daily nausea, stomach and chest pain, dysphagia, and more. My food options are very limited as I can't tolerate most foods with fiber. It sits in my stomach and ferments for hours causing a bacterial overgrowth. I have to take antibiotics throughout the day to keep the bacteria in check. My health continues to go downhill but I chose to stay positive and fight for some kind of normal life each day.
We have used up all of our in-network options with our insurance trying to find help. Most doctors I've spoken with are apprehensive working on someone with a connective tissue disorder like mine with my medical history. They understand my daily struggles but refuse their services because it's out of their comfort zone. I truly appreciate their honesty and would rather that someone with more knowledge and experience in this area do the job right. We have still not found anyone local who will help without wanting to perform other irreversible procedures that will cause more damage and leave me needing more medical care. The last surgeon we met with here at home wants to section (cut) both vagus nerves, give me another wrap, regardless of my history with both failures, perform a pyloroplasty even though I show no reasons for needing one, maybe even perform a bypass and put in a g-tube if he feels it's necessary and more. We feel that's quite extream when all we're asking for is the surgery to be reversed.
We have found a skilled, knowledgable Thoracic Surgeon that can not only do the takedown but help with the GERD. He is out of network so our insurance refuses to pay for him even after many appeals. He is located across the country and has agreed to help us. It's a surgery that will need to be done by thoracotomy through the side of my chest because of the scar tissue left behind from the previous two robotic surgeries. It will also give the Doctor the best view of what needs to be repaired. The doctor will perform a full takedown and remove any scar tissue and adhesions. Last redo surgery in 2017 the doctor found my stomach had fused to my liver and a lung. With the hiatal hernia returned it's a possibility again. He will place my stomach back where it originally was, fix the hiatal hernia and create a new stomach valve to help control, if not cure, the GERD. A procedure called an Esophageal Valvoplasty, a Modified Version of the Belsey Mark IV procedure.
The cash pay cost of the surgery has been estimated to be upwards of over $100,000 on top of the travel expenses and living accommodations in Florida. If by some miracle our insurance decides to overturn their decision and cover the out of network doctor and facility we will gladly refund what funds have been donated but we simply can't wait much longer as my health continues to decline. We have another appointment on April 2nd for another consult in Florida and can schedule the exact surgery date after that. We were told it would be around 3 weeks so that will be the end of April or beginning of May.
On behalf of our family, we thank you for taking the time to read this and consider our situation. God bless.