need some help

Hi there, i have just joined as i have been told i have a very rare kidney disease called fibrillary immunotacioid glomerulonephritis, my kidney function is at about 13% at the moment so they are trying medication but they know this will not work long term, so i will be going on dialysis at some point in the future and have also been told there is no chance of a transplant because the new kidney will just go the same way, i was just wondering if there was anyone else out there that has the same condition as myself as my search so far has drawn a blank in fact there is very little info about this because it is so rare, also if any one has any advice on how you coped to start with i would be grateful of any advice

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  • Hi there, I'm to a newbie to all this, I was admitted into hospital at the end of May with a kidney function of 11 it was found I vasculitis and lupus, I underwent 7 plasma exchanges amongst other treatments, they've started me on a regime of cyclophosphamide which is a form of chemotherapy ( immunosuppressant ) to get the vasculitis into remission with the hope that my kidneys will kick in, so far no change really, I'm out of hospital and having dialysis 3 times a week through a tessio line, I seem to be lucky that my side affects are minimal, when I first started the dialysis I felt very shaky afterwards but that's improving each time, you just have to use the time on dialysis in a positive way by thinking that's your chill time, if you try a put some perspective on it its 12 hours a week that keeps you alive, I wish you all best

    Kind regards Kate

  • Hi Kate

    thank you for taking the time to reply im also on cyclophosphamide and steroids as sometimes this can slow down the loss of kidney function did you get side effect from that drug as i am, the shaking i am getting also quiet foggy headed, i can not consecrate on many things at the moment, im away with the fairys. i have all of this going on and also we have recently found my sister has end stage cancer has only been given 6-12 months left, im off to see my consultant on thursday so fingers cross my function has not dropped any more.


  • Hi πŸ‘‹πŸΎ Denny

    Reading this post. Brings a tear to my eye. I just lost my dad to end of July. He was ill when I saw him New Years saying he had s blood clot. But when I saw him in pictures 6 months later he was like a walking dead unrecognisable!!! A blood clot doesn't do that to I I know I've had plenty!!!

    I never new him going him at 28 list him 15 yrs found him again then his wife blocked me from seeing him after New Years 😑. Then he drops dead?!

    I'm sure he kept it quite and didn't have blood clot on the lung but cancer ?!!😱😒. Blood clots don't make u look like a zombie!!!

    Losing him has cut me deep I'm angry at his wife even if he said he don't want to see me she should have defied his wishes knowing he's dying and I e never seen him only three short visits in my life all his other daughters seen him all their lives and cut me out and banned me and his sisters from funeral 😑😑😑😑.

    She's a terrible possessive backbiting women and unforgivable what she did to his blood relatives only distance and in laws are organising and going to funeral and one daughter.

    Anyway no need to stay bitter not good for the heart. Gonna make the best of what I've been blessed with so far.

    I hope to chat soon.

    Sakinah πŸŒΉπŸ‘‹πŸΎ

  • Oh and about your meds. I don't take anything now I'm on dialysis now except pain relief tablets and quinne for cramp. Any meds goes straight in dialysis.

    Since the downhill of my kidney function. I was born with kidney failure but since last year I been away with the fairies myself a lot lately. Fogginess daydreaming lack of concentration etc. It's embarrassing and frustrating. Used be so sharp too.

    So I know what u mean x

    Sakinah πŸŒΉπŸ‘πŸΎ

  • πŸ‘‹πŸΎ hi Kate

    So sorry if I didn't get back to u but I been so ill and bedridden and just moved.

    I sincerely hope that u are ok and dealing with your situation. I know exactly what it's like the rollercoaster of emotions.

    Don't hesitate to post/message me if needed.

    Take care. X

    Sakinah 🌹

  • Hi Delarhia

    I'm not sure about those first two long words ! but My Husband Had Rapidly Progressive Glomerulonephritis .. and sounds about the same to me , and the immune system attacks the kidneys ,, so with a transplant it would eventually do the same with the new one. My husband has been on Dialysis for a year now and his kidney function went down to 6 , but he was first diagnosed 2003 , but his kidney function was around 40 at that time and gradually got less and less .. I do have a friend though that has just had a transplant one year ago , and he has exactly the same as my husband ,, so far so good , but I wouldn't like to say for how long , before the immune system starts having another go ! But every thing crossed for my friend as he has been such a help over these years keeping me at least sane , as he is so knowledgable and even his local university have him in to lecture students with the patients point of view !

    WE have had though a great set back as my husband got an infection through his dialysis emergency line which was in place until his fistular was ready and it has been a night mare ! The infection is called Discitis and it infects straight into the spine .. It needs to be caught quickly for cure , which my husbands wasn't , so if any of you experience a terrible back ache don't waste time , it needs treating with antibiotics immediately , I did get a profound apology from the GP for not realising it could be discitis ...

    His Spinal surgeon has insisted from the start that my husband should have an operation on his spine , but there are so many serious risks , and his infection is down now ,so as he was in bed for so long in hospital .. You would think that his muscles would be in a terrible state ,, and I have asked for physiotherapy , the surgeon just ignored me ,, You would think it to be a natural follow on in the Orthopaedic dept after suffering discitis ? now his renal doctor has referred him after I pestered her so much, but she is not an orthopaedic specialist and it should have come from the surgeons dept . He has had one session now ,, and I do see a small improvement ..thanks to his renal doctor !

    I have asked for a surgeons second opinion , which has been refused , so very disappointed .. his renal team are so different and caring , and go way beyond their duties of care ,, such angels they are ,, so I do see a great difference in the two university hospitals as to how they are run and the care .. But I don't let things go so easily and I will continue on my husbands behalf to get the proper care and understanding , letter already in the post as I write ..

    Take care everyone with Kidney problems !


  • Hi Denise, yes I get the shakes, but I think it's the steroids more than the cyclo, one thing I do notice is lack of taste and smell and the fact that my saliva has a salty metallic taste, did you get really hungry when you started on steroids? And how are you managing with the renal diet? Any tips xx

  • i have day where i can not tatse anything either, i have days where i could eat my body weight and other where i just cant stand any food havent been given a special diet yet but i am also following slimming world but have been putting on weight because of retaining water

  • Hi Denny

    How are you x

    Just reading over old messages.

    Been away long time due to being so ill and bedridden and just got a new place finally suitable for me disabled adapted 😊.

    I been on dialysis now since December got my fistula done in April. Kidney functions at 4%. Last year April dropped from 14-4 in four months!!!

    Things are still up and down but not getting as bad as they were last year. I get my space even tho me and hubby still together. We find it better for both of us apart cos of his problems and mine mainly. I have my 18 yr old son living with me. He can be a darling and other times typical moody teenager. He works now full time good for him.

    I just got a grant from kidney care for furniture it's all coming today πŸ˜ŠπŸ˜³πŸ‘πŸΎ.

    How are you bearing up. I hope you have a support network around u. It's difficult when you do have family but they just don't understand what we go through. Cos they can't see it they don't know it. But they try their best.

    Don't hesitate to post me when you need too any time xx

    Take care now xx

    Sakinah 🌹

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