Vasculitis sufferer with acute renal failur... - Kidney Disease

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Vasculitis sufferer with acute renal failure needs info

Norfickgal profile image
7 Replies

Sudden auto immune disease vasculitis sufferer that caused acute renal failure would like to find someone else who has the same problem to compare notes.

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Norfickgal profile image
Norfickgal
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AndrewT profile image
AndrewT

Dear Norfickgal,

I don't know if I am 'Exactly' the person, that you are seeking, but..... I had a, very sudden, Vasculitis Attack- close on- twenty-five years ago now. This left me with Brain, Heart and Kidney Damage. I was on Hemo-Dialysis for four years, July 2009 to July 2013, before receiving a Kidney Transplant.... So I DO know a 'fair bit' about Kidneys!

If you think that I can, in any way, assist you Norfickgal then please Do reply or, if you prefer, you can (P)rivate (M)essage me.

I Look Forward, to hearing from you.

AndrewT

Norfickgal profile image
Norfickgal in reply to AndrewT

Hi Andrew, thanks for replying. Similar to you, my kidney failure is due to sudden vasculitis attack. I was taken to hospital mid April this year and diagnosed with acute renal failure due to the autoimmune disease. I have since been on 6 sessions of Cyclophosphamide, steroids, anti biotics, blood pressure tabs etc etc. My problem is I feel unwell a lot of the time. Just recently vomiting a lot. No appetite. High blood pressure. I've been told the sickness is probably the cyclophosphamide now coming out of my system. I saw my consultant yesterday and he's going to ajust drug dosage to see if this makes me feel better. I was told each vasculitis case differs and people respond differently. It could be the drugs , the disease or the kidney dialysis. I just dont know what's happening to me. I'm hoping there will be some kidney recovery, but 5 months on there's little change, apart from my increase in peeing. I did hear from my one of my dialysis team that a Wegners disease patient got full kidney function back within 6 months of the attack. I am hoping that some miracle might happen for me ,as the thought of long term dialysis fills me with dread. Just interested to know if you had problems with meds or dialysis that made you feel unwell. Your vasculitis attack sounds a lot worse than mine. Jane.

AndrewT profile image
AndrewT in reply to Norfickgal

Dear Jane,

To begin with I just Collapsed in Central London.... I am 'told' that I DID, in fact, get into Work that morning and started 'Making Mistakes.... NOT good, for a Quality Controller!- I worked in Park Royal, West London. I was got a Cab home, to North London. I am also 'Told' that I then went to Central London, in order to, get/ acquire a Charity Pass. I used to 'do' Collecting, as part of a local Group, so that is quite possible. I was taken to University College Hospital, by person(s) unknown to me. My Condition was 'Recognised', by a Passing Doctor, who began Treatment. There By The Grace Of God Go I. So it is, somewhat difficult for me to answer your question, about my early diagnosis.

I feel that perhaps You need, to speak, to your 'own' Team regarding Your Dia/ Prognosis, as it is Impossible for me- indeed any of us- to answer you without, at the very least, seeing your Blood results. Your Doctors will be able to tell you, the 'likelihood', or not, of you needing dialysis- now or in the future.

I, really do, fully appreciate your 'Need For Clarity' on this matter- it IS an extremely worrying time. Unfortunately, apart from explaining the Procedures/ Systems/ Nomenclature, none of us on here can be more specific.

Find/ give/ MAKE yourself some 'ME' time and, use it, to reflect/ take stock of your position.... You have had Kidney Damage, which may- very well- improve over time. If it doesn't then you MIGHT have to start Dialysis. IF this proves to be the case, then I- indeed many of us- can, and will, advise you further. Rest assured that, your Doctors/ Consultants will keep a close 'eye', on you, and tell you of any significant 'Changes'. Beyond this, I can't really tell/ advise you much more Jane.

Remember this though, you have 'come' This Far and, despite Everything, you are ALIVE Jane. Yes you ARE having some 'problems'... Physical- Mobility, Balance, Co-ordination? Also probably 'Tummy Troubles'- Pain, Constipation, Diarrhoea, Wind, Along with Memory 'Troubles'.... You are Not alone.

Make a List, make Several. Find a Specific 'Place' for Keys, Glasses, Pens/ Pencils/ Writing Paper. Put the Salt & Pepper back In The Same Place Each Day. Bath/ Shower every Monday, Wednesday & Friday (say). Have Different, and entirely separate, 'Piles' for Dirty, and Clean Washing.

I am 'aware' that, years ago you 'Did' ALL the Family Wash- including Dylan's 'Crocodile Shorts'- along with the, under Fives Football Team- 'Reserve Kits' too..... ALL Without using 'Separate' piles. However you were Eighteen back then.......

You ARE 'Doing' Well Jane, in spite of what you might be 'Feeling', you are ALREADY on the 'Road to Recovery'.... Yes it IS a Long Road, with innumerate 'Bumps', Divisions, Road Works and even Dead Ends.... but you are on it!

I'm sorry that I can't be any more 'Help', to you, Jane.

AndrewT

Norfickgal profile image
Norfickgal in reply to AndrewT

Thanks for your reply Andrew. It's still early days for me and it's a waiting game.

Spd1967 profile image
Spd1967 in reply to Norfickgal

Yes. I was diagnosed in Jun. treated with Ritaxan infusions and currently on Prednisone. Expecting another infusion of Ritaxan in December.

My kidneys were damaged by the vasculitis and I am currently on dialysis 3x a week. We are hoping when the vasculitis goes into remission that my kidneys may improve ,but they are not too hopeful.

Maybe a candidate for a transplant some time in the future...

Norfickgal profile image
Norfickgal in reply to Spd1967

Both of us living through sudden illness and the dreaded Corona pandemic too. How brave are we? I'll be interested to know how you get on with the meds. My last chemo course was at the beginning of August. Up to then I didn't experience the awful vomiting and loss of appetite . My taste buds are shot as well. The prednisone is being reduced and azathioprine added to the meds. I dont know if this new drug triggered the feeling of nausea or it's the chemo stuff coming our of the system. I'm responding well to my three time weekly three hour dialysis according to the professionals. I was told by the consultant that I might be looking at 3 years on dialysis. They need to get the vasculitis under control first and then if there's no life in the kidneys then I'm on the transplant list. 3 years ☹!

Jane.

Spd1967 profile image
Spd1967 in reply to Spd1967

Still on dialysis 3x a week and find new heart damage. Possibly from vasculitis but not really sure. many of the dyes used for diagnostic and treatment may be harmful to kidneys. I still have some kidney function and don’t want to do more damage. This month I was reclassified as Chronic and am scheduled for surgery for fistula in my arm so the chest catheter can be replaced. My prednisone for vasculitis is down to 5mg a day and I’m on meds to keep my blood pressure low. Im assuming I still getting Rituxan in Dec as part of the vasculitis treatment. Still experiencing low energy especially after dialysis. Kind of feel I’m in holding pattern.

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