I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: tbarrett2533 on June 30, 2011, 11:50:49 AM

Title: A step by step PD experience!!!
Post by: tbarrett2533 on June 30, 2011, 11:50:49 AM
HI ALL  :flower;

I have my PD cath placement surgery tomo at 7:45am!!!!!  :yahoo; :2thumbsup;

after a few infections, trips to a few doctors, scheduling and rescheduling (original surgery date was June 8, 2011) the official day is tomo!!!

I will use this thread to post my experience with hopes that it will help anyone who was like me and "on the fence" with doing PD or not.... so stayed tuned to this thread.. :)

wish me luck!!! 


Day 5

OK yesterday I spotted some drainage and got freaked out (b/c that stupid instruction sheet that if you have any drainage call!!)

so that is what i did and I went right in to the surgeons office and well come to find it, its OK and "normal" so she showed me how to tape it off (which BTW i really hate) so if there is any suggestions on how to tape it off and not have it so balky (sp) that would be great.  She also removed all the stitches  :bandance;  she told me that she would like to see me wait a few weeks before I use it (which I knew) she informed me (which I already knew  ;D) that the PD nurse will be the one to tell me when I can use it  :laugh:


I also decided that yesterday was enough of "in the bed" and I pushed myself, I ran errands, and did my all time fave thing .... clean my house (no joke it really is my fave thing to do  :P)  shoot I even made a cake  :cheer:  and last night well me and my man, well you know  :o ;) which I should have waited to do that b/c it literally felt like my stomach was falling off!!! (but it was sooooo worth it  >:D)

today I went to the park and walked around.... just a little pain, but nothing that i can not manage :)

till tomorrow  :waving;


Day 6 (and I am going to copy and paste at the top of each of my posts)

PD training starts Monday July 18, 2011!!!!!!!!!!!! 

pain is very minimal and I am getting super excited to finally be done with in-center Hemo!!!!

until tomorrow!!!!!!!!  :waving


7-12-11
Hi all!!! (just checking in)

its been over a week since I had my placement surgery......  things are going good & i am getting so excited to be one day closer to starting PD!!!.....


There is no pain at all now  :yahoo;
I am showering daily and simply cleaning the exit site daily

Until next time

 :waving;


7-14-11

while at the D today the nurse changing my bandage informed me that it appears that I have puss coming from my exit site and that its really red.  She stated that it "appears" that I have the start of an infection........... Made an appt. with the surgeon for tomo at 1pm...... uggghhh I really hope that this is no idication of problems to come   :bow; :stressed;

until next time

 :waving;


7-19-11

so I had my first day of training yesterday (Baxter) and we made it to chapter 4.... so dry & boring but it has to be done  :puke;
I drained and filled the dummy 2 times with step by step instruction from Mandy (PD Nurse) learned and have already memorized "SEAL."   :clap;  got some quik tips on cutting open the drain bags (to get rid of the fluid faster) after an exchange is complete  :cheer: 
we talked about my solution strenth, & amount until my first PET test in two months, and we even discussed the cycler (which I might even consider)  :yahoo;

I have day two of training tomo from 7am-9am and will post how it goes......

It's getting closer and seems to be more of a reality now  :bandance;
We anticipate August 1, 2011 :bow;

until next time  :waving;

Oh yea I almost forgot.... no infection.......  :yahoo;

7-20-11

So Much happened today lets see where do I start...........
1.  Transfer set is hooked up
2.  did my Baxter tests for Chapter's 1-4 and aced them all.... super easy tests though  :clap; :2thumbsup;
3.  Drained and filled the Dummy four times and the last 2 times I did not have to have Mandy tell me what to do  :bandance;
4.  my first FLUSH!!! was today as well....... We did yellow solution (1.5) 500 in, then drained 500 out, filled again with 500 then drained and we did it a total of 4 times for a total of 2000 in and back out! the problem that I felt was pain in my upper left hand shoulder kind of a dull pain that was present with every fill and drain, Mandy says that it is "normal" as it is your bodies way of saying, "what the heck is going on here." HAHA  :rofl; :rofl;  There was A LOT of Fibrin along with some blood and Mandy also said that was "normal" b/c I just had my Cath put in and this was the first drain and fill.  As we got to the fourth drain the solution had no blood in it and no fibrin either.  The solution was clear as well  :bow;  All in all I think my Flush went very well and my drains and fills went super fast which according to Mandy means that I have a good cath so that is a super plus!! :bandance; :yahoo; :thumbup;  We talked about the purple (long dwell solution only) and the dreaded red!! we did Chapters 5 and 6 along with the tests which of course I got all right  ;D

I go back Friday from 7-9am for more flush's and Monday I will have my first flush with me doing the whole thing.... I am nervous and hoping and praying that everthing goes PERFECT  :pray;

Until then,
 :waving;
 
7-25-11

 :bandance; HELLO

 Alot is going on over here with my little PD adventure!!!

Friday's training session went a little like this.
1.  I peed on myself b/c I forgot to close my transfer set before trying to unhook... Mandy said she let me do it on pourpose and that it was a rookie mistake and now I won't do it again (she was right  ;D)
2.  Dwelled for about 1 hour with 1500ml in, drained with NO PAIN!!  :bow;
3.  Discussed and practiced on the dummy how to inject medications into the bags of solution (too easy)
4.  went over the flowsheets (how to fill them out)
and drained and filled the dummy at least 6 times (if not more) with NO prompting from Mandy  :bandance; :2thumbsup; :yahoo;

my weekend was amazing, went to the casino and won $140  :clap; had NO problems with anything!!

Monday's (today) session went something like this....
1.  Dropped the friggin cap (of the dummy) and freaked out
2. Filled myself with 2000ml yellow (1.5) solution.... wicked pain the whole way in  :'( (in the shoulder L hand side)
The PLUS the entire fill took 6 minutes and that was with me slowing it down by Turning my transfer set off a little
the second all the solution was in I felt super full and began to cramp (like menstrual cramps) and my tunnel and exit site were so sore that I thought I was going to pass out so I look down and what do I see....... blood coming out of my exit site.......  :thumbdown; :stressed; I freak and Mandy suggests that we drain it out right away..... the PLUS, my entire drain was 8 minutes from start to finish but the pain was out of this world it felt like menstrual cramping times 10!!! as a direct result of this blood Mandy says that we "may" have to push my start date out  :'( >:(  I really hope not  :pray; but totally understand if we do I want to be safe not sorry!

we went over how to place my order, I took my pole, thermometer, scale, BP kit, & blank flow sheets home and set it all up in my corner where my treatments are going to be.... I think I have the best set up and I wish I knew how to upload pics on here so I could show it off to people!!!  ;D

the rest of the day I have been in terrible stomach pain....... I feel super crampy, and it literally feels like someone is throwing knives at my back  :stressed;  :puke;   I don't know what the heck is going on here, but I am scarred and unsure and super worried so if I do not feel any better by treatment time tomo (12:30pm) then I will let Mandy know and we will take it from there I guess!  :'(

I think that about covers it, next training session is Wednesday and will post my next journey!! 

here's a short little rant:  :rant;  I hate what Kidney failure has done to my life and I hate how I never ever get a break from it.... I am already sick of it and can not even imagine having to spend the rest of my life living like this..... the thought of if just makes me wanna scream, cry, yell, punch things, & give up  :stressed; end rant stayed tuned to my next rant  ;)

until next time

 :waving; 
7-28-11

Yesterday at my training session, I filled myself with 2000ml yellow (1.5), dwelled for 1.5 hours, drained and my fill was 7 minutes long & my drain was 6 minutes  :clap; :clap; Oh yea the only pain I had was right at the very end of my drain & I just clamped off super quick & it went away  :bow; 

I practiced on the dummy like 16 times  ;D and I feel like i can do an exchange in my sleep now  :o

Mandy is "letting" me go the entire weekend on my own as a practice run  :clap; :yahoo;

soooo what that means is today SHOULD (if everything goes perfect, which it will) be my last day at in-center Hemo  :bandance; :yahoo; :2thumbsup;

I have to come to the center Friday at 9am then when I leave, I am leaving full  :yahoo; and I am on my way to my trial!!!  wish me luck

until next time
 :waving;



Friday 7-29-11

so as we speak right this very second I am at home full with 2000ml yellow (1.5)  :yahoo; :clap; :flower; :cheer:

I went to my training session at the center from 9-11am and she sent me on my "trial" run home I have the rest of today, Saturday, Sunday, Monday and I got to go back in Tuesday at 9am to report back how I did.

I am so excited and scared at the same time!!!!!

Tune in to Read about my progress :) 

until then7-30-11

My first night all by myself with PD........  :yahoo;

I have TERRIBLE I MEAN FRIGGIN TERRIBLE drain pain... however I am lucky to only have it right at the very last drip, so I just clamp off really really fast!!
I also noticed that when I am filling I had terrible pain in my stomach (felt like menstrual cramps) in 2 out of the 4 exchanges that I did yesterday, so what I did to try to help the pain was 1.  stood up, then I closed off my transfer set just a little and that seemed to ease the pain......... I did all yellows (1.5) 2000ml for each exchange which went like this:

11am- 2000ml out
3pm-2100ml out
6:30pm-2300ml out
10:30pm- 2400 out

total UF 800ml  (which I think is about "normal") I hope anyway???   ??? ??? :waiting;


Now last night we went to the Casino (lost $150  :thumbdown; booo :() so when we got home at 3am I did my first exchange of the day at 4am which I drained out of 2300ml.... woke up and did my second exchange of the day at 10am, drained out 2300 and filled with Green (2.5) 2000ml... I filled with Green b/c my face was just a little bit puffy and my BP was running just a little bit higher than "normal" for me... I am contributing that to the 5 cups of coffee that I had while at the casino, but no one really knows   :rofl;

today I am headed out and will not be home till about 5pm soooo here's to hoping that I do not die with that long friggin dwell   ;D

All in all..... i have had NO MAJOR problems (knock on wood)  :2thumbsup;   :cheer:

solution is so clear that it is scary  :o

Oh yea one thing that I am noticing is that I have no appetite at all..... I am so "puffed" up with Solution that not only do I look pregnant, I feel like it..........I have the worst full feeling in the world which I am hoping goes away with time b/c I can't wait to eat me some potatoes, tomatoes, & banana's!!!  :2thumbsup; 

And I have never been more excited to scream that today is the first Saturday that I have off in 10 months........ see ya later in-center Hemo!! I sure will not friggin miss you and your stupid needles!!!!!  :flower; :cheer: :clap; :2thumbsup; :yahoo;

Dialysis has controlled my entire life for the last 10 months & now I am taking my life back!! so screw you Kidney Failure!!!!!!!!!!    :Kit n Stik;

until next time

 :waving;







8-3-11

Well I am fast approaching my first whole week on PD  :bandance;

I had my meeting with Mandy to see if my trial period was "OK" and I got my lovely 24 hour urine catch bottle (boy I sure do not miss doing them  :'( ) (and I should be grateful that I still make urine)
and she said my numbers were great and did not absorb at all!!  :2thumbsup;
my weight however is up by 2.1kl since Friday, now I am not sure if its fluid or all the potatoes, tomates, bananas I have been eating  :waiting; so I have been doing greens (2.5) like crazy to see if I can get it off!! I gotta do something.... maybe lay off some of those foods that I just love and have not had since starting dialysis

My total UF went like this:

Friday: 800ml
Saturday: 1400ml
Sunday: 1200ml
Monday: 900ml
Tuesday: 1300ml (and I absorbed for the first time 100ml in the first exchange of the day)

The drain pain is TERRIBLE!! I hate it!! :boxing;
the fill pain is CRAPPY!! I hate that too!!  :boxing;
my BP is PERFECT, not puffiness in my legs/feet
no temp
Exit site is looking great  ;D
I even had sex while full!! and well it was like nothing has changed (thank god for that) the one thing that I enjoy that I can still do!! YAY!! :cheer: (I do not like the big ol' belly... yuck!! I am thin so it is really noticeable on me and I have yet to "allow" my boyfriend to touch me below the boobs or above my belly button, or take my shirt off....... (I think its gross and wonder how he would ever still find me attractive  :'( ) I have that 12 inch transfer set hangin off of me and then I have the stupid panty hose cut off top on (b/c I hate the tape) eww its so gross!!! (god I hate this sh*t  :'( :'( )

 

I am not going to sugar coat it, it does really suck having to do exchanges every 4-5 hours I feel like my life is on a time clock!! however I really hated doing in-center hemo so I just think about that when I start to think PD sucks!!

I feel really great and I sure do not miss the 9 hour recovery times at all that I had with Hemo!!!

OH I almost forgot... I got my first order, holy cow.... I have 47 boxes of medical supplies (Jesus I hate kidney failure  :'( ) in my perfectly organized, clean house!!

 
Welcome wbdoug aka: Bill to the lovely world of PD as he had his Cath placement surgery today!!  :welcomesign;

Houseofdialysis: I would really love to hear your thoughts on switching from manuals to the cycler??? how is the drain pain? fill pain? and anything else you can offer would be great, b/c I am really hearing some horrible things about the cycler with the pain....... YIKES!!!

until next time
 :waving;


8-8-11

Had me a little scare with my Friday night exchange...... blood in the drain bag....and I mean ALOT!! so being the PD newbie that I am what do I do?? that's right I freak right out and start thinking of the absolute worst.... :( :'(

slept like crap then wake up to do my first exchange and even more blood.... YIKES so while I am draining I am dialing my unit and spoke to Mandy she told me to come over and get some heparin, do some rapid exchanges with room temperature solution (which I did not do the latter b/c I knew that if I did, I would have shoulder cramps like crazy   :urcrazy;

went and got the heparin, did 2 rapid exchanges (with the heparin) and by the 2nd one it was Rosy.... that really made me smile  :cheer:

So after speaking to MAndy I was unsure why this happend to me..... 1.  No period, and 2.  I did not lift anything heavy so what the heck... so what do I do...that's right I rely on my fellow IHDers   :bandance;

Turns out it appears that i was prolly ovulating (I counted back from my last period and it was 17 days from it) so we shall see if I get my period within the next two weeks.....

so everything appears to be going very well...... I love PD!! I really do....... I feel so much better however since I noticed this blood I have had terrible pain in my entire right side from the shoulder down and its worst when I laugh, or cough and its not all the time...... very random and  I don't like it  :thumbup; so I decided that if its not gone with in a few more days that I will call my PCP and schedule an appointment. 

OK so here is  the problem that I seem to be having... SEX... I know I know we need to keep it PG however its not so much about Sex, its about approaching my BF with my concerns regarding sex with this dumb cath....... What I mean is he wants my shirt/PJ's off during, I keep refusing.... I mean do I need to yell it at him so he gets it..... I can tell you that I would not be turned on by seeing something like that so if anyone has any suggestions on how I can approach him with this that would be EXTREMELY helpful

Until Next time
I think I am going to change my name to PD lover HAHAHAHAHAHAHAHAHAHAHAHA  :rofl; :rofl; :rofl; :rofl; :clap; :bandance; ;D

 :waving;



8-14-11

Ran into a little set back/Problem...... see other thread :(

In short (B/C I really want to have everything in one thread) I will do a quick summary of what happend

1.  Had pain and shortness of breath for about one week
2.  called the center finally Thursday eve and my Dr. & Mandy were on vaca until Monday
3.  Center staff called on-call Neph and I was told to drain and come in for a Hemo treatment the next  :puke;  >:( :'(  The nurse told me that there were no chairs open for me and that she would have someone call me in the AM to let me know what they were going to do with me
4.  I cried... I mean cried  :( :'( b/c they told me that PD solution could be leaking into my lungs  :'(
5.  Friday 9am the Center's director Joanne called me and told me that she called my Dr.  on vaca and that I could wait for a Hemo Treatment until Saturday
6.  I cried and cried and cried and cried somemore.... got super sad and depressed b/c I really really like PD and was enjoying my freedom and just the thought of having that ripped from me.... was breaking my heart!!!!!!!  :(
7.  Went in for my Hemo treatment..... cried when I got up at 4am.... cried when I got there, cried when they hooked me up, cried during....... then was sick and in bed for the remainder of the day (Just like any other time that I did Hemo)
8.  NO treatments at all today for me.... I sit here dry aka empty
9.  waiting to hear on Monday morning what they are doing with me
10.  Hoping and praying that I can go back to PD tomo!!   :pray;

 :'(




8-15-11

 :bandance; :bandance;  ;D

Joanne called me at 9:35am and told me that she spoke to Dr. Sadovnic and that I am to fill with 1500ml instead of the 2000ml and see if I feel a difference. I asked about Hemo and she said NO more for now!! so hopefully I will be saying see ya later you nasty Hemo  :boxing;

Dr. S  said that he thinks (b/c the pain and shortness of breath went away about 2 hours after I drained out) that my diaphragm was getting pushed on by the PD fluid and that is why he wants me to only fill with 1500ml, so I am to do my 24 hour urine catch (which will be the first one) and go in for some lab work on Thursday.

I was told to call if there is any problems with the 1500ml fills.... I am praying  :pray; that I do not have any problems!!!
8-25-11

Just a quick little update:

I have been filling with the 1500ML and no pain, shortness of breathe  :clap;

Recently though (since yesterday) I am absorbing like crazy!!!

Today went like this
1.  1200Ml
2. 1400ML
3.  1500ML
4.  1400ml
5. will be done at 11pm. 

Now, I do 4 exchanges a day however, I decided to do 5 today with all Greens to see if this helps  :waiting;


What I do not understand is why I am absorbing all of a sudden??

Answers anyone??
tips??

prior to yesterday my total UF's were 1500ml-2500ml then this crap I don't get it, any advice on this would be great!!

I have my first clinic visit tomo at 1pm  and you can bet that I will be talking about this

I just hope that I can continue to do PD as long as possible... I gotta say at first I thought that this was a HUGE burden in my life, but now it has just become a part of my life and I do not stress over it anymore!!!

until next time
 :waving;
Oh PD how I have missed you  :lol; ;)

Until next time

 :waving;

9-8-11

I went to my first clinic visit and had my first months labs on PD which were PERFECT!!!  :cheer:

Neph told me that I am not getting enough dialysis, but that he is not that worried about it b/c of my residual kidney function is carrying me!

I am absorbing like a crazy person and I just don't get it, my weight is up, fluid in my legs-feet (but not too bad) my BP is perfect
I spoke to Mandy and she just keeps telling me not to worry about it b/c I have my first PET test this month & after that we will have a better idea of what my prescription will be!

Oh yea I am back to 2000ml fills and so far no pain!!!
Neph says that he wants me even higher than that........ :puke;
Oh yea, Baxter is RETARDED!! .... they send me 20 boxes of green for the cycler (I do manuals) I call them, then they send  me 20 boxes of yellows when I already have 15 yellows and needed only green this month!! I call them, and they finally got it right, however I now have 40 boxes of crap that I do not need and I have to store it until next month when a Baxter driver delivers my shipment!! UGGHHHHH!!!

All in all, I feel pretty good and I really do love PD!!!!!!!!! thank god for it!! :bow;
Until next time
 :waving;



9-19-11.... Update

I am just about ready to throw in the towel with PD  >:( :(

Last week I started to have the absolute worst pain when I filled and drained it literally felt as if my insides were being riped out of me  :'(

I called the center and was told to get on all fours and rock back and forth a few times to see if that would help..... I did this twice and then I was right back on track.... no pain, no problems  :2thumbsup;

then yesterday arrived and the pain is back, yet much worst and when I went to drain, nothing came out....... I kept trying to get solution out for almost an hour then finally I went to the ER which they did not even know what PD was so they had to call Mandy in on her day off and once she got there and hooked me up she was able to get 700 ml (of 2000ml) out in 65 minutes b/c it was a slow drip that she literrally had to milk to get that out........ for everyones information my drains have been running on average 10-15 minutes, and my typical fills last the same so to have a 65 minutes drain is not "normal" for me

Mandy filled me which the pain was out of this friggin world and lasted another half hour......... I got home and go to bed wake up this AM, managed to get 1700ml (of 2000ml) out in a half hour, I fill in about 15 minutes with 2000ml  (with pain that you can not even imagine) go about my dwell......
then at my next exchange........ I go to drain and NOTHING comes out..... i stay hooked up and keep trying for the next hour and NOTHING so I call Mandy and she has me come in, she manages to get 2100 ML out in 2 hours!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

WE fill the pain in out of this world (as if my insides are being pulled from my body)
my Neph comes, I tell him all about my problem the first thing he says is "back to Hemo"    :puke; I freak out and tell him that I don't want to go back to Hemo and that I hate it, he then says, "Well I am not going to let you go weeks on end without a dialysis treatment."
Then he gives me a slip for radiology which I will go in the AM.
and if nothing can be done to fix this pain/no/slow drains in a fast amount of time then I will not have a choice in the matter, I will have to go back to Hemo or die...... I guess it's my choice  :'( :(

I do not know what to do, I am scared, worried, stressed and making myself even more sick about this....
for the record I am not constipated, tried every postion you can think of to try to get these drains to work......
I just feel like giving up with the whole thing, maybe some people can do PD and maybe some can't.........
I am praying something good comes my way   :pray;

until next time

9-26-11 Update:

OK I am hoping that I am not jumping the gun here, but things APPEAR to be back to "normal" whatever the hell normal is  ;D

The pain that I was feeling in both my drains and fills slowly went away over a 3 day period so that was good  :cheer:
After reading on here I decided to do a fill with some heparin (1ML) and instead of doing all greens I mixed it up with some Yellows and what would you know, I started (slowly) to get fluid off and in record time (yesterday I did an entire exchange start to finish in 21 minutes and drained a total of 2700ml)  :bandance; :cheer: :clap; :yahoo; :thumbup;

so the past 3 days went a little like this:

UF total's

2000ML
1900ML
1800ML

and the most random thing of all my overnight dwells that I always absorbed like crazy....well i am pulling off an additional 400-600 ML!!! Its so crazy  :P but I am loving it!!

I am praying and hoping things still keep going like this!!!   :pray;

Today we were in a Antique bottle show and sale about 2 hours away from our house and for the first time I did two exchanges in my car......now this was very hard (I have a very small compact car)  but very doable.  I made sure that I sanitized everything down, closed up the windows and made my BF mask up.........   

I began to complain while doing one and my BF speaks up and says, "Would you rather that we not be in this show and I can take you back to the center and you can get poked with the needles and sit there for 4 hours?" 
ummm hell no!!!!!!!!!!!!

so far I have took my PD to my moms, my boyfriends mom's and this show and so far so good...... I am just really really really careful and I make sure everything is as clean as it can be!!!!
this is the freedom that I was talking about right here!!! I love knowing (especially now that I actually went far away from home and did exchanges) that I can go anywhere and do anything that I want and still "do dialysis"
PD almost makes me feel normal again minus my 12 inch power cord (that's what my BF calls it  :rofl;)  and the 50 boxes of medical supplies and the careful math calculations to ensure that I have enough of everything that I need
In all seriousness, PD is not that bad and I really like it compared to the dreaded awful in-center Hemo  :puke;

my labs were alll perfect!!! Phos 4.2 potassium 4, calcium (lil high) 9.5, albumin 4.4, BUN 31, PTH, 225
To be honest, I was just a little bit worried about my labs going from Hemo to PD, b/c while I was on Hemo my labs were PERFECT!!! but the last 2 months PERFECT PD labs so that makes me happy!!!  :2thumbsup;

I feel as if I am missing something here  :waiting; rest assured that if I think of it, I will be back  ;D

until next time

 :waving;



10-16-11 UPDATE!!

Well let me see here.... I do think it has been some time since I posted my update... pardon if I leave anything out  ;D

I turned 32  :( on October 11, 2011!!!!  booo  :(
on a super positive note..... today marks one full year with not even a single puff of a cigarette!! (that is the one thing positive that came from have kidney failure... I had to quit smoking in order to get "on the list")

my BF took me to casino Niagara and to Niagara Falls for 2 days and yep you guessed it I had the trunk of the car packed full of all my PD supplies..... shoot I did exchanges in the car, in the hotel and we even stopped at his Grandma's house in Buffalo and I did an exchange there..... I love the flexibility PD offers me.... my BF and I were just talking about how if I was on Hemo I would have never been able to even go on that trip at all!!! soooo life is good!!  :flower;
Oh one small problem while I was so worried that I was going to forget something that I need to do my PD I ended up forgetting my entire bag that was full of my hair products and makeup  >:( so my poor BF had to go buy me EVERYTHING new or I was not leaving the hotel room  :angel;
I had to go to the center and do my annual care plan that is always a good time  ;D
I had the very last step in the transplant evaluation just last week (image of my kidneys)
so guess what ladies and gents?? I am FIANLLY on the list!!!!!!!!!!!!!!!!!!
here is to life on the list..... just like I do with PD..... I am not going to watch the clock I am going to continue to live my life without wonder and worry!!!! (well worry that is not possible  :urcrazy;)

things appear to be going very well and I am LOVING PD!!!
Now when I go to that stinky center I preach not only about diet..... I preach that everyone who can, should be on PD!!! :cheer:

until next time
The PD princess   :clap;


this update was from 10-5-11 so its just a little backwords  :(

I had my first PET test Thursday and today I met with my Neph to go over the results and this is what he said:

1.  Creatinine and Urea are being removed!!!!   
2.  I do not absorb
3.  I can continue to fill with 2000ml, 4 exchanges (CAPD) with the last exchange of the day being green, but I can choose whatever I want(yellow's Green's) for the remainder of the day just to keep my weight & BP in check.

He then looks over my labs which are PREFECT   has Mandy check my BP, Pulse, Weight, listens to my lungs, checks my ankles then says, "Well I can't seem to find anything wrong with you."       

Next clinic visit is 10-19-11!!!!!!!!!!!

They (the D staff and Techs) when I was doing in-center hemo used to call me the "dialysis princess"  I think I will rename myself the Peritoneal Dialysis princess 
     
11-20-11
Update:

OK I am going to try to remember to get everything in here b/c it’s been awhile since my last update…….
I had my clinic visit yesterday and my BP has been super super super low for ME (105/75) I was C/O dizzy spells so the Neph said that I need to eat more salt!!!  (First “they” don’t want you eating salt, now they do) go figure!
I don’t know if I had mentioned this or not, but I THOUGHT that I had found a correlation between low vit D level and high calcium levels, but anyway I was running at the higher end of normal for my calcium and I did not like that so to make a long story short I found that vit D if it is lower (in my case anyway) and you take a supplement your calcium will go down.  Which mine went from 9.3 to 8.7 and I have only been taking the vit D for 2 weeks, I can’t wait to see what my labs will be next month when I will have taken it for over a month.
The potassium was 3.3  and the first thing the neph said was “do you want a pill?” and my response was, “I am not a walking medi-set, I think this was just a fluke.”  Which I really think it was  b/c lord knows I eat enough bananas, tomatoes, & potatoes to actually kill 2 Hemo patients. All my other labs were SPOT on and I got 2 stars like I ALWAYS DO!!!
Now, onto the more important aspect of CAPD….. The freedom!!
I do EVERYTHING!! I go anywhere I want, I eat what I want…….. I am in complete CONTROL of how I feel!!! Dialysis does not control me any longer and this disease does not consume me half as much as I felt it did while I was on hemo.  The worries I had pre-PD were of body image and were of my Boyfriend not being accepting of my cath….. Well he does not even care about it……. I think the reason I was it took me so long to decide to do PD was b/c of the whole body image aspect and how I THOUGHT Joel (my BF) was going to react (I thought he was going to take one look at me, see my transfer set and 18 inch cord hanging off of my body and not find me attractive anymore then he was going to look around at all these boxes and say get the hell outta my life…… well that was my worst fear and that did not happen…… nothing has changed!!!     
It takes on average 17 minutes from start to finish for me to do an exchange and this includes gathering my supplies so that is less than 2 hours a day I spend doing treatments so while I am hooked up I pole and I do the following: cook, clean, text, get on the computer, make lists, do the dishes, do my hair, put my make-up on, get dressed, get un-dressed, do the laundry, fold the laundry, visit with Joel <3, or sometimes I just sit and sip on my coffee (this is usually in the morning when I am half asleep  )
I have no desire to do the cycler and actually take offense to others trying to push their view of it onto me, I have considered on my options and for starters I don’t sleep at night….. on a good night I will be lucky if I get 4 hours in and that’s on a good night, not to mention Joel and I like to go out to the casino late at night, & we like to go out to bars, we would not be able to do that b/c I would be on a schedule to get home to “hook up” Also, Joel is the sole provider for me and he works and he works very hard and he needs his sleep, he can’t be woke up by alarms in the night and he can’t be worrying if I am alright all night long…… I do not want any drain pain either!!! I do not want the machine (something else that I have to worry about)
I like how portable CAPD is, I like the flexibility that comes with it and since I don’t absorb (unless I use a yellow and have a dwell with a yellow over 4 hours) I don’t watch the clock!!! So I do what I want, pretty much when I want!!!!
I did find that if about once a week I give my membrane about a 4-6 hour break with no solution in at all that I have less cramps, bloated feeling, slow drains, pains and better overall UF’s.  now to achieve this I simply just make sure that I get up extra early that day do all my exchanges and then well lastly do not fill and give my membrane a break…… and Hey it really seems to work!!!
I officially am on the transplant list
No I have no family members or friends willing to be tested

Next month: new transfer set, & 24 urine again

Until next time


 :waving;



 





 









Title: Re: A step by step PD experience!!!
Post by: jeannea on June 30, 2011, 11:52:28 AM
I hope it goes well. You'll like PD.
Title: Re: A step by step PD experience!!!
Post by: billybags on June 30, 2011, 11:57:42 AM
First of all  :welcomesign; tbarrett2533, do not be afraid of doing PD and yes it is scary to start with but you will soon get use to it. Please post and ask as many questions as you like. You will be fine.
Title: Re: A step by step PD experience!!!
Post by: Willis on June 30, 2011, 02:34:23 PM
Best of luck! You'll make it, just don't watch any funny movies for the next few days! It's really true that it only hurts when you laugh.  :cuddle;

 
Title: Re: A step by step PD experience!!!
Post by: rsudock on June 30, 2011, 09:15:39 PM
good luck!!! Look forward to your posts!!!


xo,
R
Title: Re: A step by step PD experience!!!
Post by: Jie on June 30, 2011, 11:05:43 PM
Oh, PD is a piece of cake, and you can take it easily.
Title: Re: A step by step PD experience!!!
Post by: Atooraya on July 02, 2011, 05:21:54 PM
Pd is easy. Best of luck to you.
Title: Re: A step by step PD experience!!!
Post by: lmunchkin on July 02, 2011, 06:51:24 PM
You will find PD a very good modality!  Will you be using the cycler (CCPD) or manual exchanges (CAPD)?
You will do very well with this!  Like previous post said, you may be nervous at first, but once you get it down and perfect it, it will be so routine!

Good Luck and keep us informed,
lmunchkin      :flower;

p.s. Just being home is a BIG plus for alot of us. But Home D. is not for everyone!
Title: Re: A step by step PD experience!!!
Post by: Ken Shelmerdine on July 02, 2011, 07:00:53 PM
Best of luck for tomorrow and keepus posted
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on July 03, 2011, 09:20:11 AM
SO today is the first day that I have been feeling up to posting...


I arrived at the hospital at 7:45am Friday, got my IV (which they had to try on three different spots b/c I was so dehydrated.... which is good  :clap;)

they pumped me full of saline and I just about had a stroke and freaked on them considering all that fluid (which I put on 3 kilos when on a "typical" treatment day I only put on 1.5 kilos)

So I digress, I don't remember anything else until I woke up at 11am..... feeling all doped up and in a lot of pain the nurse gave me some crackers and a drink and by 11:30am I was on my way home where I slept the remainder of the day (except getting up to go to the bathroom and taking my pain pills)

Saturday I was in the most pain that I have ever been in and as a matter of fact when I went in for my treatment the nurse suggested that I "sign" off and leave early which I did (one hour) b/c I was in so much pain and so uncomfortable and its not like I make it a habit to shorten my treatment time.....that was the first time I have ever done that and I have been doing in-center Hemo since September 2010. 

after treatment I was back home to sleep then I decided that I would take a shower and remove the bandages (that I was suppose to remove) I found my 2 tiny little incisions b/c my surgery was performed laparoscopically and then where the actual tube comes out which is about 5 inches and my transfer set is 7 so I will have a 12 inch tube hanging off of me... uggghhhhh  :stressed;

then it was back to sleep..... btw I have been wearing PJ's just cause I want to be comfortable and I tried taping the tube up, but its still to new and hurt when I bent it up so I am just letting it hang there for now......

I will see my PD nurse to schedule our home visit (they come to your house to make sure that you have enough room to store all of your supplies) on Tuesday and I think after that (about a week from now) I will start my "paper" training!!   :bandance;

I will be doing CAPD because its an ongoing joke that there are plenty of "other" things that I like to do at night and dialysis sure is not one of them  :kiss; :kiss; :angel; ;)


I think that is about it for now.... today I am feeling the best and am actually starting to look forward to the freedom that PD is going to give me.......... pretty soon I will be posting about suggestions on how to do exchanges in my car on the go :)

I will continue to post (hopefully daily) here so everyone knows how I am doing.... I think I stated it earlier that I want to post a step by step process with hopes that my posts will at the very least help just one person make the decision to do PD :)
 
Oh yea I should add.... Thursday night while at treatment my fav tech was taking me off my machine and I was nervous and worried about this procedure so what do I do (which I had no control over) I start crying like a little baby :( and I begin to tell him how worried I am about my body image (and to be honest that is really the only thing that has made this entire decision to do PD or not a tough decision to make) so he says to me.... "As soon as you realize that the tube hanging off of you is what is going to keep you alive there should be no body image issue." He's right, but I have not come to terms with that yet..... hopefully I get there and I fall in love with PD and it becomes a way of life for me or its back to the dreaded HD  :'(

I will post soon.... its off to watch my Lifetime Sunday movies :)



Title: Re: A step by step PD experience!!!
Post by: jeannea on July 03, 2011, 01:04:35 PM
The body image wasn't a big deal for me. I had always had a bigger belly after my first transplant so PD belly doesn't bother me. I wear a lot of elastic waist stuff and leave my shirt out. I have a belt to tuck the catheter into because I don't like it hanging.

I found with the catheter surgery that the laporoscopy hole hurt worse than where the catheter was. But that will feel better soon. Hang in there.
Title: Re: A step by step PD experience!!!
Post by: Willis on July 03, 2011, 01:07:50 PM
Sounds like things went well for you. I too was surprised at how painful the incisions were--the incision below my belly button more than the cath itself. But for me that incision healed up pretty quickly and now the cath area is just about closed up finally after almost 2 months. I had one minor infection at the cath site (very minor and cleared up after 2 days with antibiotics). So attend to that properly as instructed.

Just keep telling yourself that things are only going to get better!  :yahoo;

 
Title: Re: A step by step PD experience!!!
Post by: lmunchkin on July 03, 2011, 02:28:45 PM
Good for you TB.  Hubby really liked CAPD!  All he had to do was go to a sanitary place in his big office and do them.  They only took, if I recall correctly, 30 to 45 minutes.  Back then he wanted to do them himself!  He didnt have to rely on me for much!

Yea, he really liked the freedom it afforded him!

lmunchkin      :flower;     :cheer:
Title: Re: A step by step PD experience!!!
Post by: Des on July 04, 2011, 02:05:51 AM
 :thumbup;
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on July 04, 2011, 11:02:42 AM
Today marks 3 days after my placement!!

I have decided that I am not going to take any pain pills today (and boy am I feeling it)

I took a shower today and took the bandage off and let the water just run down my stomach (the instruction sheet stated that I should have done that as soon as 24 hours after my surgery, but the Dialysis nurse told me to wait until I spoke to the PD nurse (Mandy) on Tuesday) but I did it anyway.... the instruction sheet also states that I am too leave it uncovered but I am not doing that b/c then my shirt rubs on the incision site and I am worried that would cause some redness and pain so I have it taped off with a gauze (pointing down)  To be comfortable I am wearing my boyfriends work shirts which are very large shirts and I have a few pairs of  stretch shorts.... from the head up I look AMAZING... I got my makeup on, earrings etc  :bandance;  but below the neck..... UGGHHH its not pretty  :'(

Today I attempted to go sit in the sun outside, but got chased away by all the bees and well I cant move very fast and it really only does hurt when you laugh or when you have to "jar" around so its back to the bed which BTW I get the most comfort by laying half up and half down with my feet up, but my goodness I have been in this bed since Friday!!

I am sore, and super bored and I just cant wait until I feel good enough to get up and outta this bed  :bow; !!!


Happy 4th of July everyone!! I sure wish I was up having fun like the rest of you all are....... so have fun for me please!!  :cheer: :rofl; :clap;

Until next time............  :waving;

Title: Re: A step by step PD experience!!!
Post by: wbdoug on July 04, 2011, 03:19:07 PM
I am looking forward to more of your posts. I will be getting my cath on aug 3 and you are giving me some great insight on what to expect. I am currently on my last long bike trip before I start pd as it will not be possible to take extended bike trips with all the supplies I will need in the near future.
Thanks
Bill
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on July 04, 2011, 04:40:50 PM
I am looking forward to more of your posts. I will be getting my cath on aug 3 and you are giving me some great insight on what to expect. I am currently on my last long bike trip before I start pd as it will not be possible to take extended bike trips with all the supplies I will need in the near future.
Thanks
Bill

anytime!! this was my goal....I just wanted to help one person (if only one) to decide to do PD or not!! so far I must say the pain is not that bad b/c I got my eye on the prize..... no more in-center Hemo and freedom to be in charge of my treatment!!

as far as your long bike rides..... dont discount them yet....... the people on here more than likely have suggestions on what to do so that you can continue to do them!! it never hurts to ask....... maybe Nocternal PD would be a better option for you... (just a thought)

and I say you post (just like I am) your PD experience as well!! every person is different and your circumstance could be much more unique than mine and you could help someone else! 

Best of luck to you!!  :flower;

 ;D
Title: Re: A step by step PD experience!!!
Post by: lmunchkin on July 04, 2011, 05:28:12 PM
Bill, will you do PD at night or exchanges through out the day; or both? Before husband was diagnosed with ESRD with Diabetic Retinopahy and neuropathy of the feet, we had bikes!  We rode everywhere together, but sadly he had to give it all up cause of his sight.  Trust me, before all this happened to him, his driving was a frightening thing to watch! I mean that literally!

Nobody wanted to ride in a car, much less a motorcyle with him.  The thing was he had no idea!  He felt great and looked good,could carry on a normal conversation, but something was happening to his sight and his equalibrium was wacky!  In 2004, he was sick and thus was diagnosed ESRD, D. Mellitus, PAD and CVD, with Retinopathy (Diabeties) and D. neuropathy.

I guess after all that, he probably could have tried to do PD at night, then rode bike all day! But he gave it all up due to medical conditions, and trust me, it was very hard on him!

So no, you may not have to give up bike riding, but you may not be able to ride a long distance ride either!  Bikes are very addictive!  I still have mine and occaionally go riding when opportunity arises!  Even though husband says he don't mind me riding, I still feel bad doing it, cause I know it has to "sting". So I ride just enough to keep battery charged and then back home!

But his condition warranted it, your's may not!  So glad to hear you are going to do D. at home! So many people can't for what ever reason!

Let us know if we can help answer anything you need to know!  This is an excellent site for you!

lmunchkin     :flower;

p.s. What kind a bike you have?
Title: Re: A step by step PD experience!!!
Post by: wbdoug on July 05, 2011, 07:28:57 AM
Tbarrett,   
I am not a prolific poster but I will try to change my evil ways and post more often after I get my cath. Unlike you though this will be the beginning of my journey on dialysis so what you and others have written has given me a lot of information and relieved some of my fears (and raised a few others!).
I am not giving up on my bike trips altogether but when I talk about the long trips I am talking about traveling for 1 to 2 weeks straight on my bike camping along the way. Right  now I am on my 7th day out on a 13 day ride. A bike just will not allow me to carry what I am going to need in the future for this type of riding.

Imunchkin
Fortunately I do not have any other medical conditions so just being on D will not stop me from riding. As far as what type of pd I am not sure yet. I still need a much more education.
I am riding a 2002 Honda Goldwing pulling a small tent trailer. I have 141k on this bike (my 4th goldwing) and counting. Right now I am in Oregon. Next stop is Idaho.

Bill

Title: Re: A step by step PD experience!!!
Post by: Meinuk on July 05, 2011, 08:41:01 AM
Tbarret,


THANK YOU,  this is GREAT!!!  You are folowing in EPOMAN's tradition, and anything that you write will help others.

One suggestion though, could you copy your updates into the first post that you started?  That way they will all be together in a diary" form and easier to read.  (Still do the update postes as new posts, so we know that you've been active, but then, if you could, could you simply cut and paste into the first post?

I am very excited to read your updates.  We need all the info that we can get with regard to PD.  THANK YOU for sharing!

 :thx;

Anna
Title: Re: A step by step PD experience!!!
Post by: Willis on July 05, 2011, 12:47:41 PM
I took a shower today and took the bandage off and let the water just run down my stomach (the instruction sheet stated that I should have done that as soon as 24 hours after my surgery, but the Dialysis nurse told me to wait until I spoke to the PD nurse (Mandy) on Tuesday) but I did it anyway.... the instruction sheet also states that I am too leave it uncovered...
Wow, I was given STRICT instructions: DO NOT SHOWER UNTIL I TELL YOU IT'S OK!!! Well after 2 weeks of sponge baths I couldn't stand it anymore and started showering. The PD nurse never did tell me I could take a shower... :o

And I was told by both surgeon, neph, and PD nurse to not remove any bandages for 5 days at least and then to leave the first removal to the nurse. When the transfer set was connected to the cath about 10 days after surgery, she finally removed the original bandages applied during surgery. Then I had to sanitize the exit site every night and apply a fresh covering. I'm still applying a full covering after 3 months (it's pretty close to fully healed now with just a red ring around the cath).

 
Title: Re: A step by step PD experience!!!
Post by: lmunchkin on July 05, 2011, 03:15:11 PM
Well Bill, PD is an excellent modality for you, but I must be frank, any modality you choose is not going to allow long bike rides like you are doing now! That is ashame but it is reality!  Unless you trailer your bike with supplies  needed in your vehicle to last that many days! After awhile, it may ware you down and you will stop the D. or stop the long trips! 

This will make a huge difference in your lifestyle, but even though its no picnic, you will do what you need to do in order to live.  Are you on a Transplant list?  What has caused your kidneys to shut down?

I hate that you are facing all this, but others on this site will be very beneficial and full of information!  I hope you have a safe and wonderful ride, it is so freeing isnt it?

Good luck, Bill!  Looking forward to your posts!

lmunchkin       :flower;
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on July 06, 2011, 01:51:57 PM
Day 5

OK yesterday I spotted some drainage and got freaked out (b/c that stupid instruction sheet that if you have any drainage call!!)

so that is what i did and I went right in to the surgeons office and well come to find it, its OK and "normal" so she showed me how to tape it off (which BTW i really hate) so if there is any suggestions on how to tape it off and not have it so balky (sp) that would be great.  She also removed all the stitches  :bandance;  she told me that she would like to see me wait a few weeks before I use it (which I knew) she informed me (which I already knew  ;D) that the PD nurse will be the one to tell me when I can use it  :laugh:


I also decided that yesterday was enough of "in the bed" and I pushed myself, I ran errands, and did my all time fave thing .... clean my house (no joke it really is my fave thing to do  :P)  shoot I even made a cake  :cheer:  and last night well me and my man, well you know  :o ;) which I should have waited to do that b/c it literally felt like my stomach was falling off!!! (but it was sooooo worth it  >:D)

today I went to the park and walked around.... just a little pain, but nothing that i can not manage :)

till tomorrow  :waving;

Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on July 06, 2011, 01:55:06 PM
Tbarret,


THANK YOU,  this is GREAT!!!  You are folowing in EPOMAN's tradition, and anything that you write will help others.

One suggestion though, could you copy your updates into the first post that you started?  That way they will all be together in a diary" form and easier to read.  (Still do the update postes as new posts, so we know that you've been active, but then, if you could, could you simply cut and paste into the first post?

I am very excited to read your updates.  We need all the info that we can get with regard to PD.  THANK YOU for sharing!

 :thx;

Anna

Hi Anna  :)

I think I did that (copy and past today) and thank you for that a great idea  :2thumbsup;  I will also post what day I am on so when people read it they have an idea!! thanks for the great suggestion!!!!  :flower;
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on July 07, 2011, 11:15:37 AM
Day 6 (and I am going to copy and paste at the top of each of my posts)

PD training starts Monday July 18, 2011!!!!!!!!!!!! 

pain is very minimal and I am getting super excited to finally be done with in-center Hemo!!!!

until tomorrow!!!!!!!!  :waving;
Title: Re: A step by step PD experience!!!
Post by: HouseOfDialysis on July 07, 2011, 12:56:37 PM
Good luck! And as always, should any questions arise, we'll be here!
Title: Re: A step by step PD experience!!!
Post by: Jie on July 08, 2011, 08:53:10 PM
I am surprised that the bandage can be off within three days. I was not allowed to do anything with it during the first week. However, I felt almost no pain and did not take any pain pills.
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on July 09, 2011, 11:28:07 AM
Good luck! And as always, should any questions arise, we'll be here!


 :thx;

(if i am not mistakin you are the guy who does exchanges in ur truck??)

and if so I will be calling upon you especially to get tips on doing exchanges in my car  :2thumbsup;
Title: Re: A step by step PD experience!!!
Post by: HouseOfDialysis on July 09, 2011, 05:22:12 PM
Yes, ma'am. That's me. Any help you need, let me know. I'll assist in any way I can, Doll.
Title: Re: A step by step PD experience!!!
Post by: JLM on July 10, 2011, 09:55:58 AM
Yesterday I did my first exchange as I drove our truck.  I hung the full bag on the garment hook in the back, and put the drain bag on the floor by my feet.  I should have had the tubing go to my left side instead of my right.  I'll do that next time.   After draining for 45 - 50 minutes, I pulled off the road and did the switch to the solution bag.  After we got to our destination I completed the process and capped off.  Then I enjoyed spending time with my family and went kayaking.  I stayed away from the "pack" to avoid getting soaked.
Title: Re: A step by step PD experience!!!
Post by: Ken Shelmerdine on July 10, 2011, 03:29:59 PM
Can I ask how long people have been doing their exchanges in cars and trucks. In doing so I can't see how you can maintain a sterile environment and therefore you are sending gold lettered invitations to peritonitis. The only safe way to do exchanges is in a scrupulously clean and sterile room with your works surface well disinfected for your intake bag and swabs and wipes. I also can't imagine how the strict antibacterial hand washing routine can be possible in a car or truck.

For those who have never experienced Peritonitis I can tell you from experience that it's no party. You will have probably heard from medical staff say that it lasts for about 48 hours and then you can start doing PD again. That is not the full story. They are referring to the least damaging bacteria (Staphylococcus if that is the way to spell it) and most patients have full recovery.

I wonder if they told you about Pseudomonas Peritonitis which is far more dangerous. You'll be in the worst agony you've ever experienced, your drain bags will look like yellowy brown Mud, you'll be in so much pain you'll start wishing you were dead. The worst of it will last depending on how quickly they can remove you're PD catheter  because you see that will be infected as well and antibiotics only take effect on organic matter and won't clear bacteria from a plastic tube. Because Pseudomonas is so aggressive it could cause your bowel to burst causing septicaemia, your essential organs will start to shut down, next thing you are on a life support machine and if you miraculously survive you will at best have to put up which a bowel colostomy for the rest of your Life

This of course being a worst case scenario may never happen to many people but there are at least two patients in my centre with colostomies and on- going bowel complications

I myself had Pseudomonas peritonitis and luckily had the catheter removed as quickly as possible so no complications occured.
Think about it, is it worth tempting all that potential suffering be exchanging in  a truck or any vehicle for that matter
Title: Re: A step by step PD experience!!!
Post by: HouseOfDialysis on July 10, 2011, 04:45:21 PM
It's a just a practical part of my life. I know of lumberjacks, locally, who do it in their vehicles as well.

Since I started doing PD, it was a necessity to do it in my truck. My worksite is a dirty ol' warehouse, and there is no place IN the building that is acceptable.

I keep my truck clean. I wipe everything down with Lysol or Clorox disinfectant wipes. hell, Lysol can kill HIV-1 in 30 seconds. My point is that if you take proper precautions, it minimizes the risk, but the risk is ALWAYS there.

On road trips, I don't stop for exchanges, if I'm doing manuals. We shut off the airflow in the vehicle, whatever it is, everyone masks up, and we progress. We get strange looks from other drivers, but hell, that's part of the fun at that rate.

We do what we must to live and more than that, live life. Dialysis works for me, I don't work for it.
Title: Re: A step by step PD experience!!!
Post by: cattlekid on July 10, 2011, 04:50:40 PM
Apologize for the threadjacking, but this quote is awesome!  I plan on whipping this one out whenever I get static from anyone for staying incenter.  It works for me now and I will change when it no longer works for me, not on anyone else's schedule. 

Please return to your scheduled thread now, pardon the interruption.   ;D

We do what we must to live and more than that, live life. Dialysis works for me, I don't work for it.
Title: Re: A step by step PD experience!!!
Post by: HouseOfDialysis on July 10, 2011, 04:55:50 PM
That's the spirit, cattlekid!

Me, I don't think I'd do well with In-Center. Even if I do ever wind up on hemo, I'll likely do home-hemo. I prefer to be in charge of my life as much as possible. From dialysis to skydiving, I live life on my terms, no one else's. Well, sure, I take into my account my son and my wife, but they usually are okay with what I do.

Education, preparation, and following through. These apply to dialysis in not so usual circumstances as well as life in general.
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on July 12, 2011, 11:04:58 AM
Hi all!!! (just checking in)

its been over a week since I had my placement surgery......  things are going good & i am getting so excited to be one day closer to starting PD!!!.....


There is no pain at all now  :yahoo;
I am showering daily and simply cleaning the exit site daily

Until next time

 :waving;
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on July 12, 2011, 11:11:17 AM
Apologize for the threadjacking, but this quote is awesome!  I plan on whipping this one out whenever I get static from anyone for staying incenter.  It works for me now and I will change when it no longer works for me, not on anyone else's schedule. 



We do what we must to live and more than that, live life. Dialysis works for me, I don't work for it.

And I second this!!! What an awesome quote!!!  (and will most likely be my next Facebook status) don't worry I will be sure to footnote the author  :rofl;
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on July 12, 2011, 11:21:27 AM
Yes, ma'am. That's me. Any help you need, let me know. I'll assist in any way I can, Doll.

I LOVE to go Antique shopping (which is my hobby  :yahoo;) (Antiquing is usually far from home and all day outings (sometimes overnight) so that is when I will need to do exchanges in my car, when I am out looking for my "scores"  :2thumbsup;

I am not going to stop or limit what I love to do because of dialysis..... I am going to find ways or tricks to incorporate it into MY life or as far as I am concerned there is no point of living!!!!

So stayed tuned b/c I am going to need your advice and tips!!!!   :thx;

 :waving;
Title: Re: A step by step PD experience!!!
Post by: HouseOfDialysis on July 12, 2011, 01:35:02 PM
Word, Doll! Let me know, and I'll help to the best of my ability and experience.
Title: Re: A step by step PD experience!!!
Post by: lmunchkin on July 12, 2011, 07:16:42 PM
Just be careful guys! If you do it like you were told in training, then there shouldn't be a problem.  As long as you are aware of "sanitize, sanitize & sanitize!.  Ken is right though, pseudomonas peritonitis is a very wicked infection. Like Ken, my husband had it and fortunately caught it in time! They removed his catheter also!

That seems like a long time ago!

lmunchkin     :flower;
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on July 14, 2011, 11:43:00 AM
7-14-11

while at the D today the nurse changing my bandage informed me that it appears that I have puss coming from my exit site and that its really red.  She stated that it "appears" that I have the start of an infection........... Made an appt. with the surgeon for tomo at 1pm...... uggghhh I really hope that this is no indication of problems to come   :bow; :stressed;

until next time

 :waving;
Title: Re: A step by step PD experience!!!
Post by: lmunchkin on July 14, 2011, 12:06:44 PM
Puss is a sign of some sort of infection!  Which kind will be determined by cultures.  What did your temperature show?  Is it running a little on the high side?  Are you feeling more weak than usual?  I hope and pray it is nothing, TB, but fear that it is some sort of infection!

Keep us posted on the matter!

lmunchkin      :flower;
Title: Re: A step by step PD experience!!!
Post by: lmunchkin on July 14, 2011, 12:08:40 PM
Culture' will determined the source also, if Im wrong on that, please someone correct me!
Title: Re: A step by step PD experience!!!
Post by: Jie on July 14, 2011, 07:58:32 PM
Sorry to hear about the infection. I guess my surgeon's restrictions during the first two weeks makes a lot of sense to prevent inflection.
Title: Re: A step by step PD experience!!!
Post by: Willis on July 15, 2011, 09:37:55 AM
while at the D today the nurse changing my bandage informed me that it appears that I have puss coming from my exit site and that its really red.  She stated that it "appears" that I have the start of an infection...........
About 3 weeks after my cath surgery I had the same thing. I was told it was not unusual and unless there is pain in the "tunnel" (indicating the infection is deeper), it's nothing to worry about unless ignored and neglected of course. I took an antibiotic for seven days and it cleared right up.

 
Title: Re: A step by step PD experience!!!
Post by: YouDontKnowCecil on July 18, 2011, 09:50:53 PM
Just found this thread. Read the whole thing! I have been on in center hemo for more than 9 years by now. I am still pretty scared of PD because of all the sugar that's gained and etc. My HbA1C is normal, but on the higher end of normal.

Hope you are doing well TBarrett.
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on July 19, 2011, 10:43:37 AM
7-19-11

so I had my first day of training yesterday (Baxter) and we made it to chapter 4.... so dry & boring but it has to be done  :puke;
I drained and filled the dummy 2 times with step by step instruction from Mandy (PD Nurse) learned and have already memorized "SEAL."   :clap;  got some quick tips on cutting open the drain bags (to get rid of the fluid faster) after an exchange is complete  :cheer: 
we talked about my solution strength, & amount until my first PET test in two months, and we even discussed the cycler (which I might even consider)  :yahoo;

I have day two of training tomo from 7am-9am and will post how it goes......

It's getting closer and seems to be more of a reality now  :bandance;
We anticipate August 1, 2011 :bow;

until next time  :waving;

Oh yea I almost forgot.... no infection.......  :yahoo;
 
Title: Re: A step by step PD experience!!!
Post by: Willis on July 19, 2011, 11:52:03 AM
...and have already memorized "SEAL."
My PD nurse emphasized "SEAL" per the training manual too, but told me that she had never seen a bag that actually leaked ("L"). Of course, some condensation inside the outer wrapper is normal, but about 2 weeks after I started PD I pulled a bag out of the box and just before I tore open the wrapper I noticed it was full of fluid. One of the side-seals of the actual dianeal-fluid bag had split open...not a tear, but a separation right where the heat-sealed edges had failed and an obvious factory defect. I delivered the empty bag to my nurse and she said "Well, there's a first time for everything!"

BTW, after a while I figured out that there are two tear tabs on the corner of each bag. You just need to get these started enough so you can get your fingers into the tear and then the outer wrapper will rip right open. No instruments or scissors needed.

And yes it is a lot faster to cut a hole in the waste bags with scissors to drain...took me a few weeks to realize there had to be a better and faster way than just squeezing it all out the drain tube!  :banghead;


 
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on July 19, 2011, 12:04:10 PM

I used the side of one of the blue clamps to cut open the bags yesterday & it cut through the bag effortlessy   :2thumbsup; but I will def look for these tabs and try them then go with whatever method is the easiest  :)

 :thx;
Title: Re: A step by step PD experience!!!
Post by: HouseOfDialysis on July 19, 2011, 01:04:30 PM
I've had one bag leak, but that was due to me snapping not the cone, but the bigger part beneath that. My bad! Other than that, no leaks.
Title: Re: A step by step PD experience!!!
Post by: wbdoug on July 19, 2011, 06:02:21 PM
Did my labs today. GFR 9 and creatinine 6.5  >:(
Looks like I will be following in your footsteps real soon! Woopee.
Bill
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on July 20, 2011, 09:29:58 AM
7-20-11

So Much happened today lets see where do I start...........
1.  Transfer set is hooked up
2.  did my Baxter tests for Chapter's 1-4 and aced them all.... super easy tests though  :clap; :2thumbsup;
3.  Drained and filled the Dummy four times and the last 2 times I did not have to have Mandy tell me what to do  :bandance;
4.  my first FLUSH!!! was today as well....... We did yellow solution (1.5) 500 in, then drained 500 out, filled again with 500 then drained and we did it a total of 4 times for a total of 2000 in and back out! the problem that I felt was pain in my upper left hand shoulder kind of a dull pain that was present with every fill and drain, Mandy says that it is "normal" as it is your bodies way of saying, "what the heck is going on here." HAHA  :rofl; :rofl;  There was A LOT of Fibrin along with some blood and Mandy also said that was "normal" b/c I just had my Cath put in and this was the first drain and fill.  As we got to the fourth drain the solution had no blood in it and no fibrin either.  The solution was clear as well  :bow;  All in all I think my Flush went very well and my drains and fills went super fast which according to Mandy means that I have a good cath so that is a super plus!! :bandance; :yahoo; :thumbup;  We talked about the purple (long dwell solution only) and the dreaded red!! we did Chapters 5 and 6 along with the tests which of course I got all right  ;D

I go back Friday from 7-9am for more flush's and Monday I will have my first flush with me doing the whole thing.... I am nervous and hoping and praying that everthing goes PERFECT  :pray;

Until then,
 :waving;
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on July 20, 2011, 09:50:36 AM
Did my labs today. GFR 9 and creatinine 6.5  >:(
Looks like I will be following in your footsteps real soon! Woopee.
Bill

Bill,
Trust me when I tell you that I know exactly how you feel as does everyone else on IHD  :cuddle;
Please if I may offer you some advice (and if you are anything like me you are tired of hearing advice from other people), but please, please, please use this website to help you....... read, re-read ask questions then read some more  :) I was bitter (still have my days too) I mean BITTER to learn that I had to go on dialysis at such a young age... my entire life did a 360 and I had to "adjust" the best way I knew how, I felt like I was completely alone and NO ONE heard me UNTIL.... I found this website.... truthfully I do not know what I would have ever done without finding this site!! By finding this website I was able to get information on diet, Hemo, PD, tricks and tips on controlling fluid intake, and that is just to name a few...... I am the youngest Female at my unit of 93 patients (I'm 31 and the youngest male is 28) and IDK why but I was not told ANYTHING about dialysis other than I needed it to continue to live, so this website has made me "Smart" about dialysis and now I am the girl sitting in Hemo yelling at the 85 year olds for not following their diet and offering to them the same suggestions that I learned right here on this website  ;D

I wish you the most luck in your Dialysis journey and remember we are all here for you when you have questions or concerns that come up! 

 :waving;
Title: Re: A step by step PD experience!!!
Post by: wbdoug on July 20, 2011, 06:37:08 PM
Hi Tbarrett
Thank you for the advice but I am way ahead of you. IHD is a daily read for me. Long before I became a registered user I was reading a lot of posts and learning more from here than any other source because of people like you who have taken the time to post about your experiences. So yes, I am taking your advice and the advice of many many others who take the time to share thier experience and expertise. And I am thankful and grateful to ALL of you.
I have not asked any questions yet because so far just about all of the answers are on this forum. But if and when I do have one of those bits of wisdom (rare for me) I will be happy to share. Even though I am new here the people on this forum have made me feel welcome.

I am joining this club kicking and screaming all the way, but I am proud to be a part of IHD!!!
Bill
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on July 25, 2011, 05:00:23 PM
7-25-11

 :bandance; HELLO

 Alot is going on over here with my little PD adventure!!!

Friday's training session went a little like this.
1.  I peed on myself b/c I forgot to close my transfer set before trying to unhook... Mandy said she let me do it on pourpose and that it was a rookie mistake and now I won't do it again (she was right  ;D)
2.  Dwelled for about 1 hour with 1500ml in, drained with NO PAIN!!  :bow;
3.  Discussed and practiced on the dummy how to inject medications into the bags of solution (too easy)
4.  went over the flowsheets (how to fill them out)
and drained and filled the dummy at least 6 times (if not more) with NO prompting from Mandy  :bandance; :2thumbsup; :yahoo;

my weekend was amazing, went to the casino and won $140  :clap; had NO problems with anything!!

Monday's (today) session went something like this....
1.  Dropped the friggin cap (of the dummy) and freaked out
2. Filled myself with 2000ml yellow (1.5) solution.... wicked pain the whole way in  :'( (in the shoulder L hand side)
The PLUS the entire fill took 6 minutes and that was with me slowing it down by Turning my transfer set off a little
the second all the solution was in I felt super full and began to cramp (like menstrual cramps) and my tunnel and exit site were so sore that I thought I was going to pass out so I look down and what do I see....... blood coming out of my exit site.......  :thumbdown; :stressed; I freak and Mandy suggests that we drain it out right away..... the PLUS, my entire drain was 8 minutes from start to finish but the pain was out of this world it felt like menstrual cramping times 10!!! as a direct result of this blood Mandy says that we "may" have to push my start date out  :'( >:(  I really hope not  :pray; but totally understand if we do I want to be safe not sorry!

we went over how to place my order, I took my pole, thermometer, scale, BP kit, & blank flow sheets home and set it all up in my corner where my treatments are going to be.... I think I have the best set up and I wish I knew how to upload pics on here so I could show it off to people!!!  ;D

the rest of the day I have been in terrible stomach pain....... I feel super crampy, and it literally feels like someone is throwing knives at my back  :stressed;  :puke;   I don't know what the heck is going on here, but I am scarred and unsure and super worried so if I do not feel any better by treatment time tomo (12:30pm) then I will let Mandy know and we will take it from there I guess!  :'(

I think that about covers it, next training session is Wednesday and will post my next journey!! 

here's a short little rant:  :rant;  I hate what Kidney failure has done to my life and I hate how I never ever get a break from it.... I am already sick of it and can not even imagine having to spend the rest of my life living like this..... the thought of if just makes me wanna scream, cry, yell, punch things, & give up  :stressed; end rant stayed tuned to my next rant  ;)

until next time

 :waving; 
Title: Re: A step by step PD experience!!!
Post by: HouseOfDialysis on July 25, 2011, 05:09:42 PM
I've only experienced filling pain when I didn't clear the line of air. That will rocket STRAIGHT to your shoulders. It's where loose gas all goes, up.

To upload photos, simply click "Additional Option" under the text box, and click Choose File from the Attach: menu.

I wish you a solution to the exit site issues. If it is is any consolation, after two months of manual exchanges,  I lost any "drain pain" and after a week on the cycler, none whatsoever, besides the random initial drain that makes me want to climb the walls.
Title: Re: A step by step PD experience!!!
Post by: Willis on July 26, 2011, 08:33:26 AM
It's been just over two months for me on the Baxter cycler and the drain pain is finally starting to be tolerable. I'm even able to actually sleep all night long sometimes now, though just last night I got "Low Drain" alarms TWICE.  >:(

For some reason I don't always drain well when laying down and then the alarm goes off...sitting up gets the drain started again, but then I'm wide awake...

Just FYI...on the Baxter machine it IS possible to turn the volume of the BEEP down to a tolerable level...I recommend you look in the manual and do that. The default volume would make the neighborhood dogs howl!  :P

 
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on July 26, 2011, 11:09:40 AM
It's been just over two months for me on the Baxter cycler and the drain pain is finally starting to be tolerable. I'm even able to actually sleep all night long sometimes now, though just last night I got "Low Drain" alarms TWICE.  >:(

For some reason I don't always drain well when laying down and then the alarm goes off...sitting up gets the drain started again, but then I'm wide awake...

Just FYI...on the Baxter machine it IS possible to turn the volume of the BEEP down to a tolerable level...I recommend you look in the manual and do that. The default volume would make the neighborhood dogs howl!  :P

 

for the time being I will be doing CAPD, so I wont have these problems yet, but this may change after my PET test (I am waiting to see how long I will have to be on b/c if it's over 8 hours I am sticking with manuals)
but any advice sure is great  :2thumbsup; 

 :thx;
Title: Re: A step by step PD experience!!!
Post by: mcclane on July 27, 2011, 07:53:11 AM
It's been just over two months for me on the Baxter cycler and the drain pain is finally starting to be tolerable. I'm even able to actually sleep all night long sometimes now, though just last night I got "Low Drain" alarms TWICE.  >:(

For some reason I don't always drain well when laying down and then the alarm goes off...sitting up gets the drain started again, but then I'm wide awake...

Just FYI...on the Baxter machine it IS possible to turn the volume of the BEEP down to a tolerable level...I recommend you look in the manual and do that. The default volume would make the neighborhood dogs howl!  :P

 

i had my baxter cycler's volume turned down to its lowest possible setting.  It was still loud !  I was very close to taking a baseball bat to the machine.  :Kit n Stik; :yahoo;
Title: Re: A step by step PD experience!!!
Post by: HouseOfDialysis on July 27, 2011, 02:08:20 PM
As someone who has lost a lot of his hearing, I have the cycler cranked up to the loudest possible setting and I may or may not hear it.
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on July 28, 2011, 08:37:24 AM
7-28-11

Yesterday at my training session, I filled myself with 2000ml yellow (1.5), dwelled for 1.5 hours, drained and my fill was 7 minutes long & my drain was 6 minutes  :clap; :clap; Oh yea the only pain I had was right at the very end of my drain & I just clamped off super quick & it went away  :bow; 

I practiced on the dummy like 16 times  ;D and I feel like i can do an exchange in my sleep now  :o

Mandy is "letting" me go the entire weekend on my own as a practice run  :clap; :yahoo;

soooo what that means is today SHOULD (if everything goes perfect, which it will) be my last day at in-center Hemo  :bandance; :yahoo; :2thumbsup;

I have to come to the center Friday at 9am then when I leave, I am leaving full  :yahoo; and I am on my way to my trial!!!  wish me luck

until next time
 :waving;
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on July 29, 2011, 08:46:08 AM
Friday 7-29-11

so as we speak right this very second I am at home full with 2000ml yellow (1.5)  :yahoo; :clap; :flower; :cheer:

I went to my training session at the center from 9-11am and she sent me on my "trial" run home I have the rest of today, Saturday, Sunday, Monday and I got to go back in Tuesday at 9am to report back how I did.

I am so excited and scared at the same time!!!!!

Tune in to Read about my progress :) 

until then

Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on July 30, 2011, 08:56:31 AM
7-30-11

My first night all by myself with PD........  :yahoo;

I have TERRIBLE I MEAN FRIGGIN TERRIBLE drain pain... however I am lucky to only have it right at the very last drip, so I just clamp off really really fast!!
I also noticed that when I am filling I had terrible pain in my stomach (felt like menstrual cramps) in 2 out of the 4 exchanges that I did yesterday, so what I did to try to help the pain was 1.  stood up, then I closed off my transfer set just a little and that seemed to ease the pain......... I did all yellows (1.5) 2000ml for each exchange which went like this:

11am- 2000ml out
3pm-2100ml out
6:30pm-2300ml out
10:30pm- 2400 out

total UF 800ml  (which I think is about "normal") I hope anyway???   ??? ??? :waiting;


Now last night we went to the Casino (lost $150  :thumbdown; booo :() so when we got home at 3am I did my first exchange of the day at 4am which I drained out of 2300ml.... woke up and did my second exchange of the day at 10am, drained out 2300 and filled with Green (2.5) 2000ml... I filled with Green b/c my face was just a little bit puffy and my BP was running just a little bit higher than "normal" for me... I am contributing that to the 5 cups of coffee that I had while at the casino, but no one really knows   :rofl;

today I am headed out and will not be home till about 5pm soooo here's to hoping that I do not die with that long friggin dwell   ;D

All in all..... i have had NO MAJOR problems (knock on wood)  :2thumbsup;   :cheer:

solution is so clear that it is scary  :o

Oh yea one thing that I am noticing is that I have no appetite at all..... I am so "puffed" up with Solution that not only do I look pregnant, I feel like it..........I have the worst full feeling in the world which I am hoping goes away with time b/c I can't wait to eat me some potatoes, tomatoes, & banana's!!!  :2thumbsup; 

And I have never been more excited to scream that today is the first Saturday that I have off in 10 months........ see ya later in-center Hemo!! I sure will not friggin miss you and your stupid needles!!!!!  :flower; :cheer: :clap; :2thumbsup; :yahoo;

Dialysis has controlled my entire life for the last 10 months & now I am taking my life back!! so screw you Kidney Failure!!!!!!!!!!    :Kit n Stik;

until next time

 :waving;


Title: Re: A step by step PD experience!!!
Post by: HouseOfDialysis on July 30, 2011, 05:25:22 PM
You will assimilate to the fullness in a while, but it does take some getting used to. Also, your center of gravity changes, too.

I think it's fun to inspect the drain bags and watch the dancing fibrin pieces. It's like a poor man's lava lamp without all the fun vivid colors.

Good luck with CAPD and the casino!
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on July 31, 2011, 08:03:54 AM
Also, your center of gravity changes, too.



Oh Dear god  :lol;
 ;D
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on August 03, 2011, 05:26:38 PM
8-3-11

Well I am fast approaching my first whole week on PD  :bandance;

I had my meeting with Mandy to see if my trial period was "OK" and I got my lovely 24 hour urine catch bottle (boy I sure do not miss doing them  :'( ) (and I should be grateful that I still make urine)
and she said my numbers were great and did not absorb at all!!  :2thumbsup;
my weight however is up by 2.1kl since Friday, now I am not sure if its fluid or all the potatoes, tomates, bananas I have been eating  :waiting; so I have been doing greens (2.5) like crazy to see if I can get it off!! I gotta do something.... maybe lay off some of those foods that I just love and have not had since starting dialysis

My total UF went like this:

Friday: 800ml
Saturday: 1400ml
Sunday: 1200ml
Monday: 900ml
Tuesday: 1300ml (and I absorbed for the first time 100ml in the first exchange of the day)

The drain pain is TERRIBLE!! I hate it!! :boxing;
the fill pain is CRAPPY!! I hate that too!!  :boxing;
my BP is PERFECT, not puffiness in my legs/feet
no temp
Exit site is looking great  ;D
I even had sex while full!! and well it was like nothing has changed (thank god for that) the one thing that I enjoy that I can still do!! YAY!! :cheer: (I do not like the big ol' belly... yuck!! I am thin so it is really noticeable on me and I have yet to "allow" my boyfriend to touch me below the boobs or above my belly button, or take my shirt off....... (I think its gross and wonder how he would ever still find me attractive  :'( ) I have that 12 inch transfer set hangin off of me and then I have the stupid panty hose cut off top on (b/c I hate the tape) eww its so gross!!! (god I hate this sh*t  :'( :'( )

 

I am not going to sugar coat it, it does really suck having to do exchanges every 4-5 hours I feel like my life is on a time clock!! however I really hated doing in-center hemo so I just think about that when I start to think PD sucks!!

I feel really great and I sure do not miss the 9 hour recovery times at all that I had with Hemo!!!

OH I almost forgot... I got my first order, holy cow.... I have 47 boxes of medical supplies (Jesus I hate kidney failure  :'( ) in my perfectly organized, clean house!!

 
Welcome wbdoug aka: Bill to the lovely world of PD as he had his Cath placement surgery today!!  :welcomesign;

Houseofdialysis: I would really love to hear your thoughts on switching from manuals to the cycler??? how is the drain pain? fill pain? and anything else you can offer would be great, b/c I am really hearing  some  horrible things about the cycler with the pain....... YIKES!!!

until next time
 :waving;
Title: Re: A step by step PD experience!!!
Post by: Meinuk on August 03, 2011, 05:54:33 PM
Tb, I am loving reading this!  Thank you for being so open and honest about the process.  As for the boxes... I'd like to say that it gets easier, but I still have nightmares about cardboard boxes.

All in all, it sounds like you are doing really well! Hopefully the pain will subside.  Anyone with PD experience have any advice/timeline on that?

Thanks again for sharing,

Anna
Title: Re: A step by step PD experience!!!
Post by: HouseOfDialysis on August 03, 2011, 07:18:27 PM
tbarrett2533: Every body is different with fill/drain pain and discomfort. Mine alleviated with manuals after two months. Initially, the jolt when I went dry was enough to make shudder and want to scream bloody murder. But it eased and now, I have to watch the line for flow to see if I am draining or not. I hope you have a similar way with it. You get to know your body well, at least.


On the cycler, the first two nights, the initial drain was a touch less than excruciating for the first five minutes. I just gritted my teeth and got through it. After that, there is a random drain that may wake me up once a month or so and jolts me back to shades of that first cycler drain, but it's only for fifteen seconds or so, then I fall back to sleep. All in all, after three days, my body got the hint and all was well after that. Minus the once a month reality check.

Any questions, feel free to ask, email, FB message, whatever... I'm always happy to lend a hand if I can.
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on August 03, 2011, 07:51:41 PM




Any questions, feel free to ask, email, FB message, whatever... I'm always happy to lend a hand if I can.

I tried to find you on FB (b/c it says to search for you under your picture here) so when i did it showed up the cutest little boy ever and it did'nt look like you so I was not sure if it was you or not   :waiting;
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on August 03, 2011, 07:54:19 PM
Tb, I am loving reading this!  Thank you for being so open and honest about the process.  As for the boxes... I'd like to say that it gets easier, but I still have nightmares about cardboard boxes.

All in all, it sounds like you are doing really well! Hopefully the pain will subside.  Anyone with PD experience have any advice/timeline on that?

Thanks again for sharing,

Anna

Thank you
another member in another thread even mentioned this post which I guess makes me a celeberity here on IHD  :lol;
 :rofl;
Title: Re: A step by step PD experience!!!
Post by: HouseOfDialysis on August 03, 2011, 08:13:34 PM




Any questions, feel free to ask, email, FB message, whatever... I'm always happy to lend a hand if I can.

I tried to find you on FB (b/c it says to search for you under your picture here) so when i did it showed up the cutest little boy ever and it did'nt look like you so I was not sure if it was you or not   :waiting;

That's my son, Elijah. My wife is quite a bit darker than me. :)
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on August 03, 2011, 08:16:28 PM




Any questions, feel free to ask, email, FB message, whatever... I'm always happy to lend a hand if I can.

I tried to find you on FB (b/c it says to search for you under your picture here) so when i did it showed up the cutest little boy ever and it did'nt look like you so I was not sure if it was you or not   :waiting;

That's my son, Elijah. My wife is quite a bit darker than me. :)

well aww he is the cutest thing ever!! and now that I know thats you for you sure i am headed on over to FB (which is my "other" obsession) and send you a friend request :)
Title: Re: A step by step PD experience!!!
Post by: HouseOfDialysis on August 03, 2011, 08:18:25 PM
He gets ALL of his looks from his mother.
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on August 08, 2011, 06:05:27 PM
8-8-11

Had me a little scare with my Friday night exchange...... blood in the drain bag....and I mean ALOT!! so being the PD newbie that I am what do I do?? that's right I freak right out and start thinking of the absolute worst.... :( :'(

slept like crap then wake up to do my first exchange and even more blood.... YIKES so while I am draining I am dialing my unit and spoke to Mandy she told me to come over and get some heparin, do some rapid exchanges with room temperature solution (which I did not do the latter b/c I knew that if I did, I would have shoulder cramps like crazy   :urcrazy;

went and got the heparin, did 2 rapid exchanges (with the heparin) and by the 2nd one it was Rosy.... that really made me smile  :cheer:

So after speaking to MAndy I was unsure why this happend to me..... 1.  No period, and 2.  I did not lift anything heavy so what the heck... so what do I do...that's right I rely on my fellow IHDers   :bandance;

Turns out it appears that i was prolly ovulating (I counted back from my last period and it was 17 days from it) so we shall see if I get my period within the next two weeks.....

so everything appears to be going very well...... I love PD!! I really do....... I feel so much better however since I noticed this blood I have had terrible pain in my entire right side from the shoulder down and its worst when I laugh, or cough and its not all the time...... very random and  I don't like it  :thumbup; so I decided that if its not gone with in a few more days that I will call my PCP and schedule an appointment. 

OK so here is  the problem that I seem to be having... SEX... I know I know we need to keep it PG however its not so much about Sex, its about approaching my BF with my concerns regarding sex with this dumb cath....... What I mean is he wants my shirt/PJ's off during, I keep refusing.... I mean do I need to yell it at him so he gets it..... I can tell you that I would not be turned on by seeing something like that so if anyone has any suggestions on how I can approach him with this that would be EXTREMELY helpful

Until Next time
I think I am going to change my name to PD lover HAHAHAHAHAHAHAHAHAHAHAHA  :rofl; :rofl; :rofl; :rofl; :clap; :bandance; ;D

 :waving;
Title: Re: A step by step PD experience!!!
Post by: jbeany on August 08, 2011, 06:38:30 PM
Okay, everyone under the age of 18, back out of the discussion now!

Don't yell - just tell him it still freaks you out to see.  It's a distraction to you, even if he isn't thinking about it.  Maybe it's time to invest in some corset-style lingerie, so you can stay covered over the tube, but all the bits he wants to see are out in the open.

I was just having this discussion with one of my girlfriends - that even if I get to the point that I'm healed from all my transplant complications and this last giant hernia surgery, I still think I'm going to be uncomfortable naked in front of anyone.  I've not only got a giant scar from bra line straight down the middle to bikini line - I don't even have a belly button anymore!  I totally don't look normal.  She just shrugged it off.  Her point was that most men don't see those kind of details when there's a willing, naked woman in the room with them!   ;D  She's got a point....
Title: Re: A step by step PD experience!!!
Post by: dawn24 on August 09, 2011, 07:17:24 AM
I don't have any advice about how to get your BF to understand how you feel about this, but from the 'other' side I can tell you that it wouldn't bother me a bit.  My BF, who I am fighting like hell for, is having his surgery on the 15th.  He's shut me out of his life and even said that he can never have sex again.  When I called him out on that he said 'I'm going to have a damn tube hanging out of my side'.  From the standpoint of the significant other I can tell you that the cath (for me at least) wouldn't matter at all

Thank you for doing this thread.  If he lets me back into his life this will help me know what understand what he is going throough.  Even if he doesn't let me back into his life at least I can send him your story so he will know what to expect.
Title: Re: A step by step PD experience!!!
Post by: HouseOfDialysis on August 09, 2011, 01:49:10 PM
Dawn, he can bone all day on PD. I'm proof of that.

T, it's for the safety and health to have the catheter in place while doinking, that should be a simple enough concept to grasp. And the belly bands would be my choice to keep it still. Can you just get a flesh colored one to appease that idea of being naked?

As a male with a catheter, once I'm inside, I don't really care what's hanging off of who, but that's just my penis talking.
Title: Re: A step by step PD experience!!!
Post by: jbeany on August 09, 2011, 01:55:23 PM

As a male with a catheter, once I'm inside, I don't really care what's hanging off of who, but that's just my penis talking.

Proving my friend's point, from a male perspective.
Title: Re: A step by step PD experience!!!
Post by: HouseOfDialysis on August 09, 2011, 02:02:50 PM
Concur!
Title: Re: A step by step PD experience!!!
Post by: dawn24 on August 10, 2011, 05:18:54 AM
Dawn, he can bone all day on PD. I'm proof of that.

T, it's for the safety and health to have the catheter in place while doinking, that should be a simple enough concept to grasp. And the belly bands would be my choice to keep it still. Can you just get a flesh colored one to appease that idea of being naked?

As a male with a catheter, once I'm inside, I don't really care what's hanging off of who, but that's just my penis talking.

LOL.  Unfortunately with "DBF" it's a self esteem issue and a self imposed restriction  ::)  You have a great attitude HouseOfDialysis, wish you could talk some sense into my man, he feels like he is on a dark and lonely road.
Title: Re: A step by step PD experience!!!
Post by: billybags on August 10, 2011, 06:13:13 AM
HouseOfDialysis, You make me laugh, your a typical man. Thinks with his d****
Title: Re: A step by step PD experience!!!
Post by: HouseOfDialysis on August 10, 2011, 01:39:19 PM
Dawn, he can bone all day on PD. I'm proof of that.

T, it's for the safety and health to have the catheter in place while doinking, that should be a simple enough concept to grasp. And the belly bands would be my choice to keep it still. Can you just get a flesh colored one to appease that idea of being naked?

As a male with a catheter, once I'm inside, I don't really care what's hanging off of who, but that's just my penis talking.

LOL.  Unfortunately with "DBF" it's a self esteem issue and a self imposed restriction  ::)  You have a great attitude HouseOfDialysis, wish you could talk some sense into my man, he feels like he is on a dark and lonely road.

If you want to facilitate a conversation, I'm down.

And billybags, I'll take that as a compliment. I'm all red-blooded American male, yes. I make no apologies for it. However, my wife thinks I should apologize for many things. ;)
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on August 10, 2011, 01:40:35 PM
HouseOfDialysis, You make me laugh, your a typical man. Thinks with his d****

 :rofl; :clap;   :lol;
Title: Re: A step by step PD experience!!!
Post by: HouseOfDialysis on August 10, 2011, 01:45:27 PM
I do think with my kidneys first at times, but yeah... Usually, my dick is in charge.
Title: Re: A step by step PD experience!!!
Post by: dawn24 on August 11, 2011, 05:43:53 AM
HouseOfDialysis, You make me laugh, your a typical man. Thinks with his d****

 :rofl; :clap;   :lol;

I wish!  No way he'd talk though.  He's not talking to ANYONE. 
Title: Re: A step by step PD experience!!!
Post by: drgirlfriend on August 11, 2011, 07:08:37 AM
I do think with my kidneys first at times, but yeah... Usually, my dick is in charge.

 :thumbup; That is pretty much my boyfriend, right there! Ever since his exit site started healing he's been ready to at least get to 3rd base. We haven't gone all the way yet. I think I'm more concerned about it than he is. And when I mean concerned I mean I don't want to accidentally hurt him. If I had the catheter, I'd probably be more self conscious because I'm prone to that anyway.
Title: Re: A step by step PD experience!!!
Post by: HouseOfDialysis on August 11, 2011, 11:40:51 AM
We waited a few months to actually start bumpin' uglies after I was comfortable with it and handling it. Not to mention, healing.
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on August 11, 2011, 12:48:22 PM
We waited a few months to actually start bumpin' uglies


HAHAHAHAHA this is friggin awesome right here... bumpin uglies.... LOVE IT!!!!!!!! :rofl;
Title: Re: A step by step PD experience!!!
Post by: HouseOfDialysis on August 11, 2011, 01:33:27 PM
I got a million of 'em. There's always trawling the wedding tackle.
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on August 11, 2011, 02:34:16 PM
I got a million of 'em. There's always trawling the wedding tackle.


I love it!!! I never heard so many ways to say gettin it on.... ur poor wife.......... I can see her face now when you say, "Hey hunny wanna bump uglies? or trawl the wedding tackle?"  :rofl; ;D  a true romantic LMAO!!!!  :sir ken; <----------- that's my ass being laughed off LOL  :rofl;
Title: Re: A step by step PD experience!!!
Post by: HouseOfDialysis on August 11, 2011, 02:46:34 PM
Believe it or not, she gets a body rub before sex, always. I can be the romantic and sensual type at times.
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on August 11, 2011, 02:52:34 PM
Believe it or not, she gets a body rub before sex, always. I can be the romantic and sensual type at times.


AWWW <3  lucky lady  :guitar:
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on August 14, 2011, 10:57:28 AM
8-14-11

Ran into a little set back/Problem...... see other thread :(

In short (B/C I really want to have everything in one thread) I will do a quick summary of what happend

1.  Had pain and shortness of breath for about one week
2.  called the center finally Thursday eve and my Dr. & Mandy were on vaca until Monday
3.  Center staff called on-call Neph and I was told to drain and come in for a Hemo treatment the next  :puke;  >:( :'(  The nurse told me that there were no chairs open for me and that she would have someone call me in the AM to let me know what they were going to do with me
4.  I cried... I mean cried  :( :'( b/c they told me that PD solution could be leaking into my lungs  :'(
5.  Friday 9am the Center's director Joanne called me and told me that she called my Dr.  on vaca and that I could wait for a Hemo Treatment until Saturday
6.  I cried and cried and cried and cried somemore.... got super sad and depressed b/c I really really like PD and was enjoying my freedom and just the thought of having that ripped from me.... was breaking my heart!!!!!!!  :(
7.  Went in for my Hemo treatment..... cried when I got up at 4am.... cried when I got there, cried when they hooked me up, cried during....... then was sick and in bed for the remainder of the day (Just like any other time that I did Hemo)
8.  NO treatments at all today for me.... I sit here dry aka empty
9.  waiting to hear on Monday morning what they are doing with me
10.  Hoping and praying that I can go back to PD tomo!!   :pray;

 :'(

Title: Re: A step by step PD experience!!!
Post by: rsudock on August 14, 2011, 09:58:31 PM
Fingers crossed for ya sistah!   I hope the fluid isn't draining into your lungs how scary!!   :cuddle;

xo,
R
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on August 15, 2011, 04:40:56 PM
8-15-11

 :bandance; :bandance;  ;D

Joanne called me at 9:35am and told me that she spoke to Dr. Sadovnic and that I am to fill with 1500ml instead of the 2000ml and see if I feel a difference. I asked about Hemo and she said NO more for now!! so hopefully I will be saying see ya later you nasty Hemo  :boxing;

Dr. S  said that he thinks (b/c the pain and shortness of breath went away about 2 hours after I drained out) that my diaphragm was getting pushed on by the PD fluid and that is why he wants me to only fill with 1500ml, so I am to do my 24 hour urine catch (which will be the first one) and go in for some lab work on Thursday.

I was told to call if there is any problems with the 1500ml fills.... I am praying  :pray; that I do not have any problems!!!

Oh PD how I have missed you  :lol; ;)

Until next time

 :waving;
Title: Re: A step by step PD experience!!!
Post by: jbeany on August 15, 2011, 07:23:04 PM
Crossing my fingers for you!
Title: Re: A step by step PD experience!!!
Post by: lmunchkin on August 15, 2011, 07:43:24 PM
Oh TB, Im sorry you are having such problems on PD.  But maybe droppiing it from 2000 to 1500 might be the answer.  It seems to me I recall with my husband they were like tring to find the balance for him! It seems like they were north one day and the next they went south, but they finally found what worked for his body and it really mellowed out from there!

Bless your heart, I hope they get you figured out and praying its not draining into your lungs!  Do they hear rattling in your lungs?

lmunchkin     :kickstart;
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on August 16, 2011, 12:20:01 PM
  Do they hear rattling in your lungs?

lmunchkin     :kickstart;

No rattling and in fact the pain went away as soon as I drained.......

I got my fingers crossed :)

day 2 of 1500ml fills and going good (so far)

 :cheer:
Title: Re: A step by step PD experience!!!
Post by: HouseOfDialysis on August 16, 2011, 02:01:46 PM
Good to hear!
Title: Re: A step by step PD experience!!!
Post by: jbeany on August 16, 2011, 02:03:12 PM
 :cheer: :cheer: :cheer:
Title: Re: A step by step PD experience!!!
Post by: wbdoug on August 19, 2011, 09:15:39 AM
Hi Tbarrett

Is your pd still looking O.K.?

Bill
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on August 25, 2011, 07:04:23 PM
8-25-11

Just a quick little update:

I have been filling with the 1500ML and no pain, shortness of breathe  :clap;

Recently though (since yesterday) I am absorbing like crazy!!!

Today went like this
1.  1200Ml
2. 1400ML
3.  1500ML
4.  1400ml
5. will be done at 11pm. 

Now, I do 4 exchanges a day however, I decided to do 5 today with all Greens to see if this helps  :waiting;


What I do not understand is why I am absorbing all of a sudden??

Answers anyone??
tips??

prior to yesterday my total UF's were 1500ml-2500ml then this crap I don't get it, any advice on this would be great!!

I have my first clinic visit tomo at 1pm  and you can bet that I will be talking about this

I just hope that I can continue to do PD as long as possible... I gotta say at first I thought that this was a HUGE burden in my life, but now it has just become a part of my life and I do not stress over it anymore!!!

until next time
 :waving;
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on August 25, 2011, 07:09:46 PM
Bill,

I love it!!! I hope and pray that I can continue to do PD until Transplant!!!!
How are things going for you?

I have had some personal things going on in my life and IHD has takin a backseat, so I have not been reading anything on here.... I feel like I am having withdrawls  :rofl; :rofl;

Give me a quick update... you should be training by now??
did you do any flush's??
any exit site problems??
Title: Re: A step by step PD experience!!!
Post by: drgirlfriend on August 25, 2011, 07:13:56 PM
  :2thumbsup; So glad things have smoothed out for you! Good to hear! My boyfriend started absorbing earlier this week and it turned out that his seemingly minor constipation was the culprit. Once things started flowing, things started flowing! Hope your answer is as simple.

Be well lady!
Title: Re: A step by step PD experience!!!
Post by: wbdoug on August 25, 2011, 07:16:38 PM
Good to hear from you!!! You hadn't posted for awhile and I was a tad worried.

Bill

NOTE: You posted while I was typing the above responce ;D

Exit site looking good----Been flushed 3x and working O.K. I start training on Monday
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on August 25, 2011, 07:20:09 PM
Good to hear from you!!! You hadn't posted for awhile and I was a tad worried.

Bill

NOTE: You posted while I was typing the above responce ;D

Exit site looking good----Been flushed 3x and working O.K. I start training on Monday

Are you doing baxter? if so... its a cake walk!!

I know you are not excited about starting the D, but it will just become a part of who you are  :2thumbsup;

Keep us posted on here.......

I can't wait to hear how training goes for you.......

 :cheer:
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on August 25, 2011, 07:22:51 PM
  :2thumbsup; So glad things have smoothed out for you! Good to hear! My boyfriend started absorbing earlier this week and it turned out that his seemingly minor constipation was the culprit. Once things started flowing, things started flowing! Hope your answer is as simple.

Be well lady!

as soon as I read this I literally took of running to the bathroom to take two stool softners  :rofl;

these last few days I have had a lot of personal CRAP going on and it turns out that I "forgot" that I have not gone to the bathroom for about 2 days  ;D

I hope this works!!

thanks so much!!!
Title: Re: A step by step PD experience!!!
Post by: Willis on August 26, 2011, 10:44:49 AM
Recently though (since yesterday) I am absorbing like crazy!!!

Today went like this
1.  1200Ml
2. 1400ML
3.  1500ML
4.  1400ml
5. will be done at 11pm. 

Now, I do 4 exchanges a day however, I decided to do 5 today with all Greens to see if this helps  :waiting;
So I assume you've been using yellows (1.5%)? I can't use yellows or I absorb like crazy. I may keep one box of yellows on hand, but they are worthless to me. Even greens are a bit weak for me...since I'm on a cycler I can use 1 red and 1 yellow which has a net effect of slightly more strength than greens...I figured something like 2.8%. On CAPD I guess you can't do that, so I'd recommend if you have a negative UF after a cycle that you try a red. I'm using straight greens right now, but occasionally do green/red and a couple of times when my BP was extra high I went red/red. Probably wouldn't want to do red/red all the time, but every one has a different absorption rate. Did you have a PET test yet? That measures your individual absorption rate.

 
Title: Re: A step by step PD experience!!!
Post by: paul.karen on August 26, 2011, 10:58:18 AM
Also make sure there is no fibrin in the bag.  That can block the output when drianing but can easily be fixed with some heprin.

Title: Re: A step by step PD experience!!!
Post by: JLM on August 26, 2011, 05:24:37 PM
I was having a problem retaining fluid.  Now I do yellow, green, yellow, green.  BUT with a 3 hour dwell and I am dry at night.  I drain, but don't fill.  This has made a BIG difference for me. I am hoping when I get back to Texas the clinic there will let me continue.  Although it is a pain having to get hooked up every 3 hours.  I start at 7 am
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on September 07, 2011, 09:51:08 PM
9-8-11

I went to my first clinic visit and had my first months labs on PD which were PERFECT!!!  :cheer:

Neph told me that I am not getting enough dialysis, but that he is not that worried about it b/c of my residual kidney function is carrying me!

I am absorbing like a crazy person and I just don't get it, my weight is up, fluid in my legs-feet (but not too bad) my BP is perfect
I spoke to Mandy and she just keeps telling me not to worry about it b/c I have my first PET test this month & after that we will have a better idea of what my prescription will be!

Oh yea I am back to 2000ml fills and so far no pain!!!
Neph says that he wants me even higher than that........ :puke;
Oh yea, Baxter is RETARDED!! .... they send me 20 boxes of green for the cycler (I do manuals) I call them, then they send  me 20 boxes of yellows when I already have 15 yellows and needed only green this month!! I call them, and they finally got it right, however I now have 40 boxes of crap that I do not need and I have to store it until next month when a Baxter driver delivers my shipment!! UGGHHHHH!!!

All in all, I feel pretty good and I really do love PD!!!!!!!!! thank god for it!! :bow;
Until next time
 :waving;
Title: Re: A step by step PD experience!!!
Post by: billybags on September 08, 2011, 04:34:17 AM
I know what you mean about Baxter. They ring up, you tell them what you have got, you tell them what you do not want and wholler they send what they WANT any way. Fu**ing pointless. mean while the box's are every where. They are thinking of adding   another bag, my husband  does the over night cycler, we do 3 x 5000 and final fill of 200. Whwere the hell am I going to put more box's. I am glad your labs are good, we always breath a sigh of relieve when they are, over a bacon butty, so naughty. What a treat. you take care.
Title: Re: A step by step PD experience!!!
Post by: drgirlfriend on September 08, 2011, 05:38:46 AM
Congrats on the great labs!! Good job!
Sorry that Baxter is so lame. The only "problem" we're had with Fresenius is that their deliveries tend to be early!
Title: Re: A step by step PD experience!!!
Post by: Willis on September 09, 2011, 09:20:49 AM
So far I've just TOLD Baxter what to send. I don't even tell them what my inventory is. The one time they questioned why I wanted so many Reds I said call my PD nurse! They did and she told them to just send the damn boxes I asked for.

Kudos for my PD nurse!  :yahoo;

 
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on September 09, 2011, 10:32:28 AM
I have 70 boxs of crap in my tiny little area so you know what i did?
I moved them right outside on the outside uncovered porch where they first delivered them in the frist friggin place!!
The kicker when UPS delivered them to me (both times) I was home making jewlery they never even friggin rang the bell or knocked they just litarrally left them outside on the porch!!!!!!
They could have at least knocked on the god damn door so I could have carried them in or better yet refused the god damn order in the first place b/c it was wrong!!!
Now who knows how long I gotta wait to get them out of my friggin house!!!
UGGGHHHHHHHH :boxing; :rant;
Title: Re: A step by step PD experience!!!
Post by: Willis on September 09, 2011, 12:39:53 PM
I guess it depends on where one lives. I get my delivery from a Baxter truck. It's not always the same driver, but all they do is deliver Baxter supplies. They bring in the boxes and will stack them where and how I want them. They will even go upstairs if that is necessary. (I keep mine downstairs and the driver thanked me for that!) The drivers also check the expiration dates and will rotate the older boxes to the top if necessary. So far, so good!

 
Title: Re: A step by step PD experience!!!
Post by: drgirlfriend on September 09, 2011, 12:48:13 PM
Depending on where you live, UPS can be the laziest bunch of jackasses in the world. They have taken packages straight to the apartment management office then come by and left a note INSTEAD of knocking on the door! Grrrrrrr! I called the dispatcher and complained. They never did that again.

Fresenius has been great so far. My bf calls in what he needs, they deliver on time or early and put the boxes wherever I ask. Super nice!
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on September 19, 2011, 06:41:06 PM
9-19-11.... Update

I am just about ready to throw in the towel with PD  >:( :(

Last week I started to have the absolute worst pain when I filled and drained it literally felt as if my insides were being riped out of me  :'(

I called the center and was told to get on all fours and rock back and forth a few times to see if that would help..... I did this twice and then I was right back on track.... no pain, no problems  :2thumbsup;

then yesterday arrived and the pain is back, yet much worst and when I went to drain, nothing came out....... I kept trying to get solution out for almost an hour then finally I went to the ER which they did not even know what PD was so they had to call Mandy in on her day off and once she got there and hooked me up she was able to get 700 ml (of 2000ml) out in 65 minutes b/c it was a slow drip that she literrally had to milk to get that out........ for everyones information my drains have been running on average 10-15 minutes, and my typical fills last the same so to have a 65 minutes drain is not "normal" for me

Mandy filled me which the pain was out of this friggin world and lasted another half hour......... I got home and go to bed wake up this AM, managed to get 1700ml (of 2000ml) out in a half hour, I fill in about 15 minutes with 2000ml  (with pain that you can not even imagine) go about my dwell......
then at my next exchange........ I go to drain and NOTHING comes out..... i stay hooked up and keep trying for the next hour and NOTHING so I call Mandy and she has me come in, she manages to get 2100 ML out in 2 hours!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

WE fill the pain in out of this world (as if my insides are being pulled from my body)
my Neph comes, I tell him all about my problem the first thing he says is "back to Hemo"    :puke; I freak out and tell him that I don't want to go back to Hemo and that I hate it, he then says, "Well I am not going to let you go weeks on end without a dialysis treatment."
Then he gives me a slip for radiology which I will go in the AM.
and if nothing can be done to fix this pain/no/slow drains in a fast amount of time then I will not have a choice in the matter, I will have to go back to Hemo or die...... I guess it's my choice  :'( :(

I do not know what to do, I am scared, worried, stressed and making myself even more sick about this....
for the record I am not constipated, tried every postion you can think of to try to get these drains to work......
I just feel like giving up with the whole thing, maybe some people can do PD and maybe some can't.........
I am praying something good comes my way   :pray;

until next time
Title: Re: A step by step PD experience!!!
Post by: HouseOfDialysis on September 19, 2011, 06:45:56 PM
Damn, Doll. I hate it for you. I'm hoping they can rectify this for you.
Title: Re: A step by step PD experience!!!
Post by: Joe on September 20, 2011, 07:38:41 AM
Hope they can get this under control for you. I'm finding when I have a slow drain I put Heprin in the next bag and it comes back in line. Just a thought.
Title: Re: A step by step PD experience!!!
Post by: pitagory on September 20, 2011, 08:29:06 AM
I hope eveything goes well and can stay on pd. I also hate hate hate hemo did I mention
HATE.
Title: Re: A step by step PD experience!!!
Post by: rsudock on September 20, 2011, 08:29:20 AM
OH NO!!! TB I am so sorry you are suffering like this with all the pain...I don't know how you can even type all this out...I would totally be freakin' if nothing was draining out....you are one tough cookie!!  I know you want PD but don't let your life hang in the balance....stay strong.

xo,
R
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on September 21, 2011, 09:03:33 AM
Hope they can get this under control for you. I'm finding when I have a slow drain I put Heprin in the next bag and it comes back in line. Just a thought.

Joe, do you do this b/c you have fibrin in your drain bags??
if so I NEVER, and I mean NEVER have fibrin so would it hurt to give Heprin a try anyway??
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on September 21, 2011, 09:06:00 AM
I hope eveything goes well and can stay on pd. I also hate hate hate hemo did I mention
HATE.

I think I may hate it more than you, just saying   :lol;  ;D
and I really hate it when people that are on it, try to convince me that I should love it like they do!!! I just wanna scream at them, then beat them over the head  :Kit n Stik;
Title: Re: A step by step PD experience!!!
Post by: Joe on September 21, 2011, 09:27:13 AM

Joe, do you do this b/c you have fibrin in your drain bags??
if so I NEVER, and I mean NEVER have fibrin so would it hurt to give Heprin a try anyway??
[/quote]

Not necessarily because I have seen fibrin in my drain bag. My PD Nurse advised me that if I see a slow drain, putting Heprin in the next bag would not be a bad idea. I guess you don't always see fibrin in the drain, though it may be building up against the cath inside.
Title: Re: A step by step PD experience!!!
Post by: mcclane on September 21, 2011, 09:40:10 AM
Hope they can get this under control for you. I'm finding when I have a slow drain I put Heprin in the next bag and it comes back in line. Just a thought.

Joe, do you do this b/c you have fibrin in your drain bags??
if so I NEVER, and I mean NEVER have fibrin so would it hurt to give Heprin a try anyway??

i don't know if this helps, but last year on our alaskan cruise (when I was on PD) the draining stopped, I only got like (guess-timating) 200 mL drain.  So I had somewhere between 8-10 L in my gut.  A membrane ripped and I don't have to explain where the dialysis fluid drained too.

Anyways, when we got back to seattle, i called my pd unit, and they told me to up my stool softener and senkot dosage.  They highly suspected that I became highly irregular causing the pd fluid drain to slow/stop.  They were right.
Title: Re: A step by step PD experience!!!
Post by: mcclane on September 21, 2011, 09:42:12 AM
I hope eveything goes well and can stay on pd. I also hate hate hate hemo did I mention
HATE.

I think I may hate it more than you, just saying   :lol;  ;D
and I really hate it when people that are on it, try to convince me that I should love it like they do!!! I just wanna scream at them, then beat them over the head  :Kit n Stik;

then start beating me over the head !  :rofl; :rofl; :rofl;

j/k !  In all seriousness, try and stay on pd as long as you can.  hemo is not fun, i can say that from personal experience.  I hate it like the plague.
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on September 22, 2011, 10:50:10 AM
Good news (I hope)

my Am drain in 15 minutes was 2700!!! (I put in 2000ml)

I am praying that it keeps going like this!!


Heparin is going in my next exchange!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

thank you all so much!!!!!!!!!
Title: Re: A step by step PD experience!!!
Post by: mcclane on September 22, 2011, 11:14:26 AM
best wishes !!  :thumbup;
Title: Re: A step by step PD experience!!!
Post by: drgirlfriend on September 22, 2011, 11:20:30 AM
That's good news! Hang in there, woman!!
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on September 25, 2011, 09:49:35 PM
9-26-11 Update:

OK I am hoping that I am not jumping the gun here, but things APPEAR to be back to "normal" whatever the hell normal is  ;D

The pain that I was feeling in both my drains and fills slowly went away over a 3 day period so that was good  :cheer:
After reading on here I decided to do a fill with some heparin (1ML) and instead of doing all greens I mixed it up with some Yellows and what would you know, I started (slowly) to get fluid off and in record time (yesterday I did an entire exchange start to finish in 21 minutes and drained a total of 2700ml)  :bandance; :cheer: :clap; :yahoo; :thumbup;

so the past 3 days went a little like this:

UF total's

2000ML
1900ML
1800ML

and the most random thing of all my overnight dwells that I always absorbed like crazy....well i am pulling off an additional 400-600 ML!!! Its so crazy  :P but I am loving it!!

I am praying and hoping things still keep going like this!!!   :pray;

Today we were in a Antique bottle show and sale about 2 hours away from our house and for the first time I did two exchanges in my car......now this was very hard (I have a very small compact car)  but very doable.  I made sure that I sanitized everything down, closed up the windows and made my BF mask up.........   

I began to complain while doing one and my BF speaks up and says, "Would you rather that we not be in this show and I can take you back to the center and you can get poked with the needles and sit there for 4 hours?" 
ummm hell no!!!!!!!!!!!!

so far I have took my PD to my moms, my boyfriends mom's and this show and so far so good...... I am just really really really careful and I make sure everything is as clean as it can be!!!!
this is the freedom that I was talking about right here!!! I love knowing (especially now that I actually went far away from home and did exchanges) that I can go anywhere and do anything that I want and still "do dialysis"
PD almost makes me feel normal again minus my 12 inch power cord (that's what my BF calls it  :rofl;)  and the 50 boxes of medical supplies and the careful math calculations to ensure that I have enough of everything that I need
In all seriousness, PD is not that bad and I really like it compared to the dreaded awful in-center Hemo  :puke;

my labs were alll perfect!!! Phos 4.2 potassium 4, calcium (lil high) 9.5, albumin 4.4, BUN 31, PTH, 225
To be honest, I was just a little bit worried about my labs going from Hemo to PD, b/c while I was on Hemo my labs were PERFECT!!! but the last 2 months PERFECT PD labs so that makes me happy!!!  :2thumbsup;

I feel as if I am missing something here  :waiting; rest assured that if I think of it, I will be back  ;D

until next time

 :waving;
Title: Re: A step by step PD experience!!!
Post by: drgirlfriend on September 26, 2011, 05:20:06 AM
That is all such good news!! I'm so glad!
Rock on!
Title: Re: A step by step PD experience!!!
Post by: pitagory on September 26, 2011, 07:52:30 AM
Yes I am so happy for you :yahoo; hope it stays that way for a long time until you get your transplant.
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on October 16, 2011, 06:39:36 PM
10-16-11 UPDATE!!

Well let me see here.... I do think it has been some time since I posted my update... pardon if I leave anything out  ;D

I turned 32  :( on October 11, 2011!!!!  booo  :(
on a super positive note..... today marks one full year with not even a single puff of a cigarette!! (that is the one thing positive that came from have kidney failure... I had to quit smoking in order to get "on the list")

my BF took me to casino Niagara and to Niagara Falls for 2 days and yep you guessed it I had the trunk of the car packed full of all my PD supplies..... shoot I did exchanges in the car, in the hotel and we even stopped at his Grandma's house in Buffalo and I did an exchange there..... I love the flexibility PD offers me.... my BF and I were just talking about how if I was on Hemo I would have never been able to even go on that trip at all!!! soooo life is good!!  :flower;
Oh one small problem while I was so worried that I was going to forget something that I need to do my PD I ended up forgetting my entire bag that was full of my hair products and makeup  >:( so my poor BF had to go buy me EVERYTHING new or I was not leaving the hotel room  :angel;
I had to go to the center and do my annual care plan that is always a good time  ;D
I had the very last step in the transplant evaluation just last week (image of my kidneys)
so guess what ladies and gents?? I am FIANLLY on the list!!!!!!!!!!!!!!!!!!
here is to life on the list..... just like I do with PD..... I am not going to watch the clock I am going to continue to live my life without wonder and worry!!!! (well worry that is not possible  :urcrazy;)

things appear to be going very well and I am LOVING PD!!!
Now when I go to that stinky center I preach not only about diet..... I preach that everyone who can, should be on PD!!! :cheer:

until next time
The PD princess   :clap;
 :waving;
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on October 16, 2011, 06:48:49 PM
this update was from 10-5-11 so its just a little backwords  :(

I had my first PET test Thursday and today I met with my Neph to go over the results and this is what he said:

1.  Creatinine and Urea are being removed!!!!   
2.  I do not absorb
3.  I can continue to fill with 2000ml, 4 exchanges (CAPD) with the last exchange of the day being green, but I can choose whatever I want(yellow's Green's) for the remainder of the day just to keep my weight & BP in check.

He then looks over my labs which are PREFECT   has Mandy check my BP, Pulse, Weight, listens to my lungs, checks my ankles then says, "Well I can't seem to find anything wrong with you."       

Next clinic visit is 10-19-11!!!!!!!!!!!

They (the D staff and Techs) when I was doing in-center hemo used to call me the "dialysis princess"  I think I will rename myself the Peritoneal Dialysis princess 
     
 
Title: Re: A step by step PD experience!!!
Post by: rsudock on November 06, 2011, 01:06:20 AM
we need a smiley face with a tiara on top of its head...this will have to do for now  :angel;   glad to hear the labs were good!

xo,
R
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on November 18, 2011, 09:00:42 PM
11-20-11
Update:

OK I am going to try to remember to get everything in here b/c it’s been awhile since my last update…….
I had my clinic visit yesterday and my BP has been super super super low for ME (105/75) I was C/O dizzy spells so the Neph said that I need to eat more salt!!!  (First “they” don’t want you eating salt, now they do) go figure!
I don’t know if I had mentioned this or not, but I THOUGHT that I had found a correlation between low vit D level and high calcium levels, but anyway I was running at the higher end of normal for my calcium and I did not like that so to make a long story short I found that vit D if it is lower (in my case anyway) and you take a supplement your calcium will go down.  Which mine went from 9.3 to 8.7 and I have only been taking the vit D for 2 weeks, I can’t wait to see what my labs will be next month when I will have taken it for over a month.
The potassium was 3.3  and the first thing the neph said was “do you want a pill?” and my response was, “I am not a walking medi-set, I think this was just a fluke.”  Which I really think it was  b/c lord knows I eat enough bananas, tomatoes, & potatoes to actually kill 2 Hemo patients. All my other labs were SPOT on and I got 2 stars like I ALWAYS DO!!!
Now, onto the more important aspect of CAPD….. The freedom!!
I do EVERYTHING!! I go anywhere I want, I eat what I want…….. I am in complete CONTROL of how I feel!!! Dialysis does not control me any longer and this disease does not consume me half as much as I felt it did while I was on hemo.  The worries I had pre-PD were of body image and were of my Boyfriend not being accepting of my cath….. Well he does not even care about it……. I think the reason I was it took me so long to decide to do PD was b/c of the whole body image aspect and how I THOUGHT Joel (my BF) was going to react (I thought he was going to take one look at me, see my transfer set and 18 inch cord hanging off of my body and not find me attractive anymore then he was going to look around at all these boxes and say get the hell outta my life…… well that was my worst fear and that did not happen…… nothing has changed!!!     
It takes on average 17 minutes from start to finish for me to do an exchange and this includes gathering my supplies so that is less than 2 hours a day I spend doing treatments so while I am hooked up I pole and I do the following: cook, clean, text, get on the computer, make lists, do the dishes, do my hair, put my make-up on, get dressed, get un-dressed, do the laundry, fold the laundry, visit with Joel <3, or sometimes I just sit and sip on my coffee (this is usually in the morning when I am half asleep  )
I have no desire to do the cycler and actually take offense to others trying to push their view of it onto me, I have considered on my options and for starters I don’t sleep at night….. on a good night I will be lucky if I get 4 hours in and that’s on a good night, not to mention Joel and I like to go out to the casino late at night, & we like to go out to bars, we would not be able to do that b/c I would be on a schedule to get home to “hook up” Also, Joel is the sole provider for me and he works and he works very hard and he needs his sleep, he can’t be woke up by alarms in the night and he can’t be worrying if I am alright all night long…… I do not want any drain pain either!!! I do not want the machine (something else that I have to worry about)
I like how portable CAPD is, I like the flexibility that comes with it and since I don’t absorb (unless I use a yellow and have a dwell with a yellow over 4 hours) I don’t watch the clock!!! So I do what I want, pretty much when I want!!!!
I did find that if about once a week I give my membrane about a 4-6 hour break with no solution in at all that I have less cramps, bloated feeling, slow drains, pains and better overall UF’s.  now to achieve this I simply just make sure that I get up extra early that day do all my exchanges and then well lastly do not fill and give my membrane a break…… and Hey it really seems to work!!!
I officially am on the transplant list
No I have no family members or friends willing to be tested

Next month: new transfer set, & 24 urine again

Until next time


 :waving;
Title: Re: A step by step PD experience!!!
Post by: wbdoug on November 18, 2011, 09:22:27 PM
Quit beating around the bush and tell us what you really feel!!!! :bandance;
I have enjoyed reading this thread and I am truly happy for you and your success with pd. I too am glad that I have pd as an option as it is working very well for me and I hope, the same as you do, that this will work for me untill I get that call. Here's to your continued success :beer1;

Bill
Title: Re: A step by step PD experience!!!
Post by: tbarrett2533 on November 18, 2011, 09:34:54 PM
Quit beating around the bush and tell us what you really feel!!!! :bandance;
I have enjoyed reading this thread and I am truly happy for you and your success with pd. I too am glad that I have pd as an option as it is working very well for me and I hope, the same as you do, that this will work for me untill I get that call. Here's to your continued success :beer1;

Bill

Waiting for the call....... its so daunting!!!!!!!!!! :(
Title: Re: A step by step PD experience!!!
Post by: highway61 on November 25, 2011, 04:53:15 PM
For someone just coming into PD this is all very enlightening. Some of it is pretty scary. But I am not switching from HD to PD, I am starting fresh with dialysis and my wife and I feel that PD would fit better with our lifestyle. I hope it goes easier for me.

Title: Re: A step by step PD experience!!!
Post by: Willis on November 26, 2011, 08:54:49 AM
To me, the biggest downside to PD is so many boxes and all the trash! Fortunately, my town provides large rollout recycle bins that can hold 2 weeks worth of all the crap. But since I don't have a spare room downstairs, I have to store the boxes in my living room. It really doesn't bother me that much, but it's not very attractive for those who might care about such things. Setting up and tearing down after running the cycler is a pain but it beats dying. The actual PD itself is the least of it. But it does give me total freedom during the day.

 
Title: Re: A step by step PD experience!!!
Post by: bleija on November 26, 2011, 09:34:41 AM
For someone just coming into PD this is all very enlightening. Some of it is pretty scary. But I am not switching from HD to PD, I am starting fresh with dialysis and my wife and I feel that PD would fit better with our lifestyle. I hope it goes easier for me.


i started out 2 years ago strait on PD, never slowed me down and i did great, never had a bad lab... and i enjoyed being able to eat things other than cardboard again...:)
Title: Re: A step by step PD experience!!!
Post by: JLM on November 27, 2011, 06:04:39 AM
I, too, have to use the living room for my storage and the place to do exchanges.  But we seldom use it anyway.  We futon in it and when we have overnight guest, that is where they bed down.  Kind of cramped in there now, but we don't have that much company.  I star cycler training on December 19th