Need some advice, should I start dialysis?

[Melirm]

Hi everyone. I'm a longer time reader, first time poster! I would appreciate hearing your experiences of starting dialysis. I have CKD stage 5 with a gfr of between 9-12. I also have anaemia which I am going to have a blood transfusion to try to help with this. My plan for dialysis is to have PD at home.

I have been feeling pretty awful now for a few months slowly getting more and symptoms. All the usual try this and that have been tried and haven't made a difference. I have now agreed with my consultant to have the catheter put into my tummy ready to start dialysis should I continue to feel awful. I am now quite nervous about the situation.

Basically, my question is does dialysis help make you feel better? Do you notice a difference?

I don't want to start dialysis if I am not going to feel a benefit from it.

Thanks everyone I would appreciate hearing about your experiences. ❤️

[Philipjm]

Hi Melirm,

I started CAPD 2 years ago with a gfr of 9. Transformed my life, much more energy, still

Working full time at 70.

Unfortunately I have have peritonitis 6?times and two of catheters. Was so good for me but for some reason peritonitis would not clear up so have recently had an A V fistula and hope to start home heamo in 4-6 weeks time.

Dialysis for me was a game changer and can't wait to start the home heamo

[Philipjm in reply to Philipjm]

at home. Have been very low having not been on any form of dialysis for 6?weeks and another few weeks to go before I start home heamo.

You hospital dialysis of team will support you all thee way. Life will be good again

Philip

[Melirm in reply to Philipjm]

Hi Philipjm, thanks for answering. I am 45 and trying my best to work full time but am struggling. I guess I have felt so tired and awful for so long it's hard to believe that it will change, hence my worries about starting a new life long intrusive treatment. I just need to know it will make a difference.

Thanks for sharing your experience. I really appreciate it. Good luck with your new treatment. x

[jaykay777]

I am too old to be considered a candidate for dialysis, but if I were eligible, I would definitely do it. I base my opinion on what I've read here from readers who are on dialysis.

[Hidden]

Its generally thought that if your kidneys are defiantly going to fail starting dialysis sooner is better. Waiting and waiting till the last minute risks damage to the heart.

Dialysis SHOULD make you feel better. PD has a high risk of infection so you will need to be scrupulous about the hygiene around your catheter.

A friend of mine did PD for nearly 10 years without any infections, and was able to carry on pretty much normally.

Its also one of the most portable types of dialysis so you can travel, take it with you and fluids will be delivered to the hotel.

Many people start on PD (APD or CAPD)

Heres a quiz that can help you compare the different kinds of dialysis

davita.com/treatmentevaluator/

Also how PD works

kidneypatientguide.org.uk/p...

[Melirm in reply to Hidden]

Hi JMan, thanks for your reply and the web links which are really helpful. wishing you well. x

[Nicolala]

Hi melirm

It does sound like the time has come for dialysis. PD didn't suit me, I've been on dialysis for 26 years now and still work. Yes, you should feel better once you have got used to the treatment. Good luck.

[ahextall in reply to Nicolala]

Hi Nicola I'm close to dialysis and I was curious that you had been in dialysis for a long time. Did you ever get an offer of a kidney transplant? Obv new to all this but hope you didn't mind me asking ? Thanks Adam

[Nicolala in reply to ahextall]

Hi there. Of course I don't mind. I've been on dialysis for 32 years now. I was offered a transplant back on 2007. Unfortunately, despite the drs best attempts it didn't work and the whole experience was traumatic. The kidney was removed after 4 months in hospital. I took myself off the transplant list afterwards. I don't ever want another. X

[ahextall in reply to Nicolala]

Amazing and wahts a story that you have gone so far. Amazing. Tbh Nicolala I'm pretty scared as I'm 52 and really want to live a long life. Can I do so on dialysis? I want to be able to walk everyday and I do 5 miles most days but I'm told it's drains you a.of all energy....thanks x

[Nicolala in reply to ahextall]

I'm 51, I started dialysis at 20. The main advice I can give you is to learn about your treatment and medication. Have some control. I walk daily and even am attempting the couch to 5k. Life can be good. It is what you make it. There will be some challenges ahead, but we dialyse so we can live.

[ahextall in reply to Nicolala]

Sure and no choice basically :). Thanks.again. I've known about this desease for many years and it's reaching it's conclusion I guess. I'll stay positive and hope it goes ok

[Nicolala in reply to ahextall]

You will be fine. Just try to stay strong. Its a bit of a shock to begin with, but you will get there. Good luck.

[Chrissmart]

Hi Melim

If you are stage 5 you are on the point of total kidney failure. If you feel unwell, back pains, difficulty walking, sometimes chest pains, breathlessness and generally feeling s... that is kidney failure and dialysis will make you better. Kidneys filter out toxins and pass them out in your urine. That is not happening for you now. The toxins are building up in your body and poisining you at the moment. Dialysis will stop that.

You will probably start on CAPD or manual peritoneum dialysis. APD employs a machine that you use for approx 10 hours overnight I was on APD for about a year , but it did not suit me, I retained fluid and put on weight. I went to Hemodialysis and reduced the fluid weight gain in about a month. Later I went onto HHD home hemodialysis and the nocturnal HHD.

Good luck I am sure you will feel better. Incidentally I am 75.

Chris

[Melirm in reply to Chrissmart]

Hi chris,

Thanks for your reply.

That's exactly how I'm feeling, so I guess it is time. I just need some reassurance I guess, it feels like such a big step. The plan is to start on APD so that I can do at home overnight and still go to work. Fingers crossed.

Thanks everyone x

[Ricmed]

I started PD Dialysis 5 months ago. No infections yet. Yes you will feel better I did It was like a cloud was lifted and I could think clearly again. I’m hoping for a transplant. I still work but it’s getting harder as I still get so tired and worn out quickly. And it takes me longer to recover but I’m still better than before. Yes it a lot of stress just hooking everything up I just do it the same way every time. I’ll do PD As long as I can

[Smudgecats110]

Hi I wondered how you are now? Are you still able to work etc any news on transplant

[Melirm in reply to Smudgecats110]

Hi Smudgecat thanks for checking in! I’m doing well thanks. I have been on PD dialysis for just over 2 years now. It has made an amazing difference to my life! I do PD at home, overnight 5 nights a week. I still

Get very tired but I feel able to get on with things. I have been working full time (although I am currently on furlough from my job). But whilst on furlough I have decorated most of my house and regained my garden from the wilderness it had become! I

I am still on the transplant list, both for a deceased donor and my brother has offered to be my live donor, but doesn’t match me, so we are in the U.K. Kidney Swap register. No news as yet, but you never know... I hope you’re doing well.

[flagelman30]

you really have to start dialysis,,I started 8 months ago when my GFR went to 6..

you will feel better..if your kidney dr. says start,,you better dot it if you want to keep living..best of luck..dale