KINGSPORT, Tenn. (WJHL) – Isabel Blevins sits in her small corner in her family’s kitchen. The corner resembles a reading nook but has transformed into a prayer wall and a storage cabinet reminiscent of an emergency room supply cart.
With two feeding tubes and a central line, Isabel has become a master of medical procedures over the last five years.
Now, a fundraiser could help put an end to the incessant hospital visits.
From horseback to hospital bed
In January 2017, she had the flu and struggled to recover, then in May of the same year, she was in a car accident that left her hips severely bruised, but with no major injuries. Then, the pain started.
“And then later that summer in July, I was having really, really severe abdominal pain and having trouble eating. So we went to the ER and they diagnosed me with an ileus, which is just like your small intestine is just paralyzed, not permanently just for a period of time,” she told News Channel 11.
As the prescribed liquid diet only seemed to worsen her abdominal pain, she said she got to the point where even taking a sip of water was unbearable on her stomach.
She was rushed to Niswonger Children’s Hospital where she was diagnosed with gastroparesis.
“Which just means that your stomach doesn’t move at the right pace. So everybody else’s stomach digests food within 30 minutes to an hour is what they normally say, if I eat something, it’s in there for six or more hours and it just stays there until my body decides it’s going to do what it’s supposed to so it makes it really uncomfortable to eat and painful,” she said.
Again, months of treatment and excessive pain continued.
“After a lot of testing and everything else I was diagnosed with one vascular compression, and it’s called MALS, median arcuate ligament syndrome. Basically, my celiac artery that gives the blood flow to my digestive system, it was compressed and so that can cause a lot of pain when eating and things like that. Because obviously, to be able to digest we need blood flow and things like that,” Isabel explained.
She had the MALS compression surgically corrected once and then several months later, she had to have it corrected again.
For a short period of time, in 2018 after the second MALS surgery, she could almost eat again. She started to feel like herself.
“I started having trouble again, a lot of trouble and so I was admitted and we kept trying to figure out what was going on things like that I had testing done to see if my intestines and my stomach were moving properly. What exactly was the problem? And when I say testing I had almost pretty much every single [gastro-intestinal] test that exists around here,” she said.
Isabel explained that testing in America consists of the medical professional asking the patient to lay back on a table, bed, or gurney while testing is done, but she said this was leading to inconclusive results.
“Nobody can really tell us why things were so bad because my testing was showing things wrong but nothing that was so wrong that it could possibly explain how severe my symptoms have been,” she said.
Finding the root cause was a bumpy ride
Since January 2017, Isabel has been to roughly 100 doctors.
“There’s nothing like being told that you’re ahead of the science and they don’t know what to do with you. I’ve been told that many times,” she joked.
Appetite loss and abdominal pain were consistent with disorders teenage girls her age (at the time, 16-years) would experience.
“It’s been really hard. It’s been a roller coaster, for sure. And the beginning to that where there wasn’t a ton showing up on the testing my age. Being a teenage girl, their first thought is eating disorder,” she said. “They, you know, try to blame it on psychological issues.”
She recalled sitting in emergency rooms, running fevers that would mean death if left untreated, writhing in pain, all to hear doctors claim it’s all in her head.
Her mom, Trina Blevins, said it was difficult to cope at the beginning.
“It’s very difficult. I can’t imagine going through anything worse. You know, in my lifetime. It’s just hard to watch your child suffer every day and not be able to fix it. That’s always the goal of a parent is to fix things and it’s definitely been a journey,” she said.
Unable to fix her daughter’s pain for her, she fought to have her daughter’s voice heard.
“It was just hard to try to explain to people and I really couldn’t and the disbelief, you know, with some of the doctors and things it’s just heart-wrenching because, you know, I knew something wasn’t right. You just know and it’s just very it’s kind of lonely,” Trina Blevins said.
Isabel explained that the pain would become unbearable quite often.
“It’s been hard. There’s nothing like telling someone you’re in pain and them not believing you. I haven’t had any pain medication or anything like that. Throughout the last five years, it’s more just I had to learn to cope and just adjust to whatever pain I had that day. So and it’s been hard sometimes for sure,” she said.
It wasn’t until she met with a doctor in Baltimore and had extensive testing last year that she was diagnosed with multiple compressions.
“When the testing is done, they’re laying down things or they look fine, but when they stand up thing bag, you know, their stomach can be 10 centimeters lower than what it should be. And all that does is compress things. And that’s you know, where the compressions you know that word comes in and I’ve never heard of these things before,” Trina Blevins explained.
So when Isabel had her MALS surgeries in 2018, she got better for a short while, but her doctors later explained that when one compression is fixed, it makes any other compressions present, worse.
And that’s exactly what happened.
All roads lead to Germany
The kind of testing to identify the exact parameters of Isabel’s compressions, along with surgeons able to perform a comprehensive surgery at one time to correct all of her compressions, is not available in the United States.
Her doctor in Baltimore had worked closely with two doctors in Germany, identified to News Channel 11 as Dr. Scholbach and Dr. Sandmann.
Scholbach will perform extensive testing on Isabel’s abdomen in Leipzig and Sandmann will perform the compression surgery in Dusseldorf.
“There’s a lot of doctors that they’re willing to do, but their hands are tied. You know, they’re only allowed to do certain things and I don’t really understand why we don’t have the testing here. I know we have the technology I just you know don’t understand why our healthcare does not look at the patient more as a whole as what you know what’s happening,” Trina Blevins said.
As her friends watched the active 16-year-old crumble under the weight of pain, surgeries, and endless medication, they too lost hope in the American healthcare system.
“The constant disappointment and the constant feeling of failure that our healthcare system has failed her you know, the feelings that her parents have, you know, like they can’t give her what she needs, you know, like, just all around, all of us feeling so hopeless. And so I know that once they have started down this path for her surgery, every time that I’ve talked to her, she is just a little more hopeful and she’s actually looking forward to this and she is starting to hope again,” Batara said.
“It’s been years since we’ve seen the real Isabel.”
Isabel hopes the surgery in Germany will help her return to her old self.
“The sooner we get this done, the better it’ll be because the longer this goes on, I get sicker and sicker. I have more issues pop up I just don’t I’m not getting any stronger. So the faster we get it done, the better it would be for my body. But we will have that done potentially then is the hope. And then for sure. They told me that I’d be in the hospital for about two weeks and could be more depending on how I do after the surgery. And then after that, they recommend staying in Germany for six to eight weeks. They said if there’s any complications they should happen in that period of time,” Isabel explained.
Her hope is that, come fall, she can return to her old friend, Feathers.
“I mean it makes me angry that I’m here instead of others at the barn and or at school or whatever or just doing basic things like walking down our driveway or taking a drink of water and a lot of the frustration comes out when I have to do my day to day medical care of everything because it’s pretty much a 24/7 job. I take care of my feeding tubes and my lines and I do medications and so it’s pretty much all I do right now is this stuff and so it’s hard to find a lot of good in the day sometimes, but I have five dogs to force me to smile,” she said.
Frolicking with Feathers
Feathers is Isabel’s 14-year-old horse housed by Alice Page and Margi Anderson – two sisters who oversee the Rotherwood stables in Kingsport.
Page told News Channel 11 that Isabel started taking horseback riding lessons at age 11 and became Feathers’ owner at age 13.
The bonds forged on the horse trails between the women who board at Rotherwood Stables would become unbreakable.
“I mean we would load up and I mean we went down paths Knoxville and would do trails within Virginia and do trails, I mean so she was like my little like barn buddy and like, I just really miss that,” Batara, who has boarded at the stables for the past nine years, said.
Batara said she’s not been able to enjoy a ride with her “barn buddy” for the past seven years, emphasizing the fact that there was a definitive “before and after” moment – which was Isabel’s accident.
“We would just both get on bareback, walk around in the ring. Talk about school, talk about life. I mean, you know, she really she confided in me and I felt like you know, I could provide advice with her and if she just wanted to rant about something then you know, I was there for that too. And so after the accident, you just kind of saw that light and kind of that want to be in the moment just kind of fade and it has slowly kind of faded and so we just want her back and if this surgery is going to be what gets her there then we’re doing all that we can to make that happen because we want the before we want to her to come out and we want her to have that drive and that want and that just super sweet, spontaneous personality. We just want that back for her,” Batara said.
Isabel would spend five to six days a week at the barn, brushing Feathers and taking care of the horses.
On the day of her accident, Page told News Channel 11 that she had to rush back to the barn because Isabel was taking care of daily operations while the sisters were away for a two-day break. Page said she knew something was drastically wrong because Isabel wouldn’t just stop going to the barn.
“It’s hard there are some days that I just want to be done with it all and just you know wish that I could be a normal teenager and go see feathers and you know ride him and go to school but I have seen a lot of really wonderful things and relationships have grown in ways that I don’t think they could have without me being sick like this,” Isabel said.
‘It’ll help save her life‘
The National Library of Medicine reported that the hypermobile type of Ehlers-Danlos syndrome may affect as many as 1 in 5,000 to 20,000 people worldwide.
When asked if this surgery in Germany was not only life-saving, but a last-ditch effort at a normal life, Isabel quietly said that it was literally her last hope.
“Her body’s just not able to function properly,” her mom, Trina told News Channel 11.
The cost of the surgery, travel, and over two months of living expenses in Germany would total roughly $80,000, Trina Blevins explained.
She started a GoFundMe page for her daughter’s medical expenses which had already garnered a total of over $43,000, by Friday.
“Even $1 gets her that much closer to being able to be who she really is and it’ll help save her life. So, you know, if you ever thought about paying it forward, this is the time to do it. And she’s your girl,” Batara said.
The surgery is tentatively scheduled for July 7.
“I would just be so grateful. And you know the donations, the prayers they are with keeping me going they could help me live my life again. And thank you doesn’t even come near to suffice for what people have done and you know, are willing to do for me,” Isabel said.
The now nearly 22-year-old woman hopes to get back to the barn and be able to get back to her active lifestyle, make up for her lost youth, and enjoy meals with her family again.
“It’s been difficult for sure, food is everywhere. You know, that’s what people do when they gather together when they celebrate holidays and so that’s been another thing is going and not being able to participate in that part of things and events and it can make it really difficult,” she said.
Isabel graduated high school as valedictorian but hadn’t set foot in a classroom since the middle of her junior year because of her medical issues.
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