I think I am doing it wrong

[kimcanada]

Well I am in my 3rd week of PD, I have a few issues...

I haven't been to my ideal weight since I started PD, my blood pressure was up in the 150-160 range, and I have had gas to beat the band.  Sometimes I can't hardly straighten up.

Yesterday I decided that I would try the 1.5 solution... well that took care of the cramps (gas) but now I am up almost 3kg.  Man o man this is tough, any suggestions?

[kidney4traci]

Sorry Kim, I don't do pd.  But  for ya!  Sure someone will chime in on this from the site.  I do love this group. 

[KICKSTART]

Firstly is it gas or cramp? If its gas its nothing to do with PD , if its cramp then its common , mostly its when you pull to much fluid off , but it doesnt look like thats your case ? You say you tried the 1.5 solution , what was you on before ? How many exchanges a day are you doing ? With PD your weight is difficult to manage it does go up and down , but you must still watch your fluid intake as well !!

[MyRenalRomance]

I'm so sorry to hear about your problems with PD, Kim!   

A little background history:
March 2007:  surgery for arterial vascular fistula in right arm so I could do in clinic hemodialysis (unsuccessful)
May 2007: insertion of Tesio catheter in neck (temporary) so I could start in clinic hemodialysis (successful)
June 2007:  angioplasty to help fistula (unsuccessful)
July 2007:  revision of fistula (unsuccessful)

October 2007:  surgery for insertion of peritoneal catheter (successful)
November 2007:  laprascopic peritoneal catheter repositioning (successful)
Could not drain diasylate. X-rays showed that the catheter had travelled up into my ribcage and had descended and gotten all tangled up in whatever was "in there" (can't recall what my catheter was tangled up in)

March 2008:  removal of Tesio catheter (I felt human again!)

I was doing in clinic hemodialysis from May 2007 until  October 2007, as my Tesio catheter was always meant to be temporary.  My 3 surgeries on my arm were unsuccessful, so my neph was transitioning me to manual PD in late October.  Last in clinic hemo treatment was October 30, 2007.  My first day of manual PD at home was on October 31, 2007.  After my first fill that night, I literally thought I was going to burst!!!  I was waddling, uncomfortably, around and hubby had to answer the door all night as it was Halloween! But that bloated feeling went away as my body adjusted.

I was on manual exchanges from October 31, 2007 until Dec. 17, 2007.  Stood in line for over 4 hours (on 12/17/07) to meet SJ Shark, Steve Bernier - my younger daughter's favorite hockey player - since traded to the Buffalo Sabres.  When I got home, I realized my dialysis fluid was "leaking".  Apparently, 1500 ml dwelling in my 100 lb 5'3" body was too stressful on my body (standing on my feet for over 4 hours with all that fluid bearing down).
Had to go back to hemo until my insides healed.  Once I healed, my neph suggested the Baxter nighttime cycler.  1500 ml is the minimum I sholud use per cycle.  Laying down sleeping with the fluid evenly distributed in my peritoneal cavity is much easier on my body.  I've been using the nighttime cycler since
January 18, 2008.  I love it!!!  No more exchanges during the day! And I get to stay dry all day.  I do have to be on my machine for 9 hours diring the night, so I should  be home no later than 9 pm M-TH to be able to drive my younger daughter to school. Weekends are much more flexible as I can "sleep in" if I hook up later in the evening.  During the hockey season, I made it to 14 home games and 3 playoff games.  On those nights, I was hooking up REALLY late at night, so I would ask my older daughter to drive her sister to school on the mornings after.  (Same for concerts.  Saw The Cure last week!!!)

Please talk to your dialysis center about your problems.  I was having "drain pain" when I first started using my nighttime cycler.  I told my neph and he told me I was the first patient to ever complain of this issue (?!). He had no useful input/advice.  I told my NURSE at my DIALYSIS CENTER, and she said "drain pain" was very common for some patients.  She helped me adjust the settings on my machine, and the new settings helped tremendously! No more "drain pain"! 

I've never experienced gas or cramps.  Kickstart is right - you do need to manage your fluid intake. We all need to!

So, I'm assuming you are on manual PD and do several exchanges per day?  Have you considered, or would you consider switching to the nighttime cycler?

I'm sorry I did not have more helpful advice, and for being so long winded with my reply.

Hang in there Kim!  I'm rooting for ya!

  Charlene

[twirl]

hope you are better

[IUNurse]

With PD you really need to look at the whole picture.  With a higher bp and weight trending higher- you really need to use stronger solution.  The gas/cramps you are talking about I am not sure what that would come from.  I don't know exactly why using a 1.5% would help if it were gas.  But using 1.5% is definately the reason your weight went up so fast.  I would encourage you call your nurses and ask them for help with what to do next.  They can help you decide.  They also may have suggestions for the gas feeling.  Are you on anything for your stomach?  We put all of our patients on and Over-the-counter med to help ease the transition to PD.

[kimcanada]

no I am not taking anything for my stomach, I guess I will call tomorrow , I better start making a list

[rookiegirl]

no I am not taking anything for my stomach, I guess I will call tomorrow , I better start making a list

I had problems with gas and my Neph suggested to take OTC active incredient Simethicone.  That relieved the gassy feeling.  It's very seldom now that I get gassy.

[IUNurse]

We put patients on zantac daily for the first 6 weeks of PD, just to help them adjust.

[mikey07840]

One other thing.... are you constipated?  I only ask because whenever I call my PD nurses about anything, that is their first question. They state that being constipated causes many problems for folks on PD.  Your mileage may vary.

Good Luck!
Mikey   

[hashim50]

I've been reading your PD posts and can understand your questions.  I know that if air gets into the peritoneum it can cause pain in the shoulders but I don't know about gas.  I would assume that the two things have nothing to do with eachother but gas would be more to do with what you are eating.
I had a strange thing happen about a week after I began on PD.  While trying to get on the transpkant list, I was scheduled a colonscopy.  When I got home from that and did a fill and drain, the drain looked like apple cider and I just knew it must be peritonitis.  I called the PD nurse and she came immediately and looked at the fluid and said, oh yes. this is infection.  I began vanco every 3 days and an oral antibiotic.  The PD nurse called after 48 hours and said there was NO infection. Again, after 7 days, no infection.  The strangest thing - even the nephro doc had no explanation.
It was explained to me that I have the liberty to use either yellow, green or red solution.  I use mostly green and find this works the best to keep my UF adequate, but I must admit, I play with it.  I used red the other night and got a high UF in the morning but the day before I had felt congested and noticed my thighs were kinda filled.  My PD nurse wants me to use 2000mL on each dwell but it is uncomforable in my abdomen and so I changed the machine to 1500mL.  She wanted me to keep that amount in during the day, but I can't walk easily with all that fluid sloshing around in my stomach, plus I can't button my pants with all that inside me. So my daily dwell I use 500mL.  I can walk without discomfort and my pants fit fine.  The PD nurse says I shouldn't have problems with 2000mL as I am tall - 5'6 - but it shouldn't depend on height.  Anyway, my next PET should tell whether or not that is sufficient.
The biggest thing to remember about PD is keeping your hands clean before touching the PD catheter when hooking up.  Make sure your clean technique is unbroken.
 

[KICKSTART]

hashim50 ..i noticed in your post you only put in 500ml? thats nowhere near enough solution for dialysis. I can understand you feel full , we all do ,but you must use more fluid , you will get used to it in time (but you never will using only a small amount like 500 ml!!) Buy some pants with an elastic waist if you can do you pants up!!! Im tall and very slim and felt like i was carrying a beer barrel round with me , i couldnt walk upright for the first couple of weeks , now 1500 is no problem ..you really need to increase the amount you put in , to get good dialysis !!!!!

[hashim50]

Thanks Kickstart for your advice and concern.  I will have my next PET on the 16th and I will see what that indicates.  I know that the prescription of 2000mL each dwell and 1500mL dwell during the day was not made for me but a standard prescription.  My kt/V was excellent the last time (even better than on hemo), so that made me want to explore the qmount of fluids I use.  It just doesn't seem very tailor-made and who knows - maybe I can do better!  I can and do wear shorts with elastic waist but I hate the feeling too of walking around with all that fluid.  I look like I'm pregnant and I've never been pregnant and at 57 I'm not going to start now!!  I do have two boys but they are adopted.  Thye dietician told me to eat 100 grams of protein a day aqnd I don't eat anywhere near that - maybe half if I force myself - and yet my numbers are good.  Go figure. I wonder sometimes.
But thanks for your suggestions.

[KICKSTART]

Sadly hashim we all look pregnant !!!Believe me you are not the only one that hates that ,as i like to think i was nice and slim/trendy now i look like i swallowed a barrel ! I just have to keep reminding myself that this is what keeps me alive tho! Yes it seems like the 1500/2000 are standard 'doses' as we all seem to use that amount but it must be for a reason (studies?) I expect you will be able to run this by the nurses when you go for your pet test ..good luck !

[kimcanada]

Well I have had a busy day... my 12:00 exchange was hazy, so I called Halifax, and was sent to the nearest lab to pass in my bag.  Last night the pain in my belly was so bad I decided that I would go empty all night, so they figure thats why I was hazy... while I was at the hospital I was sent for x-rays so see where my cath is laying, lets see if this helps

[KICKSTART]

Its strange you are having these problems , i hope you get sorted , but all i will say is 3 weeks is still early days you are still healing inside. I dont think going empty is the answer at all because then you will feel more uncomfortable, maybe if it gets to bad just dont fill with quite so much ..say 1000 instead of 1500 , at least its better than nothing till they see whats going on ! Did they not tell you straigt away where your catheter is ? I had mine done and saw straight away where it was ..its firmly tucked under my last rib and has been there for 4 years now !!!

[kimcanada]

They did show me my cath, it was just kinda dangling...  I don't think thats the problem.  I will keep you posted, oh they did tell me to go to 5 exchanges to get the fluid down.  My BP is finally better

*SIGH*  I want it to be all settled

[hashim50]

Kimcanada - I am sorry to hear about your difficulty with your PD cath.  Strange about the pain.  When they thought I had peritonitis and my fluid looked like apple cider, they gave me vanco immediately and I had to let that dwell for 6 hours.  As you saw from my earlier post, there was no infection as it turned out.  So have they given you any antibiotic, just in case its infected?  I really did like how aggressive my doc was when he thought I might be infected.  Don't forget, we are our own best doctors.  I'm convinced of that.

Hey Kickstart -  I have to chuckle everytime you talk about swallowing a barrel. That's exactly the way I look when I see myself in the mirror. For the first time in my life, my midriff is bigger than my tits.  Who the hell is gonna want me looking like this - I'm not married or even dating anyone.  The last time I thought I might have peritonitis I couldn't get a hold of the PD nurse and my doc sent me a message to go to the other Davita and get accessed by the nurse or to an ER.  I had to laugh as I am an RN and why would I go to another RN to be looked at.  I can looked at myself, thanks.  I've found that the PD nurses don't know much more than I do about PD, except what they've read in a book or been taught.  And if going empty was so detrimental, then why everytime I need to have a procedure done does the PD nurse tell me to go empty - like when I had the colonoscopy and cardiac cath.  Seems to me they are experimenting sorta.  Maybe its a little less critical for me because of ESRD and I still have 17-20% kidney function left.  Weird how ones pee looks like swamp water though!!

[mariannas]

Sadly hashim we all look pregnant !!!Believe me you are not the only one that hates that ,as i like to think i was nice and slim/trendy now i look like i swallowed a barrel ! I just have to keep reminding myself that this is what keeps me alive tho! Yes it seems like the 1500/2000 are standard 'doses' as we all seem to use that amount but it must be for a reason (studies?) I expect you will be able to run this by the nurses when you go for your pet test ..good luck !

I'm very small (5'0 and 90#) and only do 1000 mL fills.  The first exchange of the day is very uncomfortable, but as the day wears on and my tummy stretches I start feeling better.  I agree that 500 mL seems low, but if the PET test goes well than who knows?  Everyone's different and if 500 mL is getting the job done than that's great! 

If it's NOT getting the job done than I would recommend upping the amount of solution you keep in slowly.  Start with 500 and increase a little everyday until you are where you are supposed to be.  That's how I did it since 1000 mL was really hard on my tiny frame.

[IUNurse]

Hashim, I agree with the others, you need more in your peritoneum to achieve adequate dialysis.  500 cc's is what they would use for a small child.  I am treating a patient who weighs 72 lbs (5 ' 6") and she needs 1100 cc's to acheive adequate dialysis.  Yes, people are different- but I doubt 500 cc's is going to do it.  I don't know, but maybe you can do more exchanges if you are putting a smaller amount in.  You said you are do for your PET test soon?  I am guessing you mean modeling since this determines if you are getting enough dialysis.  The PET test is to determine what type of membrane your peritoneum is.  I hope you have a high-transporting membrane.  Patients who have high-transporting membranes usually run on the machine and are dry for part/all of the day.  That is comparable to  what you are doing. 

Kimcanada:  have you gotten the results from the bag you sent to the lab?  Sounds like peritonitis to me.  I will tell you that being empty (especially with peritonits) actually causes more pain that having fluid in.  I would press to get your lab results in a hurry.  If my patient got a cloudy bag we would start antibiotics ASAP.  Before we even got the test results back.  A cloudy bag is almost always peritontis. 

[kimcanada]

I didn 't get the results back yet, but I don't think its peritonitis , I think its because I went empty overnight... all my bags are clear now

[IUNurse]

Kim, that is odd- but glad you are doing ok!  I will say ANYTHING is possible!

[kimcanada]

well I did get the results yesterday, and they were ok, so I guess I was right...  my nurse thought it might have stired up something being empty

[MyRenalRomance]

   Kim,
How are you doing these days?
MRR (Charlene)

[peleroja]

The first thing that occurred to me re cramping was are you remembering to prime the line?  That is, take off the clamps, allow the fluid to run through to a count of 5, then replace the clamps.  My nurses told me that removes air from the lines and would eliminate cramping.  Also, do you heat your dialysate?  The nurses also said cold dialysate could cause cramping (although I gotta admit that I haven't heated my dialysate for 4 years and it's never bothered me).  Some folks could have a more sensitive system than others.

I once had blood in my bag and they never did figure out why.  The doctor came to the conclusion that maybe the end of the catheter had "scraped" the inside of my body and it released a little blood.  Sometimes there simply is no real explanation as to why things happen.

Hope you're feeling better now.