Peritonal dialysis

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knittygritty
Posts: 27
Joined: Fri Nov 29, 2013 9:20 am

Peritonal dialysis

Post by knittygritty »

Hello everyone,

Quick background : 26 yo, living in France. Discovered stage 4 illness Oct 2013. Put on transplant list Jan 2014. PD inserted May 2014.

So after 7 months of being diagnosed with medulla cystic kidney disease, I had to admit defeat and begin my PD journey. I had the catheter inserted 2nd May and begun DPCA on 2nd June. I'm not sure what DPCA is called in English but it's where you do PD by gravity with 2 bags on a drip stand. Anyway on Monday I finally received my PD machine and I've done 2 night sessions on it. I'm doing it 5 days/7, 8hr sessions and I've got 2 cycles on it (I have a tendancy to absorb liquid due to dehydration so my cycles are long) I'm finding it OK but I'm having problems with the final drainage; it's quite painful and I end up doing a devriation to skip the step. All I would like to ask does the pain go away eventually the more you get used to it? Does your sleep patterns get better? I feel like I'm light sleeping all the time when I'm on the machine and wake up for work pretty grumpy.

Are there any tips/advice anyone has for PD?

Thanks in advance!!

Colette
Diagnosed with medulla cystic kidney disease - Sept 2013
APD operation - May 2014
Sitting patiently on the transplant list
lizbee
Posts: 246
Joined: Thu May 02, 2013 11:02 am
Location: Glasgow
Contact:

Re: Peritonal dialysis

Post by lizbee »

Can.t answer your questions but I just wanted to say well done you for coping so well and what a shock that must have been, look what you have achieved in a few short months I take my hat off to you.......stay positive and as healthy as you can

Liz
I am 61 years old


diagnosed 17 years ago with Membratts disease

Now receiving dialysis

I am Scottish and live in Glasgow.
Grey
Posts: 450
Joined: Wed Mar 30, 2011 12:04 pm
Location: Chester

Re: Peritonal dialysis

Post by Grey »

You will find after a few weeks or perhaps months that drain pain goes. I think the bits inside harden up or somehow get used to the whole procedure and it more or less stops hurting altogether. Good luck and stick at it. Constipation is the worst enemy, even if you think you are ok you may actually be too stiff in the bowl so always keep a very free and easy movement every day.
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
knittygritty
Posts: 27
Joined: Fri Nov 29, 2013 9:20 am

Re: Peritonal dialysis

Post by knittygritty »

Thanks Lizbee and Grey. It was a bit of a shock a first, it took me a while to adjust to the idea, but I'm looking at it as just another challenge :) Especially since I've done the hard part now (PD) there's not much to worry about. I was really scared about the idea of dialysis before I got it and now I'm wondering why I made such a fuss about it.

I had my monthly blood test yesterday and I spoke to the nurses. I'm going to finish this week on APD and we'll speak about it again on Monday. If I'm having to skip steps every night then I may have to move back to CAPD for a while longer. Medical teams here look at the pain as a sign of not being ready for the machine.

I will speak to the nephrologist next week about constipation. I don't think I have any, I mean I generally go once a day, much more regularly than I did before dialysis!!! But I'll check out if i should be taking the laxatives they gave me everyday or not (i was to take them just after the operation as I had a LOT of pain then but then my body sorted itself out so I stopped).

Sorry for the too much info part. I'm glad that it should get better eventually. That's really good to know.
Diagnosed with medulla cystic kidney disease - Sept 2013
APD operation - May 2014
Sitting patiently on the transplant list
chrisb
Posts: 275
Joined: Thu Jul 19, 2012 4:57 pm
Location: gloucestershire

Re: Peritonal dialysis

Post by chrisb »

bowel blockage due to constipation can creep up on you. I was not taking the laxative business seriously because I had never had a problem prior to having the PD tube fitted and I was going once a day. That is until I ended up with a stay in hospital to clear out the blockage because I had terrible stomach pains and was vomiting up everything I eat. after that I took it very seriously and made sure I had at least 1 dose of laxative a day and two bowel movements a day. if I was not doing this I upped the dosage to twice a day for a day or two. dismiss the importance of it at your peril :roll:
knittygritty
Posts: 27
Joined: Fri Nov 29, 2013 9:20 am

Re: Peritonal dialysis

Post by knittygritty »

I'm not dismissing the importance of it Chrisb, I'm just saying I would like the opinion of my nephrologue when I see him during my monthly consultation. During the last 7 months, the one thing I've learned is that kidney disease affects everyone differently. Me especially seeing as I don't have the restrictions most other people have in their treatment (I can have as much salt and potassium as I want, as much fluids as I want etc) so I would like to check. You see, before kidney disease was diagnosed, normal for me was having a bowel movement maybe once or twice a week!!! So going once a day might be enough for me :)
Diagnosed with medulla cystic kidney disease - Sept 2013
APD operation - May 2014
Sitting patiently on the transplant list
balib310582
Posts: 9
Joined: Tue Mar 12, 2013 3:42 pm

Re: Peritonal dialysis

Post by balib310582 »

I used to do the overnight machine and then moved onto 4 x daily instead as I found a few problems with the machine. However, I did find the last drain could be painful, my nurse suggested elevating my legs and that seemed to work - you might want to give it a try! Good luck!

alison
33 years old
diagnosed with Alports syndrome
started PD dialysis March 2011
joined transplant waiting list March 2011
transplant received 5 Nov 2014
From Aberdeenshire, Scotland, UK :)
MandyA
Posts: 185
Joined: Tue Dec 21, 2010 6:45 pm

Re: Peritonal dialysis

Post by MandyA »

I had drain pain during the initial and final drains for two and a half years. My APD machine was programmed to do tidal exchanges the rest of the time.

Finally solved this recently by switching from a Baxter to a Fresenius machine.

Mandy
Dotty
Posts: 160
Joined: Tue Mar 25, 2014 7:16 pm

Re: Peritonal dialysis

Post by Dotty »

I am having problems with CAPD at the moment.
I was supposed to be going back on to the machine on Monday but draining is really painfully at the moment so it has been postponed. A couple of times I've had to stop and wait a while before continuing.
I am also really bloated and can barely move, (think 7 months pregnant) I am hardly draining the amount I put in let alone pulling any extra off and my weight and blood pressure is slowly creeping up.

As is typical, I tried calling my nurse today but no answer so will have to wait until Monday.

Fingers crossed this improves over the weekend.

Dotty, who is wearing copious amounts of bright red lippy!
47 years old.
IGA Nephropathy diagnosed May 2013 with eGFR of 22%
PD dialysis started May 2014
3rd PD catheter fitted and failed July 2014
Hemodialysis started July 2014

Red Lippy and PMA (Positive Mental Attitude) gets me through each day!
Grey
Posts: 450
Joined: Wed Mar 30, 2011 12:04 pm
Location: Chester

Re: Peritonal dialysis

Post by Grey »

Dear, just how loose is your bowel. Especially in the early stages of PD it must be VERY loose. Your tummy MUST work every day possible even more, it will not hurt if in fact it is almost runny. I went through this and it really helps. Even if you think it is OK take opening meds. I take Sena extra strength twice a day, I take one or 2 or even 3 sachets of Laxido when necessary, and then the sweet stuff to soften it all. I cannot stress just how important the bowel movement is especially in the early stages. After a while it seems to harden up and you get less drain pain but that first period is hard. Good luck.
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
Dotty
Posts: 160
Joined: Tue Mar 25, 2014 7:16 pm

Re: Peritonal dialysis

Post by Dotty »

Thanks Grey, will try upping my laxatives and see if it helps.

My catheter has moved again. I'm just hoping that it will settle and continue to work.

Dotty
47 years old.
IGA Nephropathy diagnosed May 2013 with eGFR of 22%
PD dialysis started May 2014
3rd PD catheter fitted and failed July 2014
Hemodialysis started July 2014

Red Lippy and PMA (Positive Mental Attitude) gets me through each day!
knittygritty
Posts: 27
Joined: Fri Nov 29, 2013 9:20 am

Re: Peritonal dialysis

Post by knittygritty »

Hi everyone,

My pain is definitely getting better I think. At my last consultation, I asked about it and they didn't seem too worried at all. I was told only use my laxatives if I haven't gone to the bathroom in 2-3 days. Going once a day should be fine. Anyway, we had to change my programme a little because I didn't have any UF so now on 3 cycles a night. Either 3 cycles is a better programme for me or I think I must be getting used to it because I'm sleeping a lot better and the pain isn't interrupting my sleep too much, just at the last drainage really. As my doctor says, this is temporary until I find a donor so if I'm only having to skip the last step that seems like a success.
Diagnosed with medulla cystic kidney disease - Sept 2013
APD operation - May 2014
Sitting patiently on the transplant list
lizbee
Posts: 246
Joined: Thu May 02, 2013 11:02 am
Location: Glasgow
Contact:

Re: Peritonal dialysis

Post by lizbee »

That's good news that your pain has got a bit better and that you are sleeping much better too........it can only improve from now .........take care

Liz
I am 61 years old


diagnosed 17 years ago with Membratts disease

Now receiving dialysis

I am Scottish and live in Glasgow.
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