I'm hoping someone can help me. I just finished my PD training on Friday and had my first session of PD at home. It's all going well EXCEPT for the Drain Pain. Everyone that I talk to tells me it will lessen as time goes on. I had my Nurse set my cycler to Tidal too. I have four drains during a treatment and it is normally the first and last one that hurts. I really don't know what to do to alleviate the pain. I don't want to clamp my line because it's just delaying the inevitable. I don't want to bypass the drain because I want to get as many UF's as possible. My goal is to eventually sleep through the whole thing and maybe only wake up once a night instead of waking up before every single drain!! So, I'm posting this in hopes that someone out there is experiencing the same thing and you have any words of wisdom because I am willing to try anything!!!
Thanks for listening!!
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Nikki41775
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Do not be afraid of heamo, if you have the option to home heamo you will get the training from your local hospital if you are in the Uk and then support from your named renal nurse at home when you need it.
The time may come when you can no longer do PD of any type, max time around 8 years, let’s hope you may have a transplant before then.
That is not true my friend being doing PD for 20 but the older you get you want be able to do once you up to age. Like 80 but no matter how old you are... if you still move around drive a car 🚗 you can do pd
A lot of times drain pain is a sign that your catheter may be out of position. It moves within your abdominal cavity and can get 'stuck" in the wrong position. This is usually caused by costipation, so I hope that you're going regularly! PD will definitely affect your bowel habits, so keeping a log could help. Fluid can also get stuck in pockets in the cavity, so if you experience drain pain often, try to see if it starts after a certain amount has drained so you can prepare for it. Hit STOP and stand up and wiggle your body a little to wring any fluid loose and try to keep draining afterwards. I do this regularly and it helps!
I personally have had drain pain since the beginning, so it can be rough. I'm at a point where it's just the initial and last drains that are painful for me, and usually I can anticipate it and plan accordingly. It's definitely something to get used to to some degree, but it's important to keep a record of everything: bowel habits, patterns of when the drain pain starts, how often, etc. So that if something seems amiss, you can contact your nurse sooner rather than later and have details to back things up.
I hope this helps! You are in a transition period, so give your body some time to adjust and get used to this new thing. I wouldn't be concerned for the next few weeks or a month or so out, since the transition period can last up to 8-12 weeks, but tracking everything will be crucial to seeing what your normal is and to minimize this painful experience. Good luck!
Thanks!! Regarding the bowel habits, it’s honestly something I struggle with but they gave me fiber packets to take so that seems to help me
I’m hoping my catheter isn’t out of place. I’m assuming if it is, it would require surgical intervention to adjust it?
The pain normally hits right toward the very end of the drain where I have anywhere from 300 ml or less to drain so I normally just lay there grabbing my sheets bracing for the pain. I’m going to try doing what you said tonight to see if that helps
Actually, as long as your catheter isn't wrapped up in something it can be left alone! Your catheter is meant to move side to side as needed, and sometimes if you have constipation it can be stuck in one of these side positions instead of straight down. Keeping a good bowel regiment will help keep it in position and wiggling will help also!
I’ve had quite a bit of drain pain. Yes tidal helps some, but not completely, what is your machine settings??. And don’t worry about hitting that bypass. The few UF’s that’s left once the pain kicks in, isn’t going to be enough to amount to a hill of beans. Personally, I bypass it quite often especially on the last drain. But then again I still void quite often, my kidneys just no longer clean out the junk. Also kinking the line or shutting your connection “off” will only make it “suck” harder and cause “check patient line” alarms. I’m assuming you don’t carry fluid during the day, that you are dry??? I am also, but you won’t notice having just a tiny bit of fluid on you during the day. For me I find that if there is one UF for it to pull on your initial drain, then it’s easier on the body. Also what is your setting for initial drain, mine is at zero. My machine runs 8.5 hours per night, I generally sleep about 7, so I’m usually awake when it goes into the last drain. It rarely wakes me as when I’m laying down it doesn’t get all the fluid out, only if I’m in the sitting position. And if I do sleep through it, I know I have extra fluid when I get up, so will do a manual drain.....of course once it starts pulling, I stop and bypass it. Then I know I’m empty. Personally I will never do hemo again. It just takes too much out of me.
I carry a little bit of fluid during the day. They have me set up to carry 50 ml so I’m not completely dry. It’s normally that first drain of the 50 and the final drain that hurt me. I’m set up for tidal. I fill up with 2600 ml and only drain 2400 with every other drain so it’s away leaving extra. That’s another reason I try to let the last drain get as much as possible but OMG the pain!!
My machine is set to run 7 hours a night. I normally wake up before each drain. I took a melatonin last night to help me sleep and that seemed to help a little.
I’m hoping that since I am still so new that it will get better but who knows. I have a follow up at the clinic on Thursday so I will let them know what’s going on and see what they say
I’m ok. I didn’t do my treatment last night. My catheter is acting up and I had to have an abdominal X-ray last night to see if it moved. So I got to get a break. I’ll hopefully find out today...
My cycler kept saying patient line blocked so I went to my dialysis clinic and they tried draining me there and I was having the same problem. They sent me for an abdominal X-ray and that showed the catheter moved. They had to surgically correct it and I’ve been ok since
join natural kidney journey on facebook...i have been able to raise my gfr from 26 to 41 in less than a month...that was my situation it is different for everyone...this fb group is dedicated to changing your diet...supporting your goals and so much more...it is admin by a couple where the wife was able to get her husband off of dialysis...she raised his gfr from 3 to 39-41...he has been off dialysises for over 14 months...there is another person on site that achieved that same thing...plus numerous others who have raised their gfr significantly by diet and determination... here is the link... tps://facebook.com/groups/natural... answer the 3 questions when you click on the site to join or you will automatically be deleted...
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