My first week of PD by myself

[Savemeimdtba]

I had a lot of different things to say so I figured I might as well start a topic of my own and see if you guys have some of the same issues:

1.  Is anyone else scared to death of changing the dressing on the exit site?  I do it.. but I get dizzy and start to panic and can't breathe.  I sometimes have to have my fiance do it for me.  It could be due to my extremely low blood pressures (the dizzyness) but I think the panic is the stress of it.  I'm so scared of getting peritinitus again and then having to be taken off PD.  Going back to Hemo is about the worst thing I could imagine... Will it get easier?  Did anyone else have this problem?

2.  The fullness feeling.  I don't want to eat... but the nurse insists that I have to or I will lose the catheter.  I was fine when I was filling 2000 but they upped it to 2500 cause that's the "norm" - will it eventually settle and become unnoticeable?

3.  I'll say something nice about PD now; I am feeling MUCH better than I was on hemo.  I feel like I'm alive again and I want to get out and do things.. but I can't because I'm a slave to this 5 a day schedule.  I know the cycler will make that problem go away - I just can't wait to get there!  1 week down, 3 to go!

I think that's about it... apparently I just wanted to vent to some people who understand  I really am much happier on PD, just have to remember where I've been and be thankful I'm here. 

[kellyt]

I'm sorry I don't have any experience ior advice in this area.  I wish I could help.  It all sounds very frustrating.  I  wish you luck.  Someone here will be able to help with your questions.  Hang in there.   

[Laurie]

Congratulations on making it through the first week, it will get better.
For the first couple of weeks, I had my husband change my dressing. The thought of doing it myself terrified me. As time went on, I got used to it and started changing it myself.
The fulness feeling went away for me after about a week. I had no appetite and horrible back pains. I was so miserable.

I hope things get better for you soon. 

[circleNthedrain]

Hi Saveme...It will get better.  I did pd for about 10 years and it worked really well for me.  It will take a little time to adjust to that full feeling.  I used 2 liter bags for a long time, 5 exchanges a day, then switched to 3 liter bags.  I even adjusted to those!  I only used a dressing in the beginning but it never bothered me to change it.  I had several minor exit site infections over the 10 years but I never got peritonitis.  Hang in there...it will get easier!

[MiSSis]

Hi Saveme,

I've been on PD for 5+ years now and I remember having some discomfort when first filling but quickly became used to it.  I have also filled with 2L only.  I'm 5' 4" and about 135 lbs.  I'm not sure about 2500 being "normal" instead I think your fill amount should be adjusted according to your weight and height.  Maybe others here have some info on their fill amounts that they can share. 

As far as changing my dressing, it's old hat now.  I don't even think too much about it, really.  It was a little uncomfortable at first just because the site was tender from the surgery but I wasn't ever squeamish about changing it.  I think getting Peritonitis from your exit site might be considered rare.  You would have to develop an infection that would then travel down the tunnel and infect the peritoneum.  Good, clean technique while loading your tubing and connecting to the cycler would be more important issues, I think.  Also, I know that my worst case of peritonitis came as a result of constipation so this is some thing you should definitely be conscious of.  I take a stool softener with a mild laxative every day just to be sure that I don't have that problem again. 

I hope things continue to go well for you and I agree, I'd hate to have to go back to hemo too.

[peleroja]

I gotta be honest with you.  The only time I ever wore a dressing on my exit site for the past 5 years is the day I saw the doctor!  Never had a problem until I developed a hernia (unknown to me) and it became infected and gave me peritonitis.  Now I'm temporarily (I stress that) on hemo and can't wait to get back to PD.

I never felt the full feeling, but then I was on 2000 for nearly 5 years.  By the time they upped me to 2500 on the cycler, I had lost enough weight that there was now some place for the fluid to go.

Hang in there, camper!  BTW, I was doing 6 exchanges a day when they literally forced me to go on the cycler.  Once I figured out to put it in the hallway because of the noise, it was a piece of cake.

[Savemeimdtba]

Thanks for the replies guys I know I'm probably over worrying about the exit site... but if something can go wrong it usually happens to me so I'm scared. I got peritinitus before I even started doing my PD exchanges so ... grr argh.   It's getting easier to deal with changing the dressing as I do it more and more - I guess as with everything, it just takes some time.  I can't imagine not wearing a dressing... its been about 5 weeks since the surgery and the area is still kind of crusty so I'm really timid about it. 

Random: I can't wait to go swim in the ocean though!  I never cared for the ocean before but ever since this all happened, I just want to experience everything!

[andykinney]

Hi, Saveme.  I know what you mean about exit site infections.  When my dressing was first removed after the surgery to insert it, I had an infection.  After that supposedly healed, I had several bouts of peritonitis that I attribute to the original exit site infection.  HOWEVER - after it got better it has stayed better for the last 2 years (I've been on PD since 10/06).  Haven't had peritonitis since, knock wood!     Oh, btw, I don't use a dressong at all any more on the exit site unless I'm going into water

As to fill volume:  when I was doing only manual, I started at 2000, tried to get to 2500; was okay with the overnight 2500, but got sick to my stomach when I tried to use 2500 during the day.  Since I went on  the cycler, I can use 3000 for my nighttime fill, but have had to go back to 2000 for the final fill because of the upset stomach and vomiting.  I think it is different for everybody and your PD nurse should work with you to determine what works for you.

Hang in there!  It's so great to be free during the day, to be able to work without having to be "special;", especially in these economic times when people might decide they can do without you if they don't see you on a regular basis.

[Savemeimdtba]

Thanks for the reply Everything is going great now!  Exchanges have become much easier, drain pain has almost completely gone away and I start training on the cycler next Monday!  Very excited! 

[rookiegirl]

Glad things are looking up for you.

[LightLizard]

the cycler rocks!
 

[Swee_tone]

I can't offer help, but glad to hear things are going better for you! Keep positive!