How do you get your life back to normal after it completely changes in a year?

This time last year I was 16, doing my AS levels at school and living a normal teenage life with my future perfectly mapped out. Then, my kidneys completely failed with no warning and after spending a weekend at home being sick after even a sip of water, the gp rang on a tuesday evening and told my mum to take me straight to the admissions ward, where that night once my parents had left, somebody I didn't know woke me up to tell me I had renal failure. I didn't even know what that meant.

I spent three months in hospital after that including a week and three days incredibly heavily sedated in ICU with pneumonia and have had more painful and intrusive procedures than I can count. But it's now that I'm out and trying to make a new life for myself that I'm starting to struggle.

I have dialysis 3 times a week at the hospital and am also trying to keep up my saturday job, do a college course I started in September as I'd missed so much school and stay in touch with friends. It feels like everyone else copes fine, the person nearest my age where I dialyse is late 40s maybe so there;s no one I can really talk too, so I pretend that I do too but really I'm so tired all the time and it's got to the stage the hospital is one of my favourite places to be as I know what's going on there and there are so many people I would genuinely count as friends (mainly staff) that I miss it when I leave.

This, in turn, makes me really sad but it's true. Does anyone else feel more at home in hospital than anywhere else? Also, has anyone else had to rebuild their life when they were quite young, if so how did you do it? Please help me get back on track!

15 Replies

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  • Oh my dear, what a rough time you have had :( I haven't had such a bad experience as you, but please believe me, things will get better. Everyone has different ways of coping. I tend to not even think about being ill and carry on as normal until I feel poorly.

    Are they talking to you about transplant at all? Have you told them how tired you feel?

    Please keep us up to date with how things are going. Someone on here will read this and have much more info for you, but in the mean time, please believe you are not alone and we are all here for you xxx

  • Thankyou so much! What you said is really lovely, I did try not to think about it to start with but I think it has just all got on top of me now. They've found my dad is a perfect match but he needs to lose 4 stone and hasn't lost any over the last six months, frustrating everyone else involved in the process. I'm also going to get put on the list a week today, hopefully I will get one some time this year! Not yet as I wasn't sure if I maybe was just tiring myself out. I will, thanks again for being so kind and I'm here for all of you in return - I think this website could be just the sort of thing I've wanted! xxx

  • :D My friend has just had a transplant from her brother in law. He is older than your dad I should think, and is feeling a little tired. She is doing very well :) Maybe he is worried about it and using delaying tactics? I think maybe he needs to talk to someone about his side of it.

    Look after yourself and get plenty of rest xx

  • Oh I'm glad you're friend and her brother in law are doing alright :)That's a very good point and one I don't think any of us had thought about! I'll mention it to my family, thankyou! Also, I loved your advice about asking yourself how you feel each day and I'm going to try to start doing it, I hope you don't have to go on for a long time but am sure you'll be okay when you do! xx

  • I forgot to say also that yes, feeling like you do is completely normal. I am not on Dialysis (yet), so I am lucky, but there is always that knowing that it may not be long. Wake up each day and ask yourself how you feel today. If you feel good, then great try and keep it that way. If you feel its going to be a bad day, try your best to deal with it because you know tomorrow isn't far away and that may be a good day. Most of my days are good, but its quite normal to have a day where it all gets on top and all you want to do is cry and feel sorry for yourself (why shouldnt you be able to do that??) xxxx

  • hiya justagirl

    what a massive upheaval you have had but let me just say its brilliant that you are still trying to keep up with your studies a Sat job and seeing your friends. i think you seem like quite a positiveand strong person because a lot of people on dialysis cannot manage to work or study. renal failure does make you feel tired as does dialysis. are you anaemic do you know because that can also make you tired and cold? i help run a facebook page for young kidney patients. have you joined and if not why not come and join,its young@nkf . On there you will find other young ppeople in the same position. Add me too if you like.

    I am transplanted luckily and so i hope your dad manages to lose the weight so that he can donate to you.

    as people have said it is quite normal to feel as you do and in fact a lot of patients consider their dialysis buddies as part of their extended family consider because they know what they are going through and you dont have to pretend how you feel. Like someone said there will be good days and bad .i dont know how you feel but there is a free activity weekend running for 18-25 year olds in either March or April. great fun and a good chance to meet others the same age.

  • Thanks :) I was interested in that weekend and emailed for more information but nobody has replied. Also, my 18th birthday is annoyingly not until June this year so I will be just too young! Thanks for the advice.

  • Also, I am anaemic but they have it (generally) under control with iron and something else, both of which I get through dialysis. I thought the tiredness would be something to do with it all but just wanted to make sure!I have already joined the facebook page a while ago but thankyou for mentioning it.

    I'm sure if he doesn't they'll find a different option, my uncle is also having tests and I'm going on the list on Tuesday. I hope everything continues to go well with your transplant!

  • Thankyou and maybe they are gathering the people who are interested and will reply in one hit. I expect you are on EPO to help with the anaemia??

  • Hiya.

    Do come and say hello at the young NKF FB page or check out the forum at Kidney Patient Guide :http://www.kidneypatientguide.org.uk/BB.php

    I got very ill around that age (my kidney failure goes back further) and dropped out of school due to my health. However I managed to get home tuition from the local authority and got back into secondary school to do my A levels, then onto university..

    Feel free to say Hi on FB:)

    I wouldn't say your life will be normal, but you can overcome the challenges that come along

    James

  • Thankyou! I'm glad you did well and managed to carry on with things :)

  • Well I'm doing well now.. It certainly was not at all easy.. One thing is to break the challenges into small things, they don't seem so bad then :)

    J x

  • Hi, you have had such a tough time, I hope things get better for you soon.

    I had just finished University and was just starting a job in London when I was diagnosed with Kidney failure. It's like a total bolt out of the blue, I was expecting them to say you've just got the flu but the reality of kidney failure and the changes it means to your life hits home pretty soon. Your hospital experience sounds awful.

    It's great that you are still concentrating on your education, if you need any help with maths then do ask. Please no English questions though :). I know what you mean about the hospital and being more at home there, the nurses are all lovely and well at least in mine it is a nice clean atmosphere. what's your hospital like? I think there is one guy in his 30's at mine and the rest are 50+.

    I have had to rebuild my life, and start a new self employed business which after quite a hard start has become to be quite successful so I'm glad to say things do get brighter. Whereabouts in Britain are you being treated?

    Stay strong and just thought i'd give you a message to say you're not alone

  • Aw that's horrible timing! How old are you now? Yeah it's like that in Carlisle, they're all far older than me, but it is very clean and all of the staffare absolutely lovely! It's nice to talk to somebody who understands what it's like when you're younger - might take you up on that offer of help with maths!

    I'm glad you're business is going well now :) get treated up in Carlisle, Cumbria - how about you? Neither are you, keep smiling!

  • hi have been reading about all your worries, at the clinic you go to ask the team to put you in touch with the child on dyalsis support group, they are kids from as young as about 5 up to 21, I think there is a web site but not hundred percent positive. this would give you someone of your own age to talk to about all of your worries,and concerns... also ask the nurses when you go for your treatment if there are other times available that you could go when there are younger patients having treatment, at our hospital they do four different sessions a day, I know its not a social occassion but it helps when sat there for 4 hrs to have some one to talk to and have a laugh with.. I'm only stage 3 failure at mo, but one of my sons had transplant last year and our other son is on waiting list....one of our daughters also experienced something similar to you but luckly she recovered even though her kidneys had both failed with no after effects to date.....keep smiling ...if you have a bad day just think oh well tomorrow will be better if its a good day enjoy it as much as possible... hope you get a transplant soon...ps school work will wait you can always go to college later when in better health xxx

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