Hubby on cycler

[bwisern]

Need to vent, and seek advice. Hubby has been doing PD since Oct '08, doing manual exchanges w/o any problems/pain (except for coordinating schedules), Dec 23 started on cycler.  The first 2 nights were OK, only one alarm i think.  But since then about every night there are MANY low drain alarms, he is having pain that puts him in tears.  Pain is sometimes mid abdomen (pain is always on drain), or to one side or another.  We thought the cath may have traveled up higher out of the pelvis. After many calls to the PD nurse (who was supposed to be talking to the doc) and doing laxatives (because it's probably constipation after all), finally got an Xray. Well, that night we he connected and did the initial drain had intense pain in lower pelvis (rectum area) that put him in tears.  Everyone says that some pinching on drain is normal and ok, but he shouldn't have this much pain.  His doc says that it's probably scar tissue from previous surgery ..(ok he did have a small bowel resection in '01, but the surgeon who did his PD cath said there was minimal scar tissue)  He did not have this much pain on manual exchanges.  Has anyone had this problem?  Infection is not a possibility.  The d@#n thing alarms several times a night ( I am really considering sleeping on the couch- I am our only source of income and need to sleep!!!!! plus the lack of sleep makes for a cranky me) low drain.  He is finishing up his last quarter of college and says he will go back to do manuals after this quarter is over-it's just to hard to coordinate exchanges and class), but is there anything in the mean time anyone can suggest?

On top of all this he is tired all the time, goes to school for a couple hours a day and pretty much sleeps the rest of the time.  I am getting frustrated because I feel like I am raising 4 kids instead of 3.  I am going to end here cause I feel myself trying to take this in a different direction and I don't want to do that.

If anyone has any suggestions- please send our way!  Thanks

[willieandwinnie]

bwisern, sorry I can't help you with the PD question, but I am sure someone will be along soon to answer your questions. I just hope you get this figured out for both of your sakes. Here's a big  for you.

[paul.karen]

I haven't started PD yet.
But this pain seems MUCH worse then the regular paindrain i have heard so many speak of.

I have heard many people say when there drain is almost done they have to sit up to get the last bit out and stop the pain.

Best of luck to you both.
Please dont take it out on him.  he is even more upset then you are i would think.

Hoping you get this all sorted out fast.  It does sound stressful 
P&K

[peleroja]

You say he had no problems on manual exchanges, which I assume he is doing sitting up.  Perhaps he needs to be sitting up or at least semi-sitting up to make his drains go easier.  Wedge a few pillows behind his back before retiring and see if that helps.  I can't speak for the pain, as I have never had pain on PD, but perhaps you could lower the initial drain on the machine so it wouldn't keep alarming.  That's all I can come up with right now.  Be sure and let us know how he's doing.

[dh514]

I have only been on the cycler since October so I am by no means an expert, I am on the Baxter home choice and I have only had an alarm twice and both times it was where I had rolled over on the tube. I did have drain pain in the beginning but now I sleep thru the drains. I would call the PD nurse and make them understand the pain he is in.

[MandaMe1986]

I am sorry I can't help.  I can understand the stress though.  I just want to give you and your hubby a big hug. 

[bwisern]

After a month of misery on the cycler, he has decided to go back to twin bags.  It would have been nice if it worked out, but he could not tolerate the pain he was having.  His nephro and PD nurses just don't seem to understand and we can't make them.  His nephro told him he could "do hemo for 2 years then he will get a kidney".  2 problems with that statement- it is a 3-5 year average wait for cadaver kidney, and you can't get a kidney until you get referred,  and we haven't been referred yet.

anyway, pain seems to be alot better now with the twin bags.  But he has been really tired (more so than usual) and has had more swelling.  not sure if it is from the switching from cycler to twin bags, any thoughts on the swelling?

[BigSteve]

Your husband started manual PD the same month I started mine. I just had my second night on the cycler
and have only a small amount of discomfort after having a "low drain alarm" on the initial drain last night.
I sat up in bed to get the drain amount up to the minimum setting. I had to hit the down button several
time to get to bypass and then it went to first fill. I guess it doesn't matter now that he has gone back
to manual exchanges I guess. I don't know what "twin bags"means. Wasn't it possible that the setting
for minimum drain amount was too high?

[bwisern]

By twin bags I am referring to doing maunaul exchanges (with 2 bags, one drain and one fill). They adjusted his settings.  His biggest problem was the pain he experienced.  The first couple nights were good, but it went down hill after that.  We also think that he just wasn't pulling off the fluid on the cycler.  He is up almost 21 pounds in the last 4 weeks he has had the machine.  To him it wasn't worth it.  I hope you have a much better experience with the machine!  It does free up your life more. What caused your failure?  His is IgA Nephropathy, was diagnosed 12 years ago.  Hope you are adjusting ok, cause it is a big one!

[BigSteve]

How much UF was he pulling off at night? I assume that is the best indicator of how well the
machine is working. What percentage bags were you using? I am increasing the use of 2.5 bags
because I am still 2-3 pounds over my dry weight in the morning. I try not to use the 4.25 bags
because when I used them on my last manual exchange of the day I felt weak in the morning and
my bp was low. I realized after my last message what you meant by twin bags. I don't really know
what caused my CKD, probably high blood pressure. I had a nephrectomy in 2001 and the other
kidney gradually lost function until I went on hemo in December 2007.  I hated hemo and finally
got the unit to train me on manual and now the cycler. So far my experience with the machine
has been good. I have had some minor alarms, mainly low drain volume caused by sleeping on my
right side. So I just turn over. I am sorry your husband had so many problems since my days are
now free and I feel better. Best of luck, Steve

[heatherh]

I can understand your husbands pain. As I have been on cycler for 2 months and I get the same pain you speak of during at least 2 or 3 of the 4 drains. It is so bad I have to sit upright on the bed and even then the pinching continues. I was told it would get better but it has not. My dialysis nurse is going to try a setting called Tidal. I will give it a try but not sure it will be much better as sometimes the pain starts early on in the drain until I move around. It seems like I have to try and direct the fluid to the lower part of the peritoneal cavity. To explain it simply it is like when a women is 15 and starts her cycle. The only difference is there is nothing you can do to relieve the pain.
I have thought about going back to twin bag as I never had a problem on it. However it is the convenience. I don't know where i would find the time in a day.

[BigSteve]

My pains on the cycler, which have not been that bad, are when the fluid reenters my body on the fills. I might have
some pains on the drain if it goes on too long, but the real pain is on the beginning of the fill.

[mcmkids]

Hi! I a new to all of this as well with my husband. We recently had the same type of problem. I repoted this to our PD nurse and we tried a lot of things (changing settings, bags, etc...) finally after multiple nights with no sleep and a fruitless call to Baxter my husband had an abdominal x-ray which showed that his PD catheter is not in the right place, so that is why it was not able to drain properly. Maybe he needs further work up? At the very least, I would be on the phone calling in to the dialysis center to run these problems by us. I am assuming that you have a 24 hour number you can call. The bottom line is that he should not have to "live with" this. 

[BigSteve]

Again, I had a problem with draining after I had my catheter implanted. I could take fluid in but nothing would
drain. I had to go back into outpatient surgery for an adjustment of the catheter. Apparently it was too high.
I have had no problems since then, both with manual exchanges and now the cycler.

[bwisern]

Hi everyone, I appreciate all the suggestions, thought I would pop in and give an update......
After having an xray confirm that "the cath is a little high but still in good position"  having 500 tidal (which he absorbed the majority of) doing position changes and on and  on, and a month and half of sleepless nights and almost 20 pounds of wt gain in 3 1/2 weeks he has gone back to twin bags.  He has much less (well, almost NO) pain on exchanges, more fluid pulled off with exchanges, being able to sleep at night.  It is an "inconvienence" to fit in the exchanges but it beats not sleeping at night.  It would have been nice if it would have worked but it didn't for him.  The really sad thing is that we had 20 boxes of cycler bags that he wasn't going to use and Baxter wouldn't take back so he and the kids had some fun with a knife popping them in the back yard.  That was a good $20,000 waste.  Does anyone need extra cassettes for Baxter cycler?  We still have those left.  Not sure what to do with them, no one wants them.

Hope everyone is hanging in there, I am, even is some days it's by a thread, I am still hanging

[st789]

Come here to rant.

[theone]

sorry to hear that cycler didn't work for your husband.

You can give the extra cassette to the clinic as they should be usable.

When baxter delivered the wrong solution to me, I just took those solutions back to clinic and let them have it.

[rookiegirl]

I only tolerated the cycler for 4 nights.  Those were the longest, painful 4 nights of my life.  My problem was the pain at the end of the drain.  That darn "pump monsters" felt like it was sucking my inside.  I tried to sleep in between dwells which was 4 hours and the pain would wake me up.  I tried everything to reposition myself and still the pain was just awful.  Plus on top of that my blood pressure was severely low.  Come to find out, I was having to much dialysis.  So my Neph changed me to only doing 2 exchanges per day.  But he still wanted me to go on the cycler.  After pleading with him, he agreed to put me on manual changes.  It's been over a year now since I've been doing manual (7.5% in the morning and 2.5% in the evening).  The pain at the end of my drain is still there, but I close my transfer set to cut the flow right away and this is OK with my Neph.  For me, I hate the cycler.  I like the manual because I have better control.

I'm like you, I was stuck with boxes and boxes of supplies.  I tried to give it back to the dialysis clinic to use for training, but I was told they were not allowed to take them.  I guess they treat them just like prescription meds.  My husband had to cut all the solutions in the tub to drain.  I had to throw away all the cassettes and drain lines.  What a waste.

[KICKSTART]

Anyone using a cycler and getting alot of pain during drain times needs to put it in TIDAL mode 80% , problem sorted ..end of drain pain pretty much !

[theone]

Yes, I agree. TIDAL mode definitely help. I set mine at 85% and it works wonder