I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: Laurie on October 05, 2007, 06:01:16 PM
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Today was my first day of PD Training. I was a little nervous about the first fill and drain, but it went very well. I'm so relieved to have the first one over with. It was a little overwhelming, but I'm sure it will get easier.
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Laurie, it will get easier...to the point you can do it with you eyes closed. Ok, maybe not quite, but it'll sure seem that way! Best of luck with the remainder of your training!
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Laurie, I had an orientation last Monday to help me decide what type of dialysis to do. My docs and nurses say that PD is the way I should go. I will be anxious to hear how your training goes. Please keep posting with all the details! Hope it goes well for you.
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:clap; YAY, I am so happy to hear that your first day went well, i hope all your days goes as well as today :2thumbsup; And remember, if you have any questions, please do not hesitate to ask :2thumbsup;
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:cuddle; The first day is the hardest. Now that it is over, you will find it does get easier. Read all the information they will give you. Have your questions ready to ask and try to relax.
I also found it overwhelming but it all comes together quickly. I am sure you will do great. ;)
You can PM me with any questions. :grouphug;
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The first time i did it at home on my own was the worst , i was so nervous and shaking !!! Now i can do it with my eyes shut , it becomes second nature. Its like anything else its easy once you know how! Good luck it will be fine .. its just practice!
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Thanks for the replies.
I'm still trying to get used to the length of the catheter. I had it put in the beginning of August, but they left it under the skin until I was ready to start training. I went on Thursday to have it exposed. I could not believe how long it is. I'm having trouble getting the tape to stick to my skin. Any suggestions? I plan on ordering some belts off the internet, but haven't yet. :thx;
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Hi Laurie,
There are a few different tapes you can try. Just ask your nurse/clinic. I use a cloth like tape as the anchor and a Primapore dressing (cloth like patch) to cover the exit site. Fresenius supplied me with a belt to hold the catheter, they aren't too bad.
On the length of the catheter, there are different extension lengths available. They usually give you the longest while you are training so it is a little easier to work with. You can ask for them to change it. I am on the shortest Fresenius extension, which is 30cms from the join. It does take a while to get use to a tube hanging to your knees. Give yourself time and it will all seem second nature. :cuddle;
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Laurie,
I totally understand. The surgeon went ahead and put the longest extension on mine when it was inserted, then the hospital sent me home a few days later with this THING hanging down to my ankles, and no explanation of how to care for it. Thankfully, the nurse at the neph's office showed me a few days later about looping it around so I only have to use one piece of tape each day.
Ok, back on topic...try different types of tape. Fresenius supplied me with paper tape, but it's pretty much useless on my skin. There are many different types out there, so ask your nurses, buy one roll at at time, whatever you need to do to try them one at a time until you find one that sticks to your skin but not so hard that it tears your skin up when you take it off. I find nylon tape works well.
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Thanks Wattle, I go back on Monday, so I will ask for a different tape. I can't even get the patch that covers the exit site to stick very good. I went to the store and bought some different tape, one will stick, but then it is very hard to pull off.
KT, OMG it really went to your ankles? Mine only goes to my knees, so I guess I shouldn't complain.
I really liked the way it was looped yesturday, but after I changed the dressing today, I can't get it back the way it was :urcrazy;
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Today was my 4th day of training. Only 2 more to go and then I'm on my own. It has been going very well. Today was really boring, going over the same thing over and over. I feel very confident that I am ready to start on my own, but it is required to do 6 days of training.
The only thing that makes me mad is that they have me set up for 5 exchanges in a day. Which means I will be full during the day. I hate it. I have tried to talk them out of it, but they say they start everyone out this way for the first 30 days and maybe after they do the first clearance test, then maybe we can cut out being full during the day. It is so frustrating because I'm not everyone else. I don't have a problem retaining fluid, I'm still feeling pretty good and don't really have any symptoms. I don't understand why I can't try the 4 exchanges for the first 30 days and then if we need to add the 5th, we can. :thumbdown;
Hopefully I won't get too dehydrated ???
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Laurie, will they eventually be switching you to a cycler? That way you can have your days free with no dwelling (hopefully) :popcorn;
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Laurie, will they eventually be switching you to a cycler? That way you can have your days free with no dwelling (hopefully) :popcorn;
I'm starting out on the cycler, but they still want me full during the day. I will have a total of five exchanges during the day. When I wake up in the morning, I will be full. When I get home from work, I will drain that and then fill and then before I go to bed will drain and fill and then have 3 exchanges during the night. :thumbdown;
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Thanks for the replies.
I'm still trying to get used to the length of the catheter. I had it put in the beginning of August, but they left it under the skin until I was ready to start training. I went on Thursday to have it exposed. I could not believe how long it is. I'm having trouble getting the tape to stick to my skin. Any suggestions? I plan on ordering some belts off the internet, but haven't yet. :thx;
Have you seen the PD band? It is custom made for each person. It look awesome. I am getting one when I get my catheter in. Here is the link.
http://www.patientspride.com/pdsecurityband.html
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Wishing you all the best with your training, and hoping things go smoothly. :cuddle;
Amanda
xxoo
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Laurie, I had an orientation last Monday to help me decide what type of dialysis to do. My docs and nurses say that PD is the way I should go. I will be anxious to hear how your training goes. Please keep posting with all the details! Hope it goes well for you.
Hi Paris
I didn't realise you are still pre-dialysis. I can recommend PD particularly with a cycler. You can carry on life as normal with complete freedom 'cause it's all done while you sleep at night. Most people experience early problems but in the main the problems soon sort themselves out.
As far as the surgery is concerned I know someone who had a local anaesthetic and wishes he gone for the full because though he didn't feel much pain he said he could feel the sergeon sort of tugging and pulling and he said it wasn't pleasant so I opted for full anaesthetic. I was in hospital for a week because I got a slight infection in the surgery wound otherwise I would have been out in two days. The wound itself wasn't very painful and normal painkillers like paracetamal kept it at bay.
The worst pain was the god awful mother of a sore throat I woke up with fromt he tube they put down your throat.
Best of Luck :cuddle;
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Definitely, PD is the way to go, especially the cycler! I love mine!!! I have to be full during the day, which irks me as well, but they won't change it, they say it's necessary. Ugh. OH well. I remember my training, I was so nervous, then after I'd been on it for a week at home, I thought, why the heck was I so nervous? This is cool!!!
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MyssAnne, did it take you a while to get used to the cycler? I wake up in pain every time it drains. Right now, I really hate the cycler. I'm full during the day too, which I hate. I haven't ate much since Thursday night. My back is killing me.
I have a call in to my nurse to see if there is anything that can be done. I'm miserable. >:(
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Laurie, how much are you putting in?? That sounds like a major part of it. there shoudl be NO pain whatsoever. My guess is you're putting too much in at one time. You can control the amounts put in. THey don't like it, but when I had a new tube put in, I didn't put much in to begin, but worked up to it, gradually. VERY gradually.
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I was putting in 1500. Today they changed it to 1250 which feels better, but I still have pain during the drains. They are thinking maybe the catheter has moved or is too long and may need to be replaced. The pain gets so bad I have to bypass the drain and go on to the fill.
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I'm starting out on the cycler, but they still want me full during the day. I will have a total of five exchanges during the day. When I wake up in the morning, I will be full. When I get home from work, I will drain that and then fill and then before I go to bed will drain and fill and then have 3 exchanges during the night. :thumbdown;
Hi Laurie,
I am on the same routine. You will get use to it. I was going crazy on the manual bags. You just seem to do dialysis all day long. Now I do one exchange in the afternoon and the cycler at night. Each exchange is 1600 fills.
It takes a while to get use to carrying the fluid. I felt like I was going to be sick for the first couple of weeks but it did get better.
Try changing positions with draining to see if the pain gets any better. I find I drain better lying on my right side. :urcrazy;
Hang in there :cuddle;
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Unfortunately, the pain is something that happens occasionally. Usually the cycler is trying to pull off more fluid than is in there. Picture a kid's CapriSun drink pouch (the silver ones that you stick the straw in). When you get to the bottom and are trying to get that last little bit of drink out, it collapses the bag. That's essentially what's happening inside. At least, that's how it was explained to me. And that's the reason for the pain. As wattle mentioned, try changing positions. My cath is on my right side, and I find it doesn't hurt as much to drain while laying on that side. Also, what percentage solution are you using? I find I don't have as much pain with the drains when I use a higher percentage (2.5% vs 1.5%). Just be careful not to dehydrate yourself using the higher solution.
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KT is right, I like the CapriSun analogy. Do be careful with the higher percentages, as she says, it does dehydrate you, and I speak from experience!!! Try positioning yourself once the pain starts. Try the other side, try your back. It very well may be the tube is too long.
Also, you could just go ahead and bypass it at that point, if enough fluid has been drawn out, just go ahead and go to fill. I've done that too,
if I've pulled off not only what I put in, but a little extra.
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I am on the Baxter cycler and love it. But when I started I was having severe pain with draining, so they put me on a tidal program for a while. I have now been on more than 6 months and seldom have pain at all. I may go off tidal and on regular program since I am now up to 90% with no ill effects. One other thing that can cause pain is not being regular. Take your stool softeners and make sure you don't get stopped up.
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But when I started I was having severe pain with draining, so they put me on a tidal program for a while.
I've never heard of a tidal program, what is it?
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A tidal program leaves you with a little bit of fluid still in after each exchange, without draining completely...so you don't get that tugging, cramping feeling as in a full drain. After a while I think the peritoneum stretches so that it doesn't hurt any more. I am gradually weaning myself off by reprogramming my machine.
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Laurie
Sorry to hear your having the dreaded drain pain. Your not on your own, it's a common problem but it usually gets better with most people. Hope things soon get better. :cuddle;
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Ken is right, it WILL get better. One thing I found when I had pain from draining was to raise my knees so that my feet were flat on the bed (best place, when on the cycler!). I then started breathing deeply in and out. Kinda like the Lamaze breathing. That helped alleviate it a bit. ALSO taking some tylenol about half an hour before starting the cycler helped too.
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I have tried everything. Nothing helps. Once it starts to pull, the pain will not stop. I talked to my nurse this morning and they are gonna try the tidal program. I hope it helps.
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Best of luck, Laurie! My training nurse told me that they don't use the tidal program, but then, they don't do a few things I wish they did!
Katie
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Best of luck, Laurie! My training nurse told me that they don't use the tidal program, but then, they don't do a few things I wish they did!
Katie
I am the first one my nurse has tried it on. ???
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Hey Laurie,
Glad to hear you dialysis is going well, I also had pain with Baxter and had to have it on tidal (leaving in a little extra).
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Laurie, have you tried it yet? Did it work?
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I tried it last night, but I didn't fall asleep untill 2:00, so I was awake for all of the drains except 1. I was able to sleep thru the last drain, but I did have to bypass 2 when I was awake.
So, I'm not real sure if it's gonna work or not. Maybe tonight I will be able to sleep. :-\
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Laurie, is the pain near the end of each drain, if so, tidal should solve the problem.
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Let's hope tonight is the winner for you Laurie. Sometimes there's a period of adjustment. I tell ya, the first week I was on it, I HATED it. I cried, I was so frustrated. Then, once it started working well, I really liked it, and still do.
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Laurie, is the pain near the end of each drain, if so, tidal should solve the problem.
Most of the time the pain is near the end of the drain. Sometimes it will start in the middle of the drain. I tried the tidal last night and still had to bypass 2 drains.
I talked to my nurse this morning and she is thinking I might have to switch to manuals. At this point, I'm all for that.
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So will you just stay with manual for a week then try again? Or is it manuals permanently?
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Laurie,
I'm so sorry it's not working out as well as you'd hoped. I know having disturbed sleep can be a nuisance, but can you try it for another week or two and see if you can start sleeping through it? I'd hate to see you give up on the cycler this soon!
Good luck, no matter what you decide!
Katie
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Oh God..."drain pain"? That sounds scary! Lord, the more I learn about dialysis, the scarier it becomes.
Laurie, I'm really sorry you are having to go through this. Your body is going through such an extreme change, so it makes sense to try to be patient and give yourself a bit more time to adjust. But I know that's easier said than done. I'm really interested to hear about your progress.
As for "drain pain", what can be done to alleviate it? Do you all take pain killers, or do you just have to grin and bear it until it recedes on its own?
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Drain pain usually goes away when the problem causing it is fixed. It is caused for diff reasons for diff people...
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Could you tell me a bit more about how drain pain is different in different people...what are the different causes?
Thanks!
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I do know that position is a big factor, i get it if i am on my back, but if i am on either side, i dont even realize i am draining :2thumbsup; If/when i ever get constipated, that is a big factor too, not only do i feel the drain pain more, i start retaining fluid, so i make sure my plumbing is up and running each and every day :urcrazy; Those are the only 2 that i know of, :2thumbsup;
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So will you just stay with manual for a week then try again? Or is it manuals permanently?
I think I'm gonna stay with the manuals permanently.
As for "drain pain", what can be done to alleviate it? Do you all take pain killers, or do you just have to grin and bear it until it recedes on its own?
The only thing I know to do is bypass the drain and move on to the fill. Which leaves me with extra fluid.
I have to make an appointment to have an X-ray done to see if maybe the catheter is too long or has moved. If it is too long, then I will have to have it replaced. :thumbdown;
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I guess you could always go back to the cycler in the future if you ever change your mind. Maybe it will be easier once you've done manuals for a longer period of time. Just do what you have to do, you know?
I know it sucks to think that there is something wrong with the placement of the catheter, but if there IS something wrong there, then do get it fixed, OK? Ultimately, dialysis is supposed to make you feel better, not give you more pain. If what's causing pain is just a stupid tube, then hopefully getting it fixed will go a long way to making your life more liveable. Let us know what you find out.
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I had to laugh .. i have had 'drain pain' for nearly 3 years ! All thanks to my catheter being stuck under my 12th (elongated) rib. Very early on after my catheter was fitted , i was in total agony each drain and no one could understand why .. they even told me it was all in my head .. I ended up having the biggest row with the top doctor and telling him it was BLOODY real. In the end my GP got me an x-ray which showed my catheter was lodged under my rib . They gave me strong laxatives to try and bring it down but by then it was well and truly stuck . Amazingly it does work ok till i get to a certain point on a drain and then the pain is awful .. so i just stop draining at that point and go to a fill. Its been like this now for 3 yrs and if i just turn a certain way it feels like a dagger in my ribs , but i have just got used to it after all this time now.
ps ..forgot to add thats why i've been on manuals for 3 yrs now!
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I guess you could always go back to the cycler in the future if you ever change your mind.
I don't think I will go back to the cycler. After trying it, I don't like the thought of being tied to a machine. I have a 6 year old daughter and all I can think about is what if something happens and she needs me and I can't get to her quick enough.
I know it sucks to think that there is something wrong with the placement of the catheter, but if there IS something wrong there, then do get it fixed, OK?
I will get it fixed, but not by the same surgeon. He told my Neph that if something is wrong with it, there is nothing he can do and I will not be able to do PD. Both my Neph and nurse disagree and have told me I would need to find someone else.
Ultimately, dialysis is supposed to make you feel better, not give you more pain.
I felt so much better before starting dialysis. Pretty much the only symptom I had was being tired all the time.
Kickstart - I'm sorry you have to deal with the drain pain too. I can handle the pain, but I can't handle having to wake up every 2 hours to bypass the drain.
I start the manuals on Sunday, so hopefully it will get better. They are gonna let me try doing only 3 exchanges a day because I still work full time and I don't want to have to do an exchange at work.
I hope this all gets straightend out cuz I hate the thought of having to do hemo again.
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Hi Laurie. I've been reading your message threads pertaining to PD Training. I start my training on Monday (10/22/07). I'm really nervous. I just had my catheter placed on 10/05. Feeling all bloated right now.
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Hi Laurie , yes manuals might be inconvienient for you but at least you have better control over the pain side of it ..as soon as it kicks in you just stop draining. Tbh i dont mind manuals .. i have done them for so long now , it gets kind of like cooking ..you dont think about making meals but you do them several times a day !!!
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Hi Laurie. I've been reading your message threads pertaining to PD Training. I start my training on Monday (10/22/07). I'm really nervous. I just had my catheter placed on 10/05. Feeling all bloated right now.
I too was really nervous about the training, but it was no big deal. I had to do 6 days of training and towards the end it became very boring.
Good luck with your training. I hope it goes well. :2thumbsup;
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I have some good news to share. Since starting PD, I have had a hard time with the drains. I have recently switched from the cycler to manuals hoping that would help with the pain, but it didn't. I was putting 1500 in and only getting out around 1000 if even that much. I started getting a lot of swelling in my legs and hands. My UF was always a negative number. Finally I have found something that works. I have found that if I sit on the floor when I drain I have absolutely no pain whatsoever. My UF last night was 550. I was so excited. I was beginning to think that PD was not gonna work for me, but now I am hopeful that it will.
Just wanted to share this information so if anyone else is having drain pain maybe this will help them too. :2thumbsup;
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I was putting 1500 in and only getting out around 1000 if even that much.
Just wondering, but have you found out if your a high transporter or a low transporter yet? How long do you dwell for?
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I don't know if I'm a high or low transporter. I will have labs done on November 14, so I should find out then.
I do an exchange in the morning at 5:00 am, one at 4:30 pm and one at 8:30 pm. So 2 of my dwells are pretty long. I think thats part of the problem. I think I'm absorbing a lot.
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Sounds to me your a high transporter then... and WOW, those are long dwells... why so far apart?
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I work full time and I really don't want to do an exchange at work, so they agreed to let me try this.
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Maybe you could try to fit 1 fill and drain in before work, and go dry at work, and do a few more after work.. that way your drains will be more than your fills and you won't be absorbing all that fluid? Idk, just offering some advice. :)
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I'm not sure how I would get a drain and fill done before work. I already get up at 4:30 am. However, I do like the idea of being dry during the day. ;D I could add one more exchange after work. Thanks for the advice. I will mention it to my nurse. Unfortunately, my doctor is out of town for a few weeks, so I know she will not change anything until he gets back.
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Sounds to me your a high transporter then... and WOW, those are long dwells... why so far apart?
Sounds to me that your a high transporter too, i would definetly talk to your PD nurse about this, i've never heard of dwells that long either :urcrazy;
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Sounds to me your a high transporter then... and WOW, those are long dwells... why so far apart?
Sounds to me that your a high transporter too, i would definetly talk to your PD nurse about this, i've never heard of dwells that long either :urcrazy;
Ok, I'm convinced. When I drained this morning I only drained 1400 and when I got home from work, I only drained 1050. So I decided to add an extra exchange. I filled at 5:00 pm and drained at 7:30 and drained 1800.
I will talk to my nurse and see what she suggests.
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I agree, it sounds as if you are a high transporter, and need to get another one in there to drain off, it sounds as if you are doing what works for YOU. Ultimately that's what it comes down to, what's best for YOU. If you can be dry during the day, all the much better for you then!
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When I was on PD I did five exchanges. To meet the needs of my work/lifestyle this is how I had them scheduled.
When I came home from work at about 5:00 p.m. I had dinner and then did an exchange. I would disconnect from the cycler and watch TV, do chores, etc until about 10:00 p.m. I would reconnect to the cycler and do three more exchanges while I slept. My last fill was Extraneal (Icodextrin) and I would carry that fill during the day. Extraneal is approved for extended dwells. The Extraneal will be drained at the next evening exchange. All of the exchanges were pre-programed in the home choice pro cycler.
My day dwell was approximately 2000ml and I did not feel the extra weight. However... I was a rather large boy at that time so four pounds was no big deal. A much lighter person would most likely notice the difference.
The schedule I started on was too constraining for me and I thought I had to live with it. When I started doing some research and asking questions the doctor was more than willing to alter my schedule.
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Best of luck, Laurie! My training nurse told me that they don't use the tidal program, but then, they don't do a few things I wish they did!
Katie
KTO if you are using a Baxter you can progam a tidal drain yourself. Bollocks to what they do and don't do at your clinic.