THE GUILLAIN BARRE SYNDROME

ME AND THE GBS

I,D.santhanam, aged 62 years, Retired Electrical Engineer from India, wishes the readers and their family .

One fine morning in November, it was raining. I was just waching the water droping from leaves of the tree in front of my house.

Tears were rolling down as i was thinking about my only son whom I lost three months back in a car accident at the age of 31.

I was depressed. In the evening as usual I have gone for a walk. I found weakness of both lower limbs. After dinner I slept on the floor.

The next day morning, around 5.00 AM I was trying to get up from my bed. But, i could not. My Wife lifted me up. standing was very difficult.

My son-in-law immediately rushed me to a near by hospital. Nerve conduction study was carried out and it revealed demyelinating motor radiculo neuropathy.

It was diagnosed to have acute GBS (Guillain Barre Syndrome). Even by next day, as it was getting delayed in starting treatment since the specialist was out of station, my son-in-law took a wise decision to shift me to the famous hospital. By this time both Lower and Upper limbs and trunk movement arrested and

I, developed breathlessness. I was admitted in CCU and intubated. Also, I had bilateral facial palsy. I have been administered IVIg 20gm for five days.The cost of IVIg is about 3 lakhs INR. These things i have learnt afterwards only.

I was just lying like a wooden log.I could not speak since i was under ventilator support. I did not know whether it is day or night. Batch of doctors will visit , see see my case file, look at me and the monitor and go. days have passed. Suddenly,i have noticed a big hose connected to my throat. On later date my wife told that, since i am in need of continued ventilatory support for longer duration, Tracheostomy ( making a slit in the throat and inserting a tube in the wind pipe) was done on the fifteenth day after admission.When i move my head the ventilator hose will press my neck and give lot of pain.

Every day, early morning 4.30 Am ,they will clean my body with cold water which will be very chill since it is winter. some times, i may be shivering. They won't bother. Liquid food was given thro, a pipe connected through Nose. The visitors to other patients will see me sympathetically. I felt as if i am a zoo animal in cage (My cot with doors). daily three times they will clean my body by turning me right and left side by bending my legs. Enormous pain will be there. i could not cry or shout since i could not speak. Chest physio was given 4 times a day. Strong physiotherapists will beat and squeeze my chest. I have to bear the pain silently.

Suction of phlem will be carried. If i say something by signal the trainee Nurses won't understand and go away. Because of communication trouble, at times i had faced lot of difficulties.

Due to facial palsy my right eye could not be closed and was open all the 24 hrs.At times all lights and fans and people will be doubled while looking at.

My consultant Neurologist and his assistant doctor daily encouraged me to lift my arms and legs.I will try but in vain. In the third week my right arm and left arm movement has come, followed by right leg. Since there was no significant improvement, second course of IVIg was given. .During this period ,I lost hope and fear of death loomed over me. Daily,I prayed to god, to save my life, to help my wife in future as already he has taken back our only son. My wife will daily encourage me to breath my self.

I should specially thank my son -in-law and daughter who have given me courage and self confidence and prayed to God to save my life

I was fighting with GBS. whenever ventilotor was removed, I was afraid I may Die. Gradually, improvement in breathing has come.

Atlast, after 35 days ventilator was disconnected.

As the hospital expenditure has swallowed nearly 16 lacks INR like tsunami,( borrowed from relatives and friends), my wife decided to shift to some other hospital ,since medications were over and active physiotherapy only has to be given.

In the new hospital, Treacheostomy tube was changed to enable to speak and take oral mashed foods, in addtion to RTF feed.

TO make the right eye closure stiches were made by eye lid specialist.

After 90 days ,the secretion of phelm and cough stopped and hence suction stopped. On 105th day, the TRACHEOSTOMY DECANNULATION DONE. AND THEFOOD TUBE through the nose removed. I, felt like a free bird flying merily. My wife was very much happy and relived of her tensions. MY co-brother, sister in law and their wards provided shelter and care for further two months. I was given physiotherapy by an experienced Dr. at home and Now, I am walking with walking stick.

But, pain, stiffness, tigling in toes, fingers and ankle are severe at night times. Hope , I may get out of these sufferings in few months with the help of GOD.

I hereby convey my thanks to all my relatives and their wards, and friends who have extended financial and physical SUPPORT to my wife at this critical

and grave situation. The total expenditure around 22 lacks INR.

THE GREAT BATTLE BETWEEN ME AND THE GOST GBS ENDED IN A HAPPY NOTE.

BEST WISHES TO YOU ALL

D.SANTHANAM

INDIA

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