My struggle with CIDP- an autoimmune disorder (Season-1, Episode-1)My struggle with CIDP- an autoimmune disorder (Season-1, Episode-1) https://ramgvallath.com/wp-content/uploads/2021/08/Season-1-Episode-1.jpg 635 454 ramgi@user https://secure.gravatar.com/avatar/ce46ffe3044831cca29cedcddd6c594f?s=96&d=mm&r=g
The pictures taken before my treatment and after six months of intense body rebuilding post my treatment.
This post was originally written in my blogspot blog on 1st April, 2013. I am sharing this now so that I can give an update in episode 2. I was 33 and on top of the world when the niggling worry started. It was nothing serious 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 India in a 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 stairs. The COO of a state telecom operation was a reasonably high profile position. I would be invited to various events and would feel a cold clammy feeling in the pit of my stomach if this involved climbing up onto 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 started finding 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 four years, the condition steadily worsened and I had to change roles so that I could still manage to deliver on my job. In the meanwhile, I had a couple of more wrong diagnoses from doctors and was told that the condition was genetic and untreatable. 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 even 1 cm, 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 to a hospital. CIDP — Chronic Inflammatory Demyelinating Polyneuropathy — is an autoimmune disorder. 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, the muscles were wasting 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 2g/kg of weight which in my case worked out to 160g. This had to be taken over five days. It cost Rs.6 lacs!! But at the end of the five days, I was feeling much better. Over the next couple of weeks, my body was on the slow journey towards recovery. I was better than I had ever been in the past five years. I was on top of the world. I ran up 10 flights of stairs to my office, cooked pizzas for my kids, and buttoned up all the shirts with a vengeance! But in 45 days, the condition came 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 truncated dosage due to financial reasons). 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 put on about 14 kilos and bloated up like a balloon. 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 found it impossible to lift even small weights. My wrist started flopping – it lost all articulation. 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 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 the outside. The worst was when I had to go to the urinal. It would take time to find the zip with my nerveless fingers, while my bladder was screaming at me to go! And often, after the job was done, it would take as much as 10-15 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 and at work
- Actively seek solutions instead of moaning about the problem
- At work, always do more than what is expected of me
- Thank God every day for a wonderful family, great friends, relatives and above all, for my unconquerable spirit.
I I would keep pushing myself to walk, exercise, do yoga, etc., while continuously searching for solutions on the web. Unfortunately, fate seemed to think I needed a few more knocks. At work, I had continued to take on extra responsibilities and work long hours, even though I could barely walk (I had to use a crutch) or use my fingers and hands (typing was a laborious process). One fine day, I got sacked for the unethical behaviour of some subordinates four levels below me. Life couldn’t get worse. Fortunately, I had the ability to seek solutions instead of wallowing in problems and quickly found myself another job. Also 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 and Autoimmune Diseases (DIAD) at Northwestern was slated to come to India for a talk. 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 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), Pemphigus, Dermatomyositis, Devic’s, Myasthenia Gravis, Polymyositis and Scleroderma. He had given life back to many patients who had lost all 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 our stay in 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 classmates, Manish and Radhika and another classmate Sridhar and his wife Vasudha made every effort to make us completely comfortable in Chicago was an immense help. Skyping with our parents, children, and family also kept us connected to loved ones, their best wishes, and prayers. The first two to three weeks were for evaluation — to make absolutely sure that the condition was CIDP. This was followed by mobilisation — where a dose of chemo was injected into the body to stimulate production of stem cells. About 10 days later, sufficient quantities 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 entire 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. My last four days in the hospital, I could start feeling my body responding. My will, which had been long shackled inside an unresponsive body, exulted. I embarked on a rigorous exercise routine. Back home, I spent the next year setting 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 workouts. 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, the rat and rabbit extracts that were pumped into me that made me write such a crazy wacky nutty novel. You can read it here (Caveat: be prepared to laugh your backside off!) Oops the Mighty Gurgle. 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 people 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 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, email@example.com, and will be delighted to extend whatever help I can to anyone who is suffering from any autoimmune disorder or facing any other challenges, physically or mentally. I have subsequently completed my second book, From Ouch to Oops. It is my life story and it is meant to help people convert every downturn into a success. It is also humourous and I promise it will make you laugh a few times, even while making you think deeply. You can buy it here, From Ouch to Oops.
I Am Unchallenged