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/Morning%20report/hcvrpgn.pdf#search=%22fibrillary%20glomerulonephri tis%20%26%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! :D


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

[DoriSchatell]

Hi Kal,

I just quickly read through a number of abstracts on fibrillary glomerulonephritis. I'm not a doctor, but it looks to me like the condition does NOT always lead to kidney failure (about half the time it does), and the length of time it takes can vary quite a bit.

Since your sister's doctors thought she had 15 years, I'd suggest not stressing out over whether other people have had less time--her doctors should be most familiar with her particular case.

[Kalcu]

Well, it's just that she automatically thinks that what she has read means she only has 10 and the doctor was stretching it for some reason. She and her husband just moved here form Wichita Falls, Texas about 2-3 months ago so I believe this is the first time she has seen this specialist. But I'm sure either she or the doctor will request her medical records from her doctors in Texas - that is if the doctor up here doesn't already have them. She's naturally feeling doom and gloom right now (and she's very stubborn as well) and I'm just trying to pull her up a little - but I know inevitably she will have to do it herself.

Thankyou for the information.


Kal :)

[Beth Witten MSW ACSW]

The important thing to tell her is that even if her kidneys fail in 10 years, 15 years or longer, it doesn't mean that she will die, which it sounds like the basis for her worry. Transplant is an option for most people even if they're older as long as the person is in good health otherwise and the risks of surgery and immunosuppressants to fight rejection don't outweigh the benefits. People with Hepatis C and even HIV are not ruled out as transplant candidates. Almost anyone of any age is a candidate for dialysis.

Who knows what the future will bring by the time she needs to make a decision about treatment for kidney failure...if that time even comes. If she lets it, the stress will work against her protecting her kidneys so she needs to find ways to worry about those things she has control over and let go those things that she doesn't. It's not always easy to do, but there are relaxation techniques and counselors that can help people focus on problems that can be solved. She may even need medications for anxiety. She needs to sure that any medication prescribed is approved by her kidney doctor and that the pharmacist knows she has kidney problems too.

[Kalcu]

Beth - you got it exactly right. I just now realized that perhaps I haven't been very clear when posting; but yes, my sister believes she only has 10-15 years left to live. And when she called to give my mother the news (who then passed it on to me), that was the impression my sister left her with - that she had been told she had 15 years - period.


Kal

[Kalcu]

P.S. - You have more than generous in taking time to inform and encourage. My mother just told me my sister said she was told she's not a candidate and something to do with her Hepatitis C. I have a call in to her now to hear her say that for myself.
The bottom line is we just need to wait til she goes back to the doctor. My brother-in-law has been checking in to read our latest posts here and when he goes with her he will himself try to get more clarification on what is going on.

[Beth Witten MSW ACSW]

I don't know where your sister is getting treatment for Hepatitis C and her kidney disease or whether she's seeing a nephrologist (kidney specialist) and how up-to-date her doctor is.

I found information from Tulane about how people with Hepatitis C are not ruled out at their center for kidney transplants. They say that the medical course first 10 years post-transplant is the same as for those without Hepatitis C. After 10 years, people with Hepatitis C and a kidney transplant may have more complications due to their Hepatitis C, but that's now and not 10-15 years from now when/if your sister may need a kidney transplant. BTW, from this article it appears that people with Hepatitis C may get transplants from deceased donors with Hep C faster because transplant programs will not give those kidneys to those who do not have Hepatitis C. And kidney donation from a live donor with a compatible tissue type makes it possible to plan and schedule surgery.
http://www.tulanetransplant.com/ki_hepc.htm

If your sister is being told that transplant is not an option because she has Hepatitis C, she should talk with different transplant programs to find out their acceptance criteria. Every program has its own acceptance criteria. The key is whether the transplant team feels that the benefits of transplant will outweigh the risks.

[Kalcu]

I talked to my sister last night and she said the doctor told her she wasn't a very good candidate for transplant - not that she wasn't one at all I guess. She said she ran into our cousin at a restaurant, who is in the medical field. Apparently she crossed his path the day she went for her biopsy and so he knew she was having one, and asked what she found out. He said from what he knew, her nephrologist (I hope that's the correct name and spelling) is one of the best (in the state anyway).
At first, when we were under the impression her disease was just in one kidney - my mother mentioned giving her one of her own. How would that work though since it's in both her kidneys? I wonder if both kidneys have to come from the same donor. And my mother is presently 77 years old; (my dad is 80) so I'm not sure if she will even still be living when the time comes. I had mentioned to my mom that perhaps I could give her one of mine and she said it wouldn't be wise as I still have a small child at home I am raising. I'm going to visit the website you gave me and it may answer some of these questions.

[Beth Witten MSW ACSW]

I'm glad to hear that your sister is seeing a nephrologist and that he/she has a good reputation in the medical community. Even if her nephrologist thinks she's not the best candidate for a transplant, it still might be worthwhile to talk with the transplant team to see what they say when the time comes.

So far as kidney transplants are concerned, most of the time diseased kidneys are not removed. A new kidney is inserted in the body in the lower abdomen on the side where it is well protected.

Your mother is very generous to be considering donating her kidney. Kidney donors are usually younger than 60. However, donated kidneys can come from siblings, adult children, a spouse, friends, or even people that don't know the recipient at all. Anyone interested in being considered as a donor should ask to be evaluated by the transplant team. If their blood test shows they would be a good match, they will get the most complete physical they've ever had. I'd suggest that the evaluation process start no later than when she is in Stage 4 kidney disease (GFR 16-30).

It's good that you're looking into treatment options. Your sister may want to keep in mind that there could be more options available by the time she needs to make a choice.

[DoriSchatell]

Kal, you wrote:
At first, when we were under the impression her disease was just in one kidney - my mother mentioned giving her one of her own. How would that work though since it's in both her kidneys? I wonder if both kidneys have to come from the same donor.
People who get a kidney transplant only get one kidney. Two healthy kidneys = 100% function. One healthy kidney = 50% function. A person can live perfectly well with 50% function. This is why it is possible to donate one kidney.

[Kalcu]

Kal, you wrote:
At first, when we were under the impression her disease was just in one kidney - my mother mentioned giving her one of her own. How would that work though since it's in both her kidneys? I wonder if both kidneys have to come from the same donor.
People who get a kidney transplant only get one kidney. Two healthy kidneys = 100% function. One healthy kidney = 50% function. A person can live perfectly well with 50% function. This is why it is possible to donate one kidney.

Oh, I didn't even realize that. Thankyou. Well, today is the day my sister and her husband were to have gone in to talk with her doctor. I'm sure my sister will call my mother before the night's over and then Mom will let me know what more if anything that she found out.


Kal :)

[Beth Witten MSW ACSW]

I asked a transplant coordinator about kidney function post-transplant because although you'd think that someone would only have 50% kidney function for the reason Dori mentioned. I'd always heard that the transplanted kidney takes on more function than one kidney. The transplant coordinator said that function could be as high as 80-90% but on average a transplant that is functioning well is functioning around 70%. Obviously, the better it functions, the better it is for the transplant recipient.

[Kalcu]

The news is that it's pretty much the same as when my sister talked to the doctor over the phone. He said it could be 5 - 10 - 15 years....that it would just depend. He did tell her to quit smoking. He said he doesn't recommend a kidney transplant because it too would become affected by her Hepatitis C. Apparently he's not giving her anything to try and treat the Hepatitis C......and I know she hadn't been taking anything in the past for it because she was told she "didn't have it anymore" - meaning, I guess, that it's dormant. So anyway the doctor told her he would see her in 6 months.

[Kalcu]

Oh, and the doctor said her kidneys were at 85% I believe.

[Beth Witten MSW ACSW]

Sounds like she has only slightly diminished kidney function. Now's the time to be doing the things to protect her kidney function and she may prove him wrong. Here are some things that can damage kidneys further besides smoking:
-- High blood sugar
-- High blood pressure
-- Non-steroidal anti-inflammatory drugs or NSAIDs (Advil, Motrin, Excedrin, etc.)
-- High protein diet
-- High cholesterol
-- Contrast dyes used for scans

Losing weight and exercising, controlling stress can, taking medications as prescribed all help.

Could the doctor have said that her original kidney disease could come back in that kidney? In the first article that I read, I did see that as a potential problem, but people with her diagnosis still were transplanted, just like people with Hep C can get transplants, but a transplant center may ony give them a kidney from someone with Hep C also because no one would want to give a kidney from someone with Hep C to someone without Hep C.

[Kalcu]

I believe that's what he was referring to when he said he didn't recommend transplant. I read that also - in one of the websites you and Dori recommended and I think I also read that in one or two other places as well. But I told my mother that from everything I read, transplants were still done as it does prolong life for a few years at least. I don't know if it was a true story, but I read on the internet about one woman claiming to have had 4 transplants. I told my mother that I'm still confused as to why nobody has been giving her something for her Hepatitis C tho. I told her that, from what I read, in many cases there was no noticeable difference in some patients after taking certain medications for a while, but that they are still appeared to be taking something; interfon, or something like that, as well as some other medications. Well, the doctor actually doesn't seem to me like he's overly concerned at this point - which I would think is a good sign. I was surprised when mom told me she had 85% of her kidneys - course I don't know how rapidly this disease progresses - but I reminded her that I thought one of you had told me that transplant and dialysis are usually considered at 30% (if I wasn't mistaken). I currently take medication for high blood pressure, but my sister doesn't have hypertension to my knowledge and never has. BUt I told her that she needs to watch that, and to be careful of taking too much pain medication including ibuprofen. She's had a problem a couple of times in the past getting herself wiened from Lortabs after having them prescribed to her for minor surgeries. I'm going to also show her this last list you posted of things she needs to watch.

[Beth Witten MSW ACSW]

Although doctors should be educating patients about treatment options when their kidney function is 30%, they don't transplant someone until their kidney function is 20% or less.

You might want to read these FAQs on the CDC website about Hep C. It discusses false positives and false negatives. If I were here, I'd want to have confirmation that she really has Hep C. The treatment with interferon looks like it can cause some pretty unpleasant side effects and the treatment can damage the liver so that might be why the doctor is waiting to start her on that treatment, but if she's had confirmation that the original test was accurate and that she does have Hep C, I'd ask about the pros and cons of treatment and when the doctor will know it's time to start treatment. This page also has information on how to protect your kidney if you have Hep C.
http://www.cdc.gov/ncidod/diseases/hepatitis/c/faq.htm

Although some have made claims about success of "alternative treatments," research has not proven any of them to be successful in treating Hep C yet. Here's a link to the National Center for Complementary and Alternative Medicine (government sponsored) page on Hep C:
http://nccam.nih.gov/health/hepatitisc/

[Kalcu]

Beth and Dori - you don't know how much you have helped. I know sometimes when somebody is depressed about something, they really don't feel like facing it at times, and so I've tried to get as much info together for my sister as I can. I research a lot of things on the internet, I think it can't be beat - but it can be very frustrating when you want information and don't know where to begin looking, or have a hard time understanding the information you are finding and have questions. Sometimes mispelling a word or using the wrong terminology can make a huge difference when you are searching the web. Actually being able to "talk" to somebody like you two has wonderful........the information, the references, the super fast responses........thankyou so much.


Kal :)

[Beth Witten MSW ACSW]

You're welcome! That's what we're here for. It's nice to know that we've been able to help.

Now...maybe you can encourage your sister take more control over her illness -- as a way to counter depression -- by researching her disease and treatments. Many patients find it more empowering to be able to ask the doctor questions rather than waiting for a doctor to provide information. In the limited time that doctors have to see patients, it's so much better to find out what you want/need to know.

[DoriSchatell]

Hi Kal,

Kidney replacement therapy (dialysis or a transplant) are only needed when kidney function drops to 15% or less--so 85 is a loooong way from kidney failure. :D

That said, Beth's exactly right (as usual)--this is the time for your sister to quit smoking (which has been proven to make kidney disease progress faster) and take other steps to protect her kidney function. She's lucky in that she knows she has some decline--many people don't until it's too late to do anything about it.