PD Training

[Red from Canada]

A tidal program leaves you with a little bit of fluid still in after each exchange, without draining completely...so you don't get that tugging, cramping feeling as in a full drain.  After a while I think the peritoneum stretches so that it doesn't hurt any more.  I am gradually weaning myself off by reprogramming my machine.

[Ken Shelmerdine]

Laurie
Sorry to hear your having the dreaded drain pain. Your not on your own, it's a common problem but it usually gets better with most people. Hope things soon get better.

[MyssAnne]

Ken is right, it WILL get better. One thing I found when I had pain from draining was to raise my knees so that my feet were flat on the bed (best place, when on the cycler!). I then started breathing deeply in and out. Kinda like the Lamaze breathing.  That helped alleviate it a bit. ALSO taking some tylenol about half an hour before starting the cycler helped too. 

[Laurie]

I have tried everything. Nothing helps. Once it starts to pull, the pain will not stop. I talked to my nurse this morning and they are gonna try the tidal program. I hope it helps.

[KT0930]

Best of luck, Laurie! My training nurse told me that they don't use the tidal program, but then, they don't do a few things I wish they did!

Katie

[Laurie]

Best of luck, Laurie! My training nurse told me that they don't use the tidal program, but then, they don't do a few things I wish they did!

Katie

I am the first one my nurse has tried it on. 

[rimbo74]

Hey Laurie,

Glad to hear you dialysis is going well, I also had pain with Baxter and had to have it on tidal (leaving in a little extra). 

[MyssAnne]

Laurie, have you tried it yet? Did it work? 

[Laurie]

I tried it last night, but I didn't fall asleep untill 2:00, so I was awake for all of the drains except 1. I was able to sleep thru the last drain, but I did have to bypass 2 when I was awake.
So, I'm not real sure if it's gonna work or not. Maybe tonight I will be able to sleep. 

[Ken Shelmerdine]

Laurie, is the pain  near the end of each drain, if so, tidal should solve the problem.

[MyssAnne]

Let's hope tonight is the winner for you Laurie.   Sometimes there's a period of adjustment. I tell ya, the first week I was on it, I HATED it. I cried, I was so frustrated. Then, once it started working well, I really liked it, and still do. 

[Laurie]

Laurie, is the pain near the end of each drain, if so, tidal should solve the problem.

Most of the time the pain is near the end of the drain. Sometimes it will start in the middle of the drain. I tried the tidal last night and still had to bypass 2 drains.

I talked to my nurse this morning and she is thinking I might have to switch to manuals. At this point, I'm all for that.

[MyssAnne]

So will you just stay with manual for a week then try again? Or is it manuals permanently?

[KT0930]

Laurie,

I'm so sorry it's not working out as well as you'd hoped. I know having disturbed sleep can be a nuisance, but can you try it for another week or two and see if you can start sleeping through it? I'd hate to see you give up on the cycler this soon!

Good luck, no matter what you decide!

Katie

[MooseMom]

Oh God..."drain pain"?  That sounds scary!  Lord, the more I learn about dialysis, the scarier it becomes. 

Laurie, I'm really sorry you are having to go through this.  Your body is going through such an extreme change, so it makes sense to try to be patient and give yourself a bit more time to adjust.  But I know that's easier said than done.  I'm really interested to hear about your progress.

As for "drain pain", what can be done to alleviate it?  Do you all take pain killers, or do you just have to grin and bear it until it recedes on its own?

[angela515]

Drain pain usually goes away when the problem causing it is fixed. It is caused for diff reasons for diff people...

[MooseMom]

Could you tell me a bit more about how drain pain is different in different people...what are the different causes?

Thanks!

[goofynina]

I do know that position is a big factor, i get it if i am on my back, but if i am on either side, i dont even realize i am draining    If/when i ever get constipated, that is a big factor too, not only do i feel the drain pain more, i start retaining fluid, so i make sure my plumbing is up and running each and every day    Those are the only 2 that i know of,   

[Laurie]

So will you just stay with manual for a week then try again? Or is it manuals permanently?

I think I'm gonna stay with the manuals permanently.

As for "drain pain", what can be done to alleviate it? Do you all take pain killers, or do you just have to grin and bear it until it recedes on its own?

The only thing I know to do is bypass the drain and move on to the fill. Which leaves me with extra fluid.

I have to make an appointment to have an X-ray done to see if maybe the catheter is too long or has moved. If it is too long, then I will have to have it replaced. 

[MooseMom]

I guess you could always go back to the cycler in the future if you ever change your mind.  Maybe it will be easier once you've done manuals for a longer period of time.  Just do what you have to do, you know?

I know it sucks to think that there is something wrong with the placement of the catheter, but if there IS something wrong there, then do get it fixed, OK?  Ultimately, dialysis is supposed to make you feel better, not give you more pain.  If what's causing pain is just a stupid tube, then hopefully getting it fixed will go a long way to making your life more liveable.  Let us know what you find out.

[KICKSTART]

I had to laugh .. i have had 'drain pain' for nearly 3 years ! All thanks to my catheter being stuck under my 12th (elongated) rib. Very early on after my catheter was fitted , i was in total agony each drain and no one could understand why .. they even told me it was all in my head .. I ended up having the biggest row with the top doctor and telling him it was BLOODY real. In the end my GP got me an x-ray which showed my catheter was lodged under my rib . They gave me strong laxatives to try and bring it down but by then it was well and truly stuck . Amazingly it does work ok till i get to a certain point on a drain and then the pain is awful .. so i just stop draining at that point and go to a fill. Its been like this now for 3 yrs and if i just turn a certain way it feels like a dagger in my ribs , but i have just got used to it after all this time now.

ps ..forgot to add thats why i've been on manuals for 3 yrs now!

[Laurie]

I guess you could always go back to the cycler in the future if you ever change your mind.

I don't think I will go back to the cycler. After trying it, I don't like the thought of being tied to a machine. I have a 6 year old daughter and all I can think about is what if something happens and she needs me and I can't get to her quick enough.

I know it sucks to think that there is something wrong with the placement of the catheter, but if there IS something wrong there, then do get it fixed, OK?

I will get it fixed, but not by the same surgeon. He told my Neph that if something is wrong with it, there is nothing he can do and I will not be able to do PD. Both my Neph and nurse disagree and have told me I would need to find someone else.

Ultimately, dialysis is supposed to make you feel better, not give you more pain.

I felt so much better before starting dialysis. Pretty much the only symptom I had was being tired all the time.

Kickstart - I'm sorry you have to deal with the drain pain too. I can handle the pain, but I can't handle having to wake up every 2 hours to bypass the drain.

I start the manuals on Sunday, so hopefully it will get better. They are gonna let me try doing only 3 exchanges a day because I still work full time and I don't want to have to do an exchange at work.
I hope this all gets straightend out cuz I hate the thought of having to do hemo again.

[rookiegirl]

Hi Laurie.  I've been reading your message threads pertaining to PD Training.  I start my training on Monday (10/22/07).  I'm really nervous.  I just had my catheter placed on 10/05.  Feeling all bloated right now.

[KICKSTART]

Hi Laurie , yes manuals might be inconvienient for you but at least you have better control over the pain side of it ..as soon as it kicks in you just stop draining. Tbh i dont mind manuals .. i have done them for so long now , it gets kind of like cooking ..you dont think about making meals but you do them several times a day !!!

[Laurie]

Hi Laurie. I've been reading your message threads pertaining to PD Training. I start my training on Monday (10/22/07). I'm really nervous. I just had my catheter placed on 10/05. Feeling all bloated right now.

I too was really nervous about the training, but it was no big deal. I had to do 6 days of training and towards the end it became very boring.
Good luck with your training. I hope it goes well.