On the night of November 16, 2012 I was driving an hour south of my hometown to a Carrie Underwood concert. During the drive my feet began to feel tingly, like they were falling asleep. The entire night through the concert I tried to wake my feet up, but no luck. Foolishly, I thought this was a pregnancy symptom, as I was 10 weeks pregnant at the time. When I woke up the next morning, the tingling had spread to my hands and arms. It was the second day I woke up and was unable to walk up my stairs, my legs were too weak. It was that day I was admitted into the hospital and would spend the next 84 days away from my three young children, Lauren (4 ½), Sophia (almost 3), & Michael (almost 1).
By the evening I was diagnosed with Guillain-Barre Syndrome and would start my first round of Plasmapheresis the next day. By this time, the pain had taken over my body, my husband was carrying me to the restroom and repositioning me in my bed just about every 10 minutes. I would go into surgery first thing that morning to have my port placed. This procedure was very scary for me, not only because of the procedure itself, but for the fact I was 10 weeks pregnant and needed to be awake for the procedure. I still had no clue of the road I was about to take, this would be the first of multiple surgeries to come. Because I was in my first trimester of pregnancy, the only pain medicine I was given was Tylenol. This was not touching the pain. It was also ineffective during the time I had my Plasmapheresis treatments because they would remove my blood to try to clean it.
I struggled to keep a consistent blood pressure during these treatments. It was during the second round, two days later, as I returned to my room that my blood pressure dropped to 60 over 30. I was with my husband and twin sister. I remember hearing them yelling at me to stay with them, yelling at the nurse to help me and then my sister ran to the hall for help. This was early morning and my next memory starts later that evening when I was now in the ICU. My husband came to me and said my breathing was getting more labored and my blood pressure was not as stable as they would like, therefor they were going to be airlifting me to the University of Iowa Hospitals where I would be admitted into the Medical ICU. I am glad they did, because it was just four days later when my lungs collapsed and I was intubated and put on life-support.
I spent 50 days in the MICU before being transferred to Mercy Hospital in my home town for 5 weeks of inpatient rehab. During my days of ICU, I celebrated Thanksgiving, Christmas and New Year’s. I missed my son’s first birthday and my daughter’s 3rd. It wasn’t until a month after being there that I would begin to start gradually getting off life support. My heart rate dropped several times, one time stopping for 8 seconds. Doctors contemplated putting in a pace maker, but I was able to show enough progress to avoid that. The pain I had was excruciating. The type of pain that makes you want to rip your arms and legs off. My body temperature was never consistent. I remember days when I had the room temp down, a portable fan blowing on me and a cool washcloth on my forehead, while my sister sat by my side with her winter coat, hat and a blanket on!
The never ending pain was a struggle to deal with, especially when I was intubated, then trached unable to communicated beyond mouthing things. But nothing was worse than the emotional toll this illness took on me. Days when my children could come visit were both my worst and best days. My husband and I first worried about how it would affect them seeing me with so many things hooked up to me, but their presence was great therapy and motivation for me to give everything I had to get better. The hardest part was when they left, not knowing when I would see them next, worrying about how scared they were, and not being able to do one thing to support them. Because I was in such a serious state, my husband never left my side, how scary for them to have us both gone.
I know this may sound surprising, but the last 5 weeks in the rehab hospital were the most difficult for me for my hospital time. The physical struggles, I was only able to sit on the side of my bed for a few seconds with help, seemed never ending to me, while the emotional part was taking a huge toll on me. Even though I felt everyone else’s lives were ‘back to normal’ because they now got to sleep in their own beds, and I was confined to a ten by ten room unable to move my legs, needing to call for assistance just to roll to my side in bed, they weren’t. My room was covered with pictures of my family. Yes, these pictures were my motivation, the most recent picture of my three little ones was taped right on my bed so I could see them and keep myself motivated. But I also became sad at times looking at those pictures. They were pictures of me, healthy, playing with my kids, carrying them, having them sit on my lap. At that moment, my legs were so sensitive, my bed sheets couldn’t even be tucked in at the end and I couldn’t even lift my own arm, let alone my child!
I not only had the best physical therapy support, I was also given support to get my through my emotional struggles. About half way through my five week inpatient rehab, I was to have my 20 week ultrasound. I was just a nervous wreck about it. Once I was put on life-support, no one spoke of my pregnancy. I had fetal heartrate checks every few days, but that was it. You can imagine the relief and joy my husband and I felt when the technician gave us a good report on our daughter, everything seemed to look good.
I was amazed at the progress I was able to make during my 5 weeks of inpatient rehab. I had learned to eat, talk, dress myself, and even walk short amounts in my time there. There wasn’t a happier day then the day I was to be discharged and FINALLY be home with my family!
Home was difficult, my living room was my new bedroom, as I wasn’t able to get up my steps yet. Three children under the age of 4 is a lot of work, and my husband added a 4th…ME! Within a month of being home, my outpatient therapy had improved me to walking with a walker, and soon a cane. 7 months from my onset, my daughter was born and she was a healthy baby girl. At that time I was walking completely independently. We joked, because it was a contest of who was going to walk on their own first, mommy or Michael (my 1 year old), and I won!
It was now summer, and I had a much better handle and outlook on things. Instead of being sad I couldn’t hold my sons hand as he walked unsteadily, kick the ball with the girls in the yard, or teach my oldest to ride her bike, I appreciated being alive and able to watch my husband play that role for the time being. I am three years out now and there isn’t anything stopping me with my children. I now enjoy my role as a liaison for the GBS-CIDP Foundation and hope I can support other families stricken with this scary disease. I will have to say, the quick diagnosis, fabulous healthcare I was provided, and amazing physical therapist are all the reasons why I have recovered so well.