New to CAPD

[Birdman]

I started CAPD this week, and am finding all the stuff rather challenging. I found this forum, and hope that the lovely people on here can help me through my doubts and fears.

My first question. Can anyone please tell me. Does everyone have to measure the volume in the drainage bag every time? If so, how do you measure it accurately?

My PD nurse, who is absolutely wonderful, snips the corner of the bag and pours it into a 1 litre jug. When it is full it goes down the sink, and the process is repeated until the end measurement is attained. All well and good, but it is easy for the liquid to spurt, so that when I do it myself the reading is not accurate.

How does anyone else manage this so it is accurate please?

My second question is what volume drainage is normal? I am getting anywhere between 1.8 and 2.3 litres. Is that OK?

My third question is about holidays. My PD supplier is Fresenious. If I go on holiday to a hotel in the UK, what do they actually send to my destination? Is it just boxes of fluid, or do they send a warming tray, disinfectant caps etc etc as well? I would just like to know how much medical supplies I have to take.

Sorry if all this info is already on the forums somewhere, but I am new to all this so thought it easier just to post a question.

[SKM23435]

Hi Birdman and welcome to the forum.

I've just had a transplant after a year on APD. I have to say that as a method of dialysis it worked for me. I do however remember those first few weeks as i gradually got into a routine. It was all a bit new and stressful. It does get easier as it all becomes second nature. I didn't have to measure what I drained out as the machine did it for me. However on the occasions I did CAPD (usually as part of a hospital treatment) we measured the fluid coming out by weighing the bags. Ask your PD nurse if she can help arrange this. So much quicker and easier (and more portable).

My supplies were from Baxter so I can't comment specifically on other suppliers. My understanding was that they would deliver consumables to a holiday destination but I'd need to take my own hardware (APD machine or in your case bag warmers). Why not talk to who ever arranges holiday supplies at your unit. They will give you a very specific answer to your questions.

Good luck
Any questions just ask.some will be able to help.

Sue

[Grey]

I was on PD for tears (quiet appropriate misspell actually) and never once had to actually measure the drainage. My machine did that for me so if you wanted to know how much went in and how much came out it is all there on the machine. Baxter

Depending on how well your kidneys are working, I mean passing fluid as opposed to filtering, you may experience fluid build-up in your body. If that happens they should review your program and together with various tests manipulate the volume going in and the volume coming out so that more or less fluid is taken off with each session. towards the end of my dialysis I was taking between 600ml and 1000 ml extra fluid off, but by then my kidneys were not passing much at all.

All these volumes are dependant on your situation and how your body is working. Again towards the end I had fluid restrictions and could only drink 800 ml fluid to reduce the absorption of fluid and reduce the amount that had to be taken off with each session.

Crazy world though, no sooner was I used to all that than I get a transplant and must now drink 4 litters of water every day.

[AmberH]

My husband was on APD for a year and had fresenius supplies. We went to Norfolk for a week and they were wonderful. They delivered the machine and all the fluid bags, we only had to take the drainage bags and cassettes with us. They were there when they said they would be and collected the machine again when they said they would. Very helpful and made going away very easy. Just speak to the person that calls you to arrange your deliveries.

Good luck with it all.

[rheaybou]

When I travelled on PD I would not take the APD machine and would do the manual CAPD bags. I have a set of digital scales, similar to spring scales and would use weight to determine the drawin volume and calculate the difference to give fluid balance.

http://www.chinalabsupplies.com/balance ... P-G003.jpg

My supplier was Baxter so I never had an experience with Frenesious, however I woul dtake my own bags, caps etc with me in the car to avoid not having supplies delivered and all the fuss. But I hear lots of people have the suplies delivered, you woul djust need to contact the hotel and make sure they are okay to accept a few heavy boxes of stuff for the duration of your stay. I hope you enjoy the break.

I would do manual bags while on days out in the back fo the car, at the zoo and out and about. I even have a picture of me doing an exchange at Goathland railway station during a nerdy Harry Potter day at Whitby. Dont let dialysis hold you back.

[wagolynn]

Ask the PD nurse if you can just weigh the bags, I think the need to measure the drained volume will be temporary, once they work out a routine for you, they will periodically check samples from your drain bags. Everybody is different.

[MandyV]

Welcome and I am sure that you will find it really takes less time than you imagine to feel comfortable with doing CAPD. I did it for nearly 3 years before I changed to APD which I did for roughly the same time.

I am a little surprised that the nurse is suggesting such a messy and tricky way of measuring your fluid - I only ever used a scale, provided by the hospital. Also I was told never to put the fluid down the sink but to flush it down the toilet both for hygiene and because apparently it can clog your drainage from the basin/bath - I never tried it! But the answer is yes I measured my fluid outflow every time - I was not great at writing it down but kept track of what was coming off and certainly to start with it is important so they know what your prescription should be.

What amount of fluid do you have? 2l is the default but I was susceptible to hernias so only had 1.5. I would always try and get at least what I put in out (that is why the scale is so helpful as you can monitor progress) - and did the jumping up and down and swaying if I was under - in the beginning I produced a fair bit of fibrin so I would have got overloaded had I just relied on the 'simple' outflow .

My supplier was also Baxter and they made it very clear when they were delivering holiday supplies exactly what would and would not be included. The only time that things other than fluid were provided was overseas when the connections might be slightly different. I have to say that if you are travelling by road in the UK it is probably easier to take supplies with you as otherwise you need someone to receive it in advance and also check that the delivery was correct. That being said the ability to travel easily is one of the big advantages of CAPD so whatever makes your life easier ...

[Birdman]

Sorry to have been so long replying, but the past 10 days have been like entering unknown territory, and also stressful. But I would sincerely thank you all for your advice and support.

In answer to your questions, I am on 2 litres of 1.5 fluid, doing 4 manual exchanges per day, which I now put down the toilet! I hope to go on to overnight dialysis before too much longer.

Unfortunately, we have a 2 seater car, with very limited boot space, so carrying loads of supplies is not an option at the moment. I think that we will have to change the car for something more practical in the long term.

Another question if I may. At the end of last week I had blood tests as it was 9 days since I started dialysis. I picked up the results from Patientview last night. They show that my urea, phosphate and potassium levels have decreased significantly. Hooray!! But my question is, is that the level they will remain at? Or will they keep on decreasing?

I know I could ask my wonderful renal team, but this is the weekend, and I don’t like to keep pestering them with more and more questions. I also think that people on this forum have experienced everything from a personal level, so really appreciate your knowledge.

[wagolynn]

Hi Birdman,
Given that nothing changes - your bloods will eventually ( say a month +) stabilise at a new, dialysed level.

However, life is not like that, any residual kidney function will continue to decrease at an unpredictable rate, creatinine and urea levels are influenced by any changes in your activity.
Potassium and Phosphate are influenced by what you eat.

Your team will be making adjustments based upon your blood results, and your weight relative to your dry weight target.
Things they can change - the dialysate chemicals, volume, length of dwell, number of fills per day.

Have you started on dietary restrictions yet? The dietician makes dietary recommendations based on your blood results.

[Birdman]

Hi Birdman,
Given that nothing changes - your bloods will eventually ( say a month +) stabilise at a new, dialysed level.

However, life is not like that, any residual kidney function will continue to decrease at an unpredictable rate, creatinine and urea levels are influenced by any changes in your activity.
Potassium and Phosphate are influenced by what you eat.

Your team will be making adjustments based upon your blood results, and your weight relative to your dry weight target.
Things they can change - the dialysate chemicals, volume, length of dwell, number of fills per day.

Have you started on dietary restrictions yet? The dietician makes dietary recommendations based on your blood results.

Thank you so much for that Wagolynn. The info you have given me is invaluable.

My urea has gone from 35.1 to 22 in 9 days. It was over 30 for a year prior to dialysis.
I was very careful with my diet before dialysis, but my potassium and phosphate levels have decreased from 5.5 to 3.8 and 2.04 to 1.79 respectively.

I haven't been given any real dietary restrictions yet. On the day that I started peritoneal dialysis, the dietician at the hospital said I need to have 9-10 portions of protein per day, which I have been sticking to. Fortunately I am a carnivore and love a lump of meat!

I am however putting on weight at rather an alarming level. 2 kilos in 11 days. Is that normal?

Thanks for your help.

[wagolynn]

Hi Birdman,
This website is reliable if a little technical http://www.edren.org/pages/handbooks/un ... isease.php
I use it as my starting point when looking for information on almost anything kidney related.

I am on Haemodialysis, using the Ultrafiltration method, the targets for this are as follows:

Potassium - Less than 6 mmo/l

Phosphate - 1.1 - 1.7 mmol/l

Calcium - 2.1 - 2.5 mmol/l

Albumin - Greater than 30g/l

Chlolesterol - Less than 5.0 At this unit only measured annually.

Heamaglobin - 100 -120 g/l

PTH - 14-63 pmol/l

Urea removed - Greater than 65%. I way of showing the effectiveness of dialysis. It shows on our bloods as URR, 100% would be perfect.

Ekt/v - Greater than 1.4 (Ekt/v Estimated kt/v) Ekt/v is a method of calculating the effectiveness of dialysis it takes into account Creatinine Urea and body weight, I don't think it is used with PD.

The KPG website is a very good source of information. http://www.kidneypatientguide.org.uk/dialysis.php

[Birdman]

I am afraid I am going to be a real nuisance and keep asking questions.

Yesterday I did 4 exchanges. This was my 12th day of P D. By the end of the day I was showing negative. 2000 in each time, but only 1900, 2100, 1800, & 1900 out. So total of 7700. This has never happened before. While some drains have been under 2000 before, over the course of a day they have always added up to over 8100. Is this negative figure OK? I have just realised that I have had no guidance about this.

The other thing I noticed - which is probably related, but seems really weird given that I have so little kidney function - is that yesterday I urinated a lot more volume than usual. What is that about?

I am also concerned about my weight gain still. How much did others put on in such a short time please.

I feel I am getting paranoid and neurotic, so please bear with me.

[wagolynn]

Hi Birdman,
Other contributors to the forum who have been or are on PD can give you better answers.

Fluid imbalance - My first thought is, your question should be addressed to your PD nurse, she/he has more information about you than we have.
PD should remove fluid from your system, the amount depends on the type of dialysate in use and it's strength. Ask your PD nurse, they should have given you a telephone number to ring if you are worried, make use of it. Don't worry about being a nuisance most of them like it when you ask questions, it shows you are interested and trying to do the right thing.

Weight gain - I am stating the obvious here, sorry but here goes, any fluid gain or loss will show in your weight.
There is a dialysate (the fluid in the bags) that is based on glucose, this can and does cause long term weight gain. I am not sure that it is still in use these days.

I am sorry to keep pointing you back to your PD nurse but you need to build-up a relationship of mutual trust to make the system work for you.

I hope that helps a bit.

[MandyV]

Hi Birdman - lots of questions which is great! Here are my comments :
1. Not ideal to get negative UF (less fluid out than in) but there can be many reasons including it being hot and you sweating - one day is not critical but call your nurse - I found my nurses fantastic and there is no such thing as a silly question with them (or here). They will also want to know about other things like weight gain which is a sign of retaining fluid .... (Hence why some units ask you to weigh yourself daily)
2. Passing urine - one of the great things about PD is that it supports residual renal function so you may well carry on passing urine normally - however production of urine on its own is only part of the story - your kidneys are not clearing the toxins so you will notice that your urine will always be light in colour (unless you have eaten something which changes that).
3. Diet and fluid restrictions - very individual and definitely only to be undertaken with professional advice - I was lucky and never had dietary restrictions (other than being told to eat plenty of protein) and my fluid was not a problem either as u had what I wanted but sort of naturally seemed to balance it out.

The nurses expect lots of questions especially in the beginning and don't be afraid to ask to see them either - you will find that as you become more used to how your body tolerates this you will be more confident but always ask if in any doubt.
Good luck!

[Birdman]

Hi Birdman - lots of questions which is great! Here are my comments :
1. Not ideal to get negative UF (less fluid out than in) but there can be many reasons including it being hot and you sweating - one day is not critical but call your nurse - I found my nurses fantastic and there is no such thing as a silly question with them (or here). They will also want to know about other things like weight gain which is a sign of retaining fluid .... (Hence why some units ask you to weigh yourself daily)
2. Passing urine - one of the great things about PD is that it supports residual renal function so you may well carry on passing urine normally - however production of urine on its own is only part of the story - your kidneys are not clearing the toxins so you will notice that your urine will always be light in colour (unless you have eaten something which changes that).
3. Diet and fluid restrictions - very individual and definitely only to be undertaken with professional advice - I was lucky and never had dietary restrictions (other than being told to eat plenty of protein) and my fluid was not a problem either as u had what I wanted but sort of naturally seemed to balance it out.

The nurses expect lots of questions especially in the beginning and don't be afraid to ask to see them either - you will find that as you become more used to how your body tolerates this you will be more confident but always ask if in any doubt.
Good luck!

Hi Mandy,
Thanks for your understanding. I would like to explain a little. I know the PD staff at my hospital are wonderful, and don't mind me asking questions, but I have always tended to be an independent sort of person, and it is alien to me to keep bothering people. Silly I know, but the anonymity of a forum such as this, with FMs who have experienced these problems first hand, is a great comfort to me at these early stages.

This dialysis stuff is totally life changing, and everything is so different and challenging. Part of the problem is that I don’t yet know what “normal” is in dialysis. So every little thing becomes a mountain, when perhaps it is only a grain of sand.

But you will be glad to hear that I have had a chat with my PD Sister this morning, and she has put my mind at rest about a couple of things. But my weight gain and blood pressure increase need to be monitored. So she is going to ring me the next couple of days to see how my weight and BP are going, then she is coming to visit me Thursday. She is WONDERFUL!

I am sure I will continue to post questions on here, and thank you - and everyone else - for your support.