Anyone here been refused PD ??

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Anyone here been refused PD ??

Postby Mike » Tue May 11, 2004 3:01 pm

Hi,

I had an appintment with the dialysis support nurse this morning and she told me that I may be refused PD and have to do HD. the reason given is that they don't think I would cope with it??

I don't know what this is based on but I thought (obviously wrongly) as the patient that unless there are medical reasons for it that is should be my choice.

She is going to speak to them on my behalf to try and convince them but I just wondered if anyone else has experienced this before??

mike
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Postby Hal » Tue May 11, 2004 4:27 pm

Hi Mike,

I've heard of people being refused PD in the UK, yes. On the same grounds as you and on medical reasons as well.

If there are no medical reasons why and you think you can cope with it - do they have any reason to think you couldn't cope or haven't followed treatment in the past ? - then you should fight for it.

It could be down to money but they don't want to tell you this!

Good luck,

Hal
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Refused PD for ??? reason

Postby JMan » Tue May 11, 2004 4:35 pm

I concur with Hal, but just add, Ask for their reasons in writing. That way they cannot change their tune later..
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Postby Mike » Tue May 11, 2004 4:52 pm

Thanks Hal

I did go through a stage when I didn't take things that seriously, It was about 5 years ago but at the time I felt like it was a waste of time as I believed that I would never ever get to this point.

I only found out just over a year ago that my function had dropped to 33% I had thought that it was about 50% so that was a shock. I am at 18% right now so not far off dialysis.

I think it will be ok as the nurse was very supportive of me being given the chance to prove myself.

mike
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refused PD

Postby Sueleic » Tue May 11, 2004 5:15 pm

Hi Mike
My husband was refused PD because he was diabetic well that’s what we were told at the time!
We went to a patient information day with knowing that PD wasn’t an option for him so we didn’t take to much on board about PD, it wasn’t until he was on HD and talking to others we found that some diabetics had been on PD, this wouldn’t have changed anything for my husband as he didn’t think he’d be able to cope on PD but I’ve always felt the choice was taken from him, by a doctors and renal team
There are many people who have been on PD and changed to HD and the other way around for what ever there reasons for doing so
There maybe other factors and I’m sure another site member will be able to share there advice/experiences
I hope you get this sorted out one thing we did learn was to make a fuss it’s your body your illness
Take care
Sue
In the UK
xx
:)
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Postby Mike » Wed May 12, 2004 9:35 am

thanks very much,

i have found it hard enough to cope with the realisation that i've got this for life over the last year or so and I have just in the last couple of months come to terms with it and just try and make the most of the days when I feel ok.

the thought of PD was initially difficult but I could see that I could still lead a fairly normal life with it, HD just feels like it would take my life away as all I would ever be doing is working and dialysing.
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Postby Hal » Wed May 12, 2004 10:06 am

Hi Mike,

Glad you are "coming to terms with it" ... something thats difficult for us all and sometimes impossible.

You go for the PD if thats what you want to do - everyone has their reasons for choosing HD and PD and thats fair enough. Like you I prefered the PD option (although I had to do HD as I actually wasn't clinically suitable for PD at first).

Take care,

Hal
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Postby Rik » Wed May 12, 2004 10:38 am

HD didnt take my life away Mike ... in fact I made HD fit around me ...

like you I didnt accept ESRF too well at first ... then just got on with things ... initially I was scared ... shi ... erm?? ... witless!!!... about machines running my life ... and more to the 'point' ... (so to speak) I am a HUGE needlephobic ... so the thought of HD really wasnt my favorite idea of fun I can assure you!! ...

but ... once I had gotten over the first few times ... (a chair and whip normally kept the staff at a fair distance) and with the knowledge of Emla cream and Lidnocain ... I settled into it just fine ...

I wouldnt do any more than twice a week .. no matter what scary things they told me would happen to me ... I worked full time all the way through me ESRF and dialysis ... I made sure I was put on their dialysing night shift ... and didnt allow it to get too much in my way of getting on with life ... HD isnt so bad Mike ... just dont let it or them rule your life ... although do take in what they are telling you ... then you can judge what is best for you mate

:0)
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Postby Mike » Wed May 12, 2004 10:51 am

Thanks Rik

I know what HD is like as my brother has been on dialysis for 13 years and most of that on HD. I know how incredibly well he copes with it all but my first impression was that it takes up a lot of your time in comparision to PD but i suppose it is actually less time spent on the machine than doing exchanges ?

If it came to it I know I would adjust to the routine and get used to it (wouldn't have much choice there :wink: ) but in every appointment i've had so far HD was never under consideration so it was the shock of hearing thats what they want me to do. I'm fairly confident things will work out for me and i will get to do PD but it's the not knowing what is going to happen that is worrying me at the moment.

I have to admit that I find the idea of transplant much more scary as my only experience is through my brother seeing him go through 2 failed transplants and how that affected him.

thanks very much you cheered me up a little

mike
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Postby Hal » Wed May 12, 2004 5:23 pm

Mike wrote:Thanks Rik

I know what HD is like as my brother has been on dialysis for 13 years and most of that on HD. I know how incredibly well he copes with it all but my first impression was that it takes up a lot of your time in comparision to PD but i suppose it is actually less time spent on the machine than doing exchanges ?



Hi Mike,

With the amount of time doing PD exchanges and having to do it everyday, you may be right about the time aspect. However, there is also the possiblity of doing APD (which is what I and various other board members do) and keep your days free.

Regards,

Hal.
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Postby JMan » Wed May 12, 2004 8:31 pm

Mike if you still have probs getting a legitimate reason,.. consider the NKF's patient advocate..

They are there to make sure that patients DO get the choices and service they need.
See the kidney.org.uk link in my sig.
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Postby Mike » Thu May 13, 2004 8:40 am

For the moment I will wait to see what the outcome is before I take things any further but thank you so much for the information as I felt that there was going to be nothing I could do about it if they dont change their mind.

As far as APD is concerned what I understood was going to happen is I would be on PD initially for a few months before going onto APD

cheers

mike
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Postby Hal » Thu May 13, 2004 10:18 am

Hi Mike,

Thats understandable - my unit put me straight on APD, but a lot see how you do on PD first.

Regards,

Hal
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HD-Choice?

Postby George » Sat May 15, 2004 9:29 am

Hi Mick,
I was advised strongly that PD would not be really suitable for me. But I was given reasons.
1. My disease Henoch Scholines Pupora (HSP)- Causes the body to ulcerate and the chance of peritinitis would be very high

2. My weight, i'm a heavy guy, 124kg. :oops:

I started HD last week (4th May) Although its a bind, at least I have a life and can see my family grow up. Everyone says I look much better for the dialysis. Perhaps I didn't realise how ill I have been, you just seem to adjust as your health deteriates. I am not saying that HD has not had its problems it has, mainly low bp. However adjustments have been made and I can move forward, I hope to return to full time work in the next week or so.
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Home hemo?

Postby nycpetit » Sat May 15, 2004 11:41 am

aren't there also options to eventually move onto home hemo as well? That can certainly make one feel more at home

N
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