Taken off the kidney transplant waiting list?

[paris]

I guess I don't understand why you aren't being treated for just kidney failure.  Why not at least treat one thing?  My nephrologist only treats my kidney disease. I have go to other specialist for different things.  Maybe just start with one part of your disease and not focus on the huge picture.   Just my thoughts.   Wishing you a good solution to this problem.   

[Lillupie]

Angela,
 Dont you remember me?? i was Lillupie. I think i am on your myspace. We both know Shay. We were both in a online lupus support group for lupus years ago. I am Lisa Bongiovanni from Detroit, Mi. you are a few years older then me.

Lisa

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To be honest wth you I cannot blame lupus for your kidney failure. According to  you In 1971 you had a kidney biopsy adn it stated  " chronic proliferative glomerulonephritis with hypertension". That is not lupus. With or without lupus, your kidneys will continue to decline even once they reached 40%, because in my  at 40% they are not 100%.

I just wanted to add my thoughts on this as well. Just because she wasn't DX'd with Lupus in 1971, doesn't mean she didn't have Lupus then. Many people go years and years with other problems being treated and never knowing the underlying cause of Lupus until after the fact. Glomerulonephritis with hypertension is seen more commonly in people with Lupus, because the Lupus caused the GN, and as we all know, Lupus causes hypertension.

I do believe however, that not being proactive in your health care and knowing your kidney function wasn't 100% anymore, she should of been being seen by a doctor on a regular basis to monitor her kidney function.

I have lupus, was diagnosed at the age of 16. THe biopsy confirmed that lupus attacked my kidneys. I had predisone and cytoxin. Without a kidney biopsy to blame lupus, you cant put the blame on lupus. YOu probably do have SLE. But way before you were diagnosed with it, you already had a decline in kidney function.

You were DX'd young as well, I don't meet many other Lupus patients that were DX'd young. I was DX'd at age 12. I also suffered kidney failure due to Lupus nephritis, and I also had prednisone and cytoxin. That let my kidney's recover function and I went another 2 1/2 years before they started to decline again. I don't know her whole story, but it seems Lupus could be to blame for her kidney failure as well by causing the GN itself. Either way, it really don't matter the cause anymore and what matters is what she plans on doing about her situation now.

Anyways, all other views and opinions aside, nice to meet you Lillupie. It's nice to be able to talk to someone who has dealt with some of the same issues and around the same ages for once. Not so nice either of us had to deal with it to begin with, but you get what I am saying.

A little on topic and off topic responses here. My bad. 

Angie

[jennyc]

i found this, Dr John Agar is in Melbourne Victoria (australia) but he appears to know a bit about SLE treatment both prior and after Dialysis. if you post a message for him he may be able to assist with guiding you in the right direction. I wouldn't get too deep into your dealings with NHS, just tell him that you cannot find a specialist and NHS wont refer you to one can he assist or guide you in what to so (my experience is that aussie DR's are very loyal to their compatriots, but i've never come across a bad neph out here so i guess they have a reason to be loyal to each other).

anyway good luck, i don't know if he can help but i do hope so. http://forums.homedialysis.org/showthread.php?2311-About-Dr.-John-Agar

[angela515]

Angela,
 Dont you remember me?? i was Lillupie. I think i am on your myspace. We both know Shay. We were both in a online lupus support group for lupus years ago. I am Lisa Bongiovanni from Detroit, Mi. you are a few years older then me.

Lisa

OH!  Yes hun, I remember yew. I don't know why I didn't register it in my head that yew were Lisa.

I feel retarded now. 

Angie

[kristina]

Thank you, Jenny. It is very sweet of you
to give me Dr. Agar's name & the name of the Hospital.
I shall check-up if I have already written to him
& if not I shall write a letter straight away. Thanks again.

I am pleased that Angie & Lisa have met again here.
I know how great it is to meet again after a long time.

Kind regards from Kristina.

[kristina]

Dear Jenny,

thanks for Dr. John Agar’s contact details.
I tried to register on the forum of home dialysis on 2nd of March 2010
but I was unable to register & unable to get an e-mail through.
I tried several times again & again, but it did not work.
If you have any other ideas how I might contact Dr. Agar I would be grateful for your suggestions.
I don’t know why I could not register on this site & I wonder if the site is only for Australian residents?
Thanks, Kristina.

This is the message I tried to send him:

Dear Dr. Agar,
I am wondering if there is a chance that my ESRF (kidney function 10%)
will continue to complete renal failure, or stabilize, or have a chance of getting back more kidney function
as happened when I first suffered total kidney failure with uraemia and coma in 1971.
A biopsy in 1972, when my kidneys were stable enough for a biopsy,
diagnosed chronic proliferative glomerulonephritis with hypertension.
I have had lifelong Lupus/SLE/MCTD.
I weigh 57,5 kg and since 1971 I have been a vegetarian,
and since suffering from ESRF I have followed a much more strict diet
to control potassium and sodium without any medication.
I ask for your considered opinion, because for the past year my kidney function
has remained stable at about 10% and this makes me wonder
whether I have any hope of keeping my kidneys or am I fooling myself?
Thank you very much for your time in considering this,
I would be very grateful for your opinion.
Thanks, Kristina
email: schmidt56@yahoo.co.uk