The Faces of Guillain Barre 2017: Day 19- Debora

Friday, May 19, 2017 0 Comments

It began slowly. And then- it came all at once.  I was diagnosed Halloween Eve 2016 & I was/still am 25 years old. 

I was studying abroad at the time in Havana, Cuba. It was the second day in when I started experiencing diarrhea and generally feeling off. I assumed it was the change of food, jet lag, the change in climate (I had flown in from Spain, where it had been cold and rainy; I was studying in sunny Greece beforehand) - or all of the above. 

Days before I was struck with.GBS

I did my best to take care of myself- went to sleep early, drank more water, and went on long walks, exploring what was supposed to be my home for the next two months. 

A week in, and a few of us decided to go out and eat that night, to celebrate our first week in Cuba. I was starting to feel better. I decided to do some homework that afternoon. As I laid on my stomach, books in front of me, this sudden and overwhelming feeling came over me all at once. I felt tired and heavy, as if all the worlds worries were suddenly on my shoulders. My eyes felt dry, so I rubbed them. It wasn't until I stood up when I felt like my balance was off- and it wasn't until then, when I caught my glance in the mirror, that I saw that my eyelid had shrunk.

Immediately, I took off my contacts, put water on my eye. I asked our host family for some ice. The words of the matriarch still haunt me to this day. "You're getting sick, nena!" 

I ignored it. With ice in a bowl, I went back to my room and iced my eye. 

Fast forward to hours later. We were walking back from dinner, when I noticed that I was lagging behind my friends. My walk was not the same- I was walking long, wobbly steps. My legs felt like they weighed a million pounds- but I stayed quiet as we went back to the house. I was just tired, I told myself. I just needed to sleep it off.

The next morning, I fell. Twice, before it ran through my mind that something was wrong. My heart ran a million miles per hour as I tried to think it through- I couldn't just go to my host family in my pajamas. They would laugh at me.

Looking back, I don't know how I did it. I went to the bathroom, got dressed, even put on makeup that morning. It was when I tried to bend down to get my shoes that I had the fall of all falls. I couldn't get back up. 

By some miracle, I crawled up on the bed and carefully got back on my feet. I put on my shoes and left my room- walked through the kitchen. Nobody. 

Just a few steps more, and I fell again. Knees buckled. Couldn't move an inch more. I knew that someone had to be awake- the backyard door was open. I waited. Heard someone moving outside- and yelled.

The rest of it was a blur. 

I was conscious throughout everything. Within minutes, I set the whole house in a panic. I, the ever calm one, was able to crawl to the bottom stair of the staircase in the kitchen, in the middle of all the chaos as I waited what they wanted to do with me.

I knew something was wrong, but I didn't think it was that severe. I ended up in a hospital, a private one. After examining me, they concluded that I should stay at the hospital for testing. They weren't sure what it was, but knew that I couldn't leave. The issue was, we had to pay $3,000 out of pocket. I had travel insurance, but they didn't accept it. It was also Sunday- and according to the doctor, no testing could be done that day. It would be an overnight stay, and then testing in the morning.

Since American credit cards and debit cards are useless in Cuba, we were given the name of a free hospital. Public and poorer, but free.

I made the choice to head back to the house- a choice I regret. I thought that I would just stay in bed for the rest of the day, then go to the free hospital bright and early the next day. What a decision that was.

I couldn't walk without someone holding my hands at that point. The driver and family friend of the host family took my hands and helped me walk towards the house when we arrived. It all happened far too quick. A mud puddle, my foot sliding, a yell and a loud, far too loud crack.

I fainted. Or at least it felt like I did. Somehow, someway, they got me in a chair, pulled me to the sidewalk, and everyone in the house, including my classmates, were surrounding me.

I was in pain, telling them that I broke it! I broke it! No one believed me. Sprained, surely. They got me water, bread, as I heard the family yelling behind me. "She can't stay!" My classmates telling me that it was my choice of what I wanted to do. 

But I knew I had no choice.

Within minutes, we were at the free hospital. I was put in the emergency room. A million questions asked- it was then that I found out that it was a university hospital. There is nothing stranger than laying in a ten bed emergency room, half a dozen doctors in training surrounding you, talking about you as if you're not there.

More and more came. I felt like a side show act. It was then that I realized that the more time went on, the less I could move my legs. The student coordinator was with me the entire time- my source of sanity those first couple of hours. We chatted, joked, and kept things light.

It was around then that we decided that it would be best to call my mom. Her child in a hospital in a foreign country- probably not the best news in the world. Calls to the program head were made. To the U.S. Embassy.

Fast forward again. I had an IV in my arm- they told me that I was low in potassium, so I had that surging through my veins. They had told me that what they thought happened to me is that my body made too many antibodies to attack the diarrhea that it started attacking things it shouldn't have. They never told me the actual name, but either way, it was mere speculation at that point. Sundays weren't days for testing on the island.

I had fought to leave the hospital- I wanted to go to Miami to get treated. The ten bed hospital room, the FLIES constantly flying around me, the incredibly too sick people I was around- I just wanted to go home.

We would talk in the morning, they said. I tossed and turned on that mat they called a bed for hours and hours. I had a first row view of all the patients that came in and out of that cold, dusty emergency room. I only had a towel that my host family had put in a bag for me (along with a toothbrush and other essentials) to cover myself. My ankle throbbed and was the size of a grapefruit. I asked for ice, but they told me "honey, this is a poor country."

I got some sleep- until a screaming patient came in around 3am. She didn't calm down until 10am. 

Hours and hours passed until a multitude of things happened - I got an X-ray of my ankle, found out that it was fractured, and then got admitted to what I thought was just a regular hospital room.

But it was the ICU.

I spent the next 8 days in that room. Alone, and cold. There's no wifi in Cuba, I wasn't allowed any electronics and even though they found me a TV, the antenna broke after 2 days.

They had me hooked onto IVIG for five days. I think it was the second day there that my mom flew into Cuba. Since it was the ICU, they didn't let her come in. I had to communicate with her through a window. She had a tiny notebook that she wrote in, and I mastered the art of hand signals.

There was only an hour a day for visitors through that window. I had the luck to have nurses that were nice enough to arrange a few phone calls with my mom so I could actually talk to her. She brought me lunch and dinner everyday. I don't know how she managed to cook so well in Cuba.

After my fifth day of IVIG, I had been told that I was going to be moved to the tourist level, where I could be with my mom. But they changed their mind the last minute. And the same thing happened the next day, and the next...

It took my mom putting her shoe down and the power of the U.S. Embassy to finally get me out of the ICU. (Seriously.) it was when I was in the tourist level when my mom told me what the disease was called - Guillain Barre. I found out how bad it could have gotten. I found out everything that had happened while I was in that room - from the Embassy's involvement to everything that my mom had gone through.

(The Embassy was there when I was admitted to the ICU, they contacted my mom, they called the hospital everyday, they helped get me out of the ICU, helped arranged airfare....EVERYTHING. Seriously, if you get sick abroad, call the Embassy.)

I was lucky. GBS affected my arms and legs, and nothing else. I didn't have any breathing problems. I was strangely lucky enough to have gotten sick in a country where the language is my family's native language. I was also lucky that the hospital HAD IVIG to begin with and just enough- the last round of the medication that they gave me was the last they had in the entire hospital. 

I flew home after two days in the tourist level. I had to leave a program that I was in love with, and temporarily stop traveling.

Once home, I was admitted to a hospital, and I had another round of IVIG. The paperwork that the Cuban hospital gave me didn't say much and they weren't sure exactly how much they had given me. "Better to be safe than sorry." They told me.

I basically started over, but that was fine by me. It was three days of testing, testing and more testing- and then I was sent to a rehab hospital, where I stayed for over a month. 

It was there that I learned how to function from a wheelchair. I walked a little, but it was hard with a cast on my broken ankle, and then later on with a walking boot. Once I got out, I could take care of myself fully with the chair.

I was home a week before Christmas. I began an intensive day rehabilitation program soon after, and just completed it a week ago now (March 10). I entered the program in a chair and left walking on a walker.

Somewhere within all of that, I had two more sessions of IVIG to help with strength and I was re-diagnosed with CIDP.

Current selfie- 4 months post GBS

After everything, I'm happy to be home, thrilled with my progress and, most of all, thankful to be alive. I'm still struggling with my balance, my weak ankles and knees. But I'm hoping to get back to the life I was leading before all of this happens by this fall. Impossible? Maybe. But if there's anything that my experience with GBS/CIDP has taught me is that I'm a strong, mighty warrior. There's nothing that I can't accomplish, and nothing will get in the way of my dreams.