First night APD

[Annie62]

First night APD for husband last night. All was going well machine set up no problem but at the end of the initial drain the pain of that final suction was too painful to bare and he had to abort and go back to manual dialysis. Anyone else gone through this? Waiting for APD nurse to call us back.

[Hidden]

I have been on Apd for three months now. I had the same problem with the initial drain and the final drain. There were times when I wanted to give it up in the first week but I carried on and my body seems to have got used to it now. Another couple of things that may help is to raise the machine level a bit and to make sure that the tube is filled to the top with the fluid after priming, if not you can re prime it again. I have also found that was has helped me with the pain is making sure that my bowel is empty before dialysis. Good luck, I hope your husband gives it another go.

[opie]

Hi, everything that Treasha54 said, your nerves gradually get used to the 'sucking' and most drains now I can't even feel (after 2 years). Initially though I used the twist clamp to slow the flow down (don't close it fully as the machine can tel it is sucking against a closed line and alarm).

Now if a drain is painful (usually due to sluggish bowels or something) I use the plastic snap clamp on the machine line (the clamp nearest me) and squeeze it to reduct the flow (or clip it fully shut and listen to the machine noises for when it test the line - you will get to know the various sucks and hisses, and release it just before the 'line test' where it pushes a little fluid back to you.

I found that once the initial drain was over the following drains were much better, I hope the dialysis nurse can help as well, sometimes altering the fills etc on the machine can help e.g. tidal.

And a hot water bottle!

Good luck, it does get easier, x

[Annie62 in reply to opie]

Thank you Opie, what a difference a week makes!! Lots of adjustments this week to the settings and last night we both slept through the night!! Hoping this is how it will carry on as we both really want this to work so we can lead a normal life again

Thank you all for your support

Best wishes to you all

Annie

[opie in reply to Annie62]

That's great news! I'm glad you had a good night, it does get easier as you get into the routine of it. I still have the odd bad night but once the programme is suited to you they are far less frequent.

Sleep well!

[fredinspain]

Yeah I was put on PD in Spain and had no problems because they gave me phials of heparin to inject into the bags. Moving back to the UK I brought some back with me but when it ran out my renal unit wouldn't give me any as they said I wasn't trained to self medicate ignoring the fact I had done it for 4 years and was self medicating each night by doing PD.

The final drain pain became worse as a result and eventually unbearable and I had to go on manual PD. Searching on the web found many renal units that do give heparin. However continuous bouts of peritonitis finally drove me off PD after 6 years and on to HD.

[bella1999]

I no longer do PD because my catheter wasn't inserted in the correct position but when I was doing it I was using mild laxatives (just when I needed to) to keep me regular but I rarely had that problem anyway due to my IBS (D). I also take amitriptyline for muscle, joint and nerve pain and that would've helped too. The heparin also helps and I don't understand why some doctors are reluctant to prescribe it; when I was using it I always injected it myself but mine was prescribed by the orthopaedic consultant rather than a GP. Maybe your husbands renal unit could prescribe it if they aren't already doing so? It does get easier the more used to it you get. I hope your husband can persevere with it but if not there are other options. Best wishes and good luck to you both!

[Annie62 in reply to bella1999]

Thank you. He tried again last night. The initial drain was 2.5 litres but it still thought there was more and wouldn't move on to the fill period. The APD Nurse is calling tonight to talk him through it and teach him how to bypass if he is certain he is empty.

[opie in reply to Annie62]

Hi, my understanding is that when they first programme the machine they use a fairly standard 'guess' at what your programme should be and then tailor it to suit as you go.

Has your husband had a PET test or KT/v test? They usually do them once you are settled on PD (I think try can do ten on APD) and from tat can work out how fast you dialise. I am a high transporter so start to reabsorb fluid if it dwells too long. Once they confirmed this with the test they put me on more cycles per night and pain and bloating improved. The type of fluid can also make a difference, physioneal, extraneal, dianeal etc

It took several months of tweaking to get it right but it is worth persevering if he can. The pain does get duller as you get used to it and eventually dissaears, now I only get pain if I haven't been 'regular' and very rarely alarm.

[Annie62]

Thank you all for your comments it helps to know others have struggled too. Best wishes to you all Annie x

[bella1999]

When I did it at home I had to contact the poor nurse every night. She was lovely and really helpful and we tried different strengths and combinations of fluids etc. My machine alarmed at least x4 every night bcuz my catheter hadn't been positioned properly. Your husband will get used to it and get into a routine quickly. My problem wasn't the type of dialysis it was where the surgeon had placed the catheter. I worked full time whilst on this dialysis but it us tough fitting it all in!! I now do haemodialysis 3 mornings a week in the renal unit and have done for the last 3 and a half years and it suits me much better but some people have managed for 20+ years without having to do HD at a renal unit. I really hope it works out well for you both! And don't worry about having to call or arrange a visit from your nurse. They would probably be more surprised if you didn't contact then!! Best wishes!!