Sister has Fibrillary Glomerulonephritis - Question

[Kalcu]

My sister has Hepatitis C (though her doctor has told her it's "dormant") and a few days ago had a kidney biopsy. Today she was told she has Fibrillary Glomerulonephritis in both kidneys and has about 15 years left. Apparently the doctor did not give her any words of hope - is she not a candidate for dialysis or kidney transplants?


Very worried and appreciate anyanswers or advice.

[Beth Witten MSW ACSW]

When kidney disease progresses to about 30% kidney function, doctors should be discussing treatment options with patients, including in-center and home dialysis and living donor and deceased donor transplants. I'd suggest that your sister read as much as she can about her condition and ask lots of questions. If her doctor is not willing to answer questions or takes away hope, change doctors. It's possible that he didn't mention dialysis or transplant because he believes that kidney failure is far down the road. And the goal at this point should be to postpone kidney failure as long as possible. I assume that she's seeing a nephrologist (kidney specialist), but if not, that's the type of doctor she should be seeing regularly. He/she will draw blood and should use the results not only to suggest changes in treatment but to determine her glomerular filtration rate (GFR). This will tell her approximately what percentage of kidney function she has remaining.

I found an article from a recent Kidney International journal that discusses treatment for this condition. You might want to give it your sister so she can share it with her doctor:
http://medresidents.stanford.edu/Mor...6%20hep%20c%22

[Kalcu]

Thankyou so much for your reply. I talked to my brother-in-law today who said he is going with my sister when she returns to the doctor on 7 Sep. He says he wants to hear for himself what the doctor has to say as well as ask questions. He said the doctor did tell my sister there was no treatment available, which I'm not sure that I believe. My brother-in-law and I both thought it wasn't right that the doctor should give my sister a prognosis like he did over the phone - and then just leave her with it when her next chance to talk with him and get more information is two weeks away. My sister has a tendency towards depression, and I just keep thinking "how could that doctor be so cold?" I know by reason that we are all going to die one day, and really none of us know when. It just breaks my heart to think of those that have been told exactly how long it is they supposedly have left - for them to have to have that burden. I'm just so angry, and still in shock and denial I guess.

(My sister is at present 50 years old, by the way. She just had a birthday.)

Kal

[Beth Witten MSW ACSW]

I think it's terrific that your brother-in-law is going to go with your sister to the doctor. He might want to make a list of questions to ask before tht visit so he won't forget something important.

The doctor probably meant that there was no cure for the underlying condition that is damaging her kidneys....not that there is no treatment for the condition she has or if her kidneys fail down the road. Dialysis and transplant are options for almost everyone with kidney failure who wants to live. And there are options for both dialysis and transplant, including home dialysis and transplants from living or deceased donors. Your sister is way too young to give up!

People who have kidney disease often become depressed when they hear the diagnosis and realistic hope is a very important thing to have to help overcome the depression. Perhaps someone should share with the doctor how hurtful his words were. I suspect he didn't even realize what he said or how it could have been heard.

If your sister has a history of depression, it could greatly help her to talk with someone who has counseled people with kidney disease or at least people with chronic illness. Medications can help, but it may take trying different ones to find the one or two that work. Support groups help. For those who want to have a support network, there is online support. This support group that has over 1000 members, some of whom may even have your sister's condition:
http://health.groups.yahoo.com/group/dialysis_support/

[Kalcu]

Thanks again for the reply - your words have been kind and given me great hope for my sister! I'm going to share with her what you've said and the websites you've given me.


Sincerely,

Kal

[Beth Witten MSW ACSW]

Forgot to mention before that every dialysis and transplant program and every dialysis patient and transplant recipient should have access to a clinical social worker who can help address concerns they may have living and working with kidney disease, paying for treatment and more. I worked with dialysis and transplant patients for many years and always liked to meet with patients that were approaching the need for dialysis. In some areas there are classes to teach people about kidney disease. She may want to ask her doctor or the National Kidney Foundation if there are classes in her area. Although people can go sooner, most people attend classes when their glomerular filtration rate (GFR) is around 30 (30% kidney function).

[Kalcu]

Thankyou!



Kal

[DoriSchatell]

Kal, you wrote:

Today she was told she has Fibrillary Glomerulonephritis in both kidneys and has about 15 years left.

Even if your sister does have progressive kidney disease, 15 years is a lifetime in medicine. Fifteen years ago, in 1992, there was no short daily home hemodialysis or nocturnal home hemodialysis--both forms of treatment that are more like the human body & leave people feeling much better and more able to do what they want to do.

Fifteen years from now, there may be a cure for fibrillary glomerulonephritis. Even if there isn't a cure, there are a number of different groups that are working on portable, wearable artificial kidneys--and by then, one of those might be on the market.

In the meantime, your sister can do what she can to keep her kidneys from getting worse, whether or not her particular illness is treatable. This would include things like:
-- Controlling her blood pressure
-- Avoiding NSAIDs (non-steroidal antiinflammatory drugs, like ibuprofen & naproxen)
-- Taking special precautions before having X-ray dye tests (contrast dye is harmful to the kidneys)
-- Asking about effects on the kidneys before taking any new drugs

[Kalcu]

That's what my mother told my sister - that in fifteen years they might have a cure or something....

Thankyou!

You all have been so nice with sharing your information and giving hope.....you're great!


Kal

[Kalcu]

My sister keeps saying that she's reading on the internet "10 years after diagnosis". I saw this in a couple of places as well; but I thought perhaps what I was reading were specific case studies (it's hard to tell - most of it is like another language to me). Doesn't it depend on what stage the kidneys are at at the time of diagnosis?


Kal