Chronic kidney disease

[Betty29]

Hi I have chronic kidney disease and have just recently learnt that it has got worse at that it is now at stage 5 with only 8% working and I'm at the stage of needing dialysis. I am 42 and I am just wondering what the average life span is my age and kidneys roughly the same as mine and how long can i live on dialysis without a transplant and if I have a transplant how long could I live afterwards Thanks.

[joanneflagg]

Hi Betty29...

I am new on this site and just learning about my stage 3 CKD. I wish I could give you more information and I think there are some that will respond that know far more than I do. I just wanted to say that I wish you well and hope you get answers for the questions you have. Have your doctors not been helpful? Can they give you any answers? Take care and God bless, Jo-Anne

[Shane84]

Hey Betty.... im Shane. Im 32 ive been stage 5 for 3 years now. I do dialysis and from what i know you can live on dialysis indefinitely. With regards to transplant its really based on a lot of different factors. Age-diet-live donor etc etc..... every case is different.

Try not to panic. You can live a full life with treatment. I still work full time and enjoy a lot of activities. Ask you doctor about peritoneal dialysis it is a much better option than hemodialysis.

Best of luck.

[KatieRL]

Hi Betty29 - my kidney's failed when I was 49, I was on dialysis for 11 months before being offered a transplant. This was a huge shock as I had been told tx was out of the question. You can, however, live very well on HD dialysis for many, many years. PD dialysis is usually restricted to 4 years as doctors want to avoid scar tissue issues. Have a chat to your low clearance nurse, I've always found them so much more helpful than talking to doctors!

[phillen]

Hi betty29 No one can really say my husbands been on dialysis 6 years now my friends cousin has been on dialysis over 30 years when you read figures of life expectancy you have to remember when they work out figures a big majority on dialysis are elderly therefore don't have a long expectancy so don't scare yourself my husband shift at his clinic are all older than him he is 61 he says he don't think about it now

also a transplant patient can live many years average life span my uncle had a heart transplant at 48 he's 72 now so good innings he thinks!

So all in all no one can really say just look after yourself the best you can xxx

[Betty29]

Thank you for your lovely and helpful replies everyone and yeah my consultant is helpful but when I asked her she didn't want to answer I just wanted a rough idea I have 4 kids 2 of which are still teenagers my youngest being 13 and I have 4 grandkids all under 5 the youngest born 2 days ago so I just want to try and spend a much time with them while I can but she just won't answer me I know its hard for them bscuase they don't like you thinking about that but you have to sometimes so its not a shock if you get really ill

[Nicolala]

Hi Betty 29

Number 1. I am 45. I have been on dialysis for 26 years. I work and have a life. I'm not going anywhere just yet😊

Number 2. Please, please don't pin all your hopes and dreams on a transplant. I had one after waiting 16 years! It never worked and was removed after 4 months in hospital.

Dialysis outcomes are much better now than 20 years ago. People generally feel better. Try not to Google things-dialysis has a negative press and it's not helpful.

With regards to a transplant -it may last one year, it may last 20. It may not happen at all- but you would just go back to dialysis in the event of it failing.

Finally... take it easy! You have many, many questions at this stage. Once you start dialysis, you will get some answers, and many more questions. The main thing is to stay positive. The reason for dialysis is so you have a life, so live it. Don't just live to dialyse.

Remember you aren't on your own-many people here will have been there and will help you.

Take care and good luck x

[Betty29]

Thank you Nicolala for your reply and info I really appreciate it

[alwayslearningchris]

There are two ways of thinking about it, both useful. One is to look at the actual statistics. The factors that most matter are one's age starting dialysis and what triggered the kidney disease (diabetes, hypertension, etc.) Here's one chart:

usrds.org/2015/view/v2/06/I...

from a longer article:

usrds.org/2015/view/v2_06.aspx

Someone who is in the 22-44 age range and on dialysis has a 73.8% chance of still being alive after 5 years (they don't show a time period longer than 5 years).

The other way of looking at it is: these statistics are averages. If you are willing to work at it, you can do better than the average. Bill Peckham makes this point and provides more detail and inspiration here:

billpeckham.com/from_the_sh...

[toeragthecat21]

hi betty29 you can get well over 10 years on dialisis.but never give up..i have recently had a transplant which is going well at over 100 percent..the call came when driving van.and had to be in london in three hours..and in for op 4 hrs later..so had no time to worry...donated kidneys can last over 20 years..hop everything goes well.if you need more advice dont hesitate..chris

[poppydolly]

It is not helpful when people, like ctong54, quote statistics because it is from one source and it is impossible to say because every single renal patient is different. You are unique.

It cannot be stated that PD is better than HD. again everyone is individual and we have our own needs and requirements - work, family, housing, support. You will be lead toward PD because, to be blunt, it is alot cheager than HD but do not be afraid to say you don't want it or to change or mind once you have started.

The best advice I can give is to have a positive mental attitude, it has got me through the tough times completely on my own, and anyway the only person who suffers by you being down and depressed is you. People soon get fed up of listening to someone moaning all the time. Keep smiling and laughing it'll do you wonders.

[toeragthecat21]

hi betty 29 i was exactely in your position 2 years ago..you should now be on transplant list and having tests ready for it...i went for peritaneum dialisis which is easier on the body..i was on dialisis for two months and the call out of the blue..so what ever you do dont panic your in good hands...ps the internet has all the answers you need and videos...keep positive take care from chris