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New to kidney failure I'm 21 and have end stage renal failure on dialysis HELP

Posted , 8 users are following.

18minimus18
18minimus18

Hi I'm Andy I'm 21 years old and got kidney failure on new years

My story was that on boxing day I had a couple of drinks at a friends of Xmas 2014 and the next day I went over to a friend's to give him a hand with something and all of a sudden I got stone cold I was so cold I had to put jumpers and coats on and sit in the fire nearly and then I went home and went to bed but I was still cold so I went to hospital in an ambulance and they said I had apex jobby and it had to be removed later finding out it so nearly killed me, then just after the new year I still wasn't we'll and didn't recover from my apex been taken out or so I thorgh as when I went to the hospital again they said I have acute kidney failure, so I was in Leicester for 4 months in and out and now I'm on dials is I'm hoping to get a transplant in October from my mother but my qeastion for today are how to I cope with it all I suffer from depression and this has just made it worse I hate my self, and I had 25 kg/liters of fluid overload while I was in hospital and they wouldn't put me on dialysis because they thorgh I could possible it out with tablets but that distributed work so they put me on dialysis to get rid of the fuild and now I have bad stretch makes all over my belly and it's not doing my self esteem any good, I need help and support but I don't know where to get it I'm scared and I hate my fluid ristricion and my last qeastion is how do you all come in 33c heat this summer and not drink much, today I've drank over 2 litres and it's only half 9 ish please help

Regards

Andy

0 likes, 10 replies

10 Replies

  • Chemgland
    Chemgland 18minimus18

    Posted

    Hi Andy, I'm so sorry to heart your story, my daughter is called Samantha and on the 21st may this year she fell I'll and was rushed to Guys hospital where they carried out a biopsy a few days later and told us that she was in renal failure and would need a transplant as her kidney fuction was 8%. samantha my daughter is also 21 years old Like you. She also suffers with depression and has a complex on her appearance so I can understand what you are going through. I tell samantha and it some way I think it helps is that there is always someone worse off then you, for example when the doctor gave us the news about her needing a transplant and believe you me it was a shock as there has never been any previous history I turn around and said to her it could of been worse as the doctor could of said sorry you've only got 3 months to live, or another example is that you and Samantha have made it to 21 years old before you had kidney problems, think of all those poor children and babies who are much younger than you.   You are very lucky that you mum can donate you her kidney as sadly I'm not a match for samantha as she is O blood group and im an A, Samantha biogical father won't even have a blood test so her only hope is from a friend which is a  0/6 match or a doner from the deceesed list. Samantha is due to start dialysis over the next to weeks she has had the PD fitted and worries all the time about the tube, but like I have said to her know one knows it's there and once she has her transplant it will be removed.  I really dohope you feel better soon and if you ever want a chat please feel free to message me and I will be here for you just like I am for my daughter.  Take care and I wish you all the very best Sarah xx
    • Wots
      Wots Chemgland

      Posted

      Hi Sarah

      Nice to hear.

      The PD is fine although my wife did have a problem with hers or rather the exit wound. It pays to look after that well.

      It wasn't my wife's fault it was just one of those things and she ended up having peritonitis twice 3 or 4 months apart.

      In the end they removed it and fitted a new one the other side and that's been fine. Although she did have an issue recently I said to go get it sorted but she was adamant to self medicate.

      I'll be checking this weekend to see how it is if it's no better I'm going to snitch on her if she won't help her self Nd seek proper medical attention. Last thing she needs is peritonitis again.

    • 18minimus18
      18minimus18 Chemgland

      Posted

      Thank you Sarah I feel a bit better to be honest and I'd love to keep in touch, I'm on HD dialysis have been for a few months now and it's a drag having to so that for 4 hours 3 days a week, I hope your daughter gets a transplant soon I'd hate to be in her shoes having to wait for a kidney from someone who has past away if her friend isn't a match, I'm hopefully a match with my mother but if not then I've got my twin sister and my older brother who will get the test done and I have a couple of friends who will do the test also, I know there's always going to be worse people then me but it doesn't help the depression and worry when you don't know what's going to happen from one day to the next, without sounding selfish you kind of get the feel that your in it alone sometime and there not many people you can turn to well at least that how I feel I know there help and support out there but I don't know how to get it or where, I've been on dialysis for a few months now and been out of hospital for 4 months and if your daughter need someone her own age to talk about it too drop me a pm and see if we can get talking, best way is for someone your own age to talk to as alot of the time people you uselly see are 50 60 plus so if I can support her in anyway I'm willing too it's easier to speak to people your own age sometimes

      Regards

      Andy

    • helen54849
      helen54849 Chemgland

      Posted

      Hi,

      Sorry to hear the shock your daughter has had,I do PD and yes the tube is weard to start with as it is something that is sticking out of you that shouldn't be there.  As long as you do exactly as she has been told to keep it clean and set up she will be fine.  Let me know if she wants to chat and I would be happy to tell her what it is really like.  She will have trianing where they will just put a bit of fluid, she may experience something called drain pain some do some don't.  That is when they are draining the fluid it goes as soon as they do the fill.  When she does it at home she will have fluid in her stomach from the training so this will drain first then the fill then it will stay there for a while this is called the dwell, it depends how many cycles she will have on how much fluid she can stand, I am only tiny so mine is 800ml fill with a last fill of 200ml for the whole day.  She will know what is comfortable and they will adjust it to suit, like I would be happy to speak to her if she is worried as its a scary prospect and fear of the unknown  wish her my best xx

       

  • Wots
    Wots 18minimus18

    Posted

    Andy

    You need to get back in touch with your renal unit immediately! Probably a bit late by the time you read this.

    My wife uses periteneal dialysis and fluid intake really takes discipline and I mean serious discipline.

    You renal unit and the kidney charity in Leicester have been excellent with my wife. She attends the Leicester General.

    Never be afraid to pick up the phone and speak to them.

    Make sure they also put you in touch with the kidney charity too.

    We tested out their holiday support services the year before last admittedly it was a uk holiday but they and the proprietors of the destination were excellent.

    I know this is easy for me to say bit you need to man up take the bull by the horns and seek help urgently.

    They're all there to help use them.

    Best of luck Andy however it isn't the end of the world honestly.

  • MrsO-UK_Surrey
    MrsO-UK_Surrey 18minimus18

    Posted

    Andy, you should contact whichever renal unit you are under and ask for their advice about hydrating yourself during this heatwave.  You can also contact the National Kidney Federation helpline 0845 601 0209.

    All the very best to both you and to Samantha (how kind of her Mum to offer to chat to you).  I had a failed kidney as a small child and had it removed when I was 12 - I really do sympathise with you very young people in this situation,

  • helen54849
    helen54849 18minimus18

    Posted

    Hi Andy,

    I have end stage renal failure and like you I am on dialysis.  I do peritoneal and so the restrictions are not the same, is this something you could try I would be happy to explain further if you would be interested.  I too am consious as I have a plastic tube sticking out of my stomach (we call it pipe) if I go swimming people don't half stare at me, I know they are just curious but what makes me laugh is when I catch them rather than asking me they quickly look away so I know what you mean.  You could try putting bio oil on the marks if they bother you or you could try adopting the "you don't mind cos it doesn't matter" approach.  Honestly if people judge you on what you look like is their opinion really worth worrying about, you will think this is naff but what is the point of being stunning if you are not a nice person, I would rather be average and nice.  I don't care what I look like as I am going to look much worse by the time I have had my transplant but il be alive.  Please don't beat yourself up cos you don't look the same be proud to be different.  I know its hard I struggle everyday but you have your friends and I am sure they help you just like my friends help me.  Keep us updated on your journey xx

    • 18minimus18
      18minimus18 helen54849

      Posted

      Thank you for the reply Helen

      Please do explain Pd dialysis to me, pros and cons that sort of thing, if it's better and I get to do it at home I might consider what are he fluid ristristions like

      Regards

      Andy xx

    • helen54849
      helen54849 18minimus18

      Posted

      Hi,

      Of course no probs, basically you have a little operation to have a tenkoff catheter (the thing I call pipe) put in your stomach, depending on if you have a curly or straight tube (I have a curly one) depends if you can have general or local anesthetic.  I had gerneral the tube I have is less likely to come out as it curls round because of my lack of fat I can feel it and the two cuffs that stop it coming out.  The op its self is not too bad just a bit of pain the day after but that was more the trapped air that they have to pump into you to do there thing, after that its fine and you just leave it alone for a couple of weeks to heal.  Then you are ready for training so I went to the hospital every day for a week (you can have longer if you need) and they just showed me the machine and the bags of fluid and all the other stuff (they give you an instruction book and once you get going its all good) so instead of cleaning your bllod its you stomach fluid.  The machine drains out any fluid to start (you can sometimes get drain pain but this stops after a while) then you have the fluid in which is called the fill, they will find a comforatble amount for you, then it stays there for a bit this is called the dwell and then its drains out, you always end on a fill that stays in for the day until you start again at the night.  The PD nurses are on call 24/7 in case you need anything.  All the stuff you need is delivered to your house and if like me your house is full of people and things they give you a shed! imagine that "you have renal failure, have a shed" every cloud.  The restrictions are not like haemo as long as you drain off what is put in and a little bit more you won't have restriction like you do now.  Before I started I had to do a low potassium diet and eat phosphate tablets with every meal  (they are rank) and  had to take bicarb tablets and 2 different BP tablets.  I now take one BP tablet and have been able to stop the reat with the neph's advice.  I have had to have two iron infusions and have to inject myself with EPO due to dodgy blood count this comes with renal failure and adds to the tiredness you may feel but once you have these your good I haven;t had to have iron since starting dialysis in Dec 14.  Now for the down side, you have to be OCD clean cos you can get an infection in your exit site (where the tube comes out of your stomach) as long as you clean it every day like you are told you will be fine and wash your hands like a mad thing, then also set up your machine to the letter you will be fine.  I like it cos there are no restrictions really and I get to do it when I am asleep so its not wasting the day, I am young like you and still want to go to work so I can stilll do this and also look after my family.  Because I am only little sometimes the tube on the inside sometimes gets stuck on my instides that is not nice its feels like a stich but all the time but it moves back by its self, I had to have an xray a little while ago cos the fluid wouldn't drain and the tube had curled back on itsself and was by the bottom of my ribs but I just adjusted the machiine to not search for as much fluid til it went back then it was fine again.  I also had drain pain to start with quite bad but it was bareable and went after a while. I hope this is ok if you want to know any more please ask and i will do my best to answer.  The important thing is you are not alone, I know and so do others how you feel so if you have questions, you are scared or you just want to rant let me know xx

       

    • trab14
      trab14 18minimus18

      Posted

      Compared to Hemo, PD is like dying and going to heaven. It may sound restrictive, but its nothing compared to the 15 -20 hours a week HD takes. And the pain.

      When you apply for HD you'll have to prove to them that you are competant enough to manage it. As has been said, fluid restrictions are severe on any type of dialysis. I am limited to a mere 24 oz (750 ml/day). Esxcess fluid accumulation causes all sorts of serious problems -- like your legs rotting away and cardiac problems.

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