anyone do overnight dialysis?

coxy · Post by **coxy** » Wed May 07, 2008 1:35 pm

Hi,
my mum has been told she will need to start the dialysis in June and they have agreed she can do the overnight one, but i just wondered how other people have got on with it?

Shes feeling up and down about it at the mo, she seems to be putting obstacles in the way by saying things like, she cant always fall straight to sleep, that she sometimes has to get up in the night to go loo and how she wont ever be able to go on holidays again.

Ive told her to stop looking at it negatively and think of the benefits of it, ive also said if she keeps going on and on to the specialists about not being able to fall straight asleep etc they will say she has to change to a different type of dialysis.

Lorna · Post by **Lorna** » Wed May 07, 2008 1:45 pm

Hi coxy

I presume when you say overnight dialysis, you mean APD. If this is the case, I can maybe help with a few of your mum's concerns. I did APD for only a few weeks before my transplant as I found it the least restrictive method of dialysis for me as I had a 2 yr old child at the time.

Getting up during the night to go to the toilet, or any other reason, is very simple, either just cap off the end of the tube after a "fill" and then uncap and reconnect to the machine afterwards. If the line is long enough, your mum may even manage to stay attached - it's amazing what I found I could do attached to the machine, including clean up a sick child and change her bed!!

Going on holiday shouldn't pose too much of a problem, providing supplies of fluid and other items are arranged. The machine is portable, and although I never travelled with mine ( I wasn't on dialysis long enough to get the chance) others on this site have travelled, and I'm sure will be able to give you better advice than I can.

Your mum's bound to be feeling a bit up and down at the moment, I think the prospect of dialysis is actually the worst bit. Once the dialysis starts and your mum begins to feel better within herself, she'll probably wonder why she was so apprehensive in the first place. I think most people here would agree with that.

Best of luck to you both, and feel free to ask any questions you may have, no matter how daft they might seem. There's always someone here who can help, and has more than likely been through the same thing themselves.

Lots of love
Lorna
xxx

coxy · Post by **coxy** » Wed May 07, 2008 2:08 pm

Thank you Lorna for the message, we are attending a dialysis workshop on the 19th May and i just wanted to make sure that these "obstacles" my mum keeps mentioning wont be a problem.
Julia

lashy · Post by **lashy** » Wed May 07, 2008 2:42 pm

It probably seems over whelming for you all at the moment. The support day should answer many of your questions but this site is fantastic in supporting the patient and the family and friends,
take care
Emma x

Jax · Post by **Jax** » Wed May 07, 2008 5:49 pm

Just had to reply as you will see from my other postings this is all new to me too. In fact, after training and doing CAPD I have now just done my first week on APD.

I too had similar reservations as your Mum. Some on the practicalites of doing it overnight i.e. using the toilet; being a light sleeper; tossing and turning in bed etc; also pychologically I didn't fancy being 'connected' to a machine all night!

Well tell your Mum - don't worry! Honestly, even though I am just about completing my first week (which has had its moments) it has been far easier than I expected!

In fact, we are off on holiday next week for a few days, taking the machine and everything with us. So holidays are definitely not out of the question!

All good wishes to you and as a newcomer to APD if your Mum wants to know how I am faring in these early stages just ask. Also the guys and gals on this forum are absolutely indispensable, providing great help and advice.

Jax

JMan · Post by **JMan** » Wed May 07, 2008 7:07 pm

Whichever type of dx, overnight PD or nocturnal haemo you can certainly go on holiday although the latter takes a little more organisation!

The start of a new treatment can sometimes be a bit daunting.

J

wing · Post by **wing** » Thu May 08, 2008 10:00 pm

Hi Coxy,
Your Mum will probably feel a lot happier and settled in her own mind, once she's attended the Dialysis workshop.
They run them for precisely that reason - to answer the 1001 questions patients new to treatment have.
Your Mum's concerns are perfectly understandable - her "obstacles" are just her way of asking - how will I cope with this, that or the other.
What if the machine breaks down? what if the house catches fire? etc etc.
A good renal Nurse will answer all these for her - and many more that she may not even have thought about.
As Lorna says, the prospect of starting it is far, far worse than doing it.
Good luck to her.

Cheryl in CT · Post by **Cheryl in CT** » Fri May 09, 2008 5:22 pm

Hi, Coxy -

I never did APD myself, but just wanted to say (as others have already!) that traveling certainly will not be out of the question for your Mum!

I'm in the US, and a member of this board came to visit from the UK a couple of years back. He arranged with Baxter to have all of his supplies delivered in the US in advance, and he brought along his machine on the plane. Actually, since he was spending part of his time at my house and part in New York City, Baxter sent his supplies to both places, and everything was waiting for him when arrived.

It takes a bit of planning, but even for a 2 or 3-week trip, it is most definitely do-able!

Please give your mother our best. We all know how nervous she must be, but as she gets used to both the idea of dialysis and the "how-to's", she'll feel better & better about it. Meanwhile, she'll also be feeling physically better, which will help her to put all of it in clearer perspective.

all the best.
Cheryl

bigbuzzard · Post by **bigbuzzard** » Sat May 10, 2008 12:06 am

Travelling with the APD setup from Baxter is definitely very do-able, though does take a little bit of organisation, to make sure you don't forget everything. And despite the fact that they will deliver all the heavy stuff, there's almost always a bit of extra bits and pieces to carry along, so driving is certainly an easier option. But as the others have said, holidays on APD or CAPD are much easier than any other kind of dialysis it seems to me - to anywhere in the world in theory. I went to France and Copenhagen, as well as several trips within UK, including a month away one summer - that was a whole palette's worth of fluid waiting for me when I arrived!

malcolm · Post by **malcolm** » Tue May 13, 2008 4:15 pm

I have just joined KPG & read the replies to Coxey abut her mum.
I have just been told that I go in hospital thursday15-05-08 to have my "pipes" fitted on friday I was very apprehensive over it but reading the replies has put my mind more at ease
malcolm

bigbuzzard · Post by **bigbuzzard** » Tue May 13, 2008 5:50 pm

Hi Malcolm

Welcome along. Good luck with it all.
Which hospital do you go to?

Andy

malcolm · Post by **malcolm** » Tue May 13, 2008 8:53 pm

Hi big buzzard
thanks for your good wishes.
I attend the royal london hospital. I have been going there for 2.5 years & managed to stay off dialysis till now. I am 76 years young but obviously too old for transplant so must make the best I can. I feel very sorry for the younger people with this trouble that I see in the clinic

regards
malcolm
[email protected]

tommc · Post by **tommc** » Tue May 13, 2008 9:13 pm

Malcolm,

As far as im aware there is no age limit on transplants. As long as your health is up to the surgery theres no reason you cant have one.

Tom

malcolm · Post by **malcolm** » Tue May 13, 2008 9:21 pm

Hi Tom
I wouldn't want to deprive a younger person the chance of a fuller life
I have had a very good adventure with my life a very good wife for 55 years &still have a lot of fun & enjoying my 6 grandchildren

malcolm