I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: jbrock on June 01, 2011, 08:00:06 PM
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Hi everyone....Its been awhile since I posted but I have been having my fistula placement in my are done,,,,Not 6 weeks ago I had ny PD Catheter placed, That went great,
I have the manuals down. Only problem we ran into and I am so hoping some here can help me with their experience with this.
Yesterday the clinic wanted to do a run through on me with the cycler in center to see how I did. Well long story short, When it came time to drain on the cycler something grabed by inerds on my backside and I about fainted the pain was so bad, I would go thru childbirth again than ever feel that kind of pain. They of course stopped the cycler and said they wondered if my catheter was hitting my rectus muscle when it was trying to pump/drain me? When I do manuals its not nearly as painful with the cycler.
Anyone have problems in the beginning with their catheter hitting something towards your back side? If so....did it eventually go away If this keeps happening they said the surgeon might have to manipulate the end of the cath away from my behind...lol
Please, Please any one have words of encouragement or tell me what your story was/is.
Thanks!!
Joy
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Hi Joy! Wow, I am really sorry to hear this, gah! I am pretty new at this, only 2 months on PD, and I am hoping for a transplant in about 2 months, so sort of a short timer. But I have had my issues. I too think that my catheter was placed way too low, both for my exit site, so that I can't wear any pants like I used to, but also pretty low and resting on my bladder. When I am empty, it's like a screw driver pressing on the bladder, yeah, not pleasant at all. And I do get a pinching feeling at drain time, but not THAT bad as you are explaining. What cycler machine are you using? I am using the Liberty cycler. Could they slow down the rate of drain, so it goes a bit slower? Were you at all constipated?
I hope others will have some advice because they have more experience. Blessings to you in this, hang in there, ask a lot of questions....
Heather
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I am not very experienced either, only had 10 months with the Baxter cycle. To start with, I had drain pain with the manual bags and the D nurses assured me it would go away. Sorry, but it never did, even with the cycler. It wasn't bad most of the time but occasionally I would kink the hose to stop the drain and the pain. Often, maybe twice a night, I would have to get out of bed an do a little dance to ease it, and if I slept through a drain, I was mightily pleased. Wish I could say it went away. Good luck with solving/easing the problem. Hope it doesn't mean more surgery.
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The only time I have drain pain is the initial drain. You should ask the nurse to program your cycler for tidal so it doesn't try to empty you all the way. Maybe that would help.
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Hi ihad the same prob. I asked the nurse to program it in Tidal mode. This helped a lot. The good news is that eventually the pains go away.
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My PD nurse said to close the valve slightly on the transfer set and that did help the drain pain. That will cause the fill/drain cycles to be a bit longer due to the reduced flow. On manual drains I wait until I feel the first twinge of pain then close the valve just a bit until the pain goes away. That usually works for me!
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Yep. my dialysis nurse told me just today that about a third of us get drain pain. Some time it's pretty bad. It's worse on the final drain and I'm on Tidal. I get on the floor on my knees and bend over, that helps. I wish I could adjust the siphon strength down a little on the cycler. I think that would help. On the manual, pinching the valve on your catheter just a bit helps as above.
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Sorry your having so much trouble. I'm on PD over a year now and on occasion I have some pain but most nights I sleep through the whole night now. Are you going to the bathroom (bowel's) regularly being constipated causes a lot of problems with PD, if so ask your PD nurse what stool softener to use. Good Luck
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I am having the same problem. I use the Liberty model, and I just started CCPD last night, but I've always had sensitvity even when doing manuals. I have to bypass the first initial drain, and when I am "empty" I feel the catheter hit every nerve in my lower abdomen. :( My nurse suggested adding 500 ml manually before I start the initial drain at night. When I get the pain I bring my legs up and breathe in and out slowly, it helps immensely. (Almost like when you are in labor). Hope this helps?
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I've only been on PD (Baxter HomeChoicePro) for a month now and still get the drain pain, though it has decreased some. It's worst for me on the initial drain for some reason. What I do may not be for everyone, but I stand up and do exercises. I start with "toe lifts" where I just raise myself on my toes. And then I do squat thrusts--spread feet wide and squat like you are in a sitting position with hands at your waist then rise to standing position with felt still spread apart. And if I'm still not drained yet, I do an exercise where I stand on one leg and raise and lower the other leg, then switch to the other. I do 50 reps of each of these...using 3lb, 5lb, or 10lb handweights makes the exercise even more effective. These take my mind off the pain and also seem to help get a higher drain value.
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Willis, I would love to see you doing all this. Sounds better than going to the gym. Glad it helps the drain. Thanks for the chuckle.
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Willis, I would love to see you doing all this. Sounds better than going to the gym. Glad it helps the drain. Thanks for the chuckle.
:rofl;
Well, it's easy to do while standing right next to the bed. It beats just sitting/standing there suffering drain pain! But if it matters, my wife wonders what the hell I'm doing too... :P
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Very slowly, I'm having less discomfort. I'm using higher concentrations which increases the amount of fluid left in your abdomen, I'm also on Tidal, so usually only the final drain is bad. I sit up and forward with my knees together. This helps for the last 100 or so CC's of drain. Also, I've notice less pain sleeping on my belly instead of my back when it drains. I too might have to have the surgeon adjust the position of the catheter. I hope not.
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Jbrock, sorry about the pain. I had the same thing for the first three months of Baxter PD. Then my nurse switched it to tidal. It still sucked and hurt. But after about 6 months the pain went away. I'm assuming scar tissue has formed sufficinetly to stop the pain. So, hang in there. It will get better.
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.. also don't forget that the position of you cycler will influence the suction. If its up very high above your bed it has to work harder to drain you so the pain near end will be worse. So get a bed up high and the cycler down low and the machine will adjust accordingly. :ess suction less pain! works great for me, simple physics.
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.. also don't forget that the position of you cycler will influence the suction. If its up very high above your bed it has to work harder to drain you so the pain near end will be worse. So get a bed up high and the cycler down low and the machine will adjust accordingly. :ess suction less pain! works great for me, simple physics.
Good thought! Last night I picked up the 15ft or so of coiled excess of the patient line off the floor and hung it on the front of the cycler (Baxter). I believe it did make a small difference. If nothing else the drain cycle seemed shorter.
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Willis, You crack me up.
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Hello,
Been on PD since April and got my cycler yesterday. I have had the occasional drain pain but my bog problem has been with the fills, causing me some major cramping. Last night, my first with the cycler (Liberty), i thought my guts were getting sucked out on the drains but fortunately i figured out that if i laid on my side, i had very little discomfort with the fills. I switched it to Tidal today so hopefully it works better tonight.
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There you go, you are getting the hang of it. Just do what works for you.
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and after reading this, I think I will continue to do my manuals...... and they friggin suck as it is....
the drain pain is TERRIBLE!!! thank god its only at the very last drip and I clamp off really fast which solves the problem :2thumbsup;
the fills are even worst if I remain sitting so I have been standing and that helps
but I am almost certain I will stick with manuals after reading this YIKES!
;D
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Tbarrett2533 is right. I'm due to start training for the cycler later this month but I have had pain doing manuals on both drain and fill. Makes me wonder if I'm going in the right direction. I'm a little old for "jumping jacks" like Willis.
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Start with "tidal" mode on the cycler. The drain pains will be more manageable. The good news is that in my case it took about 6 months and the drain pains went away.
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@ Sailboatjeff- Are getting sharp stabbing pains? Or cramping? If it's just cramping, you may not have the bag warm enough. If the solution is too cold you can get horrible cramping. :twocents; I used to heat my bags up for about two hours because I was so sensitive to begin with. Maybe it will help? Good luck
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I am on the Baxter and I only feel a little pain or pull at the very end. It was worked grate for me. hope you can get it fixed and not go to surgery again.
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My experience with that is they kept telling me it would eventually go away........uhm, sadly it took almost 2 1/2 years.
I hope you get relief sooner than that.
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Update:....I started using the New Baxter Home Choice Pro cycler last night and it went wonderful. :2thumbsup;
I will not try the Fresenuis cycler again after my first experience but the Baxter was a piece of cake. I actually slept through the night as well...not sound (nerves) but well. I am so excited!!!
It feels wonderful to not have the fluid on me from manuals all day and I don't have to stop whatever I'm doing to do 4 exchanges a day. :yahoo;
I'm only on the cycler for 8 hours as well. I have not adjusted to climbing into bed at 9pm on the week nights yet (so I can be done by 5am) I work full time. I am sure I can adjust with so many other positives in return.
Thank you to ALL that responded, I am so grateful for this site!!!!!!!!!!!!!!!!!!!!!
Joy ~ JBrock :grouphug;
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Glad to hear it's working out for u. Baxter machine is a piece of cake.
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you will be fine on the Baxter's. Have you had any alarms yet? They make you jump, keep the manual close by.
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Billybags - No alarms yet. :yahoo; I am sure when it happens it will skeeeer me to death :rofl;
Last night was my 2nd night and it went so good! My total UF was great...at least I think. My D nurse said that it was great. My Total UF - 811ml
I have had a lot of problems with fluid in my legs with manuals and 4 hour dwell times. I absorb so now (at least so far) the thinking is the cycler might work better for me.
I LOVE the Baxter HomeChoice Pro for several reasons.
Atooraya - you're right....It is a piece of cake :2thumbsup;
So excited!!
Joy ~ JBrock
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I;m really happy with the performance of my Baxter machine. I do have alarms occasionally, But have all been self responding alarms. All I have had to do is get up and move around. They are typically because I have rolled over on my line and kinked it. Getting up and straightening it out gets things moving again.
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Joe - I sure hope if I get an alarm that it wont be anything more than a kink or rollover on my line. Likely will jump my heart into over drive :rofl;
How long have you been on the cycler?
Thanks for the response.
Joy
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Joy, I've been on the cycler just over a month now. 9 hours at night with an additional 2L in 4 hours before bedtime. I'm fervently hoping I can do away with the 2L afternoon fill when I do my testing this coming week. While it's not too tedious, it does put a bit of a crimp in my afternoon to have to get where I can fill by around 4PM.
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Joe - So your a newbie like me...lol to the cycler anyways :bump;
I sure hope when I do my adequacy test next month it comes out good so I don't have to add a manual during the day or go on for longer than my 8 hours that I do currently. I begged for 8 hours...they initially had me set for 9 hours.
I sure hope your test goes in a positive direction and you can drop the extra 2L. Let me know once you find out. Good Luck :2thumbsup;
Joy