Hi. I recently had surgery to insert the PD catheter and will be starting training in a couple of weeks. Can anyone share their experience of starting at-home PD so I know what to expect?
Thanks
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Hi
I started pd at home last week after 3 mornings of training.
It has been easier than expected. I had been feeling very tired and nauseous since the insertion surgery( I needed a general anaesthetic as I had a hernia repair)- that is now easing.
I had been expecting to do this at night but they have switched it to 3 exchanges during the day- I am still quite active so the timing has been my main concern but I’m getting there.
You’ll get a list of everything you need at home- find yourself a quiet corner somewhere. It takes 30- 40 minutes and you need to be concentrating so I find a radio is useful but tv is too distracting.
I don’t find it uncomfortable(as long as the fluid has been warmed!) - there can be a pinching sensation at the end of the draining phase, and I’m not aware of the fluid in me- I’ve started on 1l each time.
Good luck- hope all goes well for you.
Xx
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Hi Tinokay,
I changed from HD to PD and even though I was on CAPD, as I couldn’t get on with the machine at night, it gave me much more freedom to get on with life and fit things around the PD. It’s straight forward if you have a dedicated space at home to keep all your kit handy and for the exchange - mine was at a desk in front of a computer to keep me occupied while waiting to drain then fill. With CAPD I found trips and travel around the UK in the car reasonably easy. I had a pre-packed bag with all of the small things that I loaded in the car with the fluid bags and warming plate. Good luck and I hope all goes well for you.
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Hi Gilly
Thank you for your response. I’m glad you are getting on with it ok. I also had hernia repair surgery at the same time as the tube insertion. How soon after surgery did you go for training?
Was it your choice to do the manual exchanges?
Thanks
Hey,
I’m not sure what sort of advice you’re after but I can give you my experience over the last 6 months. I had a 2 week recovery from op to first sessions, personally, I think another week was needed as everything was still quite tender.
I’m 48 and tech savy so learning to use the machine was straightforward enough. I do my exchanged over night, as I have large kidneys and not a lot of space, so there is concern I could rupture the peritoneum if I’m too active when I’m full, I have a max of 1400ml per dwell.
I don’t feel it go in of have any bloating when full but I do regularly suffer with drain pain, as in I get woken up most night by it. However, having been on Tolvaptan before this, I am used to disturbed nights.
I was getting some dry pain during the day but have been advised to leave some fluid in, as before I was trying to drain myself dry. This has helped, I still occasionally feel it but not that much or often.
Is there anything else you’d like to know?
Hi
I’ve been on pd for the last 18 months and don’t regret opting for it. I’m a control freak so like the control I have over my treatment but I also like the freedom I have to travel when I want - although longer trips need planning if you need your fluids delivered to where you are. I started on the machine overnight but had drain problems so went onto CAPD for a few months. But once things had settled down I’ve been able to go back on the machine overnight. Like others I experience ‘drain pain’ - I’ve yet to meet a pd patient who didn’t at times on the machine - but it’s still worth it. Good luck.
Angela
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Thanks 4 sharing. I am very nervous about drain pain. I guess its unavoidable.
It’s fairly easy to control, as soon as it happens I just close the value that is attached to me (or just press the red button on the machine), get up have a shake / wobble and reopen it. This usually does the trick.
On final drain I was trying to get as much out as possible, now once I’m over the 1400 level, I keep going until I feel it, then I stop.