Renal parenchyma disease

[Christina1960]

My fiance has MPO vasculitis. He recently had a kidney biopsy and was diagnosed as having Moderate Echogenic Left Renal Parenchyma. Does anyone know what that is? Is a kidney transplant an option?

[AndrewT]

Dear Christina,

I can't answer your question absolutely specifically, I don't know enough about this particular condition, but I can answer in general terms. I have a non-specific ANCA Vasculitis, actually about five different 'strains', which caused considerable kidney damage. I was on dialysis, for four years (almost exactly, strangely enough) before having a Kidney Transplant-in July 2013.

As far as I am aware- and I have met quite a few people who have, or need, transplants- so long as the body is fairly healthy (the main concern will be the condition of your heart) then a Transplant should be possible.

Which hospital is your fiancé under? Can you not both ask to speak to one of his consultants? How far are you from Addenbrooke's Hospital Cambridge, as Dr David Jane, the country's (World's?) leading expert, on all 'Things Vasculitis', is based there. (Dr Jane is also an advisor to Vasculitis UK, our sister organisation).

It only remains to send you both our very best wishes, and prayers. Please do have a very happy Christmas, both of you, and please will you let us know how you 'get on'.

AndrewT

[Christina1960 in reply to AndrewT]

Thank you so much for your reply Andrew. We live in the US so University of Penn hosp prob isnt fimilar to you. (Sometimes I wonder if it's worthwhile to go out of the country/state to find out more info)

I'm glad you're transplant went well and you're feeling better. Is life easier once its done? Do you have to watch your diet? I dont know much about it and i cant find the info on the web to my specific questions. We do have an appointment this coming Wednesday with the doctor but it seems so far away and im feeling a bit anxious.

Plan is to give him one of mine-as long as I'm a candidate-not sure what the protocol is) he's a universal recepiant so that's a positive.

Thank you again for your reply. It means so much to have people like you to talk to. Have a very Merry Christmas and God bless you.

Ps. I'm going to research Dr. David Jane. Thank you for the information.

[AndrewT in reply to Christina1960]

Dear Christina,

To answer your questions, at least the ones that I can; no I don't know Pen Hospital-is it in/near Pennsylvania (sorry if this is a stupid question). Yes life is easier, I'm not on dialysis three times a week, and no I'm not now on a special diet. I definitely was, when on dialysis though-quite a strict one too.

Beyond these answers, and meaning no dis-resect at all, I think that you do need to both discuss these matters with a professional. I could, indeed we all could, spend a very long time giving you facts/opinions and so forth-only to find that you need further information. The subject IS extremely complex and, with the best will in the world, we don't know your exact circumstances Christina.

Addenbrooke's Hospital, in our City of Cambridge, do produce a great deal of information, on Transplants. This will include the information that you require. The fact that you will be seen in a different hospital, and indeed, in a different Country, does NOT invalidate the general information given (Clearly anything specific to Addenbrooke's will not directly apply). Dr David Jane, who I mentioned before, is a vasculitis expert based at Addenbrooke's.

I seem to be apologising, for not being able to be more specific again, but 'things' are, procedurally at least, different on your side of the 'Pond'.

As I said, last time- A very Merry Christmas and peaceful New Year, to you both.

AndrewT

[Chris-Bromsgrove]

Hi Christina

I have MPA vasculitis (Microscopic Polyangiitis) which mainly affected my kidneys. The term used to describe the damage caused to my kidneys was glomerulonephritis. The glomeruli are the filtering units in the kidney and the vasculitis attacks the blood vessels in these units causing the nephritis (dead tissue). I think Echogenic Renal Parenchyma may be talking about the same thing. The tissue taken with my biopsy was described as partly acute and partly chronic. The chronic is basically dead tissue and doesn't repair but the acute is still alive and can recover if it gets properly treated. Thankfully our kidneys have a lot of excess capacity and you can afford to lose some filtering units without have much impact on kidney function. If your fiancé's Echogenic Renal Parenchyma is described as moderate then maybe that's not to bad.

When I was diagnosed I had lost so much blood and protein in my urine that I was anaemic. Luckily it wasn't quite bad enough to need dialysis. However three years down the line from my initial treatment my kidneys now function completely normally without any traces of blood or protein in my urine. Hopefully your fiancé's doctor should be able to advise the prognosis. Let's hope it's not too bad and his kidney can recover.

Chris

[xz3sgn in reply to Chris-Bromsgrove]

Hi Chris,

I'm so happy to learn that you have fully recovered. I'm also having the same problem and the treatment has finally stopped protein and blood in the urine but the creatinine is still high ( 150 ). I'm on maintenance protocol with pre and azathioprine. How much is your creatinine how longwere you on maintenance protocol ??

Many Thanks

[Chris-Bromsgrove in reply to xz3sgn]

Hi

I couldn't give you a figure for my creatinine, other than to say it is now within the bounds of normal. However I will be on maintenance drugs (2.5 mg Pred & Mycophenolate) for the foreseeable future. My ANCA levels were very stubborn in coming down during the initial treatment and they still remain positive even now. For that reason my Consultant is reluctant to wean me off the maintenance drugs.

It seems strange that your Creatinine remains high. Mine came back to normal long before the blood and protein traces in the urine stopped. Hope you get it sorted.

Chris

[xz3sgn in reply to Chris-Bromsgrove]

Hi Chris,

Many Thanks for the prompt response.

I've a history of high creatinine and it was 123 in 2007 ( the last record that I have ). In July it had gone above 300 when I was hospitalised and diagnosed with the ailment. Creatinine seems to settle down to around 140 as some part of kidneys are damaged.Not sure if the damaged part will recover ????

ANCA antibodies, like yours, don't seem to disappear

Hope you wont mind answering the following queries:-

1. How long did it take for you to get down to 2.5 mg Pre .Can you please confirm. Appears to be around 3 yrs from your previous comments.I'm still on 100 mg Azarthioprine and need to discuss with doc how long to contnue with this dosage

2. How often do you go for your blood test/visit to hospital?

3. Where are you being treated ?

You have been a great help.

Many Thanks again

Mukesh

[Christina1960]

Thank you Chris. He was on dialysis for a few months when he was first diagonist (kidneys shut down) he's off now but only has 30% working. His blood test was stable since except his creatine level went up, thus the biopsy to see if it's the disease or natural kidney decline. We have an appointment with the doctor Wednesday to find out the results.

I'm glad you're doing so much better and your kidneys fully recovered.