undecided :/

[lauralou88]

good morning,

I'm 28 and getting ready to start my dialysis soon as my GFR has now gone down to 12%.

may I ask what stage people started dialysis?

I DID opt for haemodialsis, but now its come to the crunch I'm petrified and really don't know which one to choose now.

I have 3 children youngest being 3,so hes still In nursery.

I hate needles too, and I mean that with a passion,but now going off the idea of a catheter!!

ive tried to google pros and cons off both choices,but I'm finding google isn't helping me as much as I would have wanted.

so please any help, tips or advice will be very much appreciated.

xx

[lauralou88]

I meant to put I opted for peritoneal!

[Philipjm]

Good morning Lauralou88,

I have been on PD vag exchange for 13 months and it has changed my life, I can only tell you that I feel so good now and do most of what I want to do.

I am 70 and work full time in a demanding job, have a large garden that I manage myself.

Enjoy walking with my wife and I cycle when the weather is good.

Just a matter of adjusting to do everything in 4-6 hour slots but maybe you will have machine dialysis overnight.

This may be a better option with 3 young children but yuh can change between bag exchange, 4 times a day in my case to 1 overnight by machine.

You have to choose what is best for your lifestyle and above all it has to fit for you and not dictate your lifestyle.

We are planning a trip to Sydney next year and this is entirely possible.

You will have the support of your local PD team and your own PD nurse.

Hope this helps

Philip

[Philipjm]

Hi,

Meant to say my egfr was at 9% when I started my dialysis

Philip

[lauralou88 in reply to Philipjm]

Wow. Thank you so much for your reassurance! 70.. your fitter than me.

I hope your holiday to Sydney is a dream come true.

Thank you so much again

X

[Nicolala]

Hi lauralou

I have been on dialysis for 26 years. I had a brief spell on PD many years ago but it wasn't for me.

I hate needles! I can't bear to watch them on TV even. However, as daft as it sounds, HD needles are so big they don't seem as menacing. I have put my own needles in since I first started dialysis. The fear is much worse than the reality in my view.

I dialyse at home, overnight, 4 nights a week. I keep well and work.

Dialysing at hospital 3x a week did impact on my home life a little. I had a young son back then.

PD- my catheter was permanently infected from when it went in until it was removed 6 months later. I felt dreadful the whole time. In all honesty, I hated it. I hated the catheter, bags, everything. I had a 4 inch scar down my tummy and a catheter site.I was only 23. Fortunately I never got peritonitis.

It's a personal thing. You will hear from those who swear PD/HD is best. It's about you and your life. Everyone has different experiences. Trust your instincts.

Good luck.

[lauralou88 in reply to Nicolala]

Thank you. To be honest I was wondering if the ( magic cream ) numbing cream would work before HD.

But that's what puts it off for me. My 3 year old son who never leaves my side. My other 2 are in full time school so the hospital appointments wouldn't matter to them as they would be at school. My 3 year old has the odd problem, i.e. Doesn't talk, so he's staying behind another year at school. The hospital visits for those couple of hours would be a nightmare to do wouldn't they. I don't think there is any way on gods earth I could needle myself 🤢 I would seriously be on the floor, think with sweat, knocked out. I am a nightmare.

Thank you for your advice xx

[Nicolala in reply to lauralou88]

Lauralou

I understand your worries about your children. Luckily my husband took care of my son and I dialysed in the evenings. Yes-Emla cream does work. Some people put it on an hour before dialysis, others like 2 or 3 hours for it to work. Everyone is different. I used it for many years. Now I don't bother. I use what's called buttonhole technique - you form a track so the needles go into the same holes every time. They are blunt. It's less painful and the fistula is much less scarred.

Regarding your thoughts on not needling yourself : now it sounds like the most impossible task. You might surprise yourself. Trust me. Even now I wouldn't watch either another nurse or patient put needles in, yet I do it myself. You know when it feels right. Some nurses are brilliant needles. ....some aren't and you'll soon learn who is/isn't! But when you do it yourself, and learn how to use the machine, you have so much control. It's quite empowering.

If you have enough space at home it's possible to dialyse on a machine, at a time that fits in with you. I do 8 hours overnight, 4 nights a week. I self care as I live alone now.

I know you are young and this is such a lot to deal with. My kidneys began to fail at 17 and I was on dialysis at 20. I had my son at 22-the first person in England to have a baby on dialysis. So I've been there and got the t-shirt😊

Please ask anything that you have questions about. I'll answer them honestly.

Nikki.

[Elly57]

Hi I am also 12% GFR and being prepared for dialysis, I had the same dilemma as you regarding PD and not liking needles. I am also being worked up with a donor for a pre emptive transplant and my consultant took the decision that I should have a neck line as hopefully it will only be a temporary measure. I didn't think I would be able to have this as it wasn't one of the options given to me, but am pleased that if I have to have dialysis that I have this as From what I have been told it is a more straightforward op to get tube in. Let's hope I am not wrong LOL I am sure I will encounter some problems though.

[lauralou88 in reply to Elly57]

Hey

Did you have any other complications, with having the neckline tube?

My other halfs friend had that last year as they found he had no function left. Just wondered if there was any other reason for it to be put in or just put in due to your function.

I've also had my stress test... what will happen next

Thank you. Take care xx

[Nicolala in reply to lauralou88]

In Nottingham where my unit is, the neckline is rarely used and only as a temporary measure. They are unreliable. A chest line tends to be used only if a fistula or graft are unsuccessful. The latter are the most reliable and least likely to get infected.

[Ianm]

If it's egfr 12 then you are stage 5 ckd

[Charlene_Coxhead]

Hi

I'm sorry to hear that you have to make such a decision at a young age. I'm 35 and too have had to make that decision my self and opted to do HD at home after having the training required.

My renal function is 10% and after a spell in hospital due to gaining 2st I fluid in 10days I thought dialysis was going to happen requiring a neck line. However this is not the chase and 8 months on and still coping with a high dose of furosemide and no dialysis. My parents had the work up for being a donor and paired donor but unfortunately that has not worked out as it was found dad was a match but only has 56% renal function and then mum went ahead and had 5 months of tests to find she has a smaller kidney which isn't functioning as it should so can't be accepted on the the exchange.

I know this doesn't answer your question about starting dialysis because every body is different and the unit you are with will access how well you are coping.

The reason I am going to be opting for HD at home as it gives me control and I have a very slight frame so bloat easily and when considering the fluid you use on PD I didn't feel it would work and the doctors agreed.

I hope it works out for you and that you get your donor from your family. I wasn't one of the lucky ones but I hope you will be fine.

Have you been shown round the unit where you get treated? This might help you make your decision.

Where is your unit? Don't ever be scared to ask questions I find it helps me to take control of my condition

Charlene x

[lauralou88 in reply to Charlene_Coxhead]

Hey. That's totally rubbish for you isn't it. As long as you are coping. Thank you very much.

I did opt for PD at home as I wanted to not loose my time with my children. My youngest being 3 he doesn't leave my side. Inseparable 💗 He's what gets me through my dark days. I think I will end up have PD. What's it like having the tube? Does it hurt? How long did it take to heal? How long did it take you to get use to it ?

Sorry for the million and 1 questions xxx

[Charlene_Coxhead in reply to lauralou88]

Hi

I still don't have a fistula with 10% gfr. I've been told that it takes 3 to 6 weeks to heal. I see my consultant on the 22nd to talk dates for surgery now we know that my mum can't go through with being a paired donor.

The training for doing HD at home takes about 12 weeks. I didn't like the thought of doing daily PD sessions even if it is a night as it's that reminder everyday of having a kidney condition.

Don't feel pushed into having dialysis if you think you are coping ok with the drugs you are on, or asking if there is a way of delaying it with diuretics. May doctor is good at looking at the bigger picture and not just going on my blood results. Since being but on Epo Injections to increase my haemoglobin I have felt a lot better. Are you on them?

My advice is to sign up to patient view so you can see your blood results if your not already on there as you can track your results and see if you can see a pattern on results when your having a bad day.

I hope all works out with yours plands for a donor and only for a short period before having a transplant.

Keep us posted on how you get on

Cx

[lauralou88 in reply to Charlene_Coxhead]

Thank you. No not on them but I have had patient view for some time now. It's good isn't it. Helps a lot when you can see yourself what's going off. What are the epo injections never heard of them xxx

[Charlene_Coxhead in reply to lauralou88]

Glad you've got patient view it does help with understanding your condition and how you feel.

Epo Injections are to replace the hormone erythropoietin that the kidney should make and doesn't when in kidney failure which means it can cause a low hb mine was 67 when I went on it and should be 120 so inject myself weekly with 4000 units into my stomach. Because my hb was so low I gained over 2 stone in fluid retention which then caused fluid on the lung and around my heart. I was admitted for 7 days whilst they got control of it. It was scary as thought emergency dialysis was going to have to be used but fought back.

Just because the doctors start talking about dialysis doesn't mean it will happen. I hope I can keep going a bit longer. I have a new niece or nephew due in March so my aim is to be dialysis free for this.

Cx

[lauralou88 in reply to Charlene_Coxhead]

My hb is 123. That's normal isn't it. Congratulations on your new baby niece or nephew xx

[Charlene_Coxhead in reply to lauralou88]

Yes that is normal so no need to have the Epo injection.

Keep me posted on your progress. I hope all goes well for you.

Cx

[lauralou88 in reply to Charlene_Coxhead]

Thank you. Take care xxx

[Scotsfolk]

Hi Hubby was at 12 % when he went onto PD , ( 3 years in April ) Apart from the odd hiccough its made such a huge difference to him. More energy feels healthier , we have even returned to caravanning , machine goes with us too and behaves beautifully . We have built up our confidences by visiting family, then hotels and this year we are planning a holiday abroad . Im a bit nervous but thats me all over , Hubby cant wait bless him.

If we can be of any help just message us

June

[lauralou88 in reply to Scotsfolk]

Wow that's good to hear. I'm really scared I don't know which one to choose now. I did opt for PD now I don't know 😒 I do know I can't stand needles 😱

I hope you have an amazing holiday. If you haven't yet decided, we go to Sa Coma in Majorca.

We totally love it!! Beach like Maldives. Every where is spotless an all rounder big thumbs up. So if you still not sure have a google. It's an amazing place. Good luck with everything.

And thank you so much xxx