newbie PD questions

[justme15]

well sort of newbie, I've done this before but it was 11-12 years ago and things are a little different then how they were.

Is there a target UF?  What are some of your UFs?

How long does this drain pain last?  I had it with 3 out of 4 drains last night. I had to bypass these drains because i couldn't stand the pain.

I have to enter my weight and bp in the machine prior to starting my cycler.  Should this be my dry weight or weight at the end of the day?

btw, I see my PD nurse on Friday, so I could ask her these questions, but I'd like to see what you guys have to say 

[Joe]

Hey there justme15! I've been practicing PD for a year, so while I'm not the defining expert, I do have some experience.
My team has not given me a target UF to hit. I typically pull about 1300-1700ml a day. My Neph and my PD team seem to be ok with those numbers, and my weight stays pretty steady with that. The thing that determines whether you are pulling enough is your weight, you should see it stay steady from day to day, or maybe fluctuate a pound or two. If you see more than a couple of pounds change in a day, you a seeing a change due to fluid retention or loss. I can typically tell how my cycler session has gone by what my weight is in the morning. If it jumps up 3 pounds or more, I know I've had a negative UF for the night. I get the fluid off when I do my manual drain in the morning, so not a big deal - at least it hasn't been a problem yet.

As for weighing, consistency is the key. I weigh myself every morning right after I disconnect from the cycler. That gives me a constant reading. I'm stripped, carrying 1500ml and haven't eaten. Right now that gives me ~182 lbs. I know if I'm much over or under that, it's fluid fluctuation.

As for drain pain, that's caused by your catheter floating up against the side of your peritoneum and creating a suction (and it really sucks  ) The way I break that is to pinch off the patient line and do a shake and shuffle to move the line around. It usually clears it up on the first try, sometimes it takes more than one, but not often.

Hope this helps, and good luck!

[amanda100wilson]

there really isn't a goal, as long as you are draining out.  your weight and blood pressure should determine if you are getting adequate UF.  if your weight and blood pressure go up, you have swelling in your lower extremities, then this is a sign that you may not be ultrafiltating adequately.  yourUF will also be down if you are restricting your fluid intake too rogorously since you lose about 1 kg through insensible loss I.e. sweat etc.

Dreain pain does get better.  try slowing drain down by adjusting the flow using the thing that you turn flow on and off with.  drain pain is more noticeable when using stronger bags. 

your dry weight is your weight when you have just finished dialysis.  a way to tell if you are overloaded with fluid is puffiness in your legs.  if you are too dry, if you pinch the skin on the back of your hand, when you let go, it doesn't Springs bqck'

[justme15]

thanks for the replies!!  I just wonder if I'm supposed to be keeping track of my dry weight, or my 'fluid' weight.  my weight in the morning after dialysis is usually 2-4lbs less than at night. 
My UF is usually a little over 1000 mL. but if I could tolerate the drain pain, I might be able to pull off more.  even with this UF I have been continuing to  lose weight every day... hmmm. i guess it will take some time for my weight to stabilize.  my bp is still high.

Can a non functioning kidney transplant cause your bp to run high?

when traveling with the cycler, is it checked or should it be carryon?

They say that PD helps retain your kidney function, but honestly, since I've started PD (about 2 weeks now) I feel I am urinating less.

Joe- how much do you drink during the day?

[bleija]

i kinda feel like your uf depends on ur size and how much residual kidney function you have. when i was on pd i averaged 1000 to 1500. but still put out 1000-1500 in urine too.
i think with the less urination. i think dialysis takes some of the pressure off of your kidneys, and the bulk of waste comes off during dialysis. just my opinions not facts

[Joe]

Again, the key to your weight is watching for the fluctuation from day to day. Just be consistent in when and how you weigh yourself. And you will typically weigh less in the morning than at night, especially if you weigh before you eat. I just do it first thing in the morning because that is when I take my BP for record and record all my stats from the cycler. That way I'm done with it.

I, too, lost urine output after I went on PD. I still urinate, but only about 500-800ml a day. I don't really track how much I drink during the day and the team hasn't told me to cut back on anything. Again, as long as my weight and BPs hold steady, I'm doing ok.

When you travel, your cycler goes as a carry on. And it doesn't count against your carry on quota. My Baxter Pro-choice cycler fit in the overhead of the 737s we flew on when we went to Florida. It's heavy to get up there, but it will fit.

[justme15]

thanks Joe!!

[bleija]

the airline we flew on told us one bag each so my hubby carried my machine a bag he made himself and i carried his bag and we had a larger bag with all my clothes and supplies we paid for i think it was like 10 or 20 bucks.

[Joe]

According to the FAA, your cycler is considered medically necessary equipment and as such is exempt from the bag count.

[amanda100wilson]

You should definitely NOT be charged for your cycler or any medical supplies when flying.  one word of caution.  if you have medical supplies that take space and need to be packed in a case, do not pack anything in with it that is not medically necessary because then you can be charged for ha case.  any issues and you need to ask t speak to the Complaints Resolution Officer.  there must be one present at he airport and they are more attuned to the law than some of the check-in agents.

[bleija]

interesting... me nad my husband travel light anyway. 3 bag his mine and the cycler) and it worked out becaude we had to bring back all the chistmas presents for the rest of the family. definitly good to know. my dialysis nurse at the time sure did not tell us any of this.

[blondie1746]

When I first started on PD, I did have drain pain issues.  They got better the longer into I am.  I have now been on PD for 1 year.  I use the cycler at night.  Originally I had to have 1200 ml in during the day, but for the past 3 months or so, I have been able to go dry during the day.  Either way, I always weighed myself first thing in the morning, after I disconnected (and pee'd).  About 2-3 months ago, I was having severe drain pain.  I was in tears sometimes.  Found out my catheter had shifted from the right side to my left side.  thought about having surgery to correct it, but within a week, the pain got better.  I know a lot of my drain pain is directly related to whether or not I am constipated.  So, I take a stool softener every day to help me stay regular. 

As far as the total UF, it all depends on your swelling issues.  I had very bad swelling in my feet, ankles and up my legs when I first started last year.  I had to watch my fluid intake (which was hard because I drink a lot of water) and take water pills, do an extra manual exchange during the day, etc.  We finally got the swelling under control and now I don't have any swelling issues.  I drink as miuch as I want.  During the bad swelling, I would use red bags and usually have a total UF of 1000 or more in the morning.  Now that I don't have that problem, I use green bags all the time, and usually have a total UF in the morning of anywhere from 300-800.  Probably depends on how much I had to drink that day, or how much sodium was in my diet. 

It seemed to take forever to get myself regulated, but now I love the cycler, have no swelling issues, and usually very little drain pain.  I had to do hemo in the hospital for 3 weeks while I had a stem cell transplant.  I hated it.  I hope to be able to do PD forever, although I know my membrane might no hold out that long.  Good luck to you as you get started.  It will get better with time.  Let me know if you have any other questions!