Chronic proliferative glomerulonephritis?

[kristina]

Is there anyone who has been diagnosed with chronic proliferative glomerulonephritis?
I would like to compare my experiences with other patients suffering from this as I
have never come across anyone else with this disease.
In 1971 I suffered complete renal failure which may have been the result
of an SLE/MCTD-flare-up. As soon as I was strong enough
I was given a biopsy which confirmed I had this disease.
My kidney function slowly improved and settled at around ~40-45%
and it remained at this level until 1999 when my kidney function
began to slowly deteriorate down to its present level at 10%.
I was diagnosed with SLE in 1995 and MCTD in 2003.
Is there anyone else who has chronic proliferative glomerulonephritis
with whom I can share experiences?
Thank you, Kristina.

[peleroja]

Wish I could help.  I only had glomerulonephritis once and that was about 30 years ago.

[kristina]

Thanks, Peleroja,
Did you also suffer total renal failure and were in a coma and then
your kidney function stabilized slowly to 40-45% in the coming years?
Was the glomerulonephritis the reason for your kidneys to deteriorate?
Kind regards, Kristina.           

[kellyt]

     I have/had glomerulonephritis.  No coma, though.  Sorry.

[pamster42000]

My daughter had Membranoproliferative Glomerulnephritis Type 2. She passed away in 2007. It is a rare disease. She got strep throat when she was six and some how this actavaited her immune system to slowly attack her kidneys. There is a hospital in Iowa that does research on this disease. We were in the process of setting up appointments there to see if she could get on the waiting list there when she passed away. I figured if they do research there on that disease it would be a good place to go and also one of the main Dr.'s has a daughter with the disease.

I can't tell you personally how it feels to have the disease but maybe we can still talk beings I have been involved in the process.

[kristina]

Dear pamster,
Thank you very much for your kind letter. I am very sorry to learn about your daughter. I think with this disease it is very difficult to understand how it is going to develop with each person. My diagnosis which came after the biopsy was taken, said, I suffer from chronic proliferative glomerulonephritis. Your daughter's diagnosis appears to be much more precise. I don't know what Type 2 means and whether there are other categories, this is new to me. Because of this I can't be sure I have exactly the same type of the disease as your daughter suffered from.
I don't know whether I can explain my situation, I shall try and hope it is understandable. The doctors I have met gave me the impression that they only want me as a patient for research purposes. They never gave me the feeling that they care for me as a person with a difficult to manage rare disease. Several specialists I have met have not believed me when I told them my biopsy confirmed chronic proliferative glomerulonephritis (is it really that rare?). Fortunately, after I had the diagnosis I obtained a report of the biopsy and only by producing this was I believed. In fact one specialist even contacted the biopsy-unit to confirm that the report I produced was correct. Due to complications with the biopsy itself, I was told at the time that I should never have another biopsy because it is too dangerous. So, you can see from my first point I have been struggling to find the right specialist for me. Your mentioning the hospital in Iowa has given me a little hope and that is very kind of you. May I please ask you if you can let me know the name of the hospital and possibly the doctor who has a daughter with this disease.  I quite understand if you don't want to provide these specific details. May I please ask another question, that is, how did your daughter handle the disease with regard to diet and what medicines did her specialist provide to try and stop the progression of the disease? And did your daughter feel there was anything, generally, which helped her at difficult times?
I hope you forgive me for asking so many questions but I know that you understand the situation and for that I am very grateful indeed.
Kind regards from Kristina.

[pamster42000]

My daughter had to have a kidney biopsy also, that's the only way they can diagnose it. Type 1 is the acute form, which means your kidneys are only effected for a period of time and then normal kidney will return Type 2 is the chronic form which gradually declines kidney function until your kidneys completely quit.  It took about five years for Sarah to end up with kidney failure. I remember she took Prednisone to slow down the progress of the disease.  Yes the disease is rare.

It is a very good idea to always get copies of reports everywhere you go. Dr. visits, hospital stays etc. I even got copies of blood test results from the dialysis unit, hospitals etc. You can request to get a copy of your blood test results daily if your in the hospital. It just helps you keep track of what is going on. When the Dr. comes in the room you can ask questions because you have some information.

We never had a problem with Dr. wanting Sarah to be involved in research, but I'm sure they used the information they had on Sarah's case for their on purposes.

I will send you more information about the Iowa hospital and other sites that may be helpful. I will send it in another post shortly.

If you ever get a transplant biopsies are done if need be especially with this disease...it seems about the only way they can figure out what is going on...rejection, disease coming back etc. Did you have a problem with your biopsy, why would the specialist recommend you don't get on done again?

Sarah did very well with the fluid restrictions...I know she chewed on alot of ice in her lifetime. Even when she had her transplants...probley just habit. She seemed to do ok on the diet.

Sarah just seemed to handle the bad times. She tolerated pain very well. ( Not saying your in pain all the time.) She just had this outlook that things would get better. She had a good group of friends that supported her. That always helps.

Pam

[kellyt]

I was diagnosed with glomerulonephritis in my mid 20's in 1994 and I had a biopsy that same year I think.  That's the only biopsy I've had.  He determined it was both kidneys and we just started our medication treatment of my high blood pressure and I did maybe 1 year of Prednisone.  After that I really forgot I had the disease because it was slow progressing.     My creatinine stayed at 2.7 for years.  But when it did start to go higher, it went rather quickly I suppose.  For me I did not fully understand how lucky I was because to have gone so long before starting the transplant process or prepairing for dialysis.  I've met so many people on this site who were diagnosed with kidney disease say on a Friday and began dialysis that very next Monday.  I can't imagine the trauma you went through, Kristinat.  I hope you're doing well now.  Are you?

[pamster42000]

The University of Iowa is the hospital Sarah was going to go to and the name of the Dr. is Richard Smith.

NORD -- National Organization of Rare Diseases
National Kidney Foundation
AARP-- American Association of Kidney Patients


Talk to you later.

Pam

[pamster42000]

AAKP --American Association of Kidney Patients

made a typing error on other post

[kristina]

Dear Pam,
Thank you so much indeed for all the information you have given. The doctors told me I could not have another kidney-biopsy because it caused internal bleeding and they thought another one would be too dangerous. A most recent specialist I have seen agreed that I should not have a biopsy. The cause of the complication may well have been due to my suffering also from SLE/MCTD. Of course, this makes things more difficult for me because the doctors say they cannot be more specific about the state of my kidneys.
Thank you so much for giving me the name of the hospital and the specialist. He may be able to give me an idea whether there is a possibility for treatment. It is a long shot but I really appreciate this opportunity and I am very grateful to have a chance. Thanks again.

Dear Kelly,
Thanks for your reply. It was most kind of you to give me your thoughts. You are quite right in thinking things were not all that easy for so many years, I knew that my kidneys could give out at any moment and it was like Damocles’ Sword hanging over me, but because I also suffer from SLE/MCTD I was always having flare-ups in one form or another and so life was always just battling from one month to the next and I didn’t just have the kidney problem alone to think about. I know I am very lucky to have got this far but nevertheless the battle continues and I shall try very hard to delay the dialysis which I am not looking forward to. I have been thinking about the transplant issue and there are a few complications which may cause specialists not to carry out a transplant: I also suffer from Vasculitis and the Antiphospholipid Syndrome and other things that may complicate the decision for me to have a transplant, like the fact that I suffered a stroke when I was 38 years old. So I am thinking at the moment that my best chance is to keep away from dialysis for as long as I can because even that will produce its own complications. As you can imagine I am often a little on edge to say the least and I dread having blood-test-results, and yes, I do have nightmares over it. It was kind of you to respond and it is so good that we can share our thoughts on this site. I mention this last point because before I found IHD I was in such a panic and in such a terrible state, and although my situation has not changed physically (yet!) for the better, the positive thing about IHD for me is that I am much more knowledgable about many aspects of end-stage-renal-failure and dialysis and transplant and I feel a particular calmness which has come from relating to all the people who have contributing to this wonderful site and have replied to my many questions.
Thanks again to everyone.

[pamster42000]

Just wondering if you ever talked to someone at The University of Iowa or Dr. Richard Smith?

[kristina]

Dear Pam,
I haven't heard anything yet from Dr. Smith,
or the hospital.
Thanks for your thoughts,
kind regards from Kristina.

[kristina]

Dear Pam,
I have just received a reply from Dr. Smith. It would seem my predicament is quite complicated due to my past medical history of chronic proliferative glomerulonephritis and the MCTD/SLE and he did not think there was a treatment available which could halt my declining kidney function and it is likely I will have dialysis/transplant eventually. Due to my medical history and the MCTD/SLE I suffer from there may be a slim hope that by keeping stress-levels to an absolute minimum and being clever about my diet etc., etc., I could prolong the inevitable point when dialysis/transplant must be approached. My own feeling is, that I am in an MCTD/SLE-flare-up which causes my kidney failure. I have been trying to find an experienced rheumatologist (they deal with MCTD/SLE-flare-ups) in the hope that they may have further ideas to stop the MCTD/SLE-flare-up, if that is the case. It is difficult for doctors to be more precise about what is happening to my kidneys because they do not recommend I have a biopsy, due to likely complications. This adds to the difficulty of actually knowing what I am dealing with and that is why I am trying so hard to find a way to stop my declining GFR.
Kind regards and thank you for your help, Kristina