Patient Stories

Amanda’s Story

My name is Amanda Guerrero.  Back in 2011, I was 24 years old, was living in an apartment with a friend in Santa Monica, and just starting my career as a Neonatal Intensive Care nurse at UCLA Medical Center.  I was in the prime of my life.  This was all about to change.  On November 6, 2011, I started having a terrible backache.  I struggled through two night shifts at work while at the same time having tingling sensations in my arms and legs and losing the sensation of hot/cold.

On Tuesday morning, November 8th, when I left work at 7:00 a.m. my legs were so weak, I could not climb stairs.  I called my parents and they told me to walk directly to the emergency room at UCLA but instead I was stubborn and started to drive home.  I kept telling myself that this probably only the flu and I would be so embarrassed to go the Emergency Room if that were the case.  By the time I got home to my apartment, I knew something was definitely wrong so I went to the nearest Emergency Room in Santa Monica.  They released me after drawing blood and referring me to a neurologist who couldn’t see me for 10 days. They told me I was probably just stressed and tired. I immediately went to bed as I was exhausted from working two night shifts.

I called my mom early the next morning as I couldn’t walk unassisted, still had the backache, and was nauseous. She picked me up and took me to the Emergency Room at UCLA.  After countless tests (including an MRI and Lumbar Puncture), I was tentatively diagnosed with guillain-barré syndrome.  The doctors told me of all possible scenarios (brain cancer, MS, etc.) GBS is the most treatable and they had high hopes for a full recovery.  However, they also told me that things were going to get worse before they got better.

I was admitted to the hospital and the next morning a dozen or so doctors (UCLA is a teaching hospital) evaluated me and game up with a game plan, five courses of plasmapheresis.  By this time I had very little feeling in my arms and legs.  I could walk a few steps with assistance but it felt like my legs were bricks.  I also had a terrible headache, loss of bladder control, and the back pain got worse.  They took me into surgery to insert the intra jugular pic line which is how they would administer the treatment.  I came out exhausted.

They started my first treatment on November 11th.  I got a horrible headache, my blood pressure dropped and my heart rate skyrocketed. I was immediately put on a heart monitor. I was not allowed any pain medication stronger than Tylenol because GBS is a neurological disorder.

After my second treatment, I again had a terrible headache, couldn’t keep any food down, and fainted.  They thought I had a seizure or stroke so they immediately took me for a brain MRI.   Thankfully, there was no evidence of this but now I was losing the feeling in my face.  They took a day break from the treatment.  After the 4th treatment, my blood was drawn and I was told I needed a blood transfusion because my clotting ability was not there.  I did not want the 5th treatment but the doctors insisted it was helping.  I was so afraid of losing my ability to speak, eat and breathe because both sides of my face were tingling now.  I also had an EKG since my heart rate was way too high.  The EKG came back okay too so they told me that it was just part of the disease.  Just sitting up for a few minutes made me feel like I had run a marathon.

After my 5th treatment and another nerve conduction test, it was decided I should start a series of four IVIG treatments.  The doctors at this point did not like the results of my blood work and decided I needed another Lumbar Puncture.  At this point, I had lost 20 pounds and was down to 100 pounds.  Meanwhile the doctors kept taking vials of blood because they wanted to make sure I didn’t have any other virus.  I was also put on anti-viral medications. Everything kept coming back negative.  I had not been sick so after weeks of tests, the doctors believe I contacted GBS through my recent flu shot.

Over the next couple of days things got worse.  I now could not pronounce all the sounds and people had trouble understanding me.  I was tired, sore and exhausted.  Fortunately, I have very supportive parents who cheered me on every day.  In fact, either my mom or dad was there night and day for me the entire stay at UCLA.  They would encourage me to eat and would run all over Westwood to get me anything that sounded good to eat.  Gradually, I started to be able to sit up for short time periods without the heart monitor going crazy.

After a couple of weeks, I was transferred to UCLA’s inpatient rehabilitation center where I had physical therapy, occupational therapy, speech therapy, recreational therapy and massages.  Slowly I started to see light at the end of the tunnel. On Thanksgiving, I was able to go outside for the first time in a wheelchair and I made a goal with my therapists that I would be discharged from the rehab center before my 25th birthday (December 14th).  Thankfully, I did make this goal.  I did have to give up my apartment and move back home with my parents.  I started outpatient physical therapy and was off of work for about 6 months.  Gradually I started to feel like my old self and now (four years later) have just a few residual effects.

I feel like I was one of the lucky ones as I was diagnosed and recovered relatively quickly and never had to have a feeding tube, tracheotomy, etc. I also had access to the best medical care.  The Infectious Disease doctor at UCLA had Guillain Barre when he was a medical student and looked perfectly healthy.  He was definitely a source of great hope and encouragement.  My advice to anyone who is suffering from this frightening disease is to find a recovered GBS patient to talk to.

I’ve heard doctors and nurses make the worst patients.  This could not be truer in my case.  As a nurse, I was use to taking care or others and being in control.  This was a very difficult and humbling experience.  I had no control and completely lost my independence.  Every day, I would ask God “Why did this happen to me”?  I realize now that it has made me a much more compassionate nurse.  I strive daily to be the best Neonatal Intensive Care Nurse I can be.