Pd is so hard

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Mike
Posts: 1594
Joined: Fri Apr 23, 2004 2:47 pm
Location: Mansfield :o)

Pd is so hard

Post by Mike »

hi everyone,

well I went back to work today after 4 weeks off :( and it has really tired me out.

Althought I feel better than I did a week ago I certainly don't feel any better than I did before I went into hospital. It could be that my ferritin is a little low (184) and I'm still getting over the op and the infection.

I am finding PD really hard work and it is hard to deal with the 'full' feeling, I can't sleep properly as I get pains in my right shoulder when I lie on my right side or back and I can't lie on my front or left side as it hurts my exit site. I'm also getting back aches and really bad acid indigestion since I started PD.

Life is so hard at the moment, I really hope that it will get better in time?

mike :(
Elaine
Posts: 1704
Joined: Sat Apr 24, 2004 11:06 am
Location: south west

Hiya Mike

Post by Elaine »

Awww sorry 2 hear u havin a tough time :(

Difficuilt one, to be honest I dont think we too where fully informed of all pos n cons of p/d at the start and the decision was already 'as good as made' for us by Nurses & Drs :shock:

Every11 is soo different and ther are people who do well on p/d and it suits them. On other hand after my daughter changed onto haemo shes doin soo much betetr (touch wood) but supoose until u try u don't really know.
The drawbaks haemo we have to travel 1 hr each way 3 x weekly, however shes feelin betetr on haemo than she did on p/d.

It does take quite a bit o getin use to specially that full feeling etc etc.

Maybe worth having good discussion with Drs & Nurses about how u feel etc to see how they can help or juggle dualysis etc to improve quality life for you????

Take care u know lotta people out here been in similar circumstances so good to talk./ discuss with. Especially in CHAT where u can talk online to people in similar circumstances etc.

bye for now good luck Elaine ;)
Mike
Posts: 1594
Joined: Fri Apr 23, 2004 2:47 pm
Location: Mansfield :o)

Post by Mike »

Hi Elaine,

Thank you so much :D

I was told that things will get worse before they start to get better a few months ago but I didn't expect to take such a big step backwards :shock: I wonder whether when they say it will get better whether it really will or whether they just mean I will get used to it and accept it ?

I've only been doing PD for 2 weeks so I am still getting used to it and getting used to my trousers no longer fitting me which was a bit of a problem this morning :wink:

I'm due to see my consultant next week so I'll speak to her about this all then but it's a bit difficult as she didn't want me to do PD in the first place.

I'm in dorchester hospital on wednesday for an iron IV which may help and I am going into the bournemouth unit tuesday for blood tests so I can speak to my PD nurse about this then as well and see what she says.

can't wait until I can go home in 30 minutes .

mike
Rik
Posts: 1774
Joined: Wed Apr 21, 2004 10:29 am
Location: West London - UK

Post by Rik »

really sorry to hear that your going through a hard time right now Mike ...
its never easy adjusting to any kind of dialysis ... but in the end we all do ... hope it doesnt take too long for you to settle into it mate ... take work as easy as you can and dont expect to be SuperMan straight away!!!!!

all the best
Judith
Posts: 4
Joined: Wed Apr 28, 2004 9:51 am
Location: UK

Post by Judith »

Sorry to hear you're having a hard time. When I first started PD they gave me a video to watch in which this bloke was playing badminton - yeah right, I thought as I waddled off down the corridor afterwards. But it didn't take long (a few weeks) before I got used to the extra fluid and even forgot that it was there. I also started to feel tons better than I had been and after a few months I was able to start going to the gym (which I couldn't have managed before) .

In the end, pd didn't work out for me and I am now doing haemo, which is suiting me a lot better, although I was actually dreading it. From my experience I would say: take it slowly, be kind to yourself and if, in the end, PD doesn't seem to be suiting you, don't be afraid to try something else, and certainly don't feel as if you've failed - you really don't know how it will work out for you until you try.

Best wishes and good luck,
Judith
Judith
Mike
Posts: 1594
Joined: Fri Apr 23, 2004 2:47 pm
Location: Mansfield :o)

Post by Mike »

I was feeling particularly down yesterday :( but I feel a bit better today although I did feel really crappy first thing. I've been to the unit today and my blood pressure was the highest it has ever been :shock: so that can't be helping me feel any better.

I feel that things will settle down and I will get used to it or at least I hope I do. This time last week I was in a lot of pain so compared to then I am so much better :) but still a way to go and the antibiotics aren't doing much to make me feel better either.

anyway thanks very much

mike
Hal
Posts: 617
Joined: Wed Apr 21, 2004 9:56 am
Location: Liverpool, UK

Post by Hal »

Hi Mike,

I had plenty of trouble settling down with PD at first. Similar symptoms to you - shoulder pain, digestion, etc.

After a couple of months it settled down. Its very rare that I feel the fluid inside me now and I get out and about with plenty of exercise.

Don't be afraid to mention things to your consultant - its normal things need some tweaking. Also if your BP is really high make sure they give you something decent to control it.

Good luck,

Hal
Mike
Posts: 1594
Joined: Fri Apr 23, 2004 2:47 pm
Location: Mansfield :o)

Post by Mike »

My blood pressure has been really well under control for the last 12 months or so but I have just started epo so I was told that could push it up plus I'm still getting various pains form my back / sotmach / shoudler so that can have an effect on it too? I took my bp again when I got home and it was slightly lower but still high, it was slghtly higher than what I consider a normal reading for me last week as well (around 120/80) . They were fairly concerned but I am due back tomorrow for an iron iv so they said to see how it is then.

As far as the heartburn is concerned I suffer from Hiatus Hernia so I have been told that the extra pressure on the stomach from the solution can make this worse. I am taking 30mg lansoprazole and 150 mg renitidine daily and still getting problems.
Michele in TN
Posts: 53
Joined: Sun Sep 12, 2004 8:21 am
Location: Nashville, TN, USA

Post by Michele in TN »

Hi Mike. I had a very rough few months when I began PD. And sporatically throughout my treatment. But I will assure you that it does get better. I know it was atleast four months before I slept through the night and boy when I did I had to wake my husband up at 5 am to let him know about it. I am pretty small framed and I found it really hard to breath with a full dwell in. So I slept propped up in the bed, that made a world of difference and I know that with the hiatal hernia that should help you as well. I also never went off of the tidal type cycle because of pain with a complete drain.
Once my iron levels were brought back to normal (after 5 rounds of iv) I had more energy than I had seen in years.
Now I'm in my third month post transplant and still trying to adjust to it but having seen pd get better I'm very optimistic this will, too.
Take Care.
Michele, 30
Mom to Emily, 11
Wife to Chris
Transplanted 07/29/04
Creatinine 0.9 2/07
stopping prednisone due to severe renal osteodystrophy 11/06
wing
Posts: 345
Joined: Tue Aug 03, 2004 10:56 am

Post by wing »

Hi Mike.
So sorry that you're having a hard time of it with your dialysis.
I settled into it fairly quickly but then my very kind G.P. gave me a sick note for ages and ages so that I didn't have to go back to work until I was feeling well and truly up to it.
My employers also have been more than understanding, and allowed me to return to work on a "phased" basis where, I did just a couple of hours the first day then a few more the next day and gradually, over the course of a couple of weeks, built it up to my previous working pattern. I appreciate that this would not be something offered to everyone but if you can get your employer on side it doesn't half help to make life easier. Having said that, I'm very rarely off sick from work therefore they knew I wasn't swinging the lead!!
I think that you have enough to get used to at this stage of dialysis, not to mention the trips to hospital etc for tests, so if work can be a bit kind to you at this stage it will pay dividends later as you will start to feel better once everything settles down and you get into a routine.
As others have said, we don't all take to the same treatment in the same way. I'm struggling a bit with A.P.D. at the minute as it disturbs my sleep at night - every night! Tell your Docs/Nurse about your symptoms so that they can help you with these. Don't let your perceptions about what your Consultant may think put you off - and don't put up with anything due to pride!!
Best wishes.
Mike
Posts: 1594
Joined: Fri Apr 23, 2004 2:47 pm
Location: Mansfield :o)

Post by Mike »

Hi,

Thanks for all your kind support.

I am feeling a bit better about it now and the symptoms seem to be fading (slowly). My work has been fantastic about everything and I have done only 2 1/2 days this week so that helped.

I did my first exchange at work yesterday and it seemed to be all ok apart from i connected up and then realised I had left the clamps on my desk (doh!) and today when I opened the minicap packet it flew across the room so I had to get someone to bring me another one :roll: My main worry at work is the risk of infection as I have to wash my hands in another room from where I do the exchange! I wash my hands then use a clean paper towel to open the doors etc so I don't touch any surfaces. I think this should be ok, maybe I worry a little too much?

I was at the hospital 3 times this week so I had a good moan about stuff to them and they were very supportive. Although I feel happier about it now, I don't feel any better than before I went into hospital but better than a couple of weeks ago so things are improving. I really need to do something about the heartburn as it is making my life a misery so that is the first thing I will bring up at my appointment next week!! I was told years ago that I should lie on my left side but as my catheter is there it is uncomfortable and obviously doesn't help when I am not lying down.

I know for sure that I don't want to do HD so I really don't have any choice but to do PD. I do have reservations about APD as I am worried that I wouldn't be able to sleep properly but it's going to be a good 6 months before I would be able to do that anyway so I'll deal with that as and when it happens.

The only other thing is to wait now for the call.....

thanks

Mike :D
JMan
Posts: 3471
Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Post by JMan »

Mike.. at very least get some handrub or antibacterial wipes to use 'IN SITU' while you are doing your exchange.
A friend of mine uses alchohol gel, and there are several propriatary products on the market. You MAY even be able to get some handrub from the hospital.

Good luck with the PD, the APD when you get to it. AND the waiting:D
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
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Bruce
Posts: 65
Joined: Thu Jul 29, 2004 1:21 am
Location: Long Island, New York

PD is hard

Post by Bruce »

Mike:

Baxter sends me a hand sanitizer called DECON-HAND which I keep next to the chair where I do my exchanges. It is alcohol based and needs no water or dying. I use it if I touch something after washing my hands and also after my exchange, before opening the mini-cap and disconnecting. It comes in a plastic bottle with a pump. This might solve one of your problems.

Good luck. --Bruce
wing
Posts: 345
Joined: Tue Aug 03, 2004 10:56 am

Post by wing »

My renal unit arrange supplies of Hydrex hand rub, an alcohol based hand rub, which comes from Baxters with my monthly supplies. As others have said the use of this type of hand rub reduces infection risk if you have touched something and re-washing your hands is not an option at that point.
They also supply me with Alco-wipes which are alcohol impregnated little towels - useful for wiping down surfaces etc where carrying a bottle of washing up liquid would not be practical.
See if you can get any of these from your unit - point out that you are striving desperately to avoid infection.
amanda in CA
Posts: 1806
Joined: Fri Apr 23, 2004 5:14 pm
Location: Georgia, USA

PD

Post by amanda in CA »

I would strongly agree with others about getting a hand sanitiser for using when doing an exchange. When I used to do CAPD, if I was in a situation where I really couldn't wash my hands or think that by the time I got back they would be more contaminated than if I hadn't washed them (doing in an exchange at a motorway service station comes to mind, a place where I hate to touch the doorhandles in the loos at the best of times) I would use the hand sanitiser instead but do a double rub of it just to make sure. Amanda
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