more questions about PD and HD

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more questions about PD and HD

Postby newbie123456 » Sun Aug 21, 2016 9:03 am

Hi

My husband is in denial about needing dialysis, but while he works it all out I'm doing loads of research.
I've read a few studies that compare HD with PD and they seem to say that PD is marginally better at removing toxins and can protect RRF better. Also patients that were on PD are less likely to reject a transplanted kidney. Does anyone out there agree or disagree with this? Based on what your consultants have told you?
Also, is it possible to mix and match manual exchanges with APD? For example:
6pm: manual exchange
10pm: manual exchange
2am: APD for 6 hours
He can't do it at work as there are no clean areas and he doesn't sleep a full night. Tends to fall asleep when he gets home from work til 10pm then watches telly til 2-3am and comes to bed then.
Thanks
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Re: more questions about PD and HD

Postby rheaybou » Sun Aug 21, 2016 1:17 pm

Regarding transplant, if the NHS are publishing data on transplant success/reduced risk of rejection then it has some backing.

Personally I was against HD due to fistula and needles, so went for PD and did APD overnight, but a word of warning in PD.....until you have the operation to fit the catheter and start dialysis you can't be certain it is the best method for you. I felt so much better and was in better condition for my living donor transplant thanks to HD. One thing PD gives is greater flexibility and freedom to move exchange times around.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
Alports.
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Re: more questions about PD and HD

Postby wagolynn » Sun Aug 21, 2016 2:10 pm

Hi newbie123456,

Most studies I have seen, show a slight advantage in survival for the first 1.5 to 2 yrs to PD.
However, I think this accounted for by considering HD, via a neckline is the usual method used for emergency cases and patients with other severe conditions, in these cases the death rate early on will be high.
Undoubtedly, I would say for someone working, PD/APD offer a more flexible way.
Not all patients can use PD because of lack of available volume or damage to the peritoneum do to injuries or previous operations.
And, as rheaybou says, some patients just cannot get on with PD/APD.


Most HD centres start at around 7am and also run a twilight shift used by patients who work.
Physiologically, HD in a centre has the advantage that the patient see's others on HD, making them feel less isolated, and less hard done to by life.

As I understand it, there are too many variables to realistically compare transplant survivals, PD versus HD.
The aim is to have the patient in good health ready to receive a transplant.

Best wishes to you both.
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Re: more questions about PD and HD

Postby newbie123456 » Sun Aug 21, 2016 7:06 pm

Thanks very much for your replies.
I realise that the choice of dialysis may be made for us but I'd still like to find out as much information as possible to be prepared. It's how I cope with things. My husband is the complete opposite, head in the sand! I know he would hate in centre dialysis because he would have to talk to other people with his condition. He's going to want to hide it and not talk about it to anyone, as if it's not happening. It's therefore up to me to tell him what to do and when.
Can anyone tell me if you can mix and match manual exchanges and APD therefore doing shorter APD cycles?

Thanks very much
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Re: more questions about PD and HD

Postby rheaybou » Mon Aug 22, 2016 6:02 am

Mix and match PD:

I started straight on the machine without learning manual exchanges which is the reverse of what normally happens. The prescription is given and the machine setup to run for that one 10hr cycle only. But your equipment delivery will also include a range of manual bags and also fluid that acts as a day fill.

I can't see why it wouldn't be possible to switch the APD programme to 2-3 cycles and then to do 2-3 manual exchanges(numbers are just a guess)

If you have a spare room or garage prepare to hand it over to PD supplies, the amount of stuff you need each day is crazy, also the number of bags of rubbish you need to dispose of
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
Alports.
rheaybou
 
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Re: more questions about PD and HD

Postby Soobee » Mon Aug 22, 2016 8:53 am

Hi,

Re mixing CAPD and APD, from reading your post the main reason he doesn't want to connect to the machine is that he wants to watch TV downstairs for a few hours then go upstairs to sleep at 2am meaning that he won't get the full 8 hours on the machine (is that right?)

Obviously I don't know about your house, bedrooms and sleeping arrangements but would a TV in the bedroom (and possibly some headphones - maybe wireless ones) help. Then he could connect to the machine earlier, watch TV and go to sleep when suits him.

I often connect to the machine at 9pm ready to watch something on tv (sitting up in bed, the V-shaped pillow has become my friend!) and then switch off and go to sleep when I have finished watching tv, some nights I can't sleep very well so sit up watching tv until the early hours, other night I listen to an audiobook until 3 in the morning. It depends on restless legs etc.

Being connected to the machine just means that you are tied (quite literally!) to one room (you can get extension kits to make the connection tube longer (to reach an en suite etc) but you can do what you like, sit in a chair, lie/sit in bed, read, watch tv, sleep etc

It does change things being on PD but you do adapt, we never had a tv in the bedroom before but it has made it easier in some ways as I will plug in watch a programme knowing that if I fall asleep I don't have to worry about connecting when I am sleepy or making up the hours the next morning because I connected late.

My programme on the machine takes 8 hours so on work days I have a final time to be connected (10pm) so that I can be up and off in plenty of time the next day, if for some reason I miss this I can always skip a dwell on the machine to save 50 minutes (I don't do this often but have not had any ill effect when I do).

Hope I haven't rambled for too long! :)
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Re: more questions about PD and HD

Postby JMan » Thu Aug 25, 2016 9:11 pm

http://www.davita.com/treatmentevaluator/ lists the differences between types of dialysis.. It SHOULD be suited to his lifestyle, but if he's refusing to admit he needs it, there are likely to be problems in the future, as he will to some degree have to self manage.

Denial is a fickle beast, but if he knows more he might be able to take control.
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Re: more questions about PD and HD

Postby newbie123456 » Sat Aug 27, 2016 6:09 pm

Thanks for your replies.
I had a chat with my husband yesterday and was able to answer all his questions.
He's starting to get there.
He's really struggling with extreme tiredness, really swollen legs and feeling very cold. He's on frusemide which isn't working at all and his consultant isn't due to see him for another 2 weeks. Is there anything we can do before then?

Thanks
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Re: more questions about PD and HD

Postby wagolynn » Sun Aug 28, 2016 2:29 pm

newbie123456 wrote:Thanks very much for your replies.
I realise that the choice of dialysis may be made for us but I'd still like to find out as much information as possible to be prepared. It's how I cope with things. My husband is the complete opposite, head in the sand! I know he would hate in centre dialysis because he would have to talk to other people with his condition. He's going to want to hide it and not talk about it to anyone, as if it's not happening. It's therefore up to me to tell him what to do and when.
Can anyone tell me if you can mix and match manual exchanges and APD therefore doing shorter APD cycles?

Thanks very much

I found, at a dialysis centre, the other patients will leave a patient alone if their body language suggests they are in the, 'hide in a corner phase', simply because most of the males have been there and done that.

'Hide in a corner', is a 'normal' male reaction, I am not saying it is the best reaction, just normal for most males.

I notice female patients are keen to talk about the problems with other females, from day one.

Good sources of information about the condition are this website, http://www.kidneypatientguide.org.uk/contents.php

This one tends be a bit technical but accurate. http://www.edren.org/ look for their Handbook on the site.

You will find loads of other sites but as usual with the internet, you must check the source of any information, there are an awful lot of cranks out there.

The more he understands his condition the more he can make choices, and ask intelligent, and answerable questions.

Re Water pills - they take about three days to settle down, and like most things in medicine it is a process of trial and error to find the right amount, and it is possible they may never work for him.

Say after a week, if the water in his legs is bad, he could try ringing the consultants secretary and asking for the message ("legs still swollen, can I take more pills"), to be passed on, he should get a call back, (I do) with new instructions if appropriate.
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Re: more questions about PD and HD

Postby newbie123456 » Sun Aug 28, 2016 5:59 pm

Thank you so much wagolynn.

Those websites are great and I didn't know that we could call his consultants secretary, that's brilliant!!!

You are so right about him wanting to hide in the corner..that is soooo him!!
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