Any of you had kidney failure due to Lupus and a ... - LUPUS UK
Any of you had kidney failure due to Lupus and a subsequent transplant? Mine's almost 6 yrs now, works fab! Anyone had Lupus attack after?
Hi MandaM,
Greats news regarding your transplanted kidney. At the moment I am on peritoneal dialysis due to my SLE and on the transplant waiting list after losing some considerable weight. My mum has had some tests to see if she is a compatible match.
How was the transplant process? It's all a bit daunting at the minute. I hope the SLE isn't causing any problems for you kidney.
Take care
Charm
Hi Charm
I was diagnosed in year 2000 with SLE and by then already had the first stages of kidney failure. I had 5 months of Cyclophosphomide treatment which kept me going until Jan 2005 when with Creatinine of 1600 i had to give in to heamodialysis! I had an unrelated live transplant on March 8th 2006 at Georges in London. The kidney worked immediately and has worked a dream since. My only blip was in November 2011 when i got so low that i had a chronic infection in my kidney and was very ill. Apparently i hadn't been drinking enough! The operation was a doddle for me, yes painful to move when you have a 10 inch cut but it doesn't last long. I was home in 5 days gagging to get back to work. Please don't think of a transplant as a miracle cure as it's not, you swop one set of problems for others and i've had more days off sick since due to problems the meds cause than i ever had with the kidney failure.. The immune supressants are also no guarantee that Lupus will be kept at bay. Having said that I've so far had no return of Lupus attacking my transplant and long may it stay that way. Well done on your weight loss but watch out for the steroids post transplant! I put on 20 kilos VERY VERY quickly but finally have got the majority of that weight off. I really hope you get lucky soon on that waiting list Charm. Do you have any other Lupus problems? I get Scleritis a VERY painful condition with my eyes, always brought on by stress and getting through all my immune supressants still. I try and stay positive and am very matter of fact with my condition. I am now 47 and getting married in December having met my understanding soulmate who looks after me extremely well :0)
I did this in reverse.
After many years of health problems and while being investigated for Lupus ~ I donated a kidney.
It was only afterwards that i got my diagnosis and was signed in to to lupus clinic at St Thomas'
On my first visit I was sat in the waiting room surrounded by women all of whom were in renal failure. I have never been so scared in all my life. but it seems that by not having suffered kidney problems by my mid 40's it was unlikely to happen at all.
The transplant was done at St Georges, which is a fine place and food is almost good enough to eat.
Good luck with it all.
Hi Thaddeus
Can i just say to you thank you for being a wonderful person for donating a kidney, people like yourself make a whole lot of difference to those of us needing a life saving transplant. Georges was a good place, the renal surgeons, Rene Chang and Jiri Fronek (apologies for spelling if wrong!) were brilliant and the aftercare second to none.
I've never been to a Lupus clinic since my diagnosis in 2000 so have no knowledge on how they operate, just think what a pain it must be to have to travel up to London and the expense and time of it all!
I hope that you do keep a nice, healthy kidney and go for you checks or blood tests on this when you should!!!
Well done you.
Hello again
Sorry for taking so long to reply, but the question slipped off the list and i didnt know how to find it.
Donating the kidney was a big adventure to me, the work up was fascinating. And Mr Chang was truly brilliant, he made me laugh a couple of days post op when I was taking my very tentative first steps. Said he wanted to see me goose-stepping!
In the mid eighties a friend of our took her mothers kidney and I swore then and there that if i ever got the chance to donate, i would do it without hesitation. Didnt expect my wife to be diagnosed with polycistic kidneys a few year later, or that we would match. But thats how it goes, and we were 4/6 on the HLA match.
My clinic at St Thomas' is very good, i do feel that i am listened to and that the door is always open for me.
Hi,
Not really sure how I got to this site and your post but it was good to read. I have Lupus and was diagnosed in 1998 when I was 18 my Kidney problems started very early on but they almost stayed at bay with medication and few little blips and many a stay in hospital up until 2004 when I fell pregnant then between the lupus and the pregnancy my kidneys were`nt having none of it. After a very ill start to my pregnancy I had my little boy Tommy born at 29weeks weighing only 2lb. He to had a rough start but is a very strong little lad now. After the birth I had the biggest flare I have ever had of Lupus, After a 3 month stay in hospital and every possible treatment going was given to me, I got to leave hospital but not for long as my Kidneys had at last given up so I was still back at hospital 3 days a week for dialysis. Which was always so hard.
But my life change came a month after yours as I finally got my transplant on April 12th 2006 also at St Georges with the same surgeons.
I was very lucky that my great aunt who was 63 at time was my donor. A gift I am forever grateful for.
Since then I have still had a few ups and downs and in 2008 my creatinine was starting to creep up again so I had a biopsy on my new kidney which was so strange from my others as my new kidney is bottom right hand side so they went in from front. The results have shown that unfortunately the lupus is staring to scar the new kidney. However as sad as I was then it is now 2012 and things seem to be ticking along nicely.
This seems like a great site and its so great to read things from others that are sort of in the same boat as me. Your the first person I have read about that a) has Lupus and b) had a kidney transplant as a result. I guess my health especially the lupus is not something I really ever talk about to people.
My after care has been great I still attend hospital every 8weeks for my blood tests and checks and I always check my own results. I rry very hard to keep happy and healthy and it seems to working well for me.
I hope all keeps with you and your new kidney and may you both have a very happy future together.
