I have 3weeks to decide about dialysis. I am end stage renal failure 15%. I don't keep well and have been advised to start HD.

[elithomson]

I need time time to get my head round this. Is it best to start when I have some kidney function or hang on to the last minute? I don't know what to do for the best. I had my fistula made a year ago so its ready to go! I'll be 66 years old in a couple of months and I badly need advice. Many thanks.

[phillen]

depends how ill your feeling if you leave it too long you may feel very ill CAPD preserves your kidneys for longer my husband still has about 2/3% compared to 6% when he started 3 years ago at 6& he was extremely tired struggling to get through each day but now combined with the dialysis he has more energy! i'm not sure about HD but we have a friend who is on HD & he feels much better since being on dialysis if your unit wants you to start its probably best to!

although 15% still sounds good enough not to start yet if you feel ok!

[soob]

Hi there,

At 15% you are still stage 4. Stage 5 or end stage renal failure comes at about 8-10%.

Last year I dropped to 12% so they did the work up for dialysis and possible transplant, and I had my fistula done. They also told me to lose weight for the op and lo and behold my kidney function went up to 16%, and I really feel a lot better, not perfect, but better than I used to feel.

Once you start dialysis you are then tied up three or four half days a week, and I know this limbo land that a lot of us are in is not ideal, but whilst I am tired much of the time at least I am free. I had two aunts with the same as me , PKD, who went on to dialysis for a number of years and presented with a lot of side effect problems.

So for me, I am going to hang on for as long as possible. In this neck of the woods they don't usually start dialysis until kidney function is round about 10% ish depending on the individual. And whilst I was champing at the bit a year ago to get started I have since come to realise that I prefer as much freedom from intervention for as long as I can .

I don't know why you have been given three weeks to decide, because I suspect you are monitored regularly, and can surely decide with the advice of your consultant. Unless you are feeling really ill at the moment.

Sorry for such an essay but I hoped it helped.

I am 64 by the way and just danced the night away at my sons wedding.......well I paid for it the next day!!!

Good luck,

Sue x

[elithomson in reply to soob]

Hi Sue. I never see the same doctor twice at my renal clinic. I have regular monthly appointments and different doctors say different things. I feel breathless and tired but I'm dealing with it myself and I know the next doctor I see in a months time will suggest I wait. Its like a see saw of advice from them and. I thank you for your honest points and advice. I think I will reconsider my options to delay dialysis as long as I can.Glad you enjoyed your Son's wedding. Betty x

[rabbit01 in reply to soob]

I am CKD 4 with 18% egfr. Did you stay off dialysis Sue. If you are on it how has it been for you?

[soob in reply to rabbit01]

Hi there rabbit,

Well I am now at 12% and not on dialysis yet, and aim to keep off as long as I can! So I am still hanging on in there.

I have my fistula so am set to go, but as I said I aim to keep off as long as I can.

I feel very tired sometimes so I have to pace myself.

I have bloods done every 6 weeks and see the consultant every 12 weeks.

I am hoping to get a transplant at some point, but need to work on losing a bit more weight first.

If you look after yourself and drink plenty of water, keep off salt, all of which you know, there is no reason why you can stay at around 18% for several years.

I have PKD by the way.

So good luck to you,

sue x

[rabbit01 in reply to soob]

Good for you Sue! Thanks for the advice. I only got diagnosed in mid April and at that stage was already 18% so I don't know how long I have been like that. I used to love salt on everything. Am now on a sensible diet with no salt and no cola and I have eliminated processed meats and red meat. They have no idea what caused my problem. Take care. Warren

[fenal]

they call it the honeymoon period: the first few weeks after you start dialysis. you actually feel better.

I wrote a book BUT NOTE I will get no money if you buy/ down load it. part of it takes you thro wot you now going thro.

let me know if interest. I can tell you where on net you can buy/down load or read chapters for free.

[elithomson in reply to fenal]

Sounds like a very interesting read. Any insight I can get into dialysis would be good. Much appreciate the link and well done putting pen to paper on our behalf.

[fenal in reply to elithomson]

try this -mylifeasapincushion.blogspo...

[pluto94]

The fact you're not keeping well is more a reason to go for it , There is no set point that is best to start dialysis , as people react differently , If you are as ill then that is the reason why the doctors are advising you . I moved area just before starting dialysis where I was they were quite happy delaying my start as my function was 11% , where I am now on my first appointment they went in to a panic as I was not already on dialysis , I delayed it for a month till I was settled at home . it takes a few weeks to realize the difference dialysis makes to your well being. It can be tiring and does tend to control your life style , If you planning a holiday go now before you start as it is a hassle when on dialysis to get the treatments transferred to different units.

[granny31]

Hi so sorry, just been told my grand has ckd stage 4, what age is too old for transplant, she is 88, and has very bad mobility!!

[poppydolly]

like others have said it depends on how well/ill you feel. I went down to 5% when I started HD which was immediately after the removal of a 5kg kidney. 3 months on and I feel fantastic - I hope it lasts. what ever you decide do not be pushed or hurried into anything because its your body and your life