HI ALL
I have my PD cath placement surgery tomo at 7:45am!!!!!
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
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
) that the PD nurse will be the one to tell me when I can use it
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
) shoot I even made a cake
and last night well me and my man, well you know
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
)
today I went to the park and walked around.... just a little pain, but nothing that i can not manage
till tomorrow
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
I am showering daily and simply cleaning the exit site daily
Until next time
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
until next time
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
I drained and filled the dummy 2 times with step by step instruction from Mandy (PD Nurse) learned and have already memorized "SEAL."
got some quik tips on cutting open the drain bags (to get rid of the fluid faster) after an exchange is complete
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)
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
We anticipate August 1, 2011
until next time
Oh yea I almost forgot.... no infection.......
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,
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
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
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 then7-30-11
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
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
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
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
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!!
8-15-11
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
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
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
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
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
Oh PD how I have missed you
Until next time
9-8-11
I went to my first clinic visit and had my first months labs on PD which were PERFECT!!!
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........
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!!
Until next time
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
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"
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
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
The pain that I was feeling in both my drains and fills slowly went away over a 3 day period so that was good
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)
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
but I am loving it!!
I am praying and hoping things still keep going like this!!!
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
) 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
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!!!
I feel as if I am missing something here
rest assured that if I think of it, I will be back
until next time
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
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!!
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
I had to go to the center and do my annual care plan that is always a good time
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
)
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!!!
until next time
The PD princess
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