I TRY TO LIVE ONE DAY AT A TIME, BUT SOMETIMES SEVERAL DAYS ATTACK ME AT ONCE – ASHLEIGH BRILLIANT
Monday, 13 May 2013
- Tip of middle finger on right hand started going numb while driving to work.
- By late afternoon the thumb, index and middle finger on both hands were totally numb but usable and strong.
- Suspecting a pinched nerve (!) I made an appointment to see a chiropractor the next day.
- Other than having anunderactive thyroid, my only recent health issue had been a 24-hour tummy bug the previous Sunday/Monday.
Tuesday, 15 May
- Awoke at 3am and realized that both hands were numb and floppy, and fingers were very weak.
- My husband dressed me and took me to a nearby hospital, where I was seen by a casualty doctor within 20 minutes.
- Xrays of my neck and spine didn’t show anything out of the ordinary, but I was having difficulty standing by the time we returned to casualty.
- Panic was starting to set in. We didn’t have a clue what was causing the weakness but my inner voice was saying “this is bad”.
- I was admitted to a medical ward and referred to a neurologist (Dr A).
- At lunch time I tried to stand up to walk to the bathroom, but dropped to the floor and couldn’t even put my hands out to break my fall. One of the other patients rang her bell to call for help.
- The ward sister came to see me after I was put back in bed. She decided that I should have a urinary catheter as I couldn’t lift myself onto a bedpan.
- Turning myself was impossible now so the nurses and care workers turned me every 3 hours. Some didn’t believe that I could feel pain and be paralyzed at the same time and berated me for not helping them. Ignorance about GBS symptoms and treatment would be a recurring problem during my recovery.
- My “nurse” brain went into overdrive. What was causing this? Did I have a brain tumour? Was it a form of Motor Neurone Disease? Was my brain or spinal column inflamed?
- Dr A suspected GBS during her initial examination but a nerve conduction test (NCT) showed that my nerves were conducting, so other tests were scheduled for the next day.
Wednesday, 16 May
- A lumbar puncture, numerous blood tests, and a CAT/CT scan of my cervical spine were conducted: no abnormalities found.
- A drip was inserted in my arm and treatment with an intravenous corticosteroid was commenced as a precaution.
- While eating supper I lost the ability to swallow food. Dr A was called and a second NCT showed that the nerves in my arms and legs weren’t conducting. I had Guillain-Barre Syndrome. My auto-immune system had turned against me, after the tummy bug the previous week, and was destroying the myelin sheath covering my nerves.
- Physiotherapy, to prevent joint stiffness and prevent fluid build-up in my lungs, also commenced that day. I would see Jeff (not his real name) twice a day, every day, until I was discharged to a rehabilitation hospital. These physio sessions would become the highlight of my day as our conversations – some silly and humorous – would take my mind off living with GBS. Jeff started treating me again at home after I was discharged from Rehab.
Thursday, 17 May
- One more test – a CAT/CT scan of my brain to eliminate any coexistent physiological causes of my paralysis – was done and I was transferred to the ICU.
- Dr B, a specialist physician, took over my day-to-day treatment for the next 115 days.
- Electrodes on my chest, a temperature probe in my groin, an oximeter on my finger (to measure the amount of oxygen in my blood), and blood pressure cuff on my arm would become constant reminders that my body was malfunctioning. The cuff inflated automatically every 15 minutes and the pressure on my upper arm, as well as the constant sound of the monitor beeping above my head, would sometimes become unbearable.
- Drs A and B explained the syndrome’s progression and prognosis to my family and me. I wanted to die at that point. The thought of being paralyzed and bedridden for months on end was too much to cope with. My doctors told me to not give up; to be strong; to patient. A tall order indeed, especially for someone who had always been busy and had a list of to-do’s for every day of the week
- An air/ripple mattress – which assists in preventing bedsores – was brought in and inflated on the spare bed next to me, after which a team of nurses pulled me across on a sheet. I immediately felt far more comfortable.
Friday 18 and Saturday 19 May
- My blood pressure became elevated and antihypertensive medication was prescribed.
- A CVP line was inserted into my jugular vein, the corticosteroids were stopped and the first unit of a 5-day Polygam (an immunoglobulin) treatment was started.
- I felt ill and uncomfortable most of the time, experienced pains in different parts of my body and legs due to the nerves being inflamed, and started losing my voice on Saturday night.
- When my family visited me I could see worry in their eyes. We were all in a state of limbo not knowing what would go wrong next.
Sunday 20 May
- Early in the morning I realized that I wasn’t breathing properly, called my nurse and managed to say “I can’t breathe, I can’t breathe” before slipping into unconsciousness.
- My last thought was that I was dying. I felt at peace. My life did not flash before my eyes. I just wished that I’d been able to see my husband and children one more time.
- I don’t know how much time passed before I woke up, but when I did I discovered two tubes in my mouth: an endotracheal tube which was connected to a ventilator as I could no longer breathe for myself, and an orogastric tube through which I would be fed and receive medication.
© louisehasgbs 2014. All rights reserved.
Disclaimer: This is a personal account of my experiences. Discuss all treatment, therapies, medication, diet and supplements with your own doctor and/or specialist.