New to PD

[rookiegirl]

Hi All.  I was really excited to come across this website.  I've been reading everyone's messages and I've learned so much.  THANK YOU.  I had my PD catheter placed on 10/05/07 and I start my PD training on 10/22/07.  I have been feeling really depress.  I can't seem to get use to the idea of this foreign object connected to me.  On top of it all, my belly is all swollen and it is very comfortable to situp.

[MyssAnne]

Welcome!!
I am gonna assume you will be training on manuals, do you plan to use the cycler in the future?
Yeah. Those of us who fill during the day or have fill left in can attest that you get FULL!!!!
It does get better, and easier with time, do read our previous threads on capd, hopefully you'll get ideas
and know what to look out for!

Anne

[rookiegirl]

MyssAnne, thank you for the warm welcome.  This may be a dumb question and I'm still learning all the medical terminology.  Is the cycler the machine you hook-up to at night?  If so, this is what I want to do.  I'm not sure what they will do when I go for training.  I suppose they will start me on manual?

[rookiegirl]

Did I say "comfortable"?  Ooops! my mistake I meant to say UNCOMFORTABLE.  It feels as though I'm constantly pushing my belly out.  I hope this will go away really soon.

[okarol]

  hi rookiegirl,
I saw you in chat for a minute but I must have gotten bumped out. Glad you could join the group and I hope you make some new friends here!
Welcome!
 

okarol/moderator

[KICKSTART]

Hi there .. i have been doing manuals for 3 yrs now .. sadly that bloated feeling doesnt go away but you do get more used to it ! Training isnt that bad once you get used to it , at first it will be scary but soon you will be able to do it with your eyes closed ..honestly ! Best thing to do right now if your feeling really bloated is to eat several small meals ..rather than a couple of large ones ( it makes it easier on your stomach) and watch for getting constipated ..get laxatives if you do get constipated. Anything you want to ask just lets us know , im sure someone will be able to help you on here ..

[goofynina]

If you have a problem with constipation now and you dont want laxatives, you can start taking stool softeners, that helped me in the beginning, now if and when i feel the ol' plumbing backing up (or slowing down)   I just drink some warm prune juice, figured it was better (and more effective) than poppin a pill.   I am sorry if you are uncomfortable, and as they say, it will get easier with time and hopefully you will get used to it too.  We are here for you if you have any questions, looking foward to hearing more from you 

And yep, the cycler is the machine you hook up to at night, it is so much easier than manuals but to each their own, Good Luck 

[MyssAnne]

Yes, the cycler is the machine you hook up to at night, but everyone SHOULD be trained on manual first. That's the way my nurse put it, you just never know when there's going to be an emergency. For me, I do the cycler during the week, then when I am at my fiancee's, I do the manual.  I do the packing up and hauling, so for me, this is best.  You DO get a big belly. I hate mine, but that's part of it. Small meals are best if possible. I have not had constipation (knock wood), yet, so listen to others on that one!

I do ilke the way pd makes me feel. It's daily, so it works daily, and when it's done correctly (enough dialysate), you feel good too!!! 

[angela515]

You should be trained on manuals first, and then the cycler if it's what you want to be on.

For me, I never had a problem with feeling a full belly or big belly, or w/e... because I *MADE* my doctors change my prescription after about a week on the cycler with a last fill... I said, nope, not for me... I will NOT do a last fill, I need to be dry during the day. I didn't really eat when i had a last fill, b/c I felt full already, I couldn't wear certain jeans, b/c they were to tight with a last fill, and I also was a high transporter so I ended up retaining almost all of it anyways.

Once i was changed to no last fill, and I was dry during the day, I could eat again, and drink, and wear jeans, and feel comfortable. However, everyone is different and what works for one may not work for another.

Good luck!

[KT0930]

  If you have any problems or questions, this is the place to come for answers and support! Best of luck with your training!

[Ken Shelmerdine]

Rookiegirl Angela is right. I think if you can do without the daytime fills you will feel fine. Ask to go dry during the day and say you want it assessing after a couple of months with an adequacy test. This will tell whether you are getting enough dialysis and if all is OK and you've not been getting swollen from fluid there's no reason why you shouldn't be able to carry on having dry days. As for the training. here in the UK they show you both manual  and cycler dialysis in 5 daily training sessions. I don't know why they can't do that elsewhere.

Good Luck and any questions just ask, and don't worry if you have any initial problems with the cycler. We've all had them and thankfully for most of us any problems soon sort themselves out.

[paris]

I have just had my first orientation to decide on what type of dialysis to do. My neph and nurses think PD is perfect for me, so I am learning all I can.  (Thank you Goofynina and Rerun!) My center trains on manual and cycler both during the training period.  Manual for when power goes out or traveling, etc.  With hurricanes (the natural ones, not hockeye) we can lose power for a week.   Thanks to all of you that are already on PD and are helping those of us be less afraid of the future

[goofynina]

  So happy you decided PD Paris, i would hate the thought of you on hemo, i, personally, never had anything good to say about it other than it kept me alive another day (to which i am forever grateful)     You know you are not alone in this, you have all of us behind you and beside you all the way   

[Ken Shelmerdine]

I have just had my first orientation to decide on what type of dialysis to do. My neph and nurses think PD is perfect for me, so I am learning all I can.  (Thank you Goofynina and Rerun!) My center trains on manual and cycler both during the training period.  Manual for when power goes out or traveling, etc.  With hurricanes (the natural ones, not hockeye) we can lose power for a week.   Thanks to all of you that are already on PD and are helping those of us be less afraid of the future

Paris you chose right. I'm sure you'll do great on PD. Any problems just tell us and those of us on PD will soon give you answers.

[paris]

Thanks Ken. I know I can always count on you!

[KT0930]

Paris, so glad to hear you've chosen PD. As you know, almost all of us who do it love it (well, as much as you can love dialysis, anyway). Best of luck, and let us know how everything's going!

[Ken Shelmerdine]

Hi All.  I was really excited to come across this website.  I've been reading everyone's messages and I've learned so much.  THANK YOU.  I had my PD catheter placed on 10/05/07 and I start my PD training on 10/22/07.  I have been feeling really depress.  I can't seem to get use to the idea of this foreign object connected to me.  On top of it all, my belly is all swollen and it is very comfortable to situp.

Rookiegirl, tell us how your first two days of training went.

[rookiegirl]

Sorry for the late response.  First day I was nervous and somewhat disappointed.  I had to do a 24hr urine collection and gave blood.  The nurse told us my prescription is 10hrs, 4 exchanges, and 1.5 special solution 12-15hrs.  I was really upset because I thought I would only do dialysis at night and be free during the day.  I didn't do so good with the fill and drain time.  During fill time it was o.k. but the dwelling, I was really uncomfortable.  My sides hurt and I had a hard time breathing.  First drain was painful too, I had fibrin that was clogging the catheter.  I had difficult time with the cramping.  The second fill they injected Heparin in my solution.  When we broke for lunch, I couldn't eat.  I lost 4lbs on the first day.

Second day.  I was challenged.  They gave me the 4.25 solution.  Moving was difficult.  Second fill was another 4.25 and I had to sit there for a while because moving was painful.  Couldn't eat lunch again because of the full sensation.  Draining was just horrible.  I was told once my body become accustom to the fill and drain it will get easier.  I really hope so.  I lost another 2lbs today.  Total ultrafiltration 1550.

Those that have gone thru this process, does the pain go away?  Does the body really get use to the fill sensation?  When I'm filled, my sides hurt and moving feels like someone is punching me hard on my sides.

Thanks,
Rookiegirl

[Ken Shelmerdine]

How about suggesting to the docs that you start with a reduced daytime fill, say about 1 ltr at a time. It's usually daytime fills which are the most uncomforable. Remember when you have the maximum fill from the cycler you are layed down which is more bearable and once you are asleep you wont be concious of it. From what I've read on this forum they seem to start people on the maximum in the USA whereas in the UK they build daytime dwells up slowly to enable your abdomen to adjust.
I had a few  problems when I first started PD and I thought it would never improve but it did. I do hope things improve for you as I'm sure they will.

[MyssAnne]

Ken is right. I am shocked they started you out so much. YOU are in charge. It is much easier on your body to build up to it, not to challenge it. Start with the lowest number possible bag, and with the highest level of fill that is comfortable for you. I started out with 500mls and worked up to the full 2000mls on manuals, it's different now, on the cycler, I have more in the evening and less during the day.

[rookiegirl]

Today was my 3rd day in PD Training.  I didn't sleep last night.  I was up crying because I just don't think I can do PD.  I really want to give it a try but it's so hard because of all the discomfort and pain.  This morning I sobbed to my nurse my concern.  I wanted to know if they can change my prescription to do my exchanges at night and have my day free (dry).  My nurse understood and would make a phone call to my doctor.  Unfortunately, my doctor is in China and won't be back until 2 weeks.  I'm suppose to start the 4 exchanges this Friday night.  I really don't look forward to it.

Today in training, we did 2 exchanges of 2.5.  Again while dwelling, I felt like my abdomen was going to explode.  When we broke for lunch, I ate two bites of my sandwich and few sip of water.  I could feel my sides expanding when I tried to eat and drink.  When I walk a wabble like a duck and my back starts to ache.

After training, I was so excited to leave from there.  When I got home, I finally ate.  Right now, I'm feeling really good except for the sore incision that is still healing.  It's only been 3 weeks since my surgery.

[goofynina]

I know it is hard but believe me, it will get easier for you, especially with the cycler, I hope your pain eases up and allows you some comfort before, during and after your dwells.  Sending good thoughts and prayers your way 

[Wattle]

Hi Rookie girl.

Are the exchanges 2.5 ltrs or 2.5% solution? The solution comes in different strengths and are colour coded. Starting off with fills of 2.5 litres is a HUGE amount of fluid.

I am on APD (cycler) with three overnight fills of 1500mls (1.5% solution) with a last fill that is exchanged manually in the afternoon. Again it is only 1500mls (1.5% solution). I carry fluid all the time. During the first few weeks of training it was really hard. I ultrafiltrated high amounts every exchange also and by the time it was due to come off I was in a lot of pain. I found it difficult to eat and usually vomited. This only lasted the first ten days or so, after that we worked out the smaller fill volumes were better. Also at the start you tend to have a lot of fluid to take off. Your body will adjust and the fluid levels will balance out. Everyone is different so everyones prescriptions of PD differ. It also depends on the unit you are with. By doing a manual exchange during the day I am getting more dialysis, which in the end is better for me. Although I wasn't given a choice. But I prefer to do a manual exchange and keep my fills to 1500mls, than have to increase the fill volume and feel sick.
Dialysis sucks and there have been plenty of days when I have felt I can't do this anymore. I have also thought that Haemo would be better. But if you read all the posts of those that have done both most agree PD is the better choice.

Give yourself time to adjust to the routine of PD and it will all settle down. Please keep posting any questions you have. 

[rookiegirl]

Evening Everyone,

4th Day of Training:  I did 2 exchanges of 2.5% green tab which has 2000mls.  First dwell was not too bad.  Second dwell was still more discomfort.  Both drain time was HORRIBLE!!!!  You see I drain so well and by 10 minutes into the drawn I start to feel that devilish pain.  It feels like labor cramps that comes and go.  I can handle the hovering cramp which feels stronger than menstrual cramp.  But that strong pinching feeling I can't handle.  So, I asked my nurse if we can close the transfer set half way.  IT WORKED!!!  Slowing down the gravity pull took that strong pinching pain.  The cramping was still there but I was able to tolerate.  If I had to measure my pain like how they ask you in the hospital, the pinch is 10++++++++++++++ and the steady cramping is 5.

I'm suppose to go on they cycler Friday night.  I'm so nervous because of the drain time.  I'm going to try to see if I can also turn down the flow on my transfer set.  But the nurse told me the machine might alarm for low drain.  I'm going to try it anyway.  I HATE DRAIN TIME, HATE IT! HATE IT!

I really wish they could have started me off slow like some people on this site.  But instead I'm starting of with nightly 10hrs. 3 exchanges and a 4th on of 1500mls of special solution that is slow pulling which last 12-18hrs.  I start back to work this Monday.  I don't know how I'm going to feel with this solution in me all day long.  On top of this, I'm still healing from my incision and the exit site. My abdomen is already sore to start with and they start me on this strong 2.5% & 4.25% in training.  I really hope and pray when my doctor return from China that he shows sympathy and compassion and change my prescription to allow me to be at least "dry" during the day.

Tomorrow is my last day of training.  The nurse will do a home visit to make sure the room I use for my exchanges is appropriate.

Wish me luck and pray for me and my husband on our first solo dialysis.

[goofynina]

I think the only problem you may have with the cycler is if you close your port 1/2 ways at drain time, the alarm might go off, but then again, it may not, i hope you find something that works for you