Becoming a burden

[Dibs]

Hello everyone.

Well, I've known this was inevitable for some time, but I think this week will be the start of me being a burden on the NHS. I'm due for a PD catheter insertion and umbilical hernia repair this week. I have a couple of questions.

I'm due for the op on Wednesday. I have an desk job and can catch a bus in, but am I being optimistic for a return to work on Monday?

Both my polycystic kidneys are still in situ, but with them and the impending dialysis, what are the chances of my hernia returning?

[wagolynn]

Hi Dibs,
I am afraid there isn't a straight answer as to how soon you can return to work, the hernia repair is the unknown, your surgeon is the best person to ask.

One of the problems with PD is hernias, if you are prone to them the fluid load tends to find any weakness.

Good luck.

[rheaybou]

I had my PD operation on a Monday evening and couldn't manage to walk about without pain until the Saturday.

Not sure how busy the bus can be but avoid being bumped for a few weeks, you won't be able to stand up for the journey at the start. I can understand that you want to get back to work/feel normal, but don't rush it

[Dibs]

I've made it into work. It is a little uncomfortable. The hernia still hurts with coughing, sneezing etc. The catheter itches. But as far as I can tell, the operations went ok. Due to have it looked at on Thursday.

[rheaybou]

Did you risk public transport?

[Dibs]

Yes. It's not very often that there is a need to stand. People have been offering me a seat when I have been standing recently, which I found annoying at first. The 0.5 mile walk from the bus stop to home takes a bit longer than usual though. I haven't taken any paracetamol for a couple of days now, so I guess that is a good sign. I'm just hoping the dressings stay on until tomorrow.

[rheaybou]

I found walking was painful and the fear of pain made me bend over slightly, but the more I walked upright the quicker I seemed to improve. Once you get to starting to use the access then I think you will be on the paracetamol and something a little stronger for a few weeks, the initial pain of draining and filling the fluid is not the nicest feeling for the first week or so - sorry to give you this bad news!

[Dibs]

I still have a bit of a stoop. Tried lying flat in bed last night, but I had to get the bolster pillow again in the end.

Had the dressings changed yesterday. It was interesting to see what was there. I've lost my belly button and it was strange to see a tube coming out of me. Apparently I'll need to get the dressings changed for at least another three weeks and it looks like January before I have to worry about doing any PD.

[rheaybou]

I still have a bit of a stoop. Tried lying flat in bed last night, but I had to get the bolster pillow again in the end.

I remember the stoop well! I found that holding slight pressure with your palm on the area helped and made it easier to get up straight and get your shoulders back, once stretched out I found the discomfort almost vanished. Using the same technique to get up and down from sitting works, but not for getting in/out of bed.

Had the dressings changed yesterday. It was interesting to see what was there. I've lost my belly button and it was strange to see a tube coming out of me. Apparently I'll need to get the dressings changed for at least another three weeks and it looks like January before I have to worry about doing any PD.

It is a funny sight to see that pipe coming out, I was really scared to even brush it with a gauze. Moving the dressing about the centre point of the exit site will help protect the soft skin in the area from getting sore/dry. (dont keep the exit site in the middle of the dressing if that makes sense??)

If you are also going to tape your tube use the same principal, I would often tape the coil of the connector to the top of my dressing.

[Dibs]

Well I had my first trial exchange today. One thing I noticed straight away was the pain when draining. It's a pain that I have experienced a few times since the catheter insertion. I thought it was constipation initially, but I am not having any problems defecating. As soon as the clamp stops the draining, the pain eased. It seemed like the nerves in the peritoneum were creating sympathetic pain in my bottom. Some paracetamol did make it easier for a second drain.

On the burden topic, I am slightly dismayed about the amount of waste, and therefore cost, that each therapy session produces.

[rheaybou]

Well I had my first trial exchange today. One thing I noticed straight away was the pain when draining. It's a pain that I have experienced a few times since the catheter insertion. I thought it was constipation initially, but I am not having any problems defecating. As soon as the clamp stops the draining, the pain eased. It seemed like the nerves in the peritoneum were creating sympathetic pain in my bottom. Some paracetamol did make it easier for a second drain.

I started on the overnight machine confined to bed, the drain pain was terrible! the position of the tube inside and the suction/movment makes it feel like a pain in your bottom

On the burden topic, I am slightly dismayed about the amount of waste, and therefore cost, that each therapy session produces.

The amount of waste that CAPD and APD produce is frightening! If you move from manual exchanges to the overnight machine be ready for a big surprise as you have a whole host of pipe/tubes sets to discard each morning. If I wcould learn how to attach an image I would show you my old setup and amount of sterile packed stuff needed.

[wagolynn]

Hi Dibs,
Don't suffer in silence, explain it to your PD nurse she will probably have several suggestions to help or alterations can be made to the machine settings. At the worst, they may decide to move the catheter.

Best wishes.

[Dibs]

The PD nurse was aware of the discomfort and kept stopping it before the drain had finished. The second day training on both the machine and manually produced a pain on the right side of the groin instead. Today's session was at my home on the machine and was easier. Tonight will be my first proper session. The machine has been set to only drain 85% for the intermediate draining. Fortunately, both me and my wife are not working tomorrow.

[wagolynn]

Hi Dibs,
I hope all goes well, have a good night.

[Dibs]

Five nights in and the process itself is working ok. No alarms. Only the occasional drain pain. I find the whole thing a bit depressing though, and I'm not sleeping very well, which might be why I'm not feeling any benefit yet. Luckily, it is not disturbing my wife.