Patient Stories

Tyler’s Story

Tyler's Story

Friday, March, 2, 2013 was my last normal day. I had been for a run on my lunch break that day. Saturday, I noticed some weakness/soreness in my legs and didn’t think much of it. On Sunday, my legs were noticeably much weaker. We took a trip to Costco that day. I had my wife Erin drive, had her get my son Owen (6 months old at the time) in and out of the car, and carry him into Costco. All of these things were normally my duties, so I remember her asking what was wrong with me. All I could say was that my legs felt weak, and I didn’t feel right. I remember in Costco I had to walk holding on to the buggy, and I kept feeling like my legs wanted to give way. This feeling lasted the rest of the day, causing me to stay parked on the couch at home. Later on, after we went to bed that night, I got up and fell in the bathroom. Erin had to get up and help me back to bed. At this point I had a hunch that something was wrong. Erin asked if she should call 911 or take me to the ER, but I declined, saying, “I will just go to the doctor in the morning.” When I woke up and tried to get out of bed, my legs completely collapsed, and I fell without making it one step from the bed. At this point I could barely move my legs. Erin helped me to the couch and made me a doctor’s appointment for 11 a.m. We had to call two work buddies to come to the house, carry me to the car, and get me out of the car and into a wheelchair at the doctor’s office.

While we were at the doctor’s office, I was correctly diagnosed with GBS. My doctor scheduled a spinal tap at the hospital in Wilmington, North Carolina to confirm. My parents left for Wilmington immediately, coming straight to the hospital. My mother-in-law also left home immediately, but she went to our house to help take care of Owen so Erin could come back to the hospital. My sister Rae lives in California, so we stayed in touch with her over the phone.

My memory is pretty foggy about my hospital stay in Wilmington. When I first arrived, I had to use the bathroom but was unable to. They put a catheter in, which was not a pleasant experience. That first night at dinner time Erin left to go pick Owen up from daycare and get him into bed. That evening my pastor came to visit me, and he actually fed me my first hospital dinner. I was already too weak to feed myself. During this time I learned that my pastor had actually had the same illness. This was the first time I had someone share their first hand experience with Guillain-Barré syndrome with me. I knew I was in for a rough ride which actually turned out to be much worse than anyone expected.

I kept getting worse at the hospital in Wilmington. Paralysis crept throughout my body, and by Friday, I was no longer able to breathe on my own. All of this was happening while I was getting my first round of treatments, which was supposed to make me better, but I kept getting worse. They wanted to transfer me to a larger hospital that had a larger neuro department and the capability to do plasma exchange. On Friday, I was air lifted to Moses Cone in Greensboro, NC. Moses Cone was a good fit for us because all of Erin’s family live in the Greensboro area. Erin and Owen lived with Erin’s parents while I was in the hospital in Greensboro. I have no recollection of being transferred there.

When I got to Greensboro, I started plasma exchange immediately. GBS is thought to be caused by autoimmune factors, such as antibodies. The plasma exchange process removes antibodies and other potentially injurious factors from the blood stream. It involved connecting my blood circulation to a machine that exchanged the plasma for a substitute solution. I don’t really remember it making me feel good or bad. At that point I only remember being very uncomfortable and in pain.

By March 13, I had gone through two plasmapheresis treatments out of a schedule of five. By that point in time I had pneumonia in both lungs and a partially collapsed left lung. That was also the day they put in a trach to make me more comfortable on the ventilator.

The first five to six weeks I was at Moses Cone are hard to recall, probably because my case was very severe. I do remember being transferred in and out of various departments and ICUs. My main memories are of pain and discomfort. I was always hot or cold. I had weird painful sensations in my back. I had an extreme case of dry mouth. I could not drink anything because I would aspirate the liquid into my lungs. They would let me have mouth swabs (moist sponges on a stick) and then they would suck the liquid back out of my mouth. I drove my family crazy asking for mouth swabs every ten seconds. My lungs and throat were also filled with phlegm. The nurses and respiratory therapist would have to come and suck it out of my mouth, throat, and lungs.

While I was at Moses Cone I got heparin shots three times a day. Heparin is a blood thinner to prevent blood clots. At one point I had seven different IVs and pick lines stuck in me at once. Erin snapped a photo of me that day, I did not look happy to say the least. Then again, who wouldn’t be unhappy lying helplessly motionless in an ICU bed with needles being stuck into them?

Becoming paralyzed overnight is absolutely horrifying. In my case, I was in a nearly complete state of paralysis for weeks. I felt helpless lying in bed paralyzed. I could do nothing on my own. All I could do was lie there and pray. I mainly thought about Owen. I remember thinking that I did not want to miss any of Owens’s milestones. This was my one true worry at that point. In my head I knew I was going to get better. My whole family told me, “This is all just temporary.” I knew my case was severe, so no one knew how long it was going to take. I just wanted to be there when Owen began to walk and talk. Erin would make videos of Owen to show me. This was what cheered me up the best, as well as motivated me the best. I remember telling Erin to make more videos, make more videos. The best time of the day was when Owen would come to see me in the hospital. Erin would show up on the unit, pushing him in his stroller, to come see me. This really motivated me to get better.

Seeing Erin and my family was extremely comforting. I don’t know if I would have been able to handle everything without Erin and my parents. Another thing that was extremely helpful was all the financial support we received. Our friend Dani started a page on Lots of people donated a lot of money to me and my family via this website. My sister Rae also taught a dance class for donations out in California and raised money for me that way. This money helped pay for my medical bills, mortgage, and all of our standard bills while I was out of work.
I was out of work for a total of five months. However, losing my job was not a concern. Erin told me early on that she had spoken to my work, and they said my job would be waiting on me when I recovered. Getting behind on the car and house payments was a concern until Erin informed me of what Dani had done with the Gofundme site. I remember we were talking about it one night, and Erin said we were going to be fine. She logged onto our bank account to show me just how much money was raised, and I was blown away. I also collected all my vacation time from work along with some short term disability. It really was a good feeling to not have to worry about money while I was in the hospital. It allowed me to focus more of my attention towards the recovery process.

For the longest time I could not speak or move. I could, however, mouth words and nod my head ever so slightly. Erin was the best at understanding me. She and my parents had the most patience with trying to understand me. When they could not understand me, we used a letter board. Erin would point at letters, and I could signal when she was on the appropriate letter. Until my voice recovered, this was one of the ways we communicated.
On April, 2, 2013, my heart stopped beating. I had just recently been transferred to long-term acute care. My family, acute care team, and I were in the middle of a meeting. They were discussing my care plan when all of a sudden I fainted. When I came to, a nurse was on my chest giving me compressions; everyone was scrambling around keeping me alive. The doctors never really discovered why my heart stopped. They performed multiple tests, had heart specialists come in, and were never able to diagnose why it stopped. After this I was transferred out of long- term acute care and put into the Cardiac ICU. At this point I was at my worse. Erin informs me that I had another severe case of pneumonia, I was unresponsive, and had a case of ICU psychosis. ICU psychosis is common with long hospital stays mixed with heavy drugs. During this time I had some strong hallucinations. After my second round of treatments, I really turned the corner.

Recovery was slow. It started with the ability to shrug my shoulders, then lift my hand, then my arm. The major step in the recovery process was to regain the ability to breathe on my own. I struggled with this for quite a while. It took a few weeks for the nurses and doctors to wean me off the ventilator.

While I was in the hospital, I had a peg tube, which was a tube that went directly into my stomach right above my belly button. I guess I got used to not eating real food. I don’t remember feeling really hungry. I do remember when I got cleared to begin eating and drinking again, I had ice chips, water, milk, applesauce, and crackers. I don’t know if anything ever tasted better to me in my life than those four things did on that day. This was day two of breathing on my own and having my speaking valve on the end of my trach tube. I could talk, eat, drink, and breathe on my own for the first time in 47 days. Looking back on the whole experience, this day was a major stepping stone during my recovery process and probably one of the best days of my life.

When I finally made it to rehab, my body was so weak I could do nothing on my own. I had to completely retrain my body to do everything. Every little thing felt like a milestone: holding a cup, washing my hands, brushing my teeth, getting myself from a lying to sitting position by myself, holding my body in the sitting position by myself, and the last and most difficult, standing and walking. Again, I was very motivated at that point to get better; I was pretty tired of being in the hospital. When they gave me my expected release date, I was incredibly motivated to walk out of the hospital, and I accomplished my goal with the help of a walker and leg braces.

On June 5th, I was discharged from the hospital. At first, when I was at home, it was surprisingly boring and kind of depressing. In the hospital I was doing rehab sessions all day long. At home my home health therapists came by only once a day for about 45min. Needless to say, I had a lot of time on my hands, and I still needed help doing a lot of things. Over time I did improve though. At the time of this writing, I am back working full time, Erin and I are raising our son Owen, and I’m back to fishing and playing a lot of poker. For me, life is almost back to normal. I’m still waiting for feeling and full range of motion to come back in my feet and ankles. That keeps me from running and playing volleyball. Other than that, I can do whatever I want!

A final thought to those affected by GBS: Life will eventually get back to normal. It was a long and still is an ongoing process for me, but here I am living a normal life.