A Couple of Questions

[Poppylicious]

Last week myself and Blokey saw the lovely PD nurse at the hospital where Blokey receives his treatment.  He's *almost* made the decision to opt for APD (I think that's right - all these acronyms get muddled in my head).  We believe it will give us more freedom, and it means he won't have to have a fistula fitted (he currently receives dialysis through a line in his chest); he's absolutely adamant that the fistula isn't happening!  He's spoken to someone at dialysis about their experiences and now just needs to thrash out a couple of things in his head ...

Firstly, does he have to stay hooked to the machine ALL night?  He's a bit of a Night Owl; he rarely spends a full eight hours in bed and would find it quite difficult to be in bed if he's restless or not sleepy.  If he does have to stay hooked up, can he move around from the bedroom to the room next door?  Is that a silly question?  Apologies if it is! 

Secondly, he asked the lovely PD nurse if he could drive after having the catheter inserted in his stomach.  She said that she didn't think he'd be able to drive for about two weeks.  Is this true?  He doesn't want to take too long off work (he works full time and must be able to drive to work because it isn't on a bus route and I don't drive) because of all the time off work this has already caused him.  Plus, he wants to be able to drive himself to dialysis and not have to rely on hospital transport (and we live nearly thirty miles from the hospital where he receives his dialysis).  Do you think he would be able to drive quicker than her suggested two weeks?

Thanks for any answers you can give us. They're probably redundant in the sense that they won't change his decision (if he doesn't want a fistula he hasn't got a choice!) but they are things that he's constantly got on his mind and to hear how other people cope will help him lots.  I still can't entice him onto this site, but we do talk about the things I read here, and he does ask me to ask questions so that we can get straight answers from people who are already living with/through it. 

Oh, and I had a little question too ... Does your electricity bill shoot up horrendously with home dialysis?! 

x

[KICKSTART]

Right APD is commonly known as the overnight machine (it is still a form of PD) when you do APD you spend an average of 8/9 hours per night on the machine, every night. He wouldnt be able to move around the bedroom as such and couldnt go into another room , he will be able to stand up by the side of the bed , but not walk around. i suggest watching tv or getting a good book ! 2 weeks sounds reasonable not to be able to drive , as he will still have stitches in his stomach , so im thinking shes saying 2 weeks because the stitches come out after 2 weeks. Im a bit confused about you asking about driving to dialysis ? If he does APD (which is PD) he will do it at home . If he does Hemo (which involves the fistula being made he will do it at the hospital)

[paul.karen]

Poppylicious,

My experience is that i could drive the next day, actually could have driven home from the hospital but had Karen driving me.  I had my operation on a Thursday and was back to work on the following Monday.   I had no stitches they glued me shut. The pain lasted about a good week but was very barable with just extra strength Tylenol.  But i did have a few painkillers the doctor gave me after the operation.

As for movement around the room.  The machine i use Baxter has about a 9 foot leash (hose).  So i can move around my room that far.  But also with Baxter you can get 12 foot extensions the machine i use says you can hook two extensions up to the machine for a total of about 33 feet.  I have only ever hooked up one extension.  I go to bed about 8PM and get up around 5:30AM for work.  It kinda is a pain but you get use to it.  Also the food and liquid restrictions arnt as bad as on hemo from what i understand.

I would see what kind of machine you would be using and look into extensions.
Good luck.

[looneytunes]

Hi Poppylicious... My spouse hooks up to a Baxter cycler every night for 9 to 10 hours total.  The length of time depends on the amount of dialysis needed for adequate clearances.  The Baxter cycler can be used with 2 extensions which allow my hubby to move around a good part of the house.  The machine can be moved around also if you have a cart with wheels that will hold it and the drain bag (like one with a lower shelf) because in the event of power failure (like unplugging it... ) it kicks over to battery backup and he could move it to another room on battery power and plug it right back in without a skipped beat!   

He was able to drive 3 days after the catheter surgery (though the doc recommened 10 days) and had sutures. 

The best part of PD is the freedom from driving to a clinic 3 days a week!  The next best part is the dietary restrictions are much less! 

Best of luck to you both!

[ardyce]

Poppylicious,

I am on PD (APD) and if your husband will be using the Baxter cycler yes, he will be thethered to the machine for approximately nine to ten hours.  But if he needed to unhook for an hour or two he can by using a "Flex Cap" to cap off the cassettes tap and a "Mini Cap" to close off his catheter.  You will learn all these terms once you start the PD process.  Just like Paul/Karen said he can hookup a 12 foot extension or two and move all over the house to his hearts content.

As for driving after the placement of the catheter in the stomach I drove the day of the operation. I had no pain just a little stiff.  But than some men's threshold is different than a woman's.

I am sure your husband would do just fine.  He has gotten through hemo treatments so PD is a piece of cake after hemo!

I have seen no change in my electric bill in the two years I have been on PD.

If you have other questions just ask!

Ardyce

[KICKSTART]

Everyone must be different then and it must be different in different countries ! I had no extension lines to 'walk around the house' and my recover from the cath took a couple of weeks , the explanation i was given was , the fitter you are , the worse it is for you ! I am FEMALE ..lol but was also very fit  (good stomach muscles!) from plenty of riding horses every day . I was told , little old ladies are up and around the next day , but fit people take ages .

[Poppylicious]

Thanks for all your replies so far ... it's good to know that we should find out about extension leads!  He'll also be happy about the driving aspect (although I realise everybody is different, it will at least give him hope that he could mend a lot quicker than they say!)

Im a bit confused about you asking about driving to dialysis ? If he does APD (which is PD) he will do it at home . If he does Hemo (which involves the fistula being made he will do it at the hospital)

Blokey is already on dialysis 3x weekly in the hospital.  It's my understanding that even once the tube is inserted they wait a few weeks to make sure it's ok and that he knows how to self-dialysise at home, and only then will they let him actually do it; he'll still need his dialysis at the hospital in the meantime!

the fitter you are , the worse it is for you!

Phew!  He's not very fit at all ... maybe there is hope for him. 

x

[Hanify]

I only couldn't drive on the day I got my PD catheter because it involved an anaesthetic.  Next day or so I would have been fine. 

Quite often I hook up to my machine for the initial drain/fill, then unhook and go and watch TV or whatever with Paul.  I also read when I go to bed, but have always done that so no change there. 
Do you have a TV in the bedroom?  I don't, but I would if I felt the need to watch TV late.  The extension cords sound great.  I don't know if they're available here.

I love PD.  I would be a PD pr person given half the chance.

[Jie]

I guess others have answered the questions.

The cat. surgery takes about two weeks to heal before doing dialysis. If absolutely needed, the dialysis can start second day after surgery with a small amount of solution. For driving, it is the second day after the surgery. I drove to work the second day after my surgery.

There are 22 feet long tubing from Baxter (make sure your clinic allows you to have 22 feet tubing; some clinics get shorter ones). Another 12 feet extension line can be used if needed. So, the maximum possibler length is 34 feet. If you need longer than 34 feet, two options are available:  (1) disconnecting with a cap, or (2) using a cart to move the machine and solution.

[Restorer]

Here are my experiences for you to take with you:

I connect to my cycler (Fresenius Liberty) at around 11:30pm, and I'm awake until 2am most nights sitting at my computer. I have no trouble getting up to walk around my room. The fluid is a little more noticeable when I'm sitting up rather than lying down, but it's not a problem. I have a 20-foot patient lead on my machine, so I can make it out my door and to the bathroom.

I was able to drive and be relatively active a couple days after having the catheter inserted. I had it done on a Friday, and had class that Monday. I returned to the clinic a week after having the catheter inserted to have the stitches removed.

The first time they put the catheter in, we took our time getting me going with flushing the catheter, trying small exchanges, etc. It turned out that my catheter was entangled, so I could fill (slowly) but not drain at all. They decided to replace the catheter, and a week later I started with small fills (500 ml) and very slow fill/drain rates (all manually). It was somewhat painful for a couple weeks.

[sico]

You can use an opticap to disconnect during the dwell part of the cycle. My dwells are 1hour 45minutes.
I did not drive for a while, was even painful to be a passenger in a car for me. All the abdominal surgeries I had were comparable to having a hernia.
Maybe it's the roads here in Melbourne and those damn tram lines. Had mum driving me around.

[ardyce]

Poppylicious,

If your husband ends up with doing PD and has the Baxter cycler you might need parts number for the extension lines, they are:

This one hooks to the Cassette tap and patient
12 foot Patient Extension Line with EASY-LOCK Connector______5C4480C ______30 for $225.68

This one is the drain line to the bathroom
Sterile Drain Extension Line 12 foot _______5C4464P ________30 for $156.47

[billybags]

My husband has been scheduled to have his tube replaced in two weeks time, he can not wait. He has been on emergency hemo for about 9 weeks, he doesn't like the sitting about and doing 3 times a week.
You have not mentioned about the room you will need for the boxes of fluid and the ticky tacky you get with the cycler, have you plenty of room? Also no one has mentioned the noise the machine makes, trust me it does. You will take a while  to get use to it , but you will. Pd and APD are a lot gentler on your system than hemo. Your husband will be absolutely fine.

[Poppylicious]

You have not mentioned about the room you will need for the boxes of fluid and the ticky tacky you get with the cycler, have you plenty of room?

We have a cupboard under the stairs!  Otherwise, no.  But the PD nurse said we could have deliveries either fortnightly or monthly depending on storage space, and she also mentioned that they might be able to provide some sort of shed for the garden if need be.  This will be a good chance to have a major clear out and get rid of piles of junk that hasn't been touched since we moved here four and a half years ago!

Also no one has mentioned the noise the machine makes, trust me it does. You will take a while  to get use to it , but you will.

I wear ear-plugs in bed and Blokey can sleep through absolutely anything ... hopefully the noise won't be a big issue  . 

Thanks for all your help everybody.  It is much appreciated to hear about your experiences.

x

[KICKSTART]

Go for fortnightly supplies then as you will find amonth takes up nearly half a room ! I found the noise of the machine never bothered me , in fact i slept better than i had done in ages !

[Restorer]

As far as supplies, a month's worth is about four stacks almost as wide as my shoulders, and stacked up to my chin for the dialysate, and then four wide boxes for the cassettes, and some various smaller amounts of space for caps etc. I also use a manual each day, so that's one more stack up to my chin.

I keep it all in the garage.

[TheHelpfulTroll]

Hi
I found it took a week for me to feel comfortable driving after having the catheter fitted.
You CAN move around using an extension line (google "Baxter 12 Foot Patient Extension Line" to see).
The hardest problem I had was turning on my side when I was full of fluid...I found it almost impossible to do & ended up sleeping on my back.
I wouldn't recommend disconnecting from the machine to walk around since you run the risk of infection...I think the less connecting/disconnecting you do is best as theres a real risk of infection.

[Jie]

As far as supplies, a month's worth is about four stacks almost as wide as my shoulders, and stacked up to my chin for the dialysate, and then four wide boxes for the cassettes, and some various smaller amounts of space for caps etc. I also use a manual each day, so that's one more stack up to my chin.

I keep it all in the garage.

One box of cassettes contains 30, lasting for 30 days. Why did you need 4 boxes for 120 days of supplies?

[Restorer]

Jie, Fresenius Liberty cycler cassettes, extended patient line and drain line, part no. 050-87216. Ten to a box. One per night, so three boxes for 30 days, plus an extra box to be safe.