New to PD

[rookiegirl]

It's Friday (10/26).  Finished my PD Training and made a 100% on my written exam/CAPD/CCPD.   My husband is currently setting up my cycler and I will be draining in a few hours.  They did 1 exchange of the 2.5%, drained, filled with a 1500mls of special solution that can dwell up to 12-18hrs.  So I've been dwelling since 1pm today and will drain it tonight around 10pm.

Draining today on the 1st exchange was not too bad.   I had my port turned 1/2 way and that seems to work.  I'm really hoping tonight when I do my first drain on the cycler that I could do the same.  Wish me luck.

[goofynina]

Congrats on completing the training, and passing that test   Good luck on your drains tonight, i hope all goes smoothly for you 

[Laurie]

Good Luck tonight. I hope things go well. 

[MyssAnne]

Let us know how you are. I still think you have way too much in you to start, darn it. 

[Aldente]

WOW... I know what you mean about the pinching feeling.  It was indeed uncomfortable but it did get much better with time.  I also discovered that if I rolled unto one of my sides the pinching would subside.  You will learn all sorts of little tricks that make the treatment better for you.

Hang in there.  I'll certainly be rooting for you!!!

PS. I believe there is a convention in China because my nephrologist is there too.

[rookiegirl]

Good Morning,

Last night was my 1st on the cycler.  Setting up the machine was a piece of cake.  I started my initial drain and 10mins. after the drain that pinching feeling occurred.  I closed my port 1/2 way & that took some of the pain away.  The cycler did not alarm.

I only slept for 2-3hrs. last night.  I was a nervous wreak because I fear the drain time.  On the 1st exchange, the drain pain was tolerable.  Thank God I don't remember the 2nd drain because when I woke up in the middle of the AM, I noticed I was already dwelling on my 3rd exchange.  I couldn't go back to sleep.  The 3rd drain was HORRIBLE!  The pinching feeling was worst on the cycler than the manual.  All this time my port was turned 1/2 thru out the night.  I had to keep pressing Stop/Go on the machine to relieve me from the pain.  The pinching pain hits hard then ease off.  It was like 10-15 seconds apart.  I know I sound like I'm in labor or something.  Do you think it was worst for me because my port was not completely open? .  I'm so scared to have the port wide open because of the pinching pain.

Also, my dwell time was uncomfortable.  It was hard to breathe.  It felt like I had an extra 500lbs on top of me.  You see I'm not a back sleeper.  I normally sleep on my stomach or my sides.  I tried to reposition myself to the side but when I do, I can feel all that fluid moving to the side I want to lay on.  The pressure of the fluid makes my sides and back hurt all night long.  Several times I had my husband sit me up and that felt really good.  I can actually breathe.  I just don't know what to do at this point.

I don't understand my End Therapy Summary:

* Initial Drain was 1317mls.  The nurse filled me with a 1500mls. of the special ICO solutions.  Does this mean my body observed almost 200mls.?  Or do you think it didn't drain all?  Should I call my nurse today?  I'm worried.

* Average dwell was 2:24.  It should be 2:49 according to the machine when I first confirmed all my info.  Is it because my fill time took longer when I kept my port closed 1/2 way?

* UF Total 823mls.  I actually had a total of 4 exchanges.  Shouldn't I have UF more?  When I was in training, they did 2 exchanges and my average UF was around 800-850mls.  What am I doing wrong?

I actually lost 4lbs. from yesterday and my blood pressure is lower than usual.

[KT0930]

First of all, congrats on your first night on the cycler! Second of all, it's not unusual to not sleep very well the first few nights. My sleep got a little bit better every night, but it probably took me close to a month to sleep all the way through the night after I started on the cycler. Just give yourself time and try to relax.

I don't understand my End Therapy Summary:

* Initial Drain was 1317mls. The nurse filled me with a 1500mls. of the special ICO solutions. Does this mean my body observed almost 200mls.? Or do you think it didn't drain all? Should I call my nurse today? I'm worried.

* Average dwell was 2:24. It should be 2:49 according to the machine when I first confirmed all my info. Is it because my fill time took longer when I kept my port closed 1/2 way?

* UF Total 823mls. I actually had a total of 4 exchanges. Shouldn't I have UF more? When I was in training, they did 2 exchanges and my average UF was around 800-850mls. What am I doing wrong?

I actually lost 4lbs. from yesterday and my blood pressure is lower than usual.

I have a final fill of 2000 in the mornings and carry that all day, and my first drain is usually between 1700 and 2100. From what I've been told, yes, we're probably absorbing some of the fluid. It's really not something to worry about, but try to watch your sodium during the day. I also allow myself to drink more because of it (I still urinate, though).

Yes, your dwells were probably shorter due to having it set at half speed. My cycler has a setting called "fast fill", and what that does is add or subtract time from the dwell depending on how long it took to drain and fill. I'm supposed to have 2 hour dwells, but they normally end up being 4-10 minutes longer than that. Again, nothing to worry about.

I've read on here (and also experienced it myself) that our drains are usually higher when doing manuals than on the cycler. Also, when you were in training at the clinic, you were probably sitting up for most of your drains, whereas at home, your laying down in bed. I believe the drain uses gravity, so you will drain more if you're sitting up than if you're laying down.

Hope all goes well tonight and you sleep better. Remember, just give yourself time to adjust and try to relax.

[rookiegirl]

I survived my 2nd night.  This time my initial drain from my 1500mls ICO was 1674mls.  Total UF from the 3 exchanges of 2000mls of 2.5% sol was 1235mls.

I was up for all 3 drains.  The 1st & 2nd drain was tolerable.  I took someone's advised from this site to raise my knees and have my feet lay flat on the bed.  This seems to shorten the pinching feeling.  The 3rd drain was more painful.  More pinching.

Is it normal for the cycler to stop pumping and then restart?  Close to the end of my drain, the pump quiets down and then start back up again.  When this happens, it pulls harder and the pinching feeling becomes harder.  Is this normal?

I still kept my port closed 1/2 way because I'm afraid that if I open it wide, the pinching will get harder.  Do you know if this would be true?  Does a wide open port make the suction harder?  I'm afraid to try.

[Red from Canada]

Hi Rookie Girl!  So sorry to hear you are having drain pain.   I too had a heck of a time getting used to the pain.  They put me on a tidal program, which helped quite a lot.  This leaves a bit of fluid in, so you don't get quite as much tugging.  The pain is because the drain works like a straw in an empty milkshake....suction on your inner stuff.  It does get better!  I am now going gradually back to full drains with very little or no pain.  I hardly ever even wake up any more.  I am on 2-2.5's and 5 drains a night for about an hour and 25 mins and on 1500 ml icodextrin during the day.  Please don't give up.  It gets better and is by far the easiest dialysis.

[rookiegirl]

Hi Rookie Girl!  So sorry to hear you are having drain pain.   I too had a heck of a time getting used to the pain.  They put me on a tidal program, which helped quite a lot.  This leaves a bit of fluid in, so you don't get quite as much tugging.  The pain is because the drain works like a straw in an empty milkshake....suction on your inner stuff.  It does get better!  I am now going gradually back to full drains with very little or no pain.  I hardly ever even wake up any more.  I am on 2-2.5's and 5 drains a night for about an hour and 25 mins and on 1500 ml icodextrin during the day.  Please don't give up.  It gets better and is by far the easiest dialysis.

Hi Red from Canada,
How do you tolerate the discomfort of the dwell time?  I prop myself with 2 pillows and still the fullnest of the fluid causes my sides and back to hurt.  When I try to shift from left to right, it becomes uncomfortable.  The only way to relieve that feeling is to sit up.  As time goes by, will this feeling ease off?  If I can be comfortable during my dwell, I can probably get some sleep in between drain.  There is no sleep during drain time.

 

[Red from Canada]

Hi Rookie Girl.,   Perhaps your nurse would be agreeable to a bit less fluid or more frequent  shorter dwells?  I find that lying flat on my right side and wiggling a little shifts the discomfort.  I never had dwell problems, only drains.  Also, keeping "regular" is critical.  Use your stool softeners and make sure you are clearing yourself at least once a day.  That can cause a lot of pain if you don't. My nurse always told me to roll into the pain.  It helps when you are new to it.

[rookiegirl]

Red from Canada,

Thank you for the advise about rolling into the pain.  I will give it a shot tonight.  I do stay regular so I don't think I have a problem in that area.  I guess I just have to get use to laying down with 3-4lbs. of fluid.  I hope as each night goes by, it will get easier.

Thanks,
Rookiegirl

[Ken Shelmerdine]

Hi Rookie girl. So sorry you'rrehaving these problems. I've never had problems with dwells but then again I had a large abdominal area even before dialysis The first fill does make me feel quite bloated but doesn't cause any pain. You must be tired of us keep on telling you it will get better but I'm sure it will. Don't give up.

[highlite36]

You know, I get the "pinching" problems that you're speaking of as well....  For me, it means that I've fully drianed and am now dry.  That usually means that I can move on to the next fill.  Do you think that could be it for you as well?

[rookiegirl]

You know, I get the "pinching" problems that you're speaking of as well....  For me, it means that I've fully drianed and am now dry.  That usually means that I can move on to the next fill.  Do you think that could be it for you as well?

I believe the machine is trying to suck out every bit of the fluid.  Just like the solution bags.  I'm to the point now that if I start to feel the pinch, I will just bypass the remaining of the drain time.  I don't know how the PD Nurse will feel about it once they review my cycler card.  I have tried repositioning myself and still the pinching still hurts.

[Ken Shelmerdine]

Rookiegirl. How's it going? Any improvement?

[Psim]

I hope today is going better for you rookie girl.

[rookiegirl]

I'm having difficulty with low blood pressure.  I was told to come in at the Dialysis Clinic on Tuesday.  My blood pressure yesterday was 71/62 with symptoms of dizziness.  They had to page my Dr.  They took me off my BP Meds and not to do Dialysis Tuesday night and Wednesday (all day) .  They also change my ProCard to do a tidal volume of 250mls. for each my exchanges.  Hopefully this will ease the pinching pain.  The ICO that I carry all day have been change from 1500mls to 1000mls.  Oh boy, I was so excited when they told me I would get a break.  I slept so good last night, I didn't want to get up.

Has anyone been on a "Tidal Volume"?  I'm scared to absorb that 250mls.  If so what will happen to me?  Will this make me sick, fat, etc...?

[goofynina]

I dont think absorbing that much would make too much of a difference but if it does, i am sure you will notice swelling in your ankles and/or face.  Good luck, i hope it works out for  you 

[rookiegirl]

I COULDN'T DO IT!!!

Wednesday night - I couldn't sleep.  The pinching/cramping of the drain kept me up.  I also started cramping during the fill.  This has never happen.  I cried in between 3 exchanges.

Thursday - I went to my weekly followup at the Dialysis Ctr.  I had to get another Iron Infusion.  I told the nurse about the pinching/cramping.  They told me this will get better in time.  2hrs later, I ran a fever 100.5  and couldn't stay warm.  I called the nurse.  She said this may be a reaction from the Iron Infusion.  I was told to take Tylenol and keep a watch.  If the fever doesn't break, I was told to go to the emergency room.  Thank God, the fever broke around 8pm.  This is when I start my night therapy.  My first initial drain took almost 45mins. because I kept stopping the machine.  I couldn't tolerate the drain pain.  My first fill was also uncomfortable.  It cramped as the fluid entered my belly.  I even turned down my port 1/2 way.  The fill cramp didn't stop until it was complete.  After 3 hrs. it was drain time (12:00am).  I must have fallen asleep between 9-12 because the pinching woke me up at midnight.  I kept stopping the machine again.  Then finally, I couldn't take it anymore.  I hate to say it, I'M A QUITTER!!!   I discontinued my remaining therapy and did a manual drain for the remaining of the fluid which was about 400mls.  Afterwards, I just went to sleep.

Friday - Woke this morning and did a manual exchange.  Called the nurse to see if I can do CAPD instead of CCPD.  They had to page my Dr.  Offcourse, my Dr. is out of town again and the nurse spoke to the Dr. on call.  He said this will be okay for the weekend.  But come Monday, they will need the okay from my Dr.

I really feel I can tolerate the manual than the cycler.  On the manual, it still cramps but it doesn't pinch hard.  When I turn my port 1/2 way this helps a lot.  But on the cycler, even when I turn the port down, the pinching never stops.

I don't understand why it would not be okay to switch from the cycler to manual.

I'm feeling really low right now.  I feel as my spirit is broken.  I feel as I have given up.  I know I need this to stay alive, but it's so hard to be positive when I'm in so much pain.  I try to find my motivation to keep me going, but all I can think of is the discomfort.  I just feel like a big failure.

[Laurie]

Rookiegirl, I know excatly how you feel. Everything you describe is the exact same thing I experienced. I tried the cycler for about a week and decided it was not for me. The company came to pick it up yesturday, and I was glad to see it go.
I am now doing manuals and I found that if I sit on the floor when draining I have no pain. Maybe you could try it and see if it helps you.

Good luck and I hope things get better for you. 

[MyssAnne]

RookieGirl, you are NOT a quitter. You tried it, it did NOT work for you. Heck, I give you kudos for sticking it out for as long as you did. You tried it, it's not for you. 

[KT0930]

Rookiegirl, don't be so hard on yourself. As someone said in another thread, the fact that you're doing dialysis at all shows you're no quitter! I have the same pain you've described (though not as intense, I don't believe), and I've thought about quitting several times. Sometimes the only thing that kept me going was thinking about how much I HATE hemo! You'll find the modality that works for you, and you'll feel much better.

[goofynina]

Rookiegirl, you are no quitter my friend, remember that!!!  I am just sorry your experiencing so much pain, i hope they really look into what could be causing it and hopefully it is something they can fix.  Hang in there and remember we are here for you and we support whatever decision you make  

[rookiegirl]

Thank you all for much encouraging words.  As I read all of your response, I couldn't help but cry.  It's so wonderful to have you all in my life for support.  I know I can always go here to find comfort.   

Today has been a GREAT day for me.  I took the day off from work.  I spent the morning resting.  My drain from my 1st exchange was almost painless  . Second drain was not too bad (few cramp).  Made it to my daughter's Senior Night Football game.  She is the drum major in the marching band. I finally got to see their 2007 showcase.  They were so awesome.  Now I see why she so much deserved her 1st place Drum Major Class 3A.  I was so proud.  I almost forgot I was on dialysis.  For once in a long time, I felt normal.

I was only able to stay after the performance.  The stands are just not comfortable to sit on.  Plus, it was freezing cold.

Tomorrow will be another wonderful day.  IT'S MY 37TH BIRTHDAY!!!!  I'm going to a party!!!