Monday, April 1, 2013

My struggle with CIDP- an autoimmune disorder


I was thirty three and on top of the world when the niggling worry started. It was quite a small worry in the beginning. I found that my hand would tremble when I was holding up a spoon, a plate, a glass of beer etc. My original self-diagnosis was that this was caused by work related stress. When one becomes a country manager at 31, apart from being on top of the world, the by-product is stress. And when at 33, I had moved into a telecom operation as head of sales and marketing, the effect was approximately like moving from the frying pan into the fire.

But stress did not explain the loss of balance I used to face while climbing down stairs, which was a second symptom that had started developing.

But being very busy climbing the corporate ladder (I became one of the youngest COOs in a telecom operation in couple of years), I ignored the symptoms. Finally, when I did meet a doctor, he examined me and said I was perfectly all right.

In the next two years, the condition quickly worsened. My fingers started losing their strength and it also became difficult for me to climb up stairs. The COO of a state telecom operation was a reasonably high profile position. I would be invited for events etc. and would feel a cold clammy feeling at the pit of my stomach if this involved climbing up on to a stage. I would be petrified of falling and would pray to god every step of the way. (Imagine being the chief guest at the Cochin Naval Ball and spending the whole time worrying about how I would climb up the stage instead of admiring the beauties I was judging.)  I also found it difficult to do anything which required fine motor coordination, like putting on buttons. I had to stop driving, an activity which I loved.

Over the next 4 years, the condition steadily worsened and I had to move roles so that I could still manage to deliver on my job. In the meanwhile, I had couple of more wrong diagnoses from doctors and was told that the condition was genetic and without any treatment.

It was then that my uncle Dr. Balakrishnan, a renowned doctor, helped me set up an appointment with the HOD of neurology at Amrita Institute in Cochin. Dr. Ananthakumar examined me and indicated that the condition was not congenital but was an acquired disorder called CIDP. To be 100% sure, he did a nerve biopsy. While waiting for the biopsy result, one day I contracted a viral fever. This triggered an acute case of the condition and I was laid up for about nine days. I could not lift my hands, sit up or even talk. Luckily, an angel by the name of Dr. Monica Thomas, whom I had never met before and who was referred to us by Dr. Ananthakumar, took the trouble to come all the way to my house after a full day’s work. She took one look at me and confirmed the condition as CIDP. She got me admitted in a hospital.

CIDP is an autoimmune disorder- Chronic Inflammatory Demyelinating Polyneuropathy. My own immune system was attacking my peripheral nerves and they were losing their conductivity. This in turn was making my muscles useless and over a period of time, they were fading away. For the first time in seven years there was a tangible condition that I could fight. The standard treatment for the condition was to take an intravenous medication called IVIG. A full course was 2mg/Kg of weight which in my case worked out to 160mg. This had to be taken over five days. It cost 6 lacs!! An enormous sum. But at the end of the five days, I was way better and over the next week, my body became almost completely fine. I was better than I had ever been for the previous five years. I was on top of the world. I ran up ten flights of stairs in my office, cooked pizzas for my kids and buttoned up all the shirts I wanted! But in 45 days, the condition went crashing down again. The effect of the magic potion had worn off.  The doctor had not warned me of this. For me, who thought the whole issue was behind me, this came as the rudest shock. I met the doctor again. He suggested I start on steroids. Steroids would suppress my immunity, and this would lead to an improvement in the condition. He also recommended another dose of IVIG. This time I took a fifth of the first dose, since we couldn’t afford to spend on a complete dosage.

Over the next 3 years, I took IVIG once every two months. The effect kept waning and I had to take it even more frequently. The dosage of steroids had to keep increasing from 30mg per day to 40, 50, 60 and finally 80. I bloated up like a balloon and put on about 14 kilos. My eyesight started fading (an effect of the steroid and I finally had to undergo a cataract operation). In spite of all the medication, the condition steadily worsened.

Before the condition, I had always walked with a spring in my steps. Now I could barely lift my legs. I couldn’t lift any weight. My wrist started flopping – it couldn’t even lift the weight of my hands. My left foot started dropping – the ankle muscle stopped responding. I had to lift the leg up high and place it forward to avoid tripping over a flopping foot. It became impossible to button up my shirts. When travelling, I had to wake up at 5.30 am for an 8 am meeting, since it would take me 90 minutes to put on five buttons. Finally I had to stitch special shirts with concealed press buttons with dummy buttons stitched on outside. The worst was when I had to go to the urinal. It would take time to find the zip with my nerveless fingers. And often, after the job was done, it would take as high as ten to fifteen minutes to zip back up.

Through all this, there were a few important rules I created for myself.

  •  Never ever think of what could have been.
  •   Always be cheerful and be the provider of cheer – at home, at work...
  • Actively seek solution instead of moaning about the problem.
  • At work, always do more than what is expected of you.
  • Thank god every day for a wonderful family, great friends, relatives and above all, for my unconquerable spirit.

I would keep pushing myself to walk, exercise, do yoga etc., while continuously searching for solutions on the web.

Finally on one of my internet researches, I came across a clinical trial that was going on at Northwestern Memorial Hospital in Chicago. I reached out to them and the nurse got back immediately with all the details of the program. We also heard from her that the doctor, Dr. Richard Burt, the head of the Division of Immunotherapy & Autoimmune Diseases (DIAD) at Northwestern was slated to come to India for a talk. (http://www.stemcell-immunotherapy.com/index.html)

We attended the talk and he was kind enough to have dinner with us. He was as humble and down to earth as his achievements were lofty and life changing.

Over the years, he had treated many of the autoimmune disorders for which there were no real cures. These included Multiple Sclerosis (MS), Diabetes, Lupus, Crohn’s, Rheumatoid Arthritis, Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Phemphigus, Dermatomyositis, Devic’s, Myasthenia Gravis, Polymositis and Scleroderma. He had given life back to many patients without any hope. Jayu (my wife) and I discussed and decided it was worth going for this. The procedure was ‘Autologous Nonmyeloablative Hematopoietic Stem Cell Transplant’. A mouthful, I agree! But what it meant was usage of one’s own blood cell producing Stem Cells to regenerate one’s blood cells. The term non-myeloablative meant the dosage of chemo was not very aggressive.

The whole evaluation and treatment had to be in Chicago, spread out over 10 weeks.
For Jayu and I, the trip was in a way a nice holiday too. We enjoyed the stay at Chicago, right in the middle of the Magnificent Mile. Even though there was so much uncertainty, it was also a time of intense hope. The fact that my classmate couple, Manish and Radhika and another classmate Sridhar and his wife Vasudha made every effort to make us completely comfortable in Chicago helped hugely. Skype to our parents and children and family also kept us connected to loved ones and their best wishes and prayers.

The first 2-3 weeks was for evaluation- to make absolutely sure that the condition was CIDP. This was followed by mobilization – where a dose of chemo was injected into the body to stimulate production of Stem Cells. About ten days later, sufficient quantity of Stem Cells were then harvested and kept aside. Then four weeks later, the actual treatment started. This included injecting chemo and certain other substances into the body to completely knock out the entre immune system. After this, the Stem Cells were re-injected into the body and within about ten days, I was discharged.

The staff at Northwestern was amazing. The nurses were the most professional I had ever seen in my life. Even in the hospital, the doctor was considered to be a miracle worker. But more than anything, he was a wonderful person: sensitive, empathetic and extremely knowledgeable.

By the last four days in the hospital, I could start feeling my body responding. My will, which was long shackled inside an unresponsive body, exulted. I embarked on a rigorous exercise routine.

Back home, over the next year, I set myself a blistering target to recover my lost muscles. I created a target sheet with daily increasing targets for the next six months for 28 different muscle work outs. Then, every day I pushed myself to do better than the target.




The fact I was writing my first book – Oops the Mighty Gurgle gave me a huge mental push. The book was so wacky, funny and totally in the realm of the absurd that writing it kept my spirits soaring high. I jokingly tell my friends that it was a mix of the chemo and the rat and rabbit extracts that were pumped into me that made me write such a crazy wacky nutty novel. 



                                                 www.oopsthegurgle.com

I have been trying ever since to get some of the major hospitals in India interested in the treatment and collaboration with Dr. Burt so that many more persons could have access to this life changing treatment. I have run up against walls, but will not stop trying. In the meanwhile, I would like to spread awareness about this treatment to as many people as possible. If they can afford the treatment (it is expensive), they should consider this seriously.

Today, I have almost completely regained most of my motor abilities. I can button up my shirts, drive a car, lift weights, travel alone, climb up steps without holding on to railings and can lead a pretty much normal life. I still can’t run or type very fast. My handwriting still sucks. But I am, to use a slang, rocking. I am on my second book, am consulting in the education domain and give motivational talks based on my life’s experiences.

I continue to thank god for my wonderful wife, my lovely kids, my relatives, my friends, and my never say die spirit. But most of all, I thank god for Dr.Richard Burt and the wonderful work that he is doing, saving hundreds of lives every year.
I can be contacted on my email ID rvallath@yahoo.com and will be delighted to extend whatever help I can to anyone who is suffering from any autoimmune disorder. 

29 comments:

Sandra Mahadwar said...

RamG..amazing to read all that you have been through. Glad all is well and looking forward to more whackiness.

RAJI MUTHUKRISHNAN said...

A lot to have to go through at such a young age. I admire your determination and courage to fight the problem, and the desire to share your knowledge (solution) with others. Wish you all the best for a healthy stress-free future.

Param Ram said...

HI,very inspiring....it needs a lot of grit,glad all is well...Thanks for sharing.

Shravani said...

You are truly an inspiration RamG! Your positivity and grit is a great lesson for me :) Cheers! and Wishing you a fantastic time ahead!

Prateep Sen said...

RamG - I am really glad you bounced back from the illness... and bounced back, how? By authoring a book! Congratulations and best of luck in the future... Prateep

Prateep Sen said...

RamG - I am really glad you bounced back from the illness... and bounced back, how? By authoring a book! Congratulations and best of luck in the future... Prateep

Prateep Sen said...

amG - I am really glad you bounced back from the illness... and bounced back, how? By authoring a book! Congratulations and best of luck in the future... Prateep

Prateep said...
This comment has been removed by a blog administrator.
Gaurav said...

RamG... Very touching and to know that we were Working together during that time briefly and all that we could see was your high energy and contagious smile.

RajD said...

RamG, wonderfully inspiring story (no I'm not referring to Oops! :)) thank you for sharing your experience -you're truly a role model. Wishing you good health, success and happiness ahead.God Bless

Sonali Sharma said...

RamG... this is truly inspirational! Hope a healthy and happy life ahead to you.
Looking forward to your new book.

Amit Dhar said...

RamG, it is really good to know about your recovery and see your picture as well. God Bless !

anudita kapoor said...

Ur story is really moral boosting.those who undergo such situations can realise ur feelings.thanks for sharing urstory it certsinly helps others to fight their battle.god bless u.

athi.s said...

" my unconquerable spirit." ..... THANKS FOR SHARING///

krysler said...

Great one Ram. I hope you are doing well. No doubt that you have instilled faith and courage in the readers mind. I am sure you will succeed in getting hospitals / doctors to collaborate with the doctors who assisted you bounce back.

All the best.

prs said...

RamG, hadn't seen this "before" pic earlier... wonderful blog post, love your "rules", applies to anyone - with/ without health issues - more inspirational, that you walk the talk every second.

Angad Singh said...

Extremely inspiring, despite what you were going through, I always saw you smiling and displaying positivity.....hats off Sir...

Angad Singh said...

Extremely inspiring, despite what you were going through, I always saw you smiling and displaying positivity.....hats off Sir...

Rajesh Sachdeva said...

Very inspiring, hats off sir for your positive attitude. i admire your courage and zest for life.

Rajesh Sachdeva said...

congrats ramg on a successful outcome to a trying time in life. hats off to your positive attitude and zest for life. congratulations on the book. all the best

Umesh K. Dubey said...

A stunning read - left me breathless and numb. Ram - congratulations on your wonderful recovery. Let me know when you come down to Calcutta - would love to meet you.

Kumta said...

Hats off to you and your spirit Sir...

Ramans Effect said...

RamG - very humbling to read your account. You are one of the bravest person I have ever met. You have emerged victorious. Makes one appreciate life more. Wishing you all the very very best

KC said...

RamG, an inspiring read indeed.. Its great that you had the will power to overcome a difficult situation..& even more appreciable is the need you felt to share with others for their benefit.. May God be with you always..
Chitra Pillai

Ramgopal Vallath said...

To all my friends and well wishers who have reached out and had a kind word for me - thank you so much. It is the encouragement from people like you that has kept me motivated even in the worst of times.

Dean George said...

As the saying goes"It is not how many times you fall, but how quickly you get up and run again" you are not only an inspiration but true to the saying......get up and RUN again!!!!

Gopal Prabhu said...

Ram,

Good to know of all the progress that you have made since the trying times. Cannot be happier for your wife and kids who had to go through these trials along with you.

With best regards.

Sameer Seth said...

While this is an inspiring story , indeed . This also states a commitment level and stability of an individual's mental strength . Truly commendable ...

aditya kiran said...

Hi RamG Vallath, my father is suffering from CIDP, he had 3 courses of IVIG, 50 mg of steroids for over 3 and half months. We used mycept for about 3 and half months and currently it has been changed to Azoran but it seems it takes atleast 2 months to take effect. He has put on around 7 kgs. Currently he's experiencing little deterioration again. Can I please contact you regarding the medication or the treatment that helped you. I couldn't find your contact details, so can you kindly mail me your details to aditya111s@yahoo.co.in. That would be of great great help, many thanks in advance.