I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: goofynina on May 24, 2006, 06:49:15 AM
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Hey Everyone, Well, i started my PD today, man, its tougher than i thought, before my exchange last night i was feeling very bloated as if i had drank a gallon of water (which i didnt) my output is still 2,000 - 2,200, doesnt seem like i am taking enough water off, i used a 4.5 right now to hopefully take this feeling away. and right after i finished, filling up, my stomach hurts, just more of a soreness. Will somebody, anybody please give their stories of when they first started PD, I would love to hear them and if you have any suggestions or advice, i would love that also. Thank you
Goofynina
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Hi there, Ive only been on pd for two months, when i started i was also sore and swollen, the nurses who taught me explained that the peritoneum stretches at first as its not used to holding fluid.
it wore off after a few days for me, and now my tummy looks pregnant straight after I have drained in.
as for your drain, what size bags are you putting in, a normal drain for me is 250 and 450-500 extra on a green bag, because I still pee well, my fluid restriction is 2 ltrs a day, compared to hemo where I was aloud only 500 mls and had stopped peeing entirely.
for me it has become routine pretty quick allthough as I am a high transporter I am going to change from manual exchanges to night cycler machine. hope this is of help ;)
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Thanks for your reply Heph, it made me feel a little more at ease BUT, i discovered i have to go in and get antibiotics ALREADY!!! my first day and i already contaminated myself, man-o-man, with the green bags only a couple have came out 100 - 200 over what i put in, i used a red bag this morning cuz i was just feeling overloaded (plus b/p was up) and i got out 2500. I no longer urinate so anything i drink stays with me, ugh, What is a transporter if you dont mind me asking? They said they will test me after so long of doing PD to see if i qualify? what does it take to qualify? Boy, did i come into this with my eyes wide shut or what, lol, Look forward to hearing from you again, or anyone who may have advice or suggestions... thank you
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Hi,
Heph asked me to write and explain high transporter, so.....
If you are a high transporter it means that when the toxins are drawn from your body into the dialysate, the smaller particles like urea are quite quickly reabsorbed into your body leaving you under dialysed. People who are high transporters dialyse better on a night cycler as the fluid doesn't dwell in the peritoneum for as long.
Hope this helps.
H-L-L :)
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Awww, that was sweet of him to ask you to do that, and it was sweeter of you to take the time to do it. Thank you, now it just makes me wonder if i can be one or not, a transporter that is, is that when they do the testing for it? How long does Heph run each night? I know they said over a period of time they were going to test me for the cycler, i guess thats the same thing, but i wasnt sure if that was a good thing or a bad thing, Does Heph feel better on it? With this PD, i feel kinda bloated, but not too bad, i've noticed the amounts taken off of each exchange are getting better and better, hopefully it continues to keep coming off (the excess fluid that is) Sorry for all the questions, although i've been on dialysis for 3 years it seems like i learn something new everyday, now with this PD, feels like i am starting from scratch. Thank you for all the info and i hope to hear from you again soon,
Susie (goofynina)
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I've hasn't moved to the cycler yet, we have to wait for the unit to arrange training and stuff first, for now they have put him on 5 manual exchanges per day, to see if that helps. Obviously, none of them have tried fitting 5 exchanges into one day because it sucks. It feels like you spend the whole of your day exchanging or waiting for the next one. There isn't much time between each one. Bring on the machine.
i've noticed the amounts taken off of each exchange are getting better and better, hopefully it continues to keep coming off (the excess fluid that is)
After Heph first started the drains weren't too good, but our dietitian told us that if you keep your protein intake nice and high you drain better, and it really works. We really struggled with all the protein and hephs was really low, but now we have got it high, he drains really well. As soon as his protein intake goes down the drain slows too. (The only good advice we ever got from a renal dietitian! >:D)
H-L-L[/color]
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That is good to know, i haven't been told that yet, hmmm, i wonder if i will be told that at all?? Can you please tell me what your husband did to get his protein up? i know egg whites and chicken but after awhile that seems like it would get boring, I hope you get the training soon and your husband starts on the cycler so you guys can free up your days and get out there and enjoy life... Thanks so much for replying, any info you can give me is greatly appreciated.
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There are some good high protein foods around, my dietician just told me to make sure I eat carbs and protein together, as the protein cant be used by the body without carbs, eg meat must go with potatoes, rice, pasta, or bread. Tofu is quite high protein allthough I cant stomach it all the time, bean salads or beans in general, pinto beans and the like. chicken most meat, beef is especially high and fish is good, but the difference for me was making sure I mixed carbs with protein.. Cheese is good protein but High phosphate(americans have a diferent name for phosphate)
I was told to have a good breakfast eg, eggs bacon sausage, obviously no mushrooms or tomatoes as they are high pottassium
Apparently pd draws a lot of protein out of you, I got to the point where I was bairly draining out the 2000 but now I make sure I get at least two good protein and carb fixes its allways a minimum of 2250.
You can holiday well with pd, I have dialysed on top of the white cliffs of dover, at the sea side, in the back of the car. we made our own travel kit, with doubles of everything we need, and bought a cool bag, we can fit two bags in with two hot water bottles and a towel, the bags stay warm for about 8 hrs.
anyway blessings. the machine should be good I hope :-[ ;D
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hello...i am on a cycler do 4 exchanges a night for a total of 9 hours on the machine per night..plus i also do 2 manual exchanges during the day...its not to bad but takes up alot of my time....i have just been accepted into a new clinic in toronto where i am going to be trained for nocturnal hemo.....i will hook up 3 night a week for 8 hours per night....the reason i am doing this is because i have maxed out for pd exhanges.....i hope your doctor or nurses explained to u that this could eventually happen.....if u have any questions about the cycler feel free to ask i have been on it for almost 3 years
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Hi there thanks for letting me know, at the moment my clearance is only a tiny bit less than it should be so the dr reckons Ill be good on the cycler for a few years, we have a really good baxter training center in england, its like a hotel where you go and stay for a week while they train you, thats where I was trained for pd, its like a government paid holiday for a week all meals included ;D
Ill probably be in touch once I change over, and I find the advise from people on this forum priceless 8).
Blessings 8)
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i don't mean to scare u but i was the same way.....was cruising along fine with creatine staying around 400 and then bang jumps up to almost 800...was warned very early by the neph that this could happen on pd....pd works for only so long but hey it was great while it lasted......hoping nocturnal hemo makes me feel better......as for transporter i am a high transporter which means 2 hours per dwell on the machine is good for any longer than that my body starts to absorb the solution...i am also a diabetic which makes it hard have to use insulin in the bags maked it difficult sometimes to regulate my sugar level
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For the first week or so you will feel very bloated and uncomfortable. This is normal. Once you get used to it you will probly find you feel more comfortable with the fluid in, rather than when you are empty! Doing a stronger bag wont change things as far as comfort goes. You should only do the strongest bad depending on your blood pressure and weight. We were advised only to do the strongest bag on advise of our PD nurse. The more fluid you drink the more uncomfortable you will feel at first, as there will be more fluid being drawn into your peritoneal cavity, on top of the dialysis solution.
You may think PD isnt very nice, but give it a chance. It is alot less complicated than hemo. If you are doing well on PD then stay on it! However it doesnt work for everyone. I was on it for 18 months, and in that time it never really worked well for me. I was supposed to be doing 6 bags per day, which was rediculous trying to fit the 4 hour dwell in. I went on a cycler eventually, which gives you alot more freedom. Good luck with it.
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HI Amber, I am still in my first week of PD and today i started to notice my legs are swelling, not good i know, i talked to the PD nurse, she told me to use a 4.25% and it took off about 2500. I too have to get up every 4 hours, just starting today, she says she is going to find a solution to this but in the mean time, it seems like the swelling wont go away, Did this ever happen to you? I dont think the cycler would work for me cuz i am a night owl, go to bed extremely late and i get up at 5am, i am not sure if i could do the 9 hour thing, but i guess if i have to i have to, it's just not going to be easy, (for me that is) You said that while you were on it (PD) it didnt work well for you, can you please explain, i mean was it the lab results or your drain amount? I am sorry, these are pretty dumb questions i am sure, but i am still learning about this whole PD thing and i dont want to think that i made the wrong choice. I Love it though, i just dont know if its the right thing for me, BUT I AM GOING TO MAKE IT THE RIGHT THING HUH??? lol,,, you better believe it my friend... hope to hear from you or anyone soon, much love to this website......
HI, it's me (again) lol, can you tell me if you ever experienced pains in your sides after you fill? I dont know if it is air or what it is, it really doesnt go away, the pain will lighten up a bit but i can feel it when i move. Aye yi yi, what to do? what to do? lol
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Hello all;
I have been reading all the posts on this thread, and you have shared a lot of information. My daughter Sandra started pd 1.5 weeks ago. She does 4 exchanges per day, and she is also surprised that her first drain of the day is small. She fills up with "extroneal" for her overnight dwell.
Sandra will be going on the cycler in 4 weeks. She is also a night owl, and was worried about being stuck to a machine for 9-10 solid hrs. But the pd nurse told her that she can disconnect from the machine between dwells. The infection risk would not be any worse, as she is already exchanging 4 times per day. She has had really bad stomach pains, starting after surgery. The pain is getting better, but it still comes, and goes. We are worried that pd won't work for her in the long run, as we have heard that you can't be on it indefinitely. The alternative is hemo, and she is terrified of needles. My heart goes out to all of you brave people on this board. And, I thank Epoman from the bottom of my heart for creating this forum.
Hugs, Ulrika
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Hi Ulrika, I have noticed my pains have gone away since i have been watching the air bubbles more better. once one of them little suckers get inside, it causes so much discomfort, made me double over, so i started really watching the lines, i would always move the drain bag to see if it was completed, i would pick it up by the line and i would notice little bubbles coming up, OHHHHH, so thats how they are getting in, lol, sometimes they even get in through my fill bag even though i flushed it, so try and really look for them damn little suckers, it has made a difference with me, good luck.
Thanks for the info on the cycler also, it's good to know that there might be a chance that i can unhook if needed, i am going to go talk to my PD nurses tomorrow and these are all good questions i can ask her. Hope all is well with you and your daughter, how old is she? Tell her i said "HI" and i hope to get to know her through this lovely website.....Hope to hear from you soon...
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And, I thank Epoman from the bottom of my heart for creating this forum.
and i hope to get to know her through this lovely website
Oh stop, you two are making me blush. :)
So stop.
Wait nevermind don't stop. :P ;) ;D
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Oh Epoman, you know you deserve MAAAAD PROPS for this, i hope there are times you sit back and say "LOOK WHAT I'VE CREATED" ;) I tell ya what, for being in the position that you are in, you are one intelligent individual fo sho.......(sorry, meant to spell it that way) ::) Please keep up the good work....
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Oh Epoman, you know you deserve MAAAAD PROPS for this, i hope there are times you sit back and say "LOOK WHAT I'VE CREATED" ;) I tell ya what, for being in the position that you are in, you are one intelligent individual fo sho.......(sorry, meant to spell it that way) ::) Please keep up the good work....
Sometimes I do, and I see how fast this site is growing, and it scares me. :o but fo sho (indeed ;) ) I am very proud of this site, this site feels a "need" I have been missing for a long time. (uh oh, better not let aMbEr_79 hear that ;D too positive ) But you know what I love the most? The fact that I got ALOT of grief from people about this site telling me with a name like that, it will never work. ::) Well I guess WE are proving them wrong. >:D
Sorry if I Hi-jacked the threads original topic. :-[ ;)
- Epoman
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Hello All~ The way I solved my problem of being a night owl and using the cycler is to have the cassettes that are approximately 18 feet long. I moved my computer into the room across the hall from my bedroom and connect around 10. That way I can go to bed whenever I wish. If I do need to go farther that the hose will let me, say the kitchen or livingroom, I just cap off with a FlexiCap on the hose and mini-cap on my catheter for the hour and 43 minutes of dwell and do what ever I please until it is time to reconnect. Hope you are able to arrange things so you can still have your night life too. This has really worked out well for me because I too was concerned about being confined to bed for the 9 hours. ( I don't know whether it is age catching up with me or the disease, but honestly some nights I welcome being in bed for 9 hours! :( ;D) Best of luck, Dee
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Hello All~ The way I solved my problem of being a night owl and using the cycler is to have the cassettes that are approximately 18 feet long. I moved my computer into the room across the hall from my bedroom and connect around 10. That way I can go to bed whenever I wish. If I do need to go farther that the hose will let me, say the kitchen or livingroom, I just cap off with a FlexiCap on the hose and mini-cap on my catheter for the hour and 43 minutes of dwell and do what ever I please until it is time to reconnect. Hope you are able to arrange things so you can still have your night life too. This has really worked out well for me because I too was concerned about being confined to bed for the 9 hours. ( I don't know whether it is age catching up with me or the disease, but honestly some nights I welcome being in bed for 9 hours! :( ;D) Best of luck, Dee
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I do dialysis with a lady who was on PD for 12 years. She is now on hemo and been on dialysis for 18 years. I was only on it for about 8 months as my creatine went up to 1400. I felt bloody awful and was so happy to get onto hemo. It can be very convenient and it is easier to go away. Just one thing I found every month, my bag would go bloody. This was due to me getting my monthlys.(period). So every month I would go into the emergency and make sure I didn't have an infection or something and every time it was because of that thing we are blessed with every month >:D Just don't panic if you see blood... Liz :)
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They did warn my daughter about monthly blood in the bag when she was pd training. The kidney clinic, which is 2 hrs. away from where we live, won't allow the local hospital to treat dialysis patients, because of too many mistakes in the past. If you are too sick to do your own dialysis, or if there is any problem with exit site, catheter, or cloudy bag, the patient has to be transported to the kidney clinic. In the case of a cloudy bag, the kidney clinic will instruct the staff at the hospital about what antibiotics to use, and for the patient to inject it into the bag, before being sent to the clinic.
Goofynina, when you get air in the lines, do you get a sore shoulder? It is very common, and can be quite painful. It has happened to Sandra a few times. She also gets a pain in the belly that she can't describe. At the clinic they first thought it was from "dry belly", but that is not what it is.
I have created a website, trying to find a kidney for Sandra, but also to educate others about dialysis, transplant, and kidney disease. I would love suggestions from people on this board.
Would also like to mention, that I don't have any choice in who advertises on my blog. I am trying to find out how to block certain ones, as I don't want anyone to think that I represent them in any way. Btw, I am new at bloging, and the site will get better as I get more experienced.
http://www.kidneytransplantforkyliesmom.blogspot.com/
Hugs, Christina (ulrika)
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Hey Ulrika, Well, i guess PD isnt going to work for me since they have discovered i am a "High Transporter" i swear i didnt smoke ANYTHING, well, ok, maybe a little, lol, anyways, they are going to train me to do the cycler, i am just hoping that works cuz i really dont want to go back to hemo.
As for the pain in my belly, OMG, I have never felt any pain like that before and then it hit me, since i have been eating more protein, not drinking alot of water, *thonks head* I AM CONSTIPATED,,,, i have 2 words for ya, Castor Oil, the nastiest stuff i have ever drank but it has made such a HUGE difference in the way i feel, even when i drain i dont get the pains as i used to. Although i was having bowel movements regularly, i guess "evacuation" wasnt "complete" lol, and it built up in there, waaaaay in there, i think i shit i snicker bar i had back in high school, oooops, sorry, too much info i am sure, but that is the kind of result i had. But make sure when she takes it, she isnt going to have to do an exchange too soon, better to take it right after one so that way you have the time to let it work, took me about 45 minutes for it to work but you know everyone is different. And i know this may sound gross but i am even passing gas again, YAY!!! lol, I was getting worried there for a minute cuz nothing was coming out (gas) but after i took that, i started burping and farting (yes, poor hubby) lol, but he was even happy for me, He kept saying, "Now your talkin" lol, just goes to show ya what kind of sick sense of humor we have, lol, but in all seriousness, i think it may help your daughter. And YES,,,i do get that pain in my shoulder, seems like when you go to lay down it gets worse so sometimes i will just sleep sitting up, BUT, now, since i drank that, bleccch, castor oil, it seems to be going away too. If you decide to try it, let me know how it worked for your daughter, Good Luck to you both.
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You crack me up Goofy ;D. It all sounds so familiar. Never have our family been so obsessed with the bowels, and its functions as we have since Sandra had her surgery. Fortunately, that part has improved. However, she still gets a pain that no one can explain, although the pd nurse told her that other patients have complained about the same thing. We think that the catheter touches certain organs sometimes, and the body reacts by trying to get rid of it. It is a sharp shooting pain, she describes it as like hitting the funny bone, (ouch). Her bowel problems seemed to go away when the doctor prescribed Domperidone. It works wonders. I call them her champagne pills.
All kidding aside, it was so hard to see her in so much pain. Sandra told me that she will start posting as soon as she has handled the stress that she is currently under. Mainly financial. Right now she is reading all your posts, and feel a kinship with you all.
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Is your daughter ever gets a handle on the stress, let me know her secret or please let us know what drugs they gave her. >:D I feel like I will never get a handle on the stress around here! But for different reason than PD.
Katherine