~ A Guava Patient Story ~
Kate Michaelson shares her journey through year-long diagnosis and chronic illness
How it all started
It was only two days past my 21st birthday when my world came crashing down. Just one week before, I began to develop a few strange but manageable neurological symptoms. Then, two days after my 21st birthday, at around 4 am, I developed intense gastrointestinal symptoms. I was experiencing tingling in my hands and feet, ongoing headaches, jaw pain, teeth discomfort, extreme nausea, reduced appetite, and abdominal pain. At first, I assumed that I had a virus, but when it didn’t go away, I realized I needed to get some help, so off to student health I went.
When I first visited student health, I told them about the neurological issues I had developed just before my gastrointestinal symptoms had begun. I mentioned that I felt there was a connection. The nurse practitioner had looked at me like I was crazy, and I quickly learned not to bring up this idea again. It all felt like a nightmare, and yet little did I know my already high pain tolerance would have no choice but to grow to a level I didn’t even know was possible.
To absolutely no one's surprise, my first gastroenterologist believed I had a functional issue, which really just means that there is no structural abnormality causing the issue. This sounded like a possibility at the time, so I followed all the treatments. Yet, still, nothing helped. As time progressed, my doctor began to treat me in a way that many other 21-year-old females have also experienced in their lives.
My symptoms were blamed on things like stress, anxiety, and worry over studying abroad next semester. I was even told, at one point, that all of this was due to an eating disorder (that I did not have). These conclusions that my doctor was making brought endless amounts of emotion. I knew they weren’t true. I could feel it in my bones; something larger was wrong. And now, I was getting worse by the day and no one was helping me.
To make matters worse, my gastroenterologist was not the only one treating me this way. My neurologist, too, was not taking me seriously. After some testing, she found that I had seven pinched nerves in my cervical spine. This should have been a quick sign to do more testing and find out why at such a young age, I was facing these issues, but she did not.
Eventually, I moved on to a gastroenterologist at a more prestigious hospital. This was a very necessary change since I was getting much sicker, and my old GI doctor was simply not cutting it.
My new doctor was great in the fact that she put me through dozens of tests and really tried to figure out what was wrong. I stayed with her for over a year, up until my last surgery. While with her, she managed to diagnose several of my issues, like gastroparesis. However, she couldn’t connect these conditions to my neurological symptoms. So, once again, I saw the broken health care system in full view. Why wasn’t she consulting others when she had this young 20-year-old female who was so ill?
Just as the story of many patients goes, I swiftly moved from doctor to doctor, searching for answers and help. I went on to see endocrinologists, rheumatologists, gynecologists, psychiatrists, sports medicine specialists, chiropractors, acupuncturists, integrative medicine doctors, and more, desperate to find solutions to all the symptoms I was facing. Many doctors were performing tests, analyzing clear-cut scans of my spine and brain, and still missing the answers that sat right in front of them.
Almost all of my doctors looked down on me and made me feel insane. I was not listened to, I was not respected, and I, most definitely, was not treated in a way I’d hoped most physicians would want to treat their patients. Slowly, I began to fight for myself; I started to stick up for myself. I braved the storm, and as soon as things became truly unlivable, a neurosurgeon returned my mother’s call.
A silver lining
I should probably mention that, at this point, my mother was managing every aspect of my care, navigating a system she had never had to navigate. She had quit her job to care for me and put everything aside to help me get better.
After many hopeless and heartbreaking doctor appointments (more than I can count, actually), this new surgeon took a look at my scans and told me that it was pretty crucial I came in for an appointment.
The next thing I knew, in the midst of the pandemic, my mom and I were driving up to his office. It was at this appointment that I learned I had a Chiari malformation.
From then on, my care moved quickly. By November 2020, I was undergoing a 4-hour brain surgery with only a 50% chance of helping my gastrointestinal symptoms. However, with the advice of several neurosurgeons and my gastroenterologist, we decided it was worth it to at least fix my neurological issues.
After my first surgery
I had not even had my 3-month post-op scan when I knew something was wrong. After my surgery, my gastrointestinal symptoms progressed quicker than ever before. From a neurological standpoint, I was healing, but, gastrointestinally, I was breaking faster than ever. I was unable to keep any liquids or solids down. It was pure horror. That’s when my gastroenterologist decided it was time to refer me for esophageal surgery for Gastroesophageal Reflux Disease.
So, the same day I went in for my 3-month post-op with my neurosurgeon, I saw my thoracic surgeon for the first time. I remember the first thing he said to me was that I was interesting, complicated, and that he would have to torture me a bit to get even more data on my diagnosis before he could operate.
When I went to receive a second opinion from another surgeon, I realized my first surgeon was not kidding. I was so complicated that the surgeon I had asked for a second opinion from could not give me any answers on the day of my appointment. Furthermore, he insisted on bringing all of my test results and information to a swallowing conference with providers from the entire hospital to get opinions on the best care for me. He came back deciding I was too complex for him to operate on.
My first thoracic surgeon did, however, agree to operate. So here I was, three months out from brain surgery, knowing I was prepping for another huge surgery.
Some more answers are found
The testing leading up to the surgery was so beyond terrible that it still gives me nightmares. I was kept off medications and forced to eat and drink despite not tolerating anything. I was basically medically inducing my symptoms.
However, my surgeon was right because the tests showed shocking results. Immediately he knew that I was not like the normal GERD patients whom he operated on daily. Unlike most of the patients, I had damaged nerves that were causing anatomical issues within my gastrointestinal tract.
To give some context, in the past, I’ve had two major concussions. This led my doctors to believe that my Chiari malformation took a larger toll on my body than normal due to these past injuries. My Chiari malformation, in turn, injured many nerves that control my autonomic function. This meant that now my nerves were not communicating the way they were supposed to, keeping parts of my body like my esophagus, stomach, and intestines from working properly.
The next three months that led up to May 24, 2021, the day my esophageal and jejunostomy tube surgery was scheduled for, were a type of misery and pain that I could never have imagined. My mom still remembers me sitting at the end of the table, nothing but skin and bones, wrapped in heating pads and blankets, unable to eat and drink. I was in excruciating pain, still taking classes for school, with nothing left of myself.
My second surgery
On May 24, 2021, my mom and I showed up at my favorite hospital (yes, when you’re chronically ill, you develop favorite hospitals). As soon as we arrived, my amazing surgeon walked me himself to the OR. I got onto that table, at a very frail 94 pounds, without any idea of how I had become this person. I was always the healthy one, and now I was broken.
After my surgery, I, once again, spent a week in the hospital, my mom right by my side. At this point, I was just hoping I wouldn’t die. The healing process from this surgery was the most agonizing process of my life. I went through deep depression, huge bouts of anger, and nearly manic episodes. I lost control of my body to my chronic illness, and I spent every day wondering what it could have been like if I didn’t have to go to doctor after doctor trying to convince them to believe me. Why did I have to spend the first year learning to fight and advocate for myself against doctors who swore nothing was wrong?
The truth about chronic illness
I’m lucky. I have two surgeons, whom I still rely on and talk to, two gastroenterologists, a general one, a neurogastroenterologist, a neurologist, a POTS doctor, two specialized physical therapists, and the most amazing internist who contacts all my other doctors directly when I need her to. But this is nearly three years and many doctors later.
I am not so different from others. I am just a girl with bad luck and bad genes, who unfortunately ended up in a really bad situation. I believe through and through that when you start advocating for yourself, your care from doctors will change. I’m telling you my story in hopes that you will never have to progress as deep into your illness as I have because now it is something I will fight forever. Be willing to ask questions, search for new opinions, and stand up for yourself. Advocating for yourself is one of the most important ways to deal with chronic illness because you deserve care that will make your life liveable, and you deserve to be heard.
The unfortunate reality of chronic illness is that it typically doesn’t have a happy ending of groundbreaking treatment and full recovery.