kidney failure dialysis

[jamie45]

Hi my name is james im 45yrs young, I was diagnosed with stage 5 kidney failure back in 2007 I was totally devastated shook my world I was totally alone when I received the awful news.Sinc then I have been having dialysis at different hospitals,but I now dialise at my home in Wiltshire England,i got close to a transplant last feb2012 but all fell through at last minuite (THATS LIFE) so life is hard at times but you gotta keep trucking on never give up theres always hope!!!!

[googie]

awww James that is a shame Must have been a terrible shock to be on your own when recieving such news.

[ladybird194]

Hi james,

Like you I dialyse at home - CAPD - and there are times when I could get all my eqiupment together and quite cheerfully set fire to it all!

Luckily I have a very supportive family and my hospital team are fantastic. I am just about to be 'activated' on the Tx list, so as you say, keep trucking!!

Best of luck to you

[jamie45 in reply to ladybird194]

thanx

[soob]

Hi James,

I am at present on stage 5 and I applaud your strength and determination. Fortunately I have the backing of my family as I go through all the tests prior to dialysis and /transplantation.

I too hope to dialyse at home .

It's good to hear you are more settled and good luck and best wishes to you,

[jamie45 in reply to soob]

thanx

[Moggymolly1]

Hi James

Sounds like you're very strong, keeping everything crossed that you get a transplant soon. I have PKD and even though I've known since being tested at 10 it is a terrible burden when my grandad died at 39 from it and my dad was on dialysis at 49. I have been to Leicester this week to get tested to join the transplant list. I have a few friends who are being tested to be live donors but if I don't find one I will be on dialysis at home on the stomach type. I am having lots of holidays and doing what i want whilst i can. Do you manage to work? Really hope you get a transplant xxx

[jamie45 in reply to Moggymolly1]

thanx im keeping my replies short 2nite cos im knackered from dialysis treatment 3day

[Hardworkthisbeingpoorly in reply to Moggymolly1]

Hi Moggymolly just noticed you said you are going away a lot while you can ! I am on the stomach dialysis it's called PD lol . I went to Australia on my own and took my PD machine with me . When I got there all the medication for the dialysis machine was all ready for me where I was staying don't let anything stop you living a great life even if that means you have 2 holidays abroad every year . Go for it keep smiling I've been on PD 4 years got a bit of experience so if you want any advice just message me !

[GrannyChris]

Hi James,

Bad luck about the transplant, hopefully you will get some better news soon. Hang in there, best wishes xx

[jamie45 in reply to GrannyChris]

thanx 2u

[fenal]

hi,

my blog/book ...... or should i now call it my bloog !?-might help;

mylifeasapincushion.blogspo...

[jamie45 in reply to fenal]

what!!!!!

[fenal]

so wot do u mean by what?

[Hardworkthisbeingpoorly]

Hi James I do dialysis at home , it's the PD type and i too find it frustrating luckily I live with my parents who are amazing . Ian on the kidney pancreas transplant list and got a phone call 2 years ago to go for a transplant but when I arrived at hospital because my BMI body mass index was too high they sent me home and suspended me off the list 2 years later I went through depression had to take anti depressants which made me gain more weight. I have lost a stone yaaay need to loose one and half stone more then I Han be re enlisted back on the list , it's mega hard but got to keep going never give up . I never thought it would be this hard but I have first class support from my renal team . Keep trucking James your not alone buddy

[louise1971 in reply to Hardworkthisbeingpoorly]

Hi I to need a kidney/pancreas transplant. But no one really tells me anything, will I need to have dialysis? last blood tests my GFR was 14%. reading your post has concerned me!! they said I would have to wait about 18 months for the double transplant, they gave me the heart tests and now think I have a blockage in my artery, so will need that sorting before I can be considered for a transplant!!! I feel at the moment that my life is on hold not sure what to say, I am diabetic type 1, now have CKD stage 4, dicky ticker trying to work full time with all the hospital appts, feeling tired all the while with no energy, not sleeping, had depression for years and now having shortness of breath (which I have now put down to the heart) I think it is disgusting that they can call you in for a transplant and then send you away because you BMI is too high!!!! your stress levels cant be helping your health either, that's all I have to say really, if anyone can enlighten me on the process I would be most grateful. I have also changed my diet and cut out fizzy drinks especially coke, I no longer drink tea or coffee and have no salt. I have also stopped smoking!!! what else am I supposed to be doing???

[Hardworkthisbeingpoorly]

Hi Louise

It's really good to finally speak to someone in the same position health wise as myself. Just unfortunate that we both need kidney pancreas transplant .

Well where do I start . Ok firstly I have had progressive CKD for 10 years which is a complication from my diabetes and only in the past 4 years have I been on dialysis ! Which may seem harsh but if you have self discipline it's much much easier. The answer to your question about will you have to do dialysis ? I'm sorry to tell you but the answer to that question is yes ! But fear not you will get the help and support to get you through it . I have a fantastic renal team at my hospital that are always only a phone call away. I chose to have Peritoneal dialysis and although this takes 9 hours every night to do it also gives you more freedom throughout the day to lead as much as a normal life as possible . This means you can still work and do the things you normally do through the day . Heamodialysis on the other hand is 3 trips to the hospital per week and in my opinion is very restricting therapy to have and spend 6 hours in hospital 3 days a week. So yeah 4 years I have been doing dialysis every night . I could talk for ever with the experiences both good and bad mostly good , the best thing was when I went to Australia on my own and had to take my PD machine with me , oh my god what a fantastic experience

Anyway if you would like to know any specifics about my experiences with CKD please message me I will always be happy to discuss anything or help you along the way