The Atypical HUS Foundation

Facing Long-Term Dialysis with Vision

Kamal D. Shah of India shares his aHUS journey from initial diagnosis as a Chemical Engineering student headed to graduate school in the US to a kidney transplant ruined by a recurrance of aHUS.  Now on home hemodialysis, Kamal takes action and and becomes a co-founder of  NephroPlus - a chain of innovative, patient-centric dialysis centers in India.  A moving story of facing the challenges of longterm dialysis with vision and hope.

 

 

     In July 1997, I was on Cloud 9! I had topped my class and won a Gold Medal when I completed my undergraduate Chemical Engineering degree in India. After winning admission into a US school to pursue my Master’s in Chemical Engineering, I’d gotten my visa to travel to the US for the two-year graduate program. I was twenty one years old.

 

     I received some vaccinations, a prerequisite for travel to the US. That evening, I felt sick. I was warned that vaccination could result in getting a fever, among other things, but this would only be temporary. However, the symptoms only worsened and the next day I started feeling nauseous and really bad. A day later my parents took me to our family physician. He prescribed a few tests and when the results came, we were told, “The kidneys are not working”.

 

     I was immediately asked to consult a nephrologist who made the diagnosis - Atypical Hemolytic Uremic Syndrome which was later confirmed with a biopsy. Friends searched  the internet to find scarce information about the disease but most of it was about children. I was put on dialysis and was admitted to a hospital. The nephrologist said this was a reversible disease and I should be getting my kidney function back very soon. “How much time, Doctor?”, I wanted to know. I wanted to get on with my life!

 

     “About a week, Kamal!”

 

     “That was all right”, I thought to myself. “I can hold on for a week!”  A week quickly went by. No sign of improvement.  My doctor responded, “It is difficult to predict this exactly, Kamal. It sometimes takes longer. Another week, maybe?”

 

     The weeks went by, one after another. The promised light at the end of the tunnel was nowhere in sight. I kind of got used to the routine by then. The reality also sunk in that this was not going to end very soon. We tried plasmapheresis and plasma infusions but neither worked.

 

     One day my doctor decided to try steroids and I was put on prednisolone. After a few days, my urine output dramatically increased!  We were all excited. The joy was short-lived however, when I caught a lung infection.  Treated with strong medicines, my kidney function started deteriorating immediately.

 

      I was on regular dialysis and then we started talking about a transplant. My mother donated her kidney in November 1998. Eleven days after the transplant, aHUS recurred. A few days later I was back on dialysis.  I was put on Peritoneal Dialysis (PD) after that and I really got most of my life back on this wonderful therapy. I started working full time. I travelled a little. The diet and fluid restrictions were minimal.  Then while on a beach in South India on the day after Christmas in 2004, water gushed in from under the door. Within a few minutes, I was neck-deep in water, trying to escape our resort as that part of the world experienced the worst tsunami in history.  A few months later I had to give up PD due to a series of infections in my exit site, tunnel and peritoneal cavity.

 

     My nephrologist suggested I switch to home hemodialysis. I had never heard of hemodialysis at home and searched the internet for information.   Now almost seven years since I have started home hemo, I dialyze six nights a week for about seven hours each night.   I have got my life back with this modality or dialysis regimen. I work full time. I swim every morning. I travel. I recently went on a cruise to Alaska and a three week trip to the US and Canada!

 

     It would be wrong to say that my life is entirely normal. I have to make many, many compromises. I cannot travel as much as I would like. I also find it difficult to deal with the co-morbidities. Kidney disease brings with it, as you progress, a host of other conditions which often cause more problems than non-functioning kidneys.

 

     I was diagnosed with this disease at the age of twenty one, in the prime of my life. The best years of my life were snatched away from me, the years where I would have had fun, enjoyed my youth, possibly found love and settled down as well. All this never happened. While people my age were busy leading what you would call ‘normal’ lives, I was grappling with more existential problems.

 

     I found my coping mechanisms however. I found work to be a great positive force. I started working full time a couple of years after my disease struck and have continued working all these years. Work takes your mind away from the disease and you get to experience ‘normalcy’ for a lot of your day!

 

     A few years back, I co-founded a company that sets up dialysis centers. Our company is different from most other companies because of the patient-centric focus that I advocate for myself and others.  I enjoy my work thoroughly. Responsible for setting up protocols in our centers in conjunction with the nephrologists and dialysis personnel, I also monitor quality at all our centers. We currently have 12 centers in different parts of India and we aim to be a 100-center chain in the next two years!

 

     Exercise helps a great deal too. I swim every morning after getting off my dialysis machine. Exercise helps keep you fit and is great in many respects - both physical and mental.

 

     I also try to stay up to date with what’s happening in the medical world when it comes to my disease. Doctors have only so much time. Especially in countries like India where doctors are treating far too many patients, it’s not possible to expect physicians to keep up with research pertaining to a rare disease like aHUS, possibly treating only 1 or 2 patients in their entire careers! It’s vital I advocate for myself and stay on top of aHUS issues to bring breaking developments to their notice.

 

     Often in the quiet of early morning, I sit outside sipping black Darjeeling with the gentle breeze against the tree leaves and think, “I wish it wasn’t aHUS.”  Why aHUS, of all kidney diseases? I have borne this cross for almost sixteen years now.  Why did I get this disease with which I cannot even undergo a transplant? There is still no hope in the near future to get access to Soliris in India . When the ‘Wearable Artificial Kidney’ is released in about three years in the US, it will still be many years before I get access to it. The portable hemodialysis machines that have become available in the US many years back are still not available in India.

 

     I then think about the whole situation again. I think about those on dialysis around me, recognizing that I have practically no diet and fluid restrictions.  I can swim every day. I work. I travel. I have even gone out on a few dates recently! I don’t have a bad life at all! I realize that life is all about perspective. You can go on and on about your problems and feel worse about them. On the other hand, by focusing on the good things, you genuinely feel better!

 

     Finishing my tea, I quickly get ready for a swim. It is a new day and there are lots of things to be done!

 

Read more about my journey with kidney disease at my blog: http://kamaldshah.com

 

 

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The Atypical HUS Foundation encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.

Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.


NEW DIAGNOSIS OF aHUS?
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If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.

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Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
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It is estimated that there are about 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
more factoids...

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