Dialysis, when did you start..

[Bettyboo]

Hi all,
I have just received via patient view my latest blood results which show I am now gfr8. I was wondering what kind of stage people generally start dialysis? How bad did you feel? I am sleeping lots, feel dizzy and sick most days and have a constant headache. But I still manage (just about) to do a full time desk job and be a mum to two children. What gfr did people start dialysis and did it make you feel instantly better? X

[SKM23435]

I started peritoneal dialysis at eGFR of 9. I was tired and nauseous at this stage. I wasn't desperate to start dialysis but it was viewed a gentle start would keep me able to work, run family etc without me having to become horribly unwell first.
I have to say that looking back this approach worked for me. It was a gentle (as it can be) start and yes I did feel better for starting.

[Bettyboo]

Thanks for the reply. Are you having peritoneal dialysis? That would be my preference. From the sounds of it, it sounds the better option to still be able to work full time.

[SKM23435]

Yes. I did overnight PD at home. It left my days free to work, look after the family, sleep. It's gentler than HD, but as others will tell you it doesn't work for everyone. I liked it as it was under my control what time I hooked up etc and I was at home. Backup and help if required was only a phone call away.

It worked for me.
I've been lucky enough to have a transplant now - that is fantastic. A new life. I didn't realise how unwell I was with a low eGFR until I received it. It's a whole new life.

Good luck and best wishes

[Daisy4246]

Hi
When l was gfr8 I started dialysis. So it could be very soon for you. I started PD in October 2016 but had problems then went to HD. I didnt want to do this but had to. Now l can say that you never know what is good for you until you try it or have to accept it. It's amazing now as l don't feel that nausea and feel alot stronger. Turns out it was the best thing.
Good luck on your journey. I'm still on mine.

[Bettyboo]

Thanks for your reply. I am seeing my consultant on Wednesday so hopefully we will make a plan. I am sitting at my desk today feeling sick and aching, like flu symptoms. It seems to have hit me hard in the last couple of weeks. Getting very tearful about things, need to pull my socks up really. I have a wonderful sister who is a match and we were initially looking to do a transplant before I needed dialysis. The trouble is, we were hoping it would be a bit further down the line as my sister has two very young children and wanted them to be a bit older so it would be easier. (She is still breastfeeding the youngest). I notice my Iron levels are getting low, maybe another course of epo and all will be well again for a few more months.

How come PD didn't work for you? Are you finding HD ok to deal with?

Sarah x

[wagolynn]

Not all patients can have PD, the peritoneum my not be suitable due to operation scars or damage, and some patients do not have sufficient volume available inside the peritoneum. Some patients get ruptures due to the fluid in their abdomen.

Haemodialysis works fine, and most units will try and accommodate you on times to enable working. It is possible to do home haemodialysis, it depends on what they do in your area.

If you need to delay a transplant, dialysis can be used for years.

Low blood count will make you feel very low, kidney failure makes you incline towards depression, it's to do with the chemical balance being wrong.

[Daisy4246]

Spot on with previous answer. Had an exit site infection on PD, 3x a day. I embraced it but later fluid went around the lung so had to stop and had no choice but to start HD with a neckline.
Found very strange at first but started to feel better within a week or so. Its routine now and no more PD stuff to deal with and constant exchanges.
However l know many at the unit who were doing really well on PD. As I've read on this forum, it's true that we are all so different and so is our best treatment.
Next step is fistula as neckline already giving me hassle.

[Bettyboo]

I had never heard that the fluid can leak places. I had a session with a dialysis Nurse a few months ago but it all seemed very positive. Suppose they don't want to scare you off. Glad you are getting on so well with HD, and good luck with your fistula.
I had my appointment with my consultant today. They are trying 6 weeks of epo to see if that picks me up a bit. Then in 6 weeks we will arrange to have the pd line inserted. If the epo hasn't picked me up they will look at starting dialysis. If I feel ok, they will still do the line but keep it hidden until I am ready to start.
I feel better already knowing there is some kind of plan. Fingers crossed for magic epo x

[Daisy4246]

Thanks for your good wishes.
Btw fluid leak is very rare. PD is nice gentle dialysis.
It's good to have a plan in place. Good luck with it all and do update on how you get on with it.

[thegallops]

Yes. I did overnight PD at home. It left my days free to work, look after the family, sleep. It's gentler than HD, but as others will tell you it doesn't work for everyone. I liked it as it was under my control what time I hooked up etc and I was at home. Backup and help if required was only a phone call away.

It worked for me.
I've been lucky enough to have a transplant now - that is fantastic. A new life. I didn't realise how unwell I was with a low eGFR until I received it. It's a whole new life.

Good luck and best wishes

Hi Pleased re your transplant would like to know how you are getting on with the rejection drugs

[SKM23435]

Hi thegallops,

I had my transplant 2 1/2 years ago and I’ve never looked back.
I’m back to living life as normal. I feel “normal” what ever that is.

My anti rejection drugs (Adoport and prednisone) don’t cause me any problems. I am aware I am slightly more prone to infections but it’s not a huge problem. I’m sensible. I have my flu jab. I avoid “dodgy food”. My only hospital admission so far post transplant was sepsis caused by a urinary infection.

As we are told - a transplant is a treatment not a cure. As far as I’m concerned it’s pretty brilliant. Others have different experiences, a rougher course.

You outline your dilemma in a different post.
From a personal point of view I felt going for a transplant was a no brainier - but we are all different with different health problems and different lives. Am I pleased I did - yes. Without doubt.
I am 57 (55 when I had the transplant). Would I have a transplant agesd 72? Not having been there I don’t know. It depends how fit I was but I suspect yes.

Hope this helps.
Good Luck and best wishes

Sue

[thegallops]

Thanks Sue for you reply, it is a great help knowing you are doing well.
Keith