Pain During Infusion?

[KT0930]

I'm having a problem, and I hope some of you might have some suggestions. BTW, if this gets a little long, I'm sorry, but I'm going to try to give as much helpful information as I can...

I've been on PD for about eight months, and I'm having pain during infusion. The best way to describe the pain is almost like cramping. It's mainly in my pelvic area, but sometimes gets bad enough to radiate into my lower back as well. It's worse if I sit or lay down (no matter which side/position I'm in), but if I stand up I can alleviate the majority of it, and sometimes it's absent altogether.

They've done an x-ray and a CT scan, and the position of the catheter is "perfect". I went to my gyn at my neph's urging and she did an ultrasound to look at my uterus and said that's "perfect". Gyn's next choice is (with the help of a general surgeon) a laporoscopy to go in and look around, check for endometriosis, scar tissue, or other abnormalities. I'm reluctant to do this for several reasons, 1) I've never had any symptoms of endo; 2) if it does turn out to be scar tissue I don't know that they can do anything about it anyway, and 3) laporoscopy would mean a month on hemo to heal - I really don't want that!

I found a journal article yesterday that talked about using a PD solution with sodium bicarb in it, and all the patients tested who had had pain had it alleviated or completely go away with the use of the solution. Has anyone else used this? Does it work? What are the disadvantages/concerns? I'm seeing my neph next week, and am taking a copy of the article to him to ask him about it.

I really want to get this resolved, as I'm currently doing CAPD and would love to do CCPD, but am afraid the pain would disrupt my sleep, and I just cannot have that, since I would probably wind up divorced (I'm not nice when I don't get enough sleep!).

Any help or suggestions about the pain or information about the bicarb solution would be greatly appreciated. Thanks, everyone!

[MyssAnne]

Is the pain EVERY time? Are the bags warm? Maybe you are filling too fast? I'm throwing out questions that I am sure have already been asked and answered, but still...   I had not heard of sodium bicarbonate.  I will say, that I am on ccpd, and it was so much better than capd. I am
filling and draining much better, and tolerating higher quanitites. Either way, let us know what the neph thinks....and if you can, let us know
where you found the article!!

[KT0930]

MyssAnne, if I sit or lie down, yes, the pain is every time. If I stand, it's about 75% of the time and is worse the week before and during my period. Yes, the bags are warm. I store three at a time (I do 4 exchanges a day) on a heating pad and the bags are slightly warm to the inside of my arm (similar to testing a baby's bottle). I use the Fresenius Stay-Safe system which has a 1/2 speed for filling, and I keep it on that and sometimes have to hold the clamp down partway in order to slow it even more, so no, I don't think it's going in too fast. I also play with the height of my pole for this reason. I usually keep the bag at about my shoulder height.

I took my copy of the article home, but I will get the citation information and post it tomorrow (if I remember...my PTH is quite high!!).

Thanks for trying!

[Slywalker]

Greetings - I am also doing the ccpd at night so I no longer have the pain you describe - however, when I was doing the manual day time exchanges I had quite a bit of pain when the fluid was going in.  Changing my position in the chair sometimes helped.  I get some shoulder pain occasionally from the ccpd, but I am now laying down when I get "filled up" and for some reason I get no pain with that position.

Good luck - and by the way  - I highly recommend getting the cycler and doing the night-time exchanges.  I am also using fresinius.

Sandyb
 

[KICKSTART]

I also do CAPD but manual . The only time i get pain like you describe is when ,for one of my exchanges i use a stronger bag. I mentioned this and was told , i must be a bit sensitive , but nothing has been done so i just grin and bear the discomfort. I use Baxter.

[KT0930]

Kickstart, I already use 1.5% bags almost exclusively (I say almost because maybe once every other month or so I'll use a 2.5%).

Slywalker, did going to CCPD make the pain stop completely? I thought it was a similar process with the fluid going in and out, so if manual hurts, then the cycler would, too?

I'm getting so frustrated with this there are times I just don't want to do my treatments (have not skipped one because of this yet, though). I've pretty much accepted that it's going to be at least several years until I get another transplant, and I don't want to have to live with this pain for four hours every day. Sorry, had to moan for a minute. Over it now.

[MyssAnne]

I say go to the cycler then. I was like Slywalker, I would have pain on the manuals, but once I started on the cycler, it has, for the most part,
gone away. It sounds as if you're doing everything you can and should be doing, it's just gonna be painful for some reason. I say push for the
cycler and see how that goes.

[MyssAnne]

And by the way, moan all you want!!!!  This is a safe place to do so, nobody's gonna think badly of you for doing so!

[Slywalker]

Greetings again - yes, when I started the cycler the pain pretty much stopped. And while the system is basically the same it only has to be done at night and frees up the day time.  Plus, the "prescription" that I am under uses more on the fill than the manual system.  When you are laying down there is more of the peritoneal cavity available for use.  I guess that is why the fill up is more. 

 Occasionally I get some pain in the shoulder area but I've been told as the air in the cavity is replaced with the fluid - the air has to go someplace and it usually goes in the shoulders.  I did have terrific pain with the manual system which is what they made me train on before the cycler.  And now when I go in for monthly check ups they make me do an exchange even when I moan and groan and almost cry because it hurts.


The other night on the cycler the first fill was really weird - I could feel it inside buzzing through the catheter to the cavity - very weird sensation.  That had not happened before or again.  Hmmmmm.

Take care
Sandyb

[KT0930]

Good morning, all. First, I want to say thanks for all the replies, I really appreciate it. I've got about three or four possibilities to go to my neph with next week, so maybe we can figure something out. One more question about it, though...do you think they'll let me just "test drive" the cycler for a week or so to figure out if it'll work for me. I really want to do it, but if it's going to disrupt my sleep, I just can't. Also, if I try it then decide not to do it, do I return the machine for a refund? I guess what I'm asking is do I have to buy the machine, or do I just rent it, so if it doesn't work, do I just return it and not have to pay for it anymore? I'm assuming this can't be inexpensive.

Anyway, I've attached the article that I mentioned in my first post, hope you find it as enlightening as I did. Have a great day everyone!

[MyssAnne]

I don't know if you can do a test drive. That's an option.  Normally what happens, at least with Fresenius, is that the machine is shipped to you, the nurse comes out and sets up the program for you. Then you are on your own!  Now, perhaps they have an extra one that you could use
for a bit. No harm in asking!! You do not pay directly for this. My clinic pays a rental fee for each machine their clients use.

[KT0930]

Woo-hoo, I'm getting a cycler!!!  I talked to the neph yesterday, and he said the leading expert on PD (some guy in Maryland, can't remember his name) says that for patients with pain during infusion, the first thing you try is the cycler. I'm calling the clinic tomorrow so they can order it. Woo-hoo!!!! Just want to give an update. Let's hope it works.

[Sluff]

I hope that works for you. 

[goofynina]

Woo-hoo, I'm getting a cycler!!!  I talked to the neph yesterday, and he said the leading expert on PD (some guy in Maryland, can't remember his name) says that for patients with pain during infusion, the first thing you try is the cycler. I'm calling the clinic tomorrow so they can order it. Woo-hoo!!!! Just want to give an update. Let's hope it works.

I am sure you will enjoy it so much more.  Just remember we are here for you too if you have any questions, sometimes i find i get answers quicker here than waiting for my neph or nurse to call    Good Luck to ya and please keep us updated

[KICKSTART]

Good luck , anything that helps has got to be good ! I hope it works for you!

[Slywalker]

Well good news for you!!!     I'm sure you will like it much better than doing the daytime exchanges.  Keep us posted on how it goes once you get it.

Take care
Sandyb

[MyssAnne]

Yay!!! once you get used to it, you will love it!! I love mine, hate it when I have to use the manuals!  There IS such a difference!!!!!

[JerseyGirl]

I train PD patients and they love it!  BTW yes you can return the cycler if you don't like it, but I guess that you will.  I've had one or two patients that don't like it and I simply have the company pick up the cycler and all the supplies.  God luck!

[Chicken Little]

I don't know how I missed this thread.  I have pain/cramping on fills.  I actually have weird pains the entire time I have fluid in, but it's worse on drains and fills.  I tried sodium bicarb in the bags, but didn't notice a difference.  I've been on the cycler for a couple months and, for me, it's worse than manual.  I wake up for every drain/fill and the only way I've found to relieve the pain is to bend the tubing to restrict the flow, which often sets off the cycler's alarm. 

I'd try both though and see if they work for you.  I hope they do.  I've just resigned myself to deal with it until I hit the transplant lotto. 

[KT0930]

Just have to share, I'm currently doing my last CAPD treatment that I will have to do at work, barring any unforseen circumstances! 

My cycler arrived at my clinic last week, and I do the training tomorrow! Yay!!!!

[goofynina]

Just have to share, I'm currently doing my last CAPD treatment that I will have to do at work, barring any unforseen circumstances! 

My cycler arrived at my clinic last week, and I do the training tomorrow! Yay!!!!

I hope you love your cycler just as much as i love mine   Your gonna love having your days free 

[Slywalker]

KT - happy training time to you.  I hope it works out as well as mine has.

Take care

Sandyb

[Ohio Buckeye]

Hope it goes well for you.
You will find the cycler so much more convenient, easy to learn.

[KT0930]

Hey all, just wanted to give an update. I did my cycler training on Tuesday and started using it that night. First night I woke up for probably ten minutes every time I started to fill (four times), then Wedneday and Thursday nights I took Benadryl at bed time to help me sleep. It was better, but still not perfect. (I actually had to go into work late today because I needed more uninterrupted sleep). Since it's the weekend now I figure I'll be able to get through, and if I need more sleep in the morning I'll have the time to do that. Sure has been nice having my days free!

[goofynina]

Glad to hear it KT,  I am sure with a little time and a little more getting used to, you wont even know it is there (ok, wishful thinking i know) but i think you know what i'm trying to say   Hope things get better for you really soon and you get some GOOOD sleep.