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Kidney disease blog

People with kidney disease discuss their symptoms, treatment and even their transplants and try to help others with similar conditions.
  • Video: Kidney dialysis

    by Caspar on 17 January 2011

    A kidney transplant is not suitable for everyone, and lifelong dialysis may be the only option. Head chef Matthew talks about how he juggles his professional and personal life with regular dialysis.
    Are your kidneys healthy? http://www.nhs.uk/Tools/Pages/Kidneydisease.aspx

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  • That might as well be my name. It's not that I'm super stretchy, to be honest I think I'm quite the opposite. I am now just one big stretchmark, or so it seems. The first time I was ill I filled with fluid, causing a few large stretch marks across my knees but they have faded slightly over time. Now it looks like I'm a deflated balloon. I have BioOil but if I put it on every strecthmark and scar everyday I'd probably use the whole bottle and would have no time to do anything. So that's just great.

    Seriously, one day there's nothing there and the next thing I know there are a bunch of angry red lines of stretchmarks everywhere. It's rather irritating, actually. It seems my body has been taken over by Prednisolone and I'm on a very low dose anyway! And when I was on a high dose I had hardly any stretchmarks anyway. On top of that, my creatnine is high again meaning another biopsy and steroids if it doesn't decrease. But other than those minor things everything is hunky dory.

    So happy new year to one and all and hope you had a good Christmas. Maybe I'll celebrate my stretchmarks with more chocolate. I don't think they can get much worse,

    Brandie xx

  • Wow, December the 24th already and blimey, things have changed since last year. I was kinda dreading my visit to the hospital last week because my Christmas visit didn't exactly treat me well in 2009, with news of dialysis and an admission date right after the new year. But I think Christmas 2010 will be slightly cheerier and to be totally honest, I can't wait!

    My kidney's doing well. The hospital realised from my biopsy that I had the 'BK' virus actually in my kidney and that was causing the creatitine to rise and perhaps not my kidney rejecting. So there was a positive inside the neagtive. After all, at least my kidney wasn't trying to run away.

    Now on for the Christmas season...with potato and chocolate galore! Last Christmas I could hardly eat either. And to be truthful, I'm a rather large fan of both! So, I probably should go because it's late and 'Santa' will be coming with my presents soon (even though he's already been as I was helping him(my Mum actually) put the presents under the tree earlier). Nevertheless my sis is asleep and will probably want to be awake at 6am so Merry Christmas everybody and let's hope we all have a happier and healthier New Year!

    Brandie xxx

  • Wow, over two months since my kidney transplant and everything is so different. For a start, I didn't realise how hard it had been at times...and how easy. 

    Firstly, no dialysis. That is a plus. I can have sleepovers, stay up later and have more free time in the mornings and at night. And now, my tablets. I had to take quite a few before but they weren't half as complicated as they are now. Take these with food, these on an empty stomach and these with these but not with these...it's so confusing! But I can manage, I have a timetable and at certain times I pop in the pills and that's it for a good few hours...it is getting easier.

    But the other day I had to have a kidney biopsy...under local anesthestic. Yes, ouch is all I can say. Luckily I had some gas and air and my nurse was chatting about the X factor. It's funny how a simple conversation can make things better. And now it seems I have the mildest form of rejeciton, borderline rejection. It can almost always be treated with steroids so I am again eating like a pig, yay :|. But I am on a very high does of 190 mg. So they gave me 50mg and 5mg tablets so I get the correct dose. But the first day I took them I was so stupid and took just 10 of the 50mg ones and didn't realise until the next morning. I felt so stupid and now I am undoubtedly going to be treated like a 5 year old, with people sitting taking them with me or doctors counting them out for me. I am 14, I am new to this stuff but I CAN manage it. After all, if I hadn't made the mistake now I would've made it sometime else, eh?

    Hope everyone is okay,

    Brandie x

  • It’s been a rollercoaster summer for my poor mum and the rest of the family! In the six months between March, - when she was first diagnosed with Goodpasture’s disease and end-stage renal failure - and September, she was in hospital seven times, a total of 60 days!  No fun at all, although the good news is that she’s now been at home for an entire month, touch wood.

    We’ve discovered she’s very sensitive to fluctuations in her blood pressure. The doctors still aren’t entirely sure what’s wrong with her even though she’s had a million tests of every sort. Her symptoms are consistent with posterior reversible encephalopathy syndrome (PRES), which is caused by hypertension. We like the “reversible” bit best!

    The last time she was in hospital was the worst, partly because it lasted three weeks and took much longer than before to recover. She went in because she was struggling to find words (and my Dad was starting to recognise the fact that anything out of the ordinary now means she needs hospital). They were sitting in the garden and she couldn’t tell him what colour the grass was. And she couldn’t hold her toothbrush properly.

    The next day in hospital, she was unconscious all day, although restless because of a high temperature and infection. The day after she had her eyes open but didn’t recognise us or smile or speak. The day after that, she knew who we were! Big relief. But she couldn’t hold anything without dropping it so we had to feed her and her speech was very slurred so we could hardly understand a word she said, although she didn’t seem to realise we couldn’t understand her.

    Then came the worst bit - for the longest three days there was no improvement and we started to wonder if she’d ever improve at all and if she might be like this for the rest of her life. She was very anxious and often tearful. She couldn’t understand that she wasn’t at home. Instead, she thought that someone had broken in and stolen all her stuff, painted over everything in the house and installed lots of medical equipment everywhere. She couldn’t believe us when we told her she wasn’t at home and that home was safe and sound as always. It was heart-breaking to see. Every day we left her she wanted to come with us and we couldn’t make her understand why we were leaving her behind. She missed us all terribly while we weren’t there and felt very lonely, despite the hospital staff being brilliant. But she thought they were stealing her drugs and selling them to the other patients!

    She had lots of delusions about having visited places that she’d never been before. We weren’t quite sure what to believe sometimes because she was so convinced, and after a while we didn’t believe anything she said at all, which led to some confusion when she did start telling us things that were true!

    Anyway, after three days there was some gradual improvement, which was a massive relief. And a week later, when we’d all come to terms with how bad she’d been and we were rejoicing at her recovery, she started to realise the extent of what she’d been through, which was tough for her and tough for us all over again.

    Several MRI and CT scans later, she was finally discharged from hospital a month ago and has been regaining strength and attending her dialysis appointments every couple of days since. She still has to attend regular hospital appointments for more and more tests – a camera down her throat this Wednesday.

    We are reinforcing the positive behaviour so that she doesn’t think she only gets attention when she goes into hospital!

  • Wow. Hello again. It's Brandie. Well ,I haven't blogged since February but I think it's understandable with what's been going on. I was on PD from January, as you know and luckily I didn't have to have my catheter replaced so I kept catheter number 5. And in February they were talking about transplant and all the possibilities and choices... but everything's changed since then.

    It's now September. It's 7 months since then and I have a new kidney. Yep, I had my transplant 5 weeks yesterday and well, yesterday I had my PD catheter and urenic stent removed. You're probably wondering why my catheter wasn't removed with the transplant? Well they were worried if everything didn't work with the kidney that it would be hard to replace the catheter if they took it out. But all went well with the transplant and out little George came yesterday. It's weird now 'cause I was used to carrying around my 'emergency pack' and making sure he was safe but now I'm as free as a bird.

     

    Now It's back to school time next week. Joy :) .

     

    I'll blog soon,

     

    Brandie x

  • More hospital appointments

    by playboynat on 21 September 2010

    I now have 2 appointments next wk.. On Monday i am seeing the Dialysis doctor to assess my suitability for Peritoneal Dialysis and then on Tuesday i am seeing the Doctor who will assess my suitability for transplant :))  Fingers crossed i am a suitable candidate, lol.  

  • New blogger :)

    by playboynat on 16 September 2010

    Hey everyone

     

    I am a new blogger so will just give a brief background to me :)

    My name is Natalie & i am 28 yrs old.  I have had Crohns disease for about 4 years & it was through a routine blood test for this that the docs discovered that my kidney functions were low at 45%.  This was in January 2009.  They sent me for an ultrasound which showed that both my kidneys were scarred quite badly.  They diagnosed me as having Chronic Kidney Disease due to Pyelonephritis.  This led to regular check ups and then in March 2010 they told me that it was now classed as Kidney Failure :((  

    Since then my brothers & sisters have had the initial blood test to identify if they were compatible to become a live donor & fortunately 2 of my siblings were.  After months of waiting the hospital finally chose my older brother to be a possible donor & he is now going through the tests :))

    However, my kidneys have decreased rapidly & on Monday i found out that i am now at End Stage Renal failure.  The docs have said they are gona fast track my brothers & my tests but they need to start preparing 'plan b' just in case he cant donate... Plan b is me having a CAPD catheter fitted for dialysis :((

    I have been through a whole load of emotions but i am determined to get through this as i have a lot of things i want to do!!!

     

  • So I obviously spoke too soon because here I am again worrying about my mum. She must have decided things were returning to normal and she wasn't getting enough attention because my Dad came home on Tuesday evening to find her semi-conscious on the kitchen floor with blood all over her face and only able to say "What?"

    She was rushed to intensive care where she was sedated and had a CT scan that showed no brain damage. On Thursday she was in and out of consciousness, opening her eyes for a few seconds occasionally and was able to nod and shake her head to show she understood what we were saying to her. She couldn't speak because of the ventilator tube down her throat. By the evening she was off the ventilator and today she was sitting up chatting, although still snoozing a lot and a bit confused.

    The doctors don't really know what happened, although she had a seizure on Tuesday evening in hospital so we're guessing she might have had another seizure or a mild stroke. Can it be related to her Goodpasture's disease? It does seem a bit of a mad coincidence that only three months ago she was in hospital for her kidneys.

    There are a few stroke-like symptoms. She is a bit confused and disorientated - it's my birthday tomorrow (yes, I'll have a great one now, won't I?!) and she can't get it into her head that it's tomorrow. She could see a tapestry where there definitely wasn't one. She got a few words muddled up - tried to say holiday instead of hospital and doctor instead of dialysis. But I'd imagine recovery from a stroke might not be as speedy as she seems to be progressing. And strokes aren't a symptom or side effect of kidney disease, are they?

    Anyway, whatever it is, I've had enough now, thanks. I'd like to get off the hospital merry-go-round cos it's no fun. I'm tired and I'd like my mum back please. She was doing so well and now we're faced with who knows how many weeks back in hospital, which will set her right back again. I know I should be jolly grateful it's not worse than it is, but right now I'd like to have a tantrum about the unfairness of it all. It's not like she's unhealthy - she follows all the rules - and she's no older than a lot of other very healthy people. Anyway, this will get me nowhere fast so I'll just go and have a little sulk now on my own.

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  • I'm pleased to say I haven't posted for a while and that shows my mum's getting better because I only post here when I'm worrying about her!

    Since the last time, she has been back into hospital once after catching an infection. She had a high temperature and because now her immune system can't cope very well with any tiny infection, the nurses at the dialysis centre sent her straight to A&E. She was only in for a few days while they pumped her full of antibiotics but better safe than sorry. We knew she wasn't too bad because she was moaning about the food! We think that might just be the way life is now - trips to the hospital every now and then, hopefully none of them serious stuff.

    She has dialysis locally three times a week for four hours. The dialysis nurses all know her and my dad now. Last week my dad dared to go to a party instead of accompanying my mum to dialysis like he usually does and the nurses gave him hell for it!

    My mum is struggling with her restricted fluid intake and diet. It feels to her like anything tasty is a bit verboten, although she's allowed a little of everything in moderation it seems. The dreaded phosphates seem to be in everything so we have given up worrying too much about it as long as she doesn't binge on any one thing. She fantasises abut cups of piping hot black tea and big glasses of chilled water but has gone right off wine and coffee, which she used to love. Having ice instead of water is more satisfying, although if she has too much it hurts her mouth (everything in moderation). And dry or salty food is out because it makes her thirsty. She eats a huge amount now in comparison to before. Partly because if she doesn't eat she starts to feel nauseous.

    She misses all the times she would have had a cup of tea when not even thirsty. Times like when she's chilly or meeting up with a friend or to relax or to wake her up in the morning or to fill her tummy when it's rumbling but it's not quite lunchtime.

    I've given up worrying about downing a large glass of water in front of her and I still ask her dumb questions like whether or not asparagus makes her wee smell (she doesn't wee).

    She's always chilly now and has to wear layers and layers of clothing and gloves on even the hottest of days. But her strength is building and she can now go for quite long walks as long as there aren't too many steps or hills or too much standing around for long periods.

    And she has her voice back! No one knows why she had no voice for about a month but we think it might have been the dehydration from all that throwing up. Or maybe the strain on her vocal chords from all the retching. Anyway, it's back and she's nagging me about needing a haircut and rearranging my furniture and making sure I water the plants. Who'd have thought I'd miss that?!

    So fingers crossed for the future. Hopefully I won't be a frequent blogger but if I learn anything new I'll let you know.

  • Also known as The Ugly Inner Workings of My Mind.

    Lately, I've been worrying about kidney transplants and what exactly is involved in donating a kidney to my mum. She can't have a kidney transplant for a year, until all the antibodies that attacked her own kidneys are gone, but that doesn't stop me worrying about it now.

    A month ago, when we found out she had Goodpasture's disease, the doctor explained that a living donor is usually more successful and that close family are usually most likely to have compatible blood group and tissue match. I'm sure he was looking at me when he said that. Obviously, it was all in my mind - he could have had his back to me in another room on another planet and I still would have thought he was looking directly at me.

    At the time, I found the whole thing totally petrifying. I'm scared of hospitals. I'm scared I'll turn a corner and there will be someone bleeding or crying or in pain and then what will I do? (For the record, my NHS friend says I've been watching too much Casualty.) But blood makes me feel faint, I get white coat syndrome when I visit the doctor's with a bad cold, let alone undergoing an operation to remove a part of me. After all, if i was born with it then surely I need it, despite what they say?

    Shortly afterwards two people said to me: "Obviously you'd give your mum your kidney, no hesitation." Really? Is it that easy? Because that's not how it was for me! Weren't they aware of quite what a scary prospect an operation like that was for someone like me? And wasn't it acceptable that I wasn't immediately (if ever) up for it? So I just kept quiet about the possibility of a transplant and buried my head in the sand, hoping my mum would decide she'd prefer a life of dialysis for four hours three times a week.

    Then I started to think that if this was what everyone was expecting of me (despite the fact that no one had actually put that into words), I'd better find out quite how bad it was going to be. I spent a few evenings biting my nails Googling kidney transplants and focusing on what can go wrong. Of course, I didn't dream of actually speaking to anyone about my fears, least of all my mum, even though I knew that was the sensible thing to do. What if she hadn't got her head around it either? This would be an even bigger operation for her. What if I worried her? She had enough on her plate right now. What if she had got her head around it and expected me to be right behind her? What did it say about me that I wasn't yet right behind her? What if I couldn't ever be there for her in this way? 

    As time passed, I realised I was starting to think about the glory of being the selfless kidney donor, undergoing a series of tests voluntarily to establish compatibility. In these scenarios, we always were compatible so soon would follow a painless but time-consuming and serious operation and weeks off work in which visitors would call with flowers and cards and admiration. My mum, of course, would miraculously return to full health right about the time I returned to work and everyone would congratulate me on having such healthy kidneys.

    And the more this went on, the more I worried that if I decided to donate my kidney, the psychological assessment might detect that I was doing it for all the wrong reasons. What were the right reasons anyway?

    By this time I had at least got my head around it and it was in this frame of mind that I offered my mum my kidney when she started discussing the possibility of transplants last night. I wasn't expecting her to reject my offer though! I reassured her that I had thought it through and that I knew what I was doing but she said she'd done the same and she'd made up her mind.

    So now I feel slightly relieved, slightly disappointed and worried that I might have to see her undergo such an operation. At least if I'd been the donor I could have worried about myself and that might have taken my mind off her. And considering all the worrying I've been doing about this, I don't feel as pleased that I don't have to do it as I thought I would. And now what if I get used to the thought that I don't have to donate a kidney and relax, but then what if plans change or there's an emergency? And shouldn't I just stop being quite so self-centred and think about someone else for a change because really I have nothing to worry about...

  • Unpleasant? Undesirable?

    Disclaimer: I'm not a doctor or in any way medically qualified. This is just what I've picked up. For a more reliable explanation, see websites listed below.

    So, as I understand it, Goodpasture's disease is when your antibodies - which normally attack anything alien in your body like a virus, for example - get confused and start attacking you instead. Specifically, they attack your kidneys. And it's almost entirely symptomless until your kidneys are working at about 20% of what they should be (by which time it's too late baby, it's too late - the train has already arrived at platform number 1, Acute Kidney Failure station.). Apparently there are people all over the place with kidneys functioning at less than 100% but with no symptoms and no idea.

    It can involve your lungs as well as your kidneys but sometimes only one or the other. The doc says it only affects my mum's kidneys, although she still gets fluid collecting in her lungs at night which makes her retch and throw up fluid. Nice. Still early days though and we're hoping that will stop. If it affects your lungs, it can mean coughing up blood and shortness of breath. If it affects your kidneys it can mean blood in your urine, although you're lucky to still have urine at that stage.

    Kidney disease in general means you can't properly process the toxins in your body or get rid of them via urine.

    Goodpasture's disease or syndrome, aka anti-glomerular basement membrane disease or anti-GBM disease, is very rare though - one in a million. And dialysis or a kidney transplant aren't so bad and could be worse, although one nurse refused to confirm or deny that fact when I pressed her on it, and we're not exactly out of the woods yet for me to be totally confident.

    For more fascinating facts about your glomerular basement membrane, try the Edinburgh Renal Unit website or the good old NHS website - gotta love 'em.

  • Me again. Just to give you a bit more background on my mum... She went into Guy's hospital on a Friday night a few weeks ago, which is when we found out she had acute kidney failure. That sounded really bad. Prior to that she'd been throwing up for a week but we never suspected it would be anything as serious as acute kidney failure so that was a big shock. Especially because until then she'd been as healthy as ever. I visited her on Saturday and she was very weak and dozing every now and then. It wasn't like her at all - normally she's very active and chirpy. It was her birthday and she was frequently weepy because everyone kept being so nice to her!

    All weekend I thought she might be just about to die so it was a massive relief on Monday when her kidney biopsy revealed she had Goodpasture's disease and that she'd be on dialysis for the rest of her life (unless she gets a transplant). My mum and dad weren't quite so overjoyed - they'd been hoping she'd return to normal. I realised what a life-change it would be to have to go for dialysis for four hours three times a week but I couldn't help thinking I could have lost my mum entirely and that any compromise was worth it to keep her! I felt a bit awful being so pleased with the result when they were disappointed. And they were the ones that would have to cope with what it actually meant. I could go back to my normal life but they will have a whole new set of things to consider. At that point we didn't even really know what it all meant for them. We still don't really.

    After that, it was all about getting her strong enough to return home because there was nothing more the hospital could do for her. There's no cure for Goodpasture's disease apart from a kidney transplant. Morbid thought: it seems amazing that without dialysis my mum wouldn't be here now. Strictly speaking, she has cheated death, and she continues to do so three times a week. Dialysis is literally saving her life every few days. There's another thing I didn't know a month ago: I didn't realise you'd die if you didn't get dialysis.

    Anyway, morbid thoughts aside, they'd pumped 7 litres of saline solution into my mum to try to kick-start her kidneys into working again but no luck so she'd swelled right up all over. The fluid had gone into her tissues instead of being processed by her kidneys and then turned into urine. None of her clothes fitted her (she was previously a tiny size 8 and is now probably more like size 12 tummy with size 20 ankles!). When she eventually came home she had to wear her slippers because none of her shoes fitted anymore. Apparently the swelling will go down with more dialysis but they can't do it quickly or it's more dangerous. Three weeks on and she can fit into one pair of trousers. Last night they took 3 litres of fluid out of her in dialysis (that's a lot) but she felt itchy all night and some of today. Apparently that's a side effect, although it could be because she's also got very low levels of haemoglobin so they had to inject something black (iron?) to treat that too.

    I wrote that last week but never got around to posting it. She still has low haemoglobin and has had more of the black stuff (no, not Guinness - she wouldn't sacrifice any of her daily 750ml on Guinness! Maybe on a G&T though...). They're keeping an eye on that, although she doesn't currently have any of the classic symptoms of tingly hands and feet or feeling faint. Apparently haemoglobin carries oxygen around the body so insufficient oxygen to the brain might make you feel faint.

    And boo hiss, I have a cold so probably shouldn't go to see her this weekend and can't keep her spirits up in person in case I infect her :-(

  • It could be worse

    by steakand on 19 April 2010

    Hello! Never done this before. Be patient with me.

    I'm not a kidney patient, just suddenly both fascinated and scared because three weeks ago my mum was diagnosed with Goodpasture's disease (which causes acute kidney failure). She is (was) the healthiest person you can imagine - lots of exercise, very little alcohol, a healthy and balanced diet, etc. We had no clue it was coming at all. Kidneys are the last thing you think will fail. I'd never given them a second thought til recently.

    She came back off holiday with swollen ankles/legs that were worse than usual and went to the GP who did blood tests and discovered she was anaemic. No big deal, right? Just eat more iron and return to normal? Not really because then she began throwing up and stopped weeing. For a week. That was when she went to Guys hospital.

    So she's one in a million apparently. Well, we knew that already, thank you very much. And I found this blog and noticed there were no relatives posting (although I'm still too scared to read the other posts properly, if I'm honest) so I'm here to tell the other side of the story. Or to ramble away to myself. We'll see!

    So, interesting things I have recently learnt about kidneys (correct me if I'm wrong):

    • They control your blood pressure! Who knew?! Seems so obvious now.
    • They filter out stuff like potassium, which is normally good for you but definitely not good if you can't filter it out.
    • They sit higher up than I thought, just below your lungs on your back (not just above your bottom, which is what I previously thought!)
    • If you have a kidney transplant, they leave the old kidneys in so you have three in there! And the third one goes in a very strange place.

    Interesting things I want to know:

    • How is there space for three kidneys?
    • What happens in the gap left behind if you donate a kidney? A tissue and organ party?
    • If my mum sweats a lot, can she drink more?
    • Everything else.

    Interesting kidney-related things about my mum:

    • She can only drink 75cl of fluid per day. Go and get a little bottle of water - that's 50cl. Now imagine drinking only one and a half of those a day. Thirsty, huh? Now imagine that 75cl includes not only water, tea, coffee and drinks, but also ice cream, gravy and soup. And it goes against all those natural instincts that say drinking lots of water is good for you.
    • She can't have bananas (high in potassium), mushrooms or jacket potato skins (high in phosphates).
    • She'll never wee again (unless she gets a transplant). Too much information, I know, but just imagine. Never again. She'll be good on long distance coach journeys though.

    Anyway, ramble ramble ramble. I'll tell you more about my mum tomorrow. Thank you for reading. It's too long, isn't it? Must try harder next time.

  • It's been a while since I last blogged, it was actually in November. Well, a lot has happened since then. Then I was on a potassium restricted diet and could hardly eat anything I wanted. But now I had a new friend, PD catheter number 5. On the 5th of January I had a PD catheter put in because they were afraid I wouldn't hold position because I was on the edge of hardly any function in my kidneys. But now I have a new friend. I know it sounds totally ridiculous but instead of a burden I kind of think of him as my friend. Yes, he's a he and I've named him George. How embarrassing! His name came about when my friend remarked my catheter was poking out of its carrier plaster and I replied that he was just curious. Curious George is a cartoon character so I named him George. However, George is under risk because apparently he could be blocked so I may be looking for a George replacement. I'm not too happy, this operation is leading me into double figures as my 10th operation. And I'm not too happy about leaving George either. We've become quite friendly, best buddies. After all we're joint at the hip. Hahaha. Oh no, I have issues.At least now I can eat chocolate :)

    Talk soon,

    Brandie x

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Our kidney bloggers

playboynat has Chronic Kidney Disease and Crohns and is waiting for a transplant from her brother
steakand's once very healthy mum was diagnosed with Goodpasture's disease after returning from holiday with swollen ankles
x-Me-myself-and-my-kidneys-x aka Brandie had a kidney transplant in February and feels 'free as a bird' without her catheter

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Our bloggers are giving their views and opinions, not those of the NHS. Nothing in this blog should be taken a medical advice. If you have any concerns about your health you should contact your GP or use our medical advice now section.

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