Hi everyone ^^

[Teepo18]

Hey guys,

Im Adam, im 21 and from Manchester, UK. I was recently diagnosed with kidney failure at the end of January 2010. Wasn't a built up thing, it just happened like WHAM!! so not good. Was very ill for nearly all of 2009, many doctors appoitments and hospital visits but they didnt find out what was wrong with me in time(only a year.....thats all.......>.<). Looks like i have an auto-immune issue so yeah on hemo-dialysis now and so far im still sane...i hope....and errr docs are trying their best to get me to have a fistula which is not gonna happen. xD

Sorry i kinda had a rant, not coping very well with it all so thought id search the web and see how everyone else does it.

[peleroja]

Hi, Adam, and welcome to the group.  If you don't want a fistula, sounds like you may be heading for PD.  I've been on PD nearly 7 years and I like it much better than hemo.  Any questions, just ask.

[Teepo18]

Hello! I know but PD is soo forever :S your constantly doing it every day where as Hemo you at least have a break so i think im just gonna stick with this tube thing hopefully i wont be doing this for much longer. Family members are due to be tested this week to see if they are a match so hopefully(fingers crossed) ill have a new life in 6months. Just need to get the ball rolling so to speak!

[galvo]

G,day Adam and . The main problem with a catheter is the risk of infection and, believe me, that is not pleasant. A fistula is not too bad, mate.

[Bajanne]

Welcome to our community, Adam.   I do understand you reticence concerning the fistula, but as Galvo rightly states, there is a bigger risk of infection with a catheter.  I am therefore hoping with you for a transplant.  There is lots of information here concerning every aspect of this renal challenge.  And along with that is loads of support.  You will begin to see this as your online family   Just keep reading and keep posting, so we can know how you are doing.





Bajanne, Moderator

[natnnnat]

Gday Adam, Good to meet you, even if it is because of your kidney failure.   Why would you be coping well, why not have a rant?  My husband's kidney failed when he was 19, and he said to me that he was actually pretty angry, for quite awhile.  Then eventually he got used to it.  I think the nurses said something about how he wasn't taking responsibility for his illness, and he decided to "show them".  He learned everything about operating his machine, did all his needles himself, took his own bloods, and became completely self sufficient.  And apparently, he cheered up in the process.    So, his kidney failure story:  he got progressively more and more tired till the point of exhaustion, falling asleep in the shower etc.. then his face swelled up, he thought he had mumps, his GP recognised renal failure and got him straight into emergency.  He woke up in hospital and started haemo.  He did PD for awhile but hated it, eventually got peritonitus and was allowed back on haemo which he did in centre because he didn't want his parents to have to deal with the machinery at home.   People have different preferences when it comes to PD or haemo, you should do some research, look around the site, there's lots of info here that will help you to identify what might work for you. 

[Zach]

Good to have you join our community.
 

[RichardMEL]

G'day Adam, and welcome to IHD.

What sucks so much from reading your story is that you were ill for most of a year it seems they didn't manage to pick up the kidney issues in that time? I know at least one member who will read that and use that one for ammunition against the NHS! Still, the two may not have been related and you could indeed have suffered acute failure, perhaps as a result of other issues. Either way sorry you're stuck in this situation... but you're here with us now, and that's hopefully a good thing for you!

yes, with HD you get a "break" but you also have to deal with other stuff like increased diet restrictions, and fluid restrictions - that can be very difficult to deal with - so it's a trade off (isn't everything?)

Anyway welcome to IHD - hope we can keep you company on your journey and provide a place to vent and get support!

RichardMEL, Moderator

[Jean]

Welcome to IHD Adam, sorry you got the kidney news in such a manner. At least you are in the right place to get all the info that you need to make an informed decision. Many like PD, many like Hemo, its your choice. I hope your transplant comes thru for you and soon, so you can get on with your life.

[Teepo18]

Thans for all your kind words everyone! Yeah i think im mainly just angry at the world but not much i can do about it so ill just plod along with it heh. I have defo decided to stick with the perma-cath knowing the risks and im very careful with it and never get it wet so hopefully 6 months ill be alrite lol(keeps hoping). I only do 3 hours on hemo tue,thurs and saturday so its not much and i still do everything like going out with friends and ice skating and stuff lol, dont feel ill its so strange. I think the hardest bit is the diet, i used to eat so much rubbish everyday and go out with friends every weekend for a drink(which i still do but not as much lol).

[lou]

Hey Adam, I'm Louise and also from the UK, although I'm down in Exeter! 

Can relate to a lot of what you have said. I found out I had kidney failure out of the blue too and guess if I'm honest after the denial part felt pretty angry too for a while. Never really felt ill either (which I know I'm really lucky for) but it makes the whole think more surreal doesn't it? You kind of feel like saying "are you sure you haven't confused me with someone else who is really ill!"

I did 6 months dialysis and had a transplant in march this year (I'm 29 by the way). The only thing that kept me going was hoping the transplant would happen soon and although lots of people told me I couldn't think like that in case it didn't, I couldn't help it.

I did pd and although obviously its horrible,  it wasn't too bad and you do get use to it. It never stopped me going out with mates to the pub and stuff like that and most people at my work didn't even knew I was on dialysis.

Anyway just wanted to say hi and hope your doing ok. It is pretty shit but promise it will get better. Since my transplant 4 months ago (fingers crossed so far its going really well) its been amazing, almost like the dialysis becomes a distance memory and you can just get on with life again.

Things will def get better and you will have a great 20's!!

Take care and keep that chin up, Lou x x x   

[Teepo18]

Hi Lou!

Wow transplant so quick! Hope you dont mind asking but was it from a living donor? I have to wait till at least December because i had a disease which attacked my kidneys and it could come back. Had chemo and everything. Its so strange having so much done to yourself in such a small amount of time. Glad im out of hospital though!

I think im more vein than anything lol, id have the fistula if you couldnt see it or feel it and you could still do stuff like lift weights and what not. I see everyone at my centre and they have all these horrible lumps and bumps in their arms...:S blah! Really not for me so im gonna take a chance and stick with this perma-cath!

[Rerun]

Ya know what? The permacath is fine.  Don't let them push you into anything you are not ready for.  Just take good care of it and keep it dry.  There was a doctor on hemo dialysis that was in my old center and he didn't have a fistula.  He had a permacath.  What did he know that they are not telling us?  Best of luck with the transplant road.  Keep us posted.

Rerun, Moderator     

[Teepo18]

W00t! Hehe thats made me feel so much better! Thanks. Also im on prednisone to keep my immune system low and stop any inflamation because of this disease(which i cant even spell!) i had so by having a low immune system, wouldnt i get infections so much easier and here i am 6 months and not a single problem with it so ^^ all is good lol

[chook]

G'day Adam! Glad you found this site and all the support it offers. I am 'addicted' and check in often now to find out how everyone is doing. It's amazing the range of information and stories available. I'm opposite to you -happy on PD but only been on a little while, and terrfified of HD! All the best with everything!

[looneytunes]

Hi Adam.  Sorry to hear all the troubles you've been through but it's great to see such a positive attitude!  Welcome to our group.

[cariad]

  Adam!

What sucks so much from reading your story is that you were ill for most of a year it seems they didn't manage to pick up the kidney issues in that time? I know at least one member who will read that and use that one for ammunition against the NHS!

Yep. Although, sorry to disappoint any members, but my early symptoms were ignored, and I was misdiagnosed and prescribed dangerous, nephrotoxic drugs unnecessarily. This was all the work of American hospitals and doctors. Then my parents got to pay the bill. I agree, Adam, it does suck, but you seem like you are determined to put this bad luck behind you and do what you can to salvage this situation.

Great to meet you. I look forward to hearing more about your journey!

[jessup]

g'day and 

[lou]

Hey Adam, no my kidney was from from the list, think I was just very lucky to get the call so soon. (was on list 18 month but dialysis 6).

Over the 18 months my mum, brother and boyfriend were all tested to be live donors but sadly all were ruled out for different reasons..... my mum had a cyst on her kidneys and they told me my brother and boyf were both a really bad match. As I am young the docs suggested I wait on the list and hope for a better matched kidney. When i got the call in march all i was told was kidney was from a male, 48 and a 5/6 match. Can't even tell you how its changed my life and feel soooooo grateful to him everyday.

I will keep everything crossed one of your family members is a good match for you. I know its hard sometimes but try and stay positive, things will work out for you. take care x x

[Teepo18]

I really do hope one is a match! Going crazy at the mo!!! xD lol not too bad to be honest, just fed up that im not working. Dialysis was quite good today....heh well it went pretty fast except for the part where they had trouble changing my dressing! Got all tangled up with my line. Took like 20mins to take off but ah well all done! Can chill out tomorrow!

[dialysismomma]

HI Adam and welcome I am dialysis momma and I am a certified dialysis tech and a caregiver to my fiance who is a dialysis patient as well. I understand your whole reason for not getting a fistula and as many others have told you the perm cath should be fine as long as you dont get it wet at all and you make sure your dressing stays on. The number one cause of infection is because people have got it wet and the moisture just breeds infection. I will be happy to answer any questions you may have from the tech aspect or as the caregiver aspect. Feel free to ask anything. My fiance has a fistula and he does have the large bumps you were talking about but his is in his upper arm and he wears longer sleeve t shirts to cover his arm. If you did not know he was ill you would never be able to tell. Welcome and good luck with all.

[edersham]

Hey Adam,

I totally agree with rerun about the permacath. The clinics worry about the statistics on infection but if your clinic is fanatical about hygiene and you are too it should work out. I had a permacath for 3 months before my transplant and my Neph said it was good for 6 months and then if necessary I could get another one. I know a transplant recipient who got dialysis for 21/2 years with permacaths without any infections. Hygiene  at the clinic and at home is vital though.

Ed