About peritoneal dialysis...

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StephenW
Posts: 10
Joined: Tue Feb 10, 2015 8:40 am

About peritoneal dialysis...

Post by StephenW »

Dear all

I'm new here, having looked around the internet for information and finally found this excellent forum.

I was diagnosed with IgaN a few years ago and have been having regular blood tests and visits to a nephrologist, ever since. However, apart from taking various tablets (eg for blood pressure), life has carried on pretty much as normal and even close friends and relatives probably don't think of me as being "ill".

The nephrologist has always talked about dialysis as something that I would need "in the future" and I have been quite happy not to think too much about the future. But recently, my eGFR has dropped below 20% and I have been told that I will have to make decisions about dialysis in the much more immediate future. My wife and I attended what she described as the "kidney fun day" at the local hospital, in which they gave some very good presentations on all the dialysis (and other) options available. The various forms of peritoneal dialysis were given a prominence and my present inclination is to opt for that.

Reading this site, some people evidently get on very well with CPD but others clearly find it very difficult. I don't think there is really any way of knowing if it will work for me without just making the decision and hoping for the best.

One thing that was rather breezily glossed over in the presentation was the management of all the supplies of boxes that have to be delivered to the home. It would be very helpful to me if someone here could give a bit of insight into their experience of this, please. For instance, just how big is a delivery of supplies? what is the size and shape of the packaging? do they need to bring some kind of wheeled truck into the house, or is it brought in in individual packages? does the stuff need to be stored in the same room where you are going to do the dialysis or can you carry boxes of the stuff around the house as you need them?

These may seem like pretty basic and trivial questions, compared with the lifestyle changes, diet, pain and other features of dialysis that I can look forward to, but, if possible, I don't want my house to become a kind of dialysis unit that my family also lives in, rather than a home in which some dialysis is done. I hope this makes some sense.

Best wishes to all.

Stephen
Grey
Posts: 450
Joined: Wed Mar 30, 2011 12:04 pm
Location: Chester

Re: About peritoneal dialysis...

Post by Grey »

Steve, it depends on your dialysis prescription as to how many boxes of fluid you will have. In my case I used 2 x 5L bags each night. OH I was on APD which means I had a Baxter machine set up to do a number of exchanges during an 8 hour period overnight. I will warn you it all takes some getting used to, in the beginning you may experience drain pains etc but there are ways of lessening those and after a few months you should more or less sleep through much of it. Any way each box had 2 x 5L bags in it and so I would get approx. 28 boxes delivered each time along with other bits and pieces. The Baxter driver must carry all the stuff to the room where you want it to be, in my case the box room upstairs and by en large they were very good. If you have any other questions PM me your phone number and I will happily give you a call and answer any questions you may have. I now have jjust had my transplant and they are going to remove my PD tube in a few days time. Been through the whole cycle so should be able to answer all your questions. Grey
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
DeanH
Posts: 67
Joined: Thu Feb 12, 2015 5:01 pm

Re: About peritoneal dialysis...

Post by DeanH »

Stephen, I was on APD for a year, I had a fresenius machine which I found a million times easier and better than the Baxter one, nice touch screen display and no drain pain at all with it, te delivery drivers were excellent tool all my boxes to the spare room where I kept everything and used the machine next to my bed, I was told at my hosp that there tends to be up to 4 days worth of training on the machine but that depends on how fast you pick it up, i took me a day and I was done, set up on my own at home about a week later with no problems, found the whole process really simply, as long as you remember to keep absolutely clean and sterile and sterilise with the provided wipes all the bags and machine that you use you will be fine, after a week or so it took me about ten mins to set it up and about 5 to dispose of everything the next morning, took 8 hours or so each night and your unit will be on hand for any help you may need over the phone, also fresenius themselves are really good I you get stuck and you wid be given numbers to call at any time night or day.

I was able to go away to Norfolk (I'm in Essex) for a week last summer and fresenius turned up at the time and day I requested in our cottage in Norfolk To delivery the needed fluid boxes andmachine for the week, all I had to take were the peripherals that were needed which worked out to about two medium size boxes, and they coected the machine on the day we left. Many people are also able to have this service done abroad.

All the best for whichever you choose, I went for APD as I work mon to Fri in the city and wanted not to have to do anything in the day, I'm in my early 30's and didn't want to have to bring it all with me, preferred gettin done at night whilst I slept.
Grey
Posts: 450
Joined: Wed Mar 30, 2011 12:04 pm
Location: Chester

Re: About peritoneal dialysis...

Post by Grey »

It's not actually the machine that causes drain pain, it's the way they set it up. After I figured it all out, I never had any at all and slept right through.
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
DeanH
Posts: 67
Joined: Thu Feb 12, 2015 5:01 pm

Re: About peritoneal dialysis...

Post by DeanH »

My old unit told me it tended to happen with Baxter but I suppose many places are different
Grey
Posts: 450
Joined: Wed Mar 30, 2011 12:04 pm
Location: Chester

Re: About peritoneal dialysis...

Post by Grey »

Dean I found that the knowledge of how to set and use the machine was not very good. Coming from a technical background I helped them get it so never had any problems in fact in the last year slept right through all of it except the very last drain which by then I needed to have a pee in any case. Hope your new kidney is behaving itself and likes it's new home !
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
DeanH
Posts: 67
Joined: Thu Feb 12, 2015 5:01 pm

Re: About peritoneal dialysis...

Post by DeanH »

I guess that's the difference between Baxter and fresenius as they couldn't have been better, both in training and support, never felt the machine draining in or out at all right from the start which was excellent, yeah kidney and pancreas doing great cheers, hope you are also.
SKM23435
Posts: 289
Joined: Wed Oct 16, 2013 2:39 pm

Re: About peritoneal dialysis...

Post by SKM23435 »

My experience was very similar to Grey.
I was on APD and it allowed me to get on with my life during the day.
I had all the supplies delivered into my garage (I wanted to keep the house a dialysis free zone apart from some periferal supplies and the machine on a trolly next to my bed.). Either myself or my husband would carry the box containing 10litres of fluid (weighing 10kg) into the house as needed. Like grey I had about 28-30 boxes of fluid delivered each 4 weeks. Your dialysis nurses should be able to show you what the boxes would look like. Others have had sheds provided to store them outside.

As regards training, I had a Baxter machine. I did 3 days training at BREC Baxters training centre at Kew as my local unit was being redecorated. I found them excellent. My PD unit at my local hospital also has an HCA who is very experienced and a mine of information.

Any questions just ask.

Sue
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
StephenW
Posts: 10
Joined: Tue Feb 10, 2015 8:40 am

Re: About peritoneal dialysis...

Post by StephenW »

Many thanks for the replies and all the helpful info.

Grey, yes I'll PM you separately, if that's OK.

Sue, I was interested to hear that the boxes could be stored in a garage, as this would be quite convenient. Is there any problem about the temperature that the stuff is stored at? It must get very cold in an outside garage in the winter.

Thanks again

Steve
DeanH
Posts: 67
Joined: Thu Feb 12, 2015 5:01 pm

Re: About peritoneal dialysis...

Post by DeanH »

Stephen, I don't think there is an issue with this as I know that many hospitals provide funding for a outside shed if you don't have anywhere else to store the boxes, the Royal London do at least.
SKM23435
Posts: 289
Joined: Wed Oct 16, 2013 2:39 pm

Re: About peritoneal dialysis...

Post by SKM23435 »

I guess last winter wasn't that cold. I was told there wasn't a problem with storing outside even when the weather was very cold. The solute in the bags lowers the freezing point and we heat the bags before using them.

Sue
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
MandyA
Posts: 185
Joined: Tue Dec 21, 2010 6:45 pm

Re: About peritoneal dialysis...

Post by MandyA »

Hi Stephen,

I was on Automated Peritoneal Dialysis for just over three years.

I had deliveries from both Baxter and Fresenius during that time.

Deliveries were made monthly, usually of around 500kgs of boxes. One issue the hospital never mentioned was that you have no choice of delivery day, and the delivery window is 8.00am until 6.00pm..... worse than Argos, apparently!

The pallet of supplies arrived on a lorry, and the driver used an electric stair climber to carry everything up to my second floor flat, and stored it wherever I asked him to.

I stored everything in my spare bedroom, which is pretty small.... boxes of dialysis fluid were piled up to the ceiling, but at least they were out of the way. As my spare bedroom was unusable as a bedroom, I got my Council Tax reduced by one band.

I was also able to claim back about £30 per quarter from my renal unit, to pay for electricity to run the dialysis machine.

Regards,
Mandy
SKM23435
Posts: 289
Joined: Wed Oct 16, 2013 2:39 pm

Re: About peritoneal dialysis...

Post by SKM23435 »

Having a delivery to the garage meant I didn't have to be in for the delivery. I just left instructions to "leave in garage". I think I only met the delivery time once in the past year. Even on occasions if I was in the delivery went strait to the garage without me seeing it arrive!
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
StephenW
Posts: 10
Joined: Tue Feb 10, 2015 8:40 am

Re: About peritoneal dialysis...

Post by StephenW »

Many thanks for these additional insights. I'm not sure our stairs would cope with half a ton of boxes being moved up and down them regularly. The garage option definitely sounds the best. I'd better start clearing all the old junk out of the garage!

Cheers

Steve
User avatar
bigbuzzard
Posts: 1481
Joined: Sun Mar 12, 2006 11:21 am
Location: Devon, UK
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Re: About peritoneal dialysis...

Post by bigbuzzard »

I was on APD with Baxter for a couple years – looks like others have answered all your questions, though I haven't read in detail. It's definitely worth getting used to how to reprogramme the machine for different times, etc if you need to juggle your life from time to time (late nights/early mornings).
If you have an upstairs room with enough storage space, then you can let the delivery guy do the heavy lifting (they love it ;-) - though it's also good exercise! I was never a fan of lugging heavy boxes around last thing at night before bed. Baxter was exceptionally helpful for delivering supplies to other places, including abroad, with a few weeks notice. The delivery boxes are useful for all kinds of stuff, if you have room to keep some (moving, posting parcels, creating temp furniture!) — definitely very re-usable if you have space for them.

Storing fluid outside in winter is ok (though check the storage instructions on the boxes if temp gets very low). It's good to store the 'cassettes' (i.e. the multi-tube set) indoors at room temp, however, as when I used those after being stored in a cold place, I got several faults, as the tubes weren't quite flexible enough. That happened in Copenhagen, causing me to run out of the cassettes I'd brought, until we realised the problem. Baxter sent me to a hospital just down the road where a friendly renal nurse just opened the cupboard and dished out a few. Cost: a smile (and I got change :-) !
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