A step by step PD experience!!!

[tbarrett2533]

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 
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 
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    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    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!!   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 

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 

Until then,
 

[tbarrett2533]

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 
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 

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! 

 

[wbdoug]

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

[tbarrett2533]

7-25-11

  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  )
2.  Dwelled for about 1 hour with 1500ml in, drained with NO PAIN!! 
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 

my weekend was amazing, went to the casino and won $140  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.......  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  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!!! 

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       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:    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  end rant stayed tuned to my next rant 

until next time

  

[HouseOfDialysis]

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.

[Willis]

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! 

 

[tbarrett2533]

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! 

 

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   

 

[mcclane]

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! 

 

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. 

[HouseOfDialysis]

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.

[tbarrett2533]

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  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   

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

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

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

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

until next time
 

[tbarrett2533]

Friday 7-29-11

so as we speak right this very second I am at home full with 2000ml yellow (1.5) 

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

[tbarrett2533]

7-30-11

My first night all by myself with PD........ 

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???   


Now last night we went to the Casino (lost $150  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   

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   

All in all..... i have had NO MAJOR problems (knock on wood)     

solution is so clear that it is scary 

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!!!   

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!!!!! 

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

until next time

 

[HouseOfDialysis]

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!

[tbarrett2533]

Also, your center of gravity changes, too.

Oh Dear god 
 

[tbarrett2533]

8-3-11

Well I am fast approaching my first whole week on PD 

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!! 
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  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!!
the fill pain is CRAPPY!! I hate that too!! 
my BP is PERFECT, not puffiness in my legs/feet
no temp
Exit site is looking great 
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!! (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!! 

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
 

[Meinuk]

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

[HouseOfDialysis]

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.

[tbarrett2533]

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   

[tbarrett2533]

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 
 

[HouseOfDialysis]

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   

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

[tbarrett2533]

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   

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

[HouseOfDialysis]

He gets ALL of his looks from his mother.

[tbarrett2533]

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   

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 

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   

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  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 

 

[jbeany]

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!     She's got a point....

[dawn24]

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.