I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: jshabanian on November 07, 2011, 10:16:58 PM
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I started pd on the 25th of Oct. so am still very new to this. Since Friday I have been nauseated and have been throwing up most days. I have lost 10 pounds since the 25th. Partly due to fluid pulling and partly due to not eating very much and throwing up. I have been experiencing pain and pressure in my rectum for the past week or so and the vomiting ramped up over the weekend. My potassium was high. 7.1 so the dr. had me take a medication that causes you to excrete the potassium in your stool. I took that and went number two a couple of times. The next day my potassium was 4.9. The nurse felt it should be lower than due because I was vomiting, not eating much and had the meds.
I felt constipated and took stool softeners, and laxative and they didn't work. The dr. prescribed a laxative and it worked. In the two exchanges since I took the laxative, I have had slow fills and pain during the entire fill time. I finally had to lay on the floor to make the pain go away and to get the fluid to go in.
Does anyone have an idea of what is going on with me?
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So sorry to hear your troubles. I am still pre-D, so I don't have any experience with PD ....but lots of folks on this site do, so hopefully they will chime in ? Are you doing your PD in center ?? If so, be sure you're telling them EVERYTHING that's going on with you. Call your neph as well. And any one of them may very well advise you to head to the emergency room for further examination, testing and treatment. Not every modality works for every person, so that may need to be explored to. Again, I'm sorry to hear things are going badly, but hope you'll do everything necessary to get it taken care of. Get better soon.
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jshabanian, I am so sorry to hear about your problems. Are you doing manual fills, like 4 a day? Constipation is a big thing with PD you have to keep taking laxatives and stool softeners whether you need them or not. Have they tested to see if you have an infection or done a scan to see if your tube is set in the right position.? Being nauseous and in pain is not good. Do not put up with this, keep on to them until some thing is done.
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If you get dehydrated that can make you feel really sick. But I had a lot of stomach and rectal pain for many months after the PD cath insertion, especially when coughing or laughing. I still get some pain now after 6 months but it's hardly noticeable now.
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Thank you for your resppnses everyone! Yes I do 4 manual fills per day. I woke up this morning with even more upper right quadrant pain. I called the surgeon and they scheduled me to have a periteum-gram (?) tomorrow morning.
@Willis, the nurse said that many patients complain of rectum pain. I hope it goes away soon.
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I woke up this morning with even more upper right quadrant pain.
Are you a small person? Perhaps a smaller fill would help. When I first started the clinic had me on 2200ml fills at night and that was just too much. At 2000ml I feel pretty full but I can sleep now. During the day I carry a 1500ml fill and if I'm going to be doing anything a little strenuous I will sometimes drain some of that off. But strangely, I've tried going "dry" and then I get terrible cramps during my next fill so I always keep at least 500ml or so.
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I still get some pain from time to time when I do my exchanges (I do CAPD)
it feels like sometimes right in the middle of and exchange that I have to go number 2 in a super fast hurry.... and sometimes I even take off running connected, pole and all in bathroom and go b/c i can't wait!! :rofl;
with PD just like any other treatment option, it takes time for your body to get used to it......give your body time :2thumbsup;
I found a little trick to get better UF's and that is about once a week I run dry for about 6-8 hours straight once a week so I pick a day and I just don't fill and give my membrane and nice little break and that really seems to not only help with my overall UF, but it also helps with the cramps, bloats and overall crappy feeling that PD sometimes will make me have...... the trick with PD (hell with anything) is you have got to find what works, and what doesn't.
(I know I sound like a broken record) but if you get a minute go check out my other post a 'step by step PD experience.'
and remember dialysis works for you now, you don't work for dialysis
PD is AMAZING!!!!!
If I have to have kidney failure I will have CAPD as my treatment option :yahoo;
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I am a short person but overweight. I am using 2500 bags.
I have checked out your pd experience and it is sooooo helpful. I guess I have to get the part where I believe that PD works for me and not the other way around. I feel trapped by the scheduling of my exchanges.
tbarrett, Where do you sit when you do your exchanges? I have a room set up with a computer and a desk and chair but sometimes I feel so alone in here. A few times have hooked up in this room and then wheeled the pole and bags to the tv room and watched a movie with the family or even by myself. Do you think I am taking a risk doing this? A risk germ wise and safety wise?
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I am using 2500 bags.
I'd bet if you could get that down to 2000 a lot of your discomfort would go away. 2500 sounds like a lot!
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I am a short person but overweight. I am using 2500 bags.
I have checked out your pd experience and it is sooooo helpful. I guess I have to get the part where I believe that PD works for me and not the other way around. I feel trapped by the scheduling of my exchanges.
tbarrett, Where do you sit when you do your exchanges? I have a room set up with a computer and a desk and chair but sometimes I feel so alone in here. A few times have hooked up in this room and then wheeled the pole and bags to the tv room and watched a movie with the family or even by myself. Do you think I am taking a risk doing this? A risk germ wise and safety wise?
No,
the only time you really have to be super careful is that few seconds you are hooking and unhooking for the germs...... listen this is goin to take time, you have only been doing this for a few weeks.... give yourself time........
I do not feel trapped, or hindered by CAPD..... however my exchanges take 15-22 minutes start to finish and I use this time to get on the computer, cook, do the dishes, make lists, watch TV, text, talk on the phone, visit with my boyfriend, clean, read or just plain sit and enjoy the quiet and yes I do all of this while I am hooked up with my pole :2thumbsup;
so CAPD for me is taking up less than 2 hours a day of my life and I do not watch the clock for exchanges either..... I set my alarm and go about my life....... :bandance;
I do have to plan my days a lil bit better, but I live my life the way I want to ;D
Now, I switched from in-center hemo to CAPD and what a diff in the way I feel................. please give yourself sometime, try to relax with it, and I bet if you reduced how much you are filling by lets 500Ml you will see a HUGE improvement in how you feel......... remember you are the boss now :2thumbsup;
take some of my advice here.......... use your PD time for you.......... use it as your time to do you!!!!!
that's what I do..... and yes I do like to clean and cook :angel;
keep me posted please and don't give up on CAPD yet....... in the at first I felt consumed by it and very overwhelmed, but now I LOVE IT!!!!!!!
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@tbarrett, I am amazed and awed that you are able to do so much while hooked up!!! Aren't you afraid you are going to knock the pole over and pull the catheter out? I have just been sitting in a small room by myself most of the time. you are so inspiring to me. Thank you for your help with my adjustment period and for being so encouraging. I am going to try to ease up on myself and relax. Can you really use less solution then they tell you to?? How can you be sure you get adequate dialysis?
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@tbarrett, I am amazed and awed that you are able to do so much while hooked up!!! Aren't you afraid you are going to knock the pole over and pull the catheter out? I have just been sitting in a small room by myself most of the time. you are so inspiring to me. Thank you for your help with my adjustment period and for being so encouraging. I am going to try to ease up on myself and relax. Can you really use less solution then they tell you to?? How can you be sure you get adequate dialysis?
firstly,
I have hardwood floors so I can easily roll my pole (haha :bandance; :rofl;) and why on earth would you sit by yourself in a small room??? you are on dialysis not dead hunny!!! The only time you really need to be by urself is when you are hooking or unhooking and then you dont even need to do that, make the people in the room wear masks!!! :urcrazy;
secondly,
I am not afarid that I wont knock my pole over and rip my cath out because really how much danger do you really think I am in by standing cooking, cleaning, doing the dishes etc..... I am not runing marathons here ;D
I URGE you to do the same thing....... start with a simple task tomo morning while you are filling go wash the dishes!!!! ;D
just whatever you do, you better make sure that before you even think about touching that transfer set you wash your hands!! :2thumbsup;
Also, when I get sharp pains when filling/drainig in my bottom :angel; I turn my transfer set down just a little...... try it, this turns the speed down.......
Next few exchanches get out out of that room!!!
as far as not filling as much, yes you can!!!! you are the boss here!!!!
try just for a few days to fill with 2000ml (you said you will fill 2500ml right?) so fill will 2000ml instead just be sure to record thats going and out!! and be sure to inform the nurse that you are doing so in hopes that this will help with some of the pain you are haivng.
you want to know if you are getting adequete dialysis well the only real way to tell is by your montly labs, but if your total UF is good then thats USUALLY a good start!!
Let me know if this is any help and I want to know how you make out on your CAPD journey around the house tomo!!!
oh yea FYI: I do my treatments EVERYWHERE!!! not just home..... I take them on the go to.... I got places to go, people to see...... dialysis is not going to slow me down and it sure is not going to keep you in a room all by yourself...... silly :urcrazy;
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:cheer:
I will do just that, try to cook or clean or something when I am hooked up! Will let you know how it goes. Right now I decided to just reak IHD, FB and have some hot tea while hooked up.
Now for another question for you: If you fill with 2000 how much drains out eat time? I have been filling with 2500 and draining on average about 3000, and sometimes as much as 3500. I guess I am not sure what the goal is here. Am I supposed to drain out more than I took in? The more the better? I am using all greens right now because I have not have my PET test done yet. I think I am dehydrated.....my eyes are so dry all the time and I usually have a headache. Maybe I need to drink more.
When I was on hemo I gained so much weight in between treatments that I started hardly drinking anything at all. Just enough to wet my mouth. Maybe not drinking enough is contributing to my constipation issues? What are your thoughts?
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I also do a fair amount of wandering when hooked up for a manual exchange. It seems to help get things moving and I do a better drain that way. When I'm on the cycler, I do get up and move around for the final, manual, drain in the morning, but I'm limited to the 20 feet I have on my lines. Do get up and move around, it's great!
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if u feel like ur getting dehydrated u might be, try using a yellow bag... the green bags are just the average person... i use green bags, but yeah pd lets u drink more, i have never been on fluid restrictions, and i maintain my weight, but drink plenty of fluids and try using a yellow bag and see how u feel, and talk with ur nurse let them know what going on, how ur feeling and such. :)
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:cheer:
I will do just that, try to cook or clean or something when I am hooked up! Will let you know how it goes. Right now I decided to just reak IHD, FB and have some hot tea while hooked up.
Now for another question for you: If you fill with 2000 how much drains out eat time? I have been filling with 2500 and draining on average about 3000, and sometimes as much as 3500. I guess I am not sure what the goal is here. Am I supposed to drain out more than I took in? The more the better? I am using all greens right now because I have not have my PET test done yet. I think I am dehydrated.....my eyes are so dry all the time and I usually have a headache. Maybe I need to drink more.
When I was on hemo I gained so much weight in between treatments that I started hardly drinking anything at all. Just enough to wet my mouth. Maybe not drinking enough is contributing to my constipation issues? What are your thoughts?
OK,
With greens I can get anywhere from 2300ml-3000ml off with each excahnge with yellows I average about 2200ml. (each exchange is different)
I drink whatever I want when I want but I still make urine so that makes a differnce.
Yes the object is to get more off than you put it. (the more you get the better) I like to see my total UF for the day over 1000ml. when this happens then I know it was a super good day :2thumbsup;
you have got to remember if you are still making urine, and are doing CAPD, you are getting a dialysis treatment ALL the time so you can drink a little bit more than when you were on Hemo so feel free to do so :yahoo;
did this help any??
and keep me posted with my nosy rosy self :rofl;
did you try filling with 2000ml and see if you feel a diff??
Oh right in the beg. with I started PD I had to fill with 1500ml fills for a little while b/c I was having all kinds of trouble, but I was able to go back up to 2000ml. so maybe even try the 2000ml just for a little bit??
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I usually put in 2500 and take off 2900-3700 so I guess I am doing pretty good! I am trying 2000 now to see how I feel with it. I just started it today with my PET test so I will have a better idea how it feels tomorrow.
I am feeling MUCH better today and have not thrown up for 3 days now. Seem to have the BM thing under control too! Just like you said...it would take a little time for things to settle down, and they did. Thanks for the calming words.
I do cycler training on Friday and bring the machine home then too. I am excited to see how that works for me.
I will let you know how it goes.
Thanks
Janet
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I usually put in 2500 and take off 2900-3700 so I guess I am doing pretty good! I am trying 2000 now to see how I feel with it. I just started it today with my PET test so I will have a better idea how it feels tomorrow.
I am feeling MUCH better today and have not thrown up for 3 days now. Seem to have the BM thing under control too! Just like you said...it would take a little time for things to settle down, and they did. Thanks for the calming words.
I do cycler training on Friday and bring the machine home then too. I am excited to see how that works for me.
I will let you know how it goes.
Thanks
Janet
The cycler may just be what you need :2thumbsup;
this will free up your days and allow you even more freedom!!!!
that might be the answer to all the problems there!!!!
keep me posted!!!!!!!
and you are very much welcome
anything I can do to help out a fellow dialysis patient makes me happy!! :yahoo; :bandance;