Living on a narrowboat: I am likely to... - PKD Charity for A...

PKD Charity for Autosomal Dominant PKD

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Living on a narrowboat

JulietV profile image
JulietV

I am likely to start on dialysis some time this year and was going to opt for peritoneal dialysis. Does anyone have any idea if this is viable on a narrowboat?

I would be considering the overnight dialysis, not continual.

Many thanks for any thoughts.

12 Replies

Hey Juliet, i am not on dialysis but just a old patient, what i will say is do the research and you will make the decision for you. All the best moving forward. I am sure that there is someone on here has the experience to share with you.

Thanks for the reply. You are right, I have been looking into it and I think its feasible!

Cheers. Juliet

I have a friend on a social media platform who is currently doing it

All the best

Hi Juliet,

Sorry to hear that. You might want to check if peritoneal dialisys is recommendable in pkd, I remember reading somewhere it may not be.

Best of luck

R

JulietV profile image
JulietV in reply to Rick234

Hi Rick, it is fine apparently, I was checked out by a surgeon, so may not apply to everyone.

It's a dilemma which to go for, HD or PD!

Susan_101 profile image
Susan_101Moderator in reply to JulietV

The PKD Charity is hoping to hold a webinar on the choices of renal replacement available soon.

Susan_101 profile image
Susan_101Moderator

Hi Juliet

You may wish to join the PKD Charity private Facebook group. It is specifically for those in the UK and the members are fantastic at sharing their personal experiences.

The PKD Charity also operates a support helpline 0300 111 1234,

facebook.com/groups/pkdchar...

JulietV profile image
JulietV in reply to Susan_101

Thanks Susan for the tip.

Hi JulietV,

I have PKD and am on PD. I don’t live on a narrow boat but I can’t see why you shouldn’t be able to do it. You will need a reliable source of electricity and a bit of space. The machine is the size of a large printer and needs to be on a clean flat surface. You will also need enough space for the boxes of liquids and supplies which are delivered once a month.

Overnight PD gives you freedom in the day which is so much better than going in to have HD three times a week.

Good luck

JulietV profile image
JulietV in reply to bunty_f

Hi Bunty, I have been told I cannot have PD as I don't have running water. The water is stored in a tank, and they say this is an infection risk. I am bitterly disappointed, but don't have an option, other than move.

Thanks for your reply. Juliet

Oh I’m sorry to hear that. I didn’t think of that as a problem. But thinking about it I do send a huge amount of liquid down the drain.

Good luck with HD.

Bunty

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