Co-morbidities of long term kidney disease catching up with me

[Kamal D Shah]

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 porphyria cutanea tarda which commonly affects patients with long term kidney disease and on dialysis.

 
Every now and then, these so-called "co-morbidities of long term kidney disease" keep coming up. It eventually becomes a battle against these conditions rather than kidney disease itself. 

The best solution is a transplant. Dr. Goodship's lab identified the CFH/CFHR1 hybrid gene in my DNA with which the chances of recurrence of HUS after a transplant is 80%. I did have a transplant in November 1998. HUS recurred in the transplanted kidney and we had to remove it.
My only hope is to use eculizumab. The drug, unfortunately is not available in the country I live in - India.

 

I really hope it becomes available soon enough. Or if I could get access to it by travelling to some place. It is my only hope of continuing to live a normal life. I have tried to not let dialysis affect my quality of life. I undergo daily nocturnal home hemodialysis. This allows me to lead a life as close to normal as possible. I swim every day. I work full time. I travel.

 

However, I can sense that the disease is slowly gaining the upper hand. I can deal with kidney disease itself and dialysis. However, these additional things can become quite overwhelming.
I really need to get a transplant. I really need eculizumab. I am not sure how though!

[Kamal D Shah]

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 job.

 

I really hope eculizumab gets to more widespread use so that people like you and I can benefit from it. For both of us, it is going to be truly life-saving.

 

All the best!

[Kamal D Shah]

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]

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 removed, had a transplant in 1999, which failed after 9 days. I was unlisted, due to the dangerous circumstances a transplant would bring back... the aHUS. I continue dialysis 3 days a week and I'm now 23 years old have managed to graduate successfully from college and am now seeking full time employment. Like you, I have suffered some similar "morbidities" I do have delecate skin, I am prone to bruising, but that is only because I have to take baby aspirin to keep my access running. I get cut easily, but manage to heal pretty good. I had ulcers when I was 8 years old and my one leg turned a different color, due to poor circulation in that leg.  My only hope for a successful transplant is eclumizab, because I am running very low on options for dialysis. I have only 1 access left, I have calcification forming in my heart (which is not causing harm). I have the antibodies for Hep C present in my blood, due to the transfusions I had received for months during my initial diagnosis. I also have factor H deficiency, which is why eclumizab would be recommended. I am now enlisted to receive a transplant again, after being unlisted for about 10 years or more.

[Cheryl Biermann]

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?

[Kamal D Shah]

Thanks so much Dana for your comment.

 

Let my doctors know about this site? Well aHUS is too low on their list of priorities. Most doctors have seen probably 0 or 1 aHUS in their life unless they are pediatric nephs.

[Dana M Simone]

Hi Kamal...14 years is an incredibly long time...how great that you have persevered and not let dialysis rule your life. If you haven't yet, you should definitely let your doctor(s) know about this site - no better place to learn about transplants with Soliris!