Hi, I'm Mariel, and this is my story.
On August 31, 2017 I started having neck pain that became so severe I couldn’t turn my neck, so I went to a CVS Minute Clinic. They prescribed me with a muscle relaxer, but it didn’t provide any relief. I started feeling like I was sick with the flu, so I went back to the Minute Clinic a couple days later. They found that my heart rate was really high, my blood pressure was low, and I had a fever, so they sent me to the ER.
My Nana picked me up and took me to the ER, where they did an EKG before I was even checked in, then took me to the Resuscitation Room in the ER. They ran lots of blood tests and did a spinal tap, and 12 hours later found that I had two strains of the flu, a cold, and viral meningitis. I was admitted to Shands Hospital on September 6, 2017.
I continued to get worse, and while I was in the hospital my white blood cells and eosinophils, which are part of your white blood cells, increased each day. I also developed blood clots in my legs after one night in the hospital and was unable to walk. After being in the hospital for a week, they did a bone marrow aspiration, one of the most painful procedures ever. They didn’t find anything concerning, and after another week sent me home to Atlanta, after two weeks in the hospital, to follow up with a hematologist and do physical therapy to learn how to walk again.
I came home and after a couple of days went to be evaluated for PT at Children’s, where they ran blood work again and admitted me to Scottish Rite since my eosinophils were even higher than when I left Shands. I spent three days there and then was sent home, to start seeing my hematologist regularly and start day rehab where I spent three weeks learning to walk again.
I saw my hematologist once a week for a while, and he diagnosed me with Hypereosinophilic Syndrome, a rare blood disease, and started me on an oral chemo drug to reduce my eosiniphils. The drug was not very effective and gave me horrible side effects: draining fatigue, debilitating headaches, and crazy painful back pain.
In December, we considered changing my medication, taking a trip up to visit specialists at the National Institute of Health, and seeing a rheumatologist in the area.
My doctor thought that I had an autoimmune disease along with the blood disease, but I had seen rheumatologists at Shands and Scottish Rite, none of which thought it had anything to do with their discipline. We thought that it could be Churg Strauss/EGPA, a rare autoimmune disease, so I went to see a rheumatologist at Emory, but he didn’t think I had any rheumatologic issues.
In January, I went to Gainesville to move out of my apartment, since I had continued to get worse and knew I wouldn’t be able to make it back for the spring semester. When I got home I started to get sick, as I knew I would after that exertion, and had a high fever. I was sick for about a week and then started feeling better, so we didn’t think much of it.
Maybe a week later, on a Friday, I started to have a weird pain on the back of my left thigh that felt like a rash, but there was nothing there. It continued to get worse that night, and the next day it was so excruciating that I spent the entire day on the floor crying. The next day, Sunday, my leg started feeling better, so I went to church because the elders had planned to pray over me, but I didn’t drive myself, because I noticed that something was wrong with my vision and I didn’t think it would be safe to drive.
My parents were concerned about the vision changes, so my mom contacted my doctor and he said that I should go to the ER. In the ER, they ran some blood tests and tested my vision, but nothing looked wrong, so they sent me home, even though I knew that I should be admitted that night.
On Monday, January 22, 2018, nothing had improved, so my doctor said to go back to the ER, where this time they took me seriously and admitted me. They did scans that night; I remember going into the MRI, coming out and feeling like I was going to throw up, getting in a wheelchair to go back up to my room, and then I don’t remember anything for about two weeks after that, I don’t even remember making it to my hospital room after the MRI.
The MRI found that I had three areas of bleeding in my brain, but at the time my spine looked fine. The next day my legs started to get numb and tingly (so I’ve been told, I have no memory of this), so they rushed me to an MRI where they found that a blood clot had developed in my spine at T7.
I’ve been told that I was in a lot of pain, and due to the brain trauma was acting like a child, yelling and hitting people. I had a feeding tube in my nose since I wasn’t able to eat, a PICC line in my arm, and at that time they officially diagnosed me with Churg Strauss/EGPA, which we knew I had all along, and started chemo.
The first round of chemo nearly killed me, but in the end I think it’s what saved me. I did 6 rounds of chemo over 6 months; I lost about half of my hair, and I’m still suffering from fatigue due to the infusions.
After about two weeks in the ICU is when I start to remember bits and pieces. I had started to look like I was improving, but after about three weeks in the hospital I had a GI bleed and had to receive three units of blood. They weren’t sure what caused it, but I wasn’t allowed to eat or drink anything for five days until they were able to do an endoscopy and colonoscopy. The next week I had my second round of chemo, which they ran over 12 hours to prevent the side effects I faced the last time, and then was
transported to the Shepherd Center.
I spent two months inpatient at Shepherd, where they implanted a port in my chest to continue my infusions and I learned how to get around and take care of myself as a paraplegic. I also did a lot of speech therapy while at Shepherd; learning how to read, do simple math, remember words, and scan to compensate for my vision loss.
In the hospital and after, I had a lot of word finding issues, I couldn’t tell you what my favorite food was, my friends’ names, or what I called my grandmother. I also had to relearn how to read; I didn’t even know what the letter W was called. I learned how to do basic math again, starting with 2+2. I also had to get used to scanning, since I don’t have any peripheral vision on the right side.
After being discharged from Shepherd, I did another 6 weeks of day rehab, and then 2 months of outpatient rehab. I’m able to do most transfers on my own now and take care of myself, and I’m getting stronger everyday. I still have trouble reading and with math, but I’ve improved a lot and continue to work on it. My hope is to be independent again, go back to school and be a normal college student, get back to the things I love like hiking and kayaking, and find a job that I love and am able to succeed at.