Patient Stories

Paige Duffy’s Story

GBS Patient Story - Paige Duffy image

A New Outlook on Life

2016 was the most memorable year of my life. I had finally finished high school, I had gotten my first car, my first job, and my mum’s business was thriving. This year was also when I had been diagnosed with GBS. What had started as an amazing year ended as a year that would test both me and my family.

On September 3rd 2016, my mum had finally opened her bakery’s doors. I was helping her with the constant flow of customers when I had begun to feel weak in my legs and arms. My eyes and head were aching, and I felt like I was about to faint. Me and my family agreed that it was probably an oncoming cold, and that I should go home before getting anyone else sick.

I went home and slept, hoping that I would feel better tomorrow. Then I woke up in cold sweat. My limbs were tingling and I was aching everywhere. I had gone to my doctor, who said it was just the flu. I decided to stay home and just rest, but my body felt like it was shutting down. Then I went to the ER. The pain was unbearable and I could not feel my hands. The ER doctor prescribed me narcotics, which I assumed would cure whatever this was.

The next day, I couldn’t walk, I felt numb and I was throwing up. I was so scared that I just begged to be taken to the emergency room. I could not walk down the stairs, so I had to have my parents carry me. We arrived at the ER and I had to be put in a wheelchair because my legs would not work. At this point I could only think that this was it. So many spinal taps and blood tests later, the doctors were still unsure of what was wrong with me. Some thought it was meningitis, while others concluded it was the zika virus. Both were completely wrong.

I was placed in a hospital bed, at this point I could not move at all, while I was choking on the same air I was breathing. The nurses said it was just my asthma, but as the night went on I could feel myself losing consciousness and trying to find my mother’s face, afraid that this would be last time I could see her.
Most of my time in the ICU was a blur, being prodded with needles and a breathing mask on my face, I definitely could see myself fading away. I remember hearing my mother screaming at the nurses to do something, while smelling the sterilized medical equipment being used on me, I had blacked out.

My family told me I was out for almost a month. I woke up with them by my side, telling me I had an illness that had no cure. I could only make out shapes but I knew my parents were there. I wanted to reach out and hold my mum’s hand, but I was stuck. I felt like my mind was stuck in a shell of a body, one I didn’t recognize. All I could do was blink. Once for yes, twice for no.

I remember being unable to move for weeks, unable to eat or talk. I had been hooked up to so many wires, and there was constantly a nurse sticking tubes down my throat, feeding me pain meds through a tube in my stomach, and moving me around to where I was screaming silently in my head. Even the slightest tap or push on my skin set my whole body on fire, and I couldn’t even cry out for help. All I thought was, “this is hell.” The days bled into each other as I was lying there. My nurses hooked me up to yet another machine and began the process or plasmapherisis. It took hours, as blood was taken and replaced from my body.

I was being told I’d get better and there was so much support from my family, friends, and people I didn’t even know. I think it was that strength from other people that helped me to move my body.
Me and my family were amazed as I managed to lift my index finger an inch off the bed.

That small movement of my finger started the process of my recovery. After a few more days of being in the ICU, I was transferred to a “rehabilitation” center.

I thought everything was going to go back to normal instantly, but I still had to go through more struggles. Being placed in a rehab center that is full of terminally ill people changed you, at least to me it did. All I could remember thinking was that this is where I was going to spend the rest of my life. A few more months went by, and I could finally move my arms, both my voice and lungs were coming back with help of my trach.

Progress was painfully slow. Just when I thought my limbs were coming back, I’d suddenly be struck with intense pain and vomiting. However, that physical pain was nothing compared to the day which my mum told me she had been diagnosed cancer. Despite my small amounts of progress, I felt so helpless and broken. While she was getting chemo, I was still stuck in a hospital bed, unable to help her.

Then my parents told me that a person who had the same disease as me wanted to visit me. I was amazed, as I thought that I was one in a million. It was at this point I met Lizz and she told me about this GBS group, where there are thousands of survivors who were able to live normal lives after getting this disease. Many survivors from around America wrote letters to me, all of which I still have and look at when I feel like there’s no hope.

After a few weeks, I was able to move my arms and legs with the help of physical therapists. My pain was still at its peak, but I pushed myself and was eventually able to have my trach removed and start eating without my feeding tube, as well as using a wheelchair. I remember everyone being so happy, and my friends fighting for me to go outside with them. We were finally allowed to take a trip outside to the nearby store, and I cried so much. I hadn’t seen the sun or felt the wind on my face in months, It was the most emotional point and I felt so motivated to get out of that nursing home.

After more physical therapy, I was told that I would be transferred to the Sharp main campus rehab center. It was a huge upgrade from the other rehab and nursing home center. I had my own room, the therapy was more intense but I felt much more comfortable despite still being in pain. Another positive was that my mum was across the street getting chemotherapy, so I was able to visit her almost every day.

At this point, my body had pretty much recovered, apart from the drop foot I had in my right foot, which is usually what most GBS patients get stuck with. My left leg was severely contracted, which I had to have surgery on. I was finally able to go home in March. I remember seeing my whole family, my dog jumping into my lap as I sat in my wheelchair, and my cat looking confused as to wondering where the heck I had been.
I continued physical therapy at home and then felt confident enough to continue therapy by myself, while going to outpatient at least twice a week.

Now we fast forward to today. I am able to walk using a cane and a leg brace, my mum is in remission, and I am in far less pain compared to when this all started. My memory is still blurry when I try to remember more about my experience, but I wanted to share my story as it has changed my outlook on life and how we spend our time on this earth. I hope to help more people who were in my situation, either being a GBS Survivor or someone in my age group who has been hospitalized for such a long time. I believe that I survived this disease for a reason, to educate people on this illness and tell my story as a young disabled person.

– Paige Duffy