Saving My Sister
Organized by: Spencer Caniglia
Saving My Sister
Her Journey with GERD- Gastroephageal Reflux Disease
******AT THE 3RD APPELLATE LEVEL, BCBS finally approved Taylor's surgery and it is scheduled for October 29th.
However, the fundraiser will go on as planned to help with her co-pays (likely five figures alone) for this upcoming surgery, and the significant unpaid bills outstanding for prior hospitalizations already incurred in 2013 and 2014, which total over $25,000. Even as we celebrate BCBS doing the right thing and paying for most of the surgery, Taylor has and will still continue to face significant medical bills, out-of-pocket costs and wage loss as she recovers from surgery.
We would love for you to come by our Spaghetti Feed, October 19th, and enjoy some of Jim Caniglia’s family pasta. If you can’t make it we totally understand.
In the meantime, I thank each and every one of you for your donations and prayers so that Taylor may move forward with her life. I hope to still see you all at the fundraiser. Now we can also CELEBRATE as Taylor prepares for the next stages of this long journey.******
Snowflakes falling down outside, slow and gentle, with an onyx sky draped over homes across Omaha, Nebraska. A winter’s dawn so peaceful you simply can’t forget it. Especially when your gasping for air, clinging tightly to every breath you can take. The brisk wind stifles your opportunity for another as a nervous father carries you out to the car.
The doctor’s office checks your blood oxygen level as your vision fades in and out. You hear some woman say “82%, this is an emergency, she needs to be taken to the hospital immediately.”
You don’t remember the car ride there, being instantly admitted to the hospital, or much of anything other than faint glimpses of many unfamiliar faces; the panic, the chaos all revolving around you, and three sharp words that stood out among all of the apprehensive voices.. “severe asthma attack.”
And so began Taylor’s seven year journey, being treated for severe asthma.
A once healthy and very fit girl, Taylor was a cheerleader all throughout high school. She also participated in various athletics including tumbling and track; hitting the gym every chance she got. After graduation she went on to be a radio broadcasting student at Iowa Western. With so many fans loving her voice, attitude, and bubbly personality she quickly became “Nicky-T” on 89.7 The River.
Unfortunately, her education came to a roaring halt as her health quickly took a downwards spiral. At 22, she was put on countless medications. One being Prednisone, a steroid that prevents the release of any substance in one’s body that could cause an inflammation. So the goal was to calm airway inflammation, giving Taylor better control of this asthma.
After 13 “asthma-caused” hospital visits in 4 years, it was rather clear Taylor did not gain any sort of control. Now, let’s note that Prednisone has a common side effect of weight gain for various reasons. It significantly increases appetite making it nearly uncontrollable, also on the steroid the body will retain more fluid causing water retention and swelling, and when you’re wrongly treated for so many years by a drug that causes you to gain this weight, while you’re just getting sicker day by day, it becomes very difficult to workout and stay active.
Taylor went from 150 pounds to 257 pounds in just five years time. That alone takes a toll on your body, as well as your self-esteem, but Taylor remained positive trusting that the doctors and medicine would keep her breathing easy. The number on a scale doesn’t matter to her. She knows how much more there is to life than just being “skinny.” Really, ask anyone who knows her, she’d win you over with her personality in a matter of seconds.
She has a loving and truly remarkable boyfriend of two and a half years and more friends than anyone I’ve ever met; I can’t even keep track. Plus, being one of her little sister’s greatest supporters as she battles the internal and external consequences of being severely underweight, dropping a bunch of pounds isn’t exactly at the top of Taylor's to-do list. However, living a healthy and happy life, after all this time, is. And I guess I would know first hand, because I am that little sister.
Allow me to introduce myself. My name is Spencer (yes, I know what you’re thinking, that CAN also be a girl’s name), I am 18-years-old, and my big sister is my guardian angel. She has been my backbone through every hardship I’ve had to face; putting her own health aside to comfort me anyway she can.
Battling a whole slew of mental illnesses, on my worst days she is the person I turn to. Just being around her calms my thoughts and soothes my state of mind. She just gives off a positive energy. I confide in her and she always has the optimistic words to keep me moving forward. I do not have the slightest clue where I would be today without her, or in fact what I would ever do without her.
You see, in 2011, Taylor was diagnosed with this thing called GERD shortly after having an emergency removal of her gallbladder right before it burst. It wouldn’t have been so severe if the emergency room hadn’t turned her away twice, saying they couldn’t figure out what was wrong. Just two more medical bills for absolutely no assistance. The surgery finally happened three days after her 26th birthday. The doctors said they had never seen a gallbladder in such horrible condition, claiming it looked like a rotten avocado. They were completely flabbergasted as to how she had even been living with it. It was then they began to realize something was very wrong. And it was not just asthma.
Then the problems continued rolling in. Taylor had a hiatal hernia, sounds fun right? In laments terms, this means the flap on the top of her stomach, at the base of her esophagus, opened up and was unable to shut. So all of the acid in her stomach was running up and down her esophagus, eating away at it and creating a serious potential for cancer.
GERD stands for gastroesophageal reflux disease. This is a chronic digestive disease when acid from the stomach flows back up into the esophagus burning its lining, causing some extreme damage.
That same year doctors decided to perform a Nissen fundoplication. This medical procedure is meant to prevent the reflux of gastric acid by taking the upper part of the stomach, wrapping it around the bottom of the esophagus and stitching it in place, forcing the closing function of the lower esophageal sphincter. What none of us knew at the time is that many Nissens fail due to mistakes made by the performer of the surgery. Of course hind-sight is 20/20. And that’s just what Taylor’s did, and while she was still visiting the hospital for breathing problems we were not informed that the Nissen failed and they continued treating her for severe asthma.
Sometimes people with GERD can manage the discomfort with prescription medications and lifestyle changes. But when your case is more serious, like my sisters, surgery can be the only option to reduce symptoms.
With the over-production of acid in her stomach, and the Nissen not doing its job, it continued flowing upward doing its damage. It seems to be a no-brainer that all of that gastric acid would have to find somewhere to go, or perhaps something(s) to spill into…
My sister, now 29, stripped of so many opportunities most 29-year-olds have had, simply because doctors didn’t realize till the beginning of last month that her lungs had been filling up with acid. Seven years of medical bills, countless hospital visits, difficulty keeping a job because of her poor health, all because she’s been treated for the wrong thing.
All along they said it was just a "breathing problem” when this acid, a substance that burns and eats away at everything in its path, has been the major issue. She was having these breathing attacks because acid was in her lungs.
The one surgery capable of stopping the gastric acid, stopping her breathing problems and saving her life is called a Roux-en-y Gastric Bypass. This would remove the damaged part of her stomach that’s wrapped around her esophagus from the failed Nissen. Then they take the small intestine and bring it upward so her food will go directly into it. Next, they attach the large intestine to the small one so all digestion will take place much lower. This meaning no acid can reach her esophagus and no more acid filling her lungs.
She will be given the chance to live a healthy and happy life. No more hospital visits, no more breathing attacks, no more constant pain. It kills me to see my sister, a girl who is so mentally strong, hurting in such an extremely agonizing way. Taylor and her boyfriend, soon to be fiancé (~hint hint Mike~) could have a wedding without the constant worry of her lungs giving up from too much gastric acid. She could be given the chance to have children, something she never thought she would be able to do. She could walk from the handicapped parking spot to the doors of a grocery store without losing her breath. And I, I would be able to keep my guardian angel here with me.
The downfall is a Roux-en-y procedure costs about $50,000 total. The insurance company has officially turned it down once because they see Gastric Bypass and automatically assume it’s for cosmetic reasons. They see that she’s “overweight” and don’t even bother reading her absurd medical history and the detailed papers the doctors have written for her. To top it off, the Prednisone is the reason her weight is where it’s at.
Taylor’s doctors, obviously concerned by the fact that she’s just getting sicker every day, have tried to convince the insurance company to do a peer-to-peer conference. That means they’d speak directly to the insurance people and explain why this surgery needs to happen, and fast. However, they refuse to give them or her the time of day until they appeal at least three more times and even then it’s not guaranteed.
Just because a surgery is in the Gastric Bypass category doesn’t mean the patient is just trying to lose weight and it’s extremely shallow to ever assume that. My sister is beautiful inside and out and confident at any weight. Without this surgery my sister’s life is being risked and I simply can not let that happen; I’m determined to accomplish whatever it takes to give her good health, peace of mind, and happiness. My sister deserves that, at the very least, more than anyone I know.
Unfortunately, I, just like most people, do not have $50,000 lying around. Which is why I have decided to start this fundraiser. Every dollar counts at this point.
50,000 is a large number, and I don’t have a large amount of time, but if you can find it in your heart to help it would truly mean the world to me, my sister, our parents, and every single person in Taylor’s life.
I can continue keeping everyone updated through this website. I could also create a Facebook page with picture, status, and vlog updates if all goes well with my fundraising.
Thank you for your time and consideration.
Remember any donation helps; please help me save my best friend. Please help me save my sister.