My story

[Kamal D Shah]

I am a 34 year old male living in India. I was diagnosed with Atypical HUS in July 1997, when I was 22. I had taken some vaccinations - Typhoid, MMR and Hep B - a prerequisite for travel to the US. I was going to the US to pursue my Master's in Chemical Engineering. Within a couple of days of taking the vaccinations I started feeling sick - nauseous etc. A few blood tests later, I was told I had HUS - and kidney failure. A biopsy later confirmed the diagnosis.

About a month or so of starting dialysis, plasma pheresis was tried (3 sessions). No luck. I was then put on prednisolone. My kidney function improved. But I caught a lung infection and the drug used to treat the lung infection caused the kidney function to decline again.

I had a transplant in Nov 98. My mother donated. Within 11 days of the transplant, problems started again. A biopsy showed either Recurrent HUS or Cyclosporine toxicity. They're not sure which it was.

I then was on PD for 6 years. Got caught in the Tsunami of Dec 2004 on a holiday in South India. Tunnel infection followed. Treating did not help. Peritonitis ensued.

I then switched back to hemo. Caught Hep C at some center during this time. Then switched to home hemo. Currently on daily nocturnal home hemo.

I am now researching on the options for a second transplant.

I have a blog which you could visit for more details: http://kamaldshah.com

[Kamal D Shah]

Thanks Joy. Yes, I found Dr. Remuzzi and his team really helpful. I will keep you posted on how things go. Thanks!

Kamal

[Joy Lewis O'Brien]

Hi Kamal, and welcome to the site! I hope this is a useful place for you to gather (and share) information. I'm looking at your blog now and reading about your struggle to be proactive about your health when dealing with health care professionals who just don't have the answers that you seek. Even the specialists in aHUS are still gathering information and nobody has a really comprehensive picture of this disease and its causes, or why some people with the gene are affected and others aren't. I see that you're sending your blood off to Dr. Remuzzi's lab for genetic testing. I visited their lab a couple of years ago and met the researchers working so hard to ascertain the genetic markers that cause the predisposition to aHUS. I have the factor H deficiency but am completely asymptomatic, but am always aware that I could become symptomatic at any time. The Italian lab is a wonderful place to look for answers, and they'll help you figure out what to do when they have the results from your genetic testing.
I do hope you can get useful information, like finding out if you're a good candidate for transplantation, or if you would be a good candidate for Soliris. Keep us all posted on what you're learning as well as any questions you think of!
--Joy

[Linda Burke]

Joy's Forum is located on this site's Home Page in the Forum section, an area devoted to specialized subjects (such as Soliris, dialysis, etc) and created by various website members. Joy's Forum is titled "Current Reseach" and both she and Grace have added terrific links to a variety of various journal articles, studies, and so forth. We appreciate all the access they provide to aHUS patients and parents, and it's great to have such a wide variety of info all in one place. Thanks again for all your efforts to keep us informed, Joy and Grace!

[Kamal D Shah]

Thanks so much Linda! As I said recently on my blog, I simply have no choice in the matter. In diseases such as aHUS which are so rare, the docs (at least the ones I have come across) don't know a whole lot!

[Kamal D Shah]

Thanks Cheryl for the advice. I will look these up. For a long time I was inclined not to think about another transplant. But I have found a lot of encouraging news on this on the internet (including this site). Do you have the link to Joy Lewis's forum?

[Kamal D Shah]

Thanks Phyllis! Yes, PD was a boon compared to hemo. I am in the process of looking up Soliris. Let's hope I find something encouraging.

[Linda Burke]

Wow- you've managed to have lived a rich and varied life, despite the challenges of aHUS. You certainly are proactive with all the investigations you've done to access the best care options available. May your path become smoother soon.

[Cheryl Biermann]

Kamal, I have to thank you for linking us ith your blog, it is so good to be reminded what it feels like to have all these restrictions. As a parent of a child with all of this going on you worry about their health, their socialization, and falling behind in school, so it's a fine line to walk. Thanks for giving us all a much clearer picture than hat our kids are able to verbalize, it is invaluable.

[Cheryl Biermann]

The best way to find the latest on anything is to go to Joy Lewis's forum, current research, on this site and click on the sites she has mentioned. Good luck! Going to check out your blog now.

[Phyllis Ann Talbot]

Kamal - welcome- I've been reading through your blog and I have to say it's amazing - I hope my little man (who is 3 1/2 now) is as tough and resilient as you have obviously been through this entire journey! I'm also so sorry about your PD - we can totally relate - I'm a nervous wreck about anything happening with Hyde to force him to go back to hemo from PD. Best wishes and good luck - given some of the latest info I would feel more positive now than in a while - by the way - if you are searching on the internet - soliris is the brand name - the other name is Eculizimab.