-
Kamal D Shah
- Male
- Secunderabad, Andhra Pradesh
- India
- Blog Posts (6)
- Discussions (12)
- Events
- Photos
- Photo Albums
- Videos
Kamal D Shah's Discussions
Is this aHUS?
3 Replies
I recently met a 3 year old boy who is suspected to have aHUS. The boy was asymptomatic until the beginning of February. He started passing cola colored urine at this time. Investigations revealed…Continue
Started this discussion. Last reply by Cheryl Biermann Mar 1, 2010.
Kamal D Shah's Page
Latest Activity
Kamal D Shah commented on Kamal D Shah's blog post 'Best option for a transplant?'
Thanks Jessica! Did you take any treatment for the Hep C?
Jessica Olivia Frysz commented on Kamal D Shah's blog post 'Best option for a transplant?'
Kamal: I am also Hep C positive, but I have the antibodies present in my blood, so my liver is fine. I would say in my opinion to go for the Eculizumab as well as a live donor. As I am told, a live donor is much more beneficial when using the…
Kamal D Shah commented on Kamal D Shah's blog post 'Best option for a transplant?'
Thanks so much all of you for your responses! I can't emphasize enough how much your responses have helped me put things in perspective.
Dana M Simone commented on Kamal D Shah's blog post 'Best option for a transplant?'
Hi Kamal,
My son, Jack, received a kidney transplant with Soliris (Eculizumab) just 3 1/2 weeks ago. He had a deceased donor and hours prior to surgery underwent plasma pherisis and then received his first infusion of Soliris. He had…
Cheryl Biermann commented on Kamal D Shah's blog post 'Best option for a transplant?'
Hi Kamal,
It appears that FDA approval for Eculizumab is anticipated for this fall. That said, anticipated is not fact. Also, Nathan had five years of prophalactic FFP, he was in the hospital constantly. Dialysis was a God…
Phyllis Ann Talbot commented on Kamal D Shah's blog post 'Best option for a transplant?'
Hi Kamal - OK - here's just my understanding - there may be other answers but for what it's worth. First - did they try plasma pheresis in your earlier t'plant that failed? assuming no since it was a while back and not…
Best option for a transplant?
Hi all, Here's a brief summary of my medical condition:- Diagnosed with aHUS in July 1997 following vaccination- Immediately put on hemodialysis- Transplant in November 1998 - mother donated- Recurrent HUS after 11 days- Back on dialysis- On PD for 6 years- Currently on daily nocturnal home hemodialysis- Hepatitis C Positive- CFH/CFHR1 hybrid gene detectedI would like to go for a transplant. I had a few questions:1. What is the best option for a transplant - wait for eculizumab availability? Or…See More
Blog post by Kamal D Shah
Kamal D Shah commented on Jill Ziegler's blog post 'Life is Good again!'
Very happy for you Jill! Its really great that you got a living donor and approval for the use of eculizumab! Thanks for sharing your journey!
Kamal D Shah commented on Jessica Olivia Frysz's blog post 'Some good news.'
Congratulations on your graduation Jessica and all the very best in your quest for a job! I also hope your journey towards a transplant is smooth and approval for your use of eculizumab comes soon enough.
All the best!
Kamal D Shah replied to Linda Burke's discussion 'Soliris'
Great to know Linda! Thanks for the update!
Kamal D Shah commented on Kamal D Shah's blog post 'Co-morbidities of long term kidney disease catching up with me'
Jessica, yes, absolutely! We are both in very similar circumstances. Though, I must say, you are an extremely brave girl to go through all this and still not lose the zest for a normal life! Wish you all the very best in your search for a full time…
Kamal D Shah commented on Kamal D Shah's blog post 'Co-morbidities of long term kidney disease catching up with me'
Cheryl, I certainly hope my doctors have heard about the outbreak and do hope that will get them to know about eculizumab!
Jessica Olivia Frysz commented on Kamal D Shah's blog post 'Co-morbidities of long term kidney disease catching up with me'
Well... Kamal:
I have to say that you and I have somewhat of the same situation, except I have been on dialysis for 22 years since the age of 1. I was diagnosed at the age of 11months with aHUS in 1989. I had both of my kidneys immediately…
Cheryl Biermann commented on Kamal D Shah's blog post 'Co-morbidities of long term kidney disease catching up with me'
Frustrating isn't it? BUT they have to haeard about the ecoli strain in Germany and the use of Eculizumab...can e-coli be your bridge for gaining some interest?
Profile Information
- Birthday
- September 28
- Do you have a friend or family member diagnosed with aHUS?
- Yes
- Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
- No
- My membership request involves business interests as I seek additional aHUS information for business applications.
- No
- My child ( or myself as a patient) is best described as:
- Tested but Awaiting Results
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
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's Blog
Best option for a transplant?
Hi all,
Here's a brief summary of my medical condition:
- Diagnosed with aHUS in July 1997 following vaccination
- Immediately put on hemodialysis
- Transplant in November 1998 - mother donated
- Recurrent HUS after 11 days
- Back on dialysis
- On PD for 6 years
- Currently on daily nocturnal home hemodialysis
- Hepatitis C Positive
- CFH/CFHR1 hybrid gene detected
I would like to go for a…
Posted on July 8, 2011 at 1:08am — 6 Comments
Co-morbidities of long term kidney disease catching up with me
I have been on dialysis for 14 years now. 14 years! Gosh, that's long! I was diagnosed with aHUS in July 1997.
A few months back, I started noticing my skin become increasingly brittle, prone to cuts. I also started getting blisters on my hands and feet. I showed this to my nephrologist who asked me consult with a dermatologist. The dermatologist said this could be a condition called…
Posted on June 24, 2011 at 9:24pm — 6 Comments
CFH/CFHR1 hybrid
Hi all,
I had sent my blood samples to Dr. Goodship's lab in the UK. They got back to me saying that I had an abnormal form of Factor H called CFH/CFHR1 hybrid. This, they added had an 80% chance of aHUS recurrence after a transplant.
I guess Soliris will help with this as well going by all the news.
Does anyone else here have this genetic abnormality? Any idea what this means?
Thanks
Kamal
I had sent my blood samples to Dr. Goodship's lab in the UK. They got back to me saying that I had an abnormal form of Factor H called CFH/CFHR1 hybrid. This, they added had an 80% chance of aHUS recurrence after a transplant.
I guess Soliris will help with this as well going by all the news.
Does anyone else here have this genetic abnormality? Any idea what this means?
Thanks
Kamal
Posted on October 23, 2010 at 10:03am — 4 Comments
DNA could not extracted from blood samples
I had sent my blood samples to the Mario Negri Institute in Bergamo, Italy for genetic testing. They could do only the ADAMTS13 gene and for the rest of the tests, they got back saying that the DNA could not be extracted!
I have no idea why. I am really disappointed because I sent the samples in March this year and have been waiting anxiously for the results. The results would have helped me decide about a second transplant (first transplant Nov 1998 - HUS recurrence). A…
Continue Posted on August 31, 2010 at 4:25am — 8 Comments
Comment Wall (9 comments)
- At 2:19pm on August 25, 2010,
Joy Lewis O'Brien said… - Thanks, Kamal!
- At 11:01am on March 16, 2010,
Joy Lewis O'Brien said…
- There's very few places that do the genetic research, but there are a lot more facilities that have the lab equipment available to do the genetic testing. I'm wondering if one of the labs in India that can do other genetic testing could get the protocol (it's a set of enzymes, I think) from one of the labs here in the US or Italy.
- At 8:37am on March 16, 2010,
Joy Lewis O'Brien said…
- Hi Kamal,
Yes, the lab in Italy does take about six months--they do a very complete sequence of the gene. If I recall correctly, the lab here in Iowa took about six weeks for me, and about four weeks for my brother (I think my samples might have coincided with a school break). My local research hospital also confirmed the results and it took about 3-4 weeks. I wonder if a researcher could send the protocol to a lab or researcher in India for you?
Let me know if you know of a lab in India that does genetic research--that might be an interesting avenue for you.
- At 9:40pm on February 22, 2010,
Kamal D Shah said…
- Thanks Jodi. Yes, I hope too. The only problem is it may not be available in India. I am still looking at different options.
- At 10:17am on February 22, 2010,
Jodi Kayler said… - Hi Kamal, I saw your post on the Genetic Testing forum. My son is on Soliris and has no genetic mutation. Soliris is working great. Soliris targets the disease activity not necessarily the source of the disease. I would definitely explore Soliris for your transplant. Soliris has the ability to stop the HUS but also may act as an anti-rejection drug--and the side effects seem non-existant. I am hoping it has the ability to make transplants successful even on people who have lost a transplant in the past. Best of luck to you.
- At 8:02pm on February 19, 2010,
Grace said…
- Hi Kamal, I did have a recurrence of HUS, sorry that wasn't clear. It took about three months to kill my third kidney and work itself to exhaustion. I am hoping to get another transplant. I'm listed at the center close to where I currently live, and am trying to re-list at the center I had my first transplant, near where my parents live. They want more medical records and genetic tests before they'll put me on the active list again.
You write very well about your experiences. I'm sure you are an inspiration to many people!
- At 9:27pm on February 18, 2010,
Kamal D Shah said…
- Hi Grace, thanks! Good to know that there is another adult here. Are you planning to try another transplant? Why did you have to go back on dialysis? Was it HUS recurrence or something else?
I am seriously considering another transplant. I am trying to find out all I can. I am in the process of sending my blood samples for genetic testing.
Thanks
Kamal
- At 8:02pm on February 18, 2010,
- Hi Kamal, and a belated welcome. I'm another adult patient, first diagnosed with HUS at the age of 19. I wrote a little about it in my profile. I look forward to checking out your blog.
- At 2:45pm on February 8, 2010,
Linda Burke said… - Welcome to the interactive website of The Foundation for Children with Atypical HUS, where we share information, inspiration, and insight into this rare disease. Your profile notes that you have a medical or research link, as well as having a friend or family member with aHUS. We look forward to hearing your story....
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
The Foundation for Children with Atypical HUS 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?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "About aHUS" tab at the top of this page!
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.
************************
NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.
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.
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
• • • • • • • • • • • •
It is estimated that there are about 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
more factoids...
Help us fight the battle
Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com
Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.
Badge
© 2012 Created by ALPHA MARKETING.
Powered by 
.
