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Author Topic: Beginning my CAPD adventure  (Read 8180 times)
Stu
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Oooooooh yeah!

« on: January 05, 2012, 11:29:23 PM »

G'day! I'm going to chronicle my CAPD adventures here for those that are interested:

6th Jan 2012
I had my Tenckhoff catheter put in today. What was originally meant to be an overnight stay in hospital ended up as day surgery. I'm not sure what changed the doctors' minds, but when I was off with the pixies in recovery, the nurse told me that if I showed that I could walk about 20 metres I could go home. Needless to say, I gritted my teeth and got the job done!

Given my propensity to have hospital stays end up being much longer than anticipated through all manner of complications, this was an outstanding result.

So I'm now home. Oh the PAIN! Well actually, if I sit perfectly still, it's not too bad, it's the moving around that is killing me. I'm looking forward to sitting on the couch for the next two days watching TV before it's back to work on Monday (I'm fortunate that my office is my lounge-room, so at least I don't have to travel.)

As far as the actual surgery goes, it all seems to have gone well (we'll know more next friday when we try the first flush). The one disappointing thing is that they left me covered in that yellow disinfectant shit, which is going to be interesting given that I can't shower for the NEXT TWO WEEKS (a nightmare for a clean freak like me).

I'm disappointed that I managed to come home from the hospital about 2Kg (4.4lb for our American friends) heavier than when I got there this morning. I think someone lied to me, I asked before the surgery that they note how much fluid they put into me, and they told me one litre). This is not a huge deal, as I still have reasonable kidney function, but I think I'm going to be hammering the diuretics for the next two days, which means getting up and down a lot to go to the toilet, which in turn means PAIN!). My mouth is as dry as a dead dingo's donger. I'm not sure what's causing that, I wonder whether it might be the anaesthetic?

So now here I sit, one step down in this huge (mis?)adventure, a bit groggy and sore, but generally none the worse for wear.

Till next time
Stu
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47 Fluid Control Suggestions for Dialysis Patients
Haemo 3 x a week, Ico bags overnight
Joker, smoker, midnight toker....
Tweet me at @AngryDXGuy if you dare
billybags
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« Reply #1 on: January 06, 2012, 05:31:01 AM »

Stu, welcome to the site  :welcomesign; you sound like a positive sort of guy. So mission accomplished, catheter in situe and awaiting a flush then it is all systems go.  Have you had a delivery yet? That will be some thing to behold. You will feel a bit sore for a couple of days but it gets better. I look forward to your posts.
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Joe
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« Reply #2 on: January 06, 2012, 05:37:31 AM »

Stu, it does get better. And I agree with them kicking you out of the hospital as soon as practical. I was up and moving about 2 hours after my surgery and they released me that afternoon. It was so good to get back home! And the sponge baths for 2 weeks is not too bad, but the shower at the end is glorious!
Hang in there and keep everything clean.
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Live simply. Love generously. Care deeply. Speak kindly.
Leave the rest to God...
beachbum
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« Reply #3 on: January 16, 2012, 06:53:18 PM »

G'day! I'm going to chronicle my CAPD adventures here for those that are interested:

6th Jan 2012
I had my Tenckhoff catheter put in today. What was originally meant to be an overnight stay in hospital ended up as day surgery. I'm not sure what changed the doctors' minds, but when I was off with the pixies in recovery, the nurse told me that if I showed that I could walk about 20 metres I could go home. Needless to say, I gritted my teeth and got the job done!

Given my propensity to have hospital stays end up being much longer than anticipated through all manner of complications, this was an outstanding result.

So I'm now home. Oh the PAIN! Well actually, if I sit perfectly still, it's not too bad, it's the moving around that is killing me. I'm looking forward to sitting on the couch for the next two days watching TV before it's back to work on Monday (I'm fortunate that my office is my lounge-room, so at least I don't have to travel.)

As far as the actual surgery goes, it all seems to have gone well (we'll know more next friday when we try the first flush). The one disappointing thing is that they left me covered in that yellow disinfectant shit, which is going to be interesting given that I can't shower for the NEXT TWO WEEKS (a nightmare for a clean freak like me).

I'm disappointed that I managed to come home from the hospital about 2Kg (4.4lb for our American friends) heavier than when I got there this morning. I think someone lied to me, I asked before the surgery that they note how much fluid they put into me, and they told me one litre). This is not a huge deal, as I still have reasonable kidney function, but I think I'm going to be hammering the diuretics for the next two days, which means getting up and down a lot to go to the toilet, which in turn means PAIN!). My mouth is as dry as a dead dingo's donger. I'm not sure what's causing that, I wonder whether it might be the anaesthetic?

So now here I sit, one step down in this huge (mis?)adventure, a bit groggy and sore, but generally none the worse for wear.

Till next time
Stu

I had my surgery in October. I had the same dry mouth. My mouth was so dry and they wouldn't let me have any water. They gave me a saltine and I nearly choked! I also had a hernia repaired so I was in quite a bit of pain but it subsided after about a week. Good luck on the PD!
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chook
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« Reply #4 on: January 16, 2012, 07:09:49 PM »

Stu, are you an Aussie? That expression, 'dead dingo's donger', makes me think maybe you are. Yes, you are - I lost the post and had to find it again and made the discovery along the way.
All the best with your recovery from the catheter insertion. I ended up so attached to mine that when told they would be removing it during the transplant surgery, I was not happy. It was working so well - could the doctors guarantee the new kidney would be a go-er?! They assured me it's an easy thing to get another PD cath put in - for them, maybe! I remember writing in my diary that it was weird how quickly I adapted to the tube hanging from my tummy.
Wishing you trouble-free PD!
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Diagnosed PKD 1967, age 8
Commenced PD June 2010
Commenced APD July 2010
Transplant March 2011 - so lucky!
"To strive, to seek, to find...and not to yield!"
HouseOfDialysis
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« Reply #5 on: January 22, 2012, 05:13:09 PM »

I'll have been on PD for a year as of February 21st. It's old hat now, more like second nature. It's an odd couple weeks getting acquainted with aseptic technique and properly monitoring vital signs and fluid levels. But it becomes your new normal and I don't even have to think aout it, I just do it. In time, you'll forget what pre-PD life was like.
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Diagnosed with Alport Syndrome in 2004.
AV fistula surgery June 9th, 2010.
PD Catheter surgery February 7th, 2011.
Began CAPD on February 21st, 2011.
Began CCPD on April 29th, 2011.
On Transplant List since June 2010.
highway61
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« Reply #6 on: January 23, 2012, 05:04:53 PM »

I agree with HoD, it becomes second nature after a while. I have only been on PD less than 2 months and my wife and I have adjusted to the routine.
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tbarrett2533
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« Reply #7 on: February 14, 2012, 09:04:04 PM »

Welcome to PD and I hope you will love it as much as I do (been doing CAPD for 8 months and I LOVE IT)
keep us all posted right here!!!!

use us here for any and all the support and questions you may have!!!

If you got to have kidney failure, PD is the BEST treatment option (in my opinion)
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CKD since: 1981
9.22.10: Catheter surgery
9.23.10: Started in center Hemo
10.06.10: Fistula surgery
12.02.10: Started using right upper arm Fistula (15 gauge)
12.30.10: Catheter Removed
07.01.11: Laparoscopic CAPD Catheter insertion
07.29.11: Started CAPD, 2000ml, 4 exchanges (Baxter)
08.15.11: Started filling with 1500ml (instead of 2000ml), 4 exchanges
08.21.11: Back to 2000ml fills, 4 exchanges (3-2.5% & 1-1.5%)
10.12.11: 2000ml fills, 4 exchanges (3 1.5% & 1-2.5% overnight)
11.08.11: Transplant list

Dialysis works for me, I don't work for dialysis!
It's my body, my health!!
Stu
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Oooooooh yeah!

« Reply #8 on: July 11, 2012, 10:19:37 PM »

Well I'm back

I've been thinking a bit about you guys since a chat I had with OKAROL on twitter a week or so ago (hit me up at @chillicool (shameless plug))

I've been doing PD for a little over five months now, here are my thoughts.....

1) I like it more than haemo. I like the fact that I don't have to leave my house for treatment. I certainly like it a little less at the six month mark than I did at the one month mark, it's very time consuming doing 4 bags a day. I'm fortunate that I work from my loungeroom, so once hooked up I just go back to work, but it's a bit of a pain in the ass trying to remember to do an exchange, especially if I'm deep in concentration work wise

2) I've been on one holiday so far, we stayed at two different locations on the Gold Coast (Australia) for about two weeks, and the Baxter deliveries of my supplies went off without a hitch. I'd never been on a holiday through about ten years of haemo, as I'm very particular as to who I will let stick me with the needles. So the longest holiday I'd been on while on dialysis was the dirty weekend type thing with the wife to a local hotel

3) I think I'm going to have a go at the overnight cycler. I'm not an ideal candidate as I'm a restles sleeper, but I'm a bit over having to plan my days around exchanges if I want to go somewhere. I like the idea of freeing up my days

4) I'm not on the list for a transplant, and at this stage I have no intentions of going on the list. Not to say that I won't change my mind at some point in the future, but right now, life is as good as it's been in years. I don't miss the side effects of the immunosuppression, and I don't miss the fear of losing the transplant. I've been there done that twice, and it's nowhere near the panacea that some make it out to be.

So there it is, not much more to say really.
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47 Fluid Control Suggestions for Dialysis Patients
Haemo 3 x a week, Ico bags overnight
Joker, smoker, midnight toker....
Tweet me at @AngryDXGuy if you dare
Zach
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"Still crazy after all these years."

« Reply #9 on: July 12, 2012, 06:18:11 AM »

Glad you're back!
 :beer1;
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
KAF454
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« Reply #10 on: July 12, 2012, 05:07:36 PM »

Stu,

The cycler is kind of a tough adjustment for a restless sleeper but I'd still take it any day over walking around with 2 liters of dialysate in my gut. The couple of times I've had to do CAPD have been absolute misery for me. I finally came to grips with the fact I don't have to babysit the damned machine all night (sort of like getting accustomed to having a newborn in the house) and found I could relax and sleep through everything except the alarm situations. It leaves me alone... I leave it alone... and nobody gets hurt.
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PD catheter inserted 11/2011
CCPD begun 12/2011
Activated on transplant list 01/27/2012
PD efficacy tanked 12/2012. CVC inserted for hemo.
Elected to stay on hemo 01/2013. (10.5 hours per week instead of 8 hours every night? No contest!)

Today I will not worry unless the animals start lining up 2 by 2.
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« Reply #11 on: July 13, 2012, 12:25:05 PM »

Stu,

  It leaves me alone... I leave it alone... and nobody gets hurt.


HAHAHAHAHAHAHA....Plop  This is me laughing my head off
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I'm just where God wants me to be, not one step ahead nor one step behind.
Stu
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Oooooooh yeah!

« Reply #12 on: July 13, 2012, 08:51:01 PM »

Yeah I'm tempted to go to the cycler. I've (at this stage) decided not to go on the transplant list, so I kind of think that the cycler is the way to go as far as lifestyle is concerned

Bit worried about how much sleep the missus will get with the machine in the room, but I guess she'll get used to it, right?
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47 Fluid Control Suggestions for Dialysis Patients
Haemo 3 x a week, Ico bags overnight
Joker, smoker, midnight toker....
Tweet me at @AngryDXGuy if you dare
jbeany
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Cattitude

« Reply #13 on: July 13, 2012, 09:23:52 PM »

Snoring, beeping...potato, patatoe.....   >:D
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JLM
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« Reply #14 on: July 14, 2012, 07:23:43 AM »

I can have my machine 15 feet away from me in another room.  Should I choose to, I can close the door to that room.  I am doing that now as I am dog sitting for two small dogs now.  It took a couple of nights, but they know they are not allowed in that room and don't scratch on the door when I'm in with the cycler.  With the door closed, I can hear the alarm if one should sound.  Works for me!!!
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I'm just where God wants me to be, not one step ahead nor one step behind.
Joe
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« Reply #15 on: July 14, 2012, 08:59:18 AM »

I have my machine in the bedroom next to the bed. The cycling noise is not that bad, though certainly not non-existant. My wife didn't have any problem getting used to it and most of the time even when the system alarms it doesn't wake her up.

As for being restless in your sleep, unless you actually pinch the line closed the system will work on through it.

Good Luck!
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Live simply. Love generously. Care deeply. Speak kindly.
Leave the rest to God...
billybags
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« Reply #16 on: July 15, 2012, 10:13:58 AM »

Stu, you do get used to the machine, bleeping, coughing and spitting and alarming. I still share a bed with my husband and the noise did bother me to start with . Funny enough when he is in hospital and I am on my own, no machine going, I can not sleep. Go for it.
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Whamo
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« Reply #17 on: September 14, 2012, 09:49:47 AM »

Since I'm just about to start the process of going CAPD this thread is very interesting to me.  I absolutely hate hemo now that I'm getting needles stuck in my fistula.  I'm a bleeder, so it's four hours on the machine three times a week, plus another hour waiting to get on and/or get off.  Add the half hour drive to the center, and it's a lot of time wasted. 
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highway61
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« Reply #18 on: September 15, 2012, 05:54:45 PM »

I have to agree with Joe, the noise isn't that obtrusive. The alarms get noticed, as they should, but most often it is a case of clearing a pinch in the line or checking the drain line, if there is one. using a cycler is is pretty simple. That is what I used. But I have to admit that on days I din't have to go to work, I preferred to do manuals. I like ther greater degree of control it allows. Thought the cycler is nicer on a normal work schedule.
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JLM
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« Reply #19 on: September 16, 2012, 12:25:17 PM »

If you are a restless sleeper, be sure to tighten the part of the catheter that gone on the line from the machine.  I had mine disconnected once.  I take it out of the holder and make sure it is tight.  It's a 62 mile trip to the dialysis for me, one way!
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I'm just where God wants me to be, not one step ahead nor one step behind.
Whamo
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« Reply #20 on: October 01, 2012, 01:06:04 PM »

I get my surgery for CAPD on the 10th of October.  I go to the anesthesia briefing in two days.  I think the overnight machine will work for me, but I find everyone comments very interesting.  I'm fasting today, a dialysis after the weekend day, because I hate going into Mondays really heavy.  I hate the washed out feeling when they take out a lot.
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drgirlfriend
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« Reply #21 on: October 01, 2012, 05:33:38 PM »

The boyfriend is a restless sleeper but has done fine on CCPD. We had to switch sides of the bed to make the most of the tube length and to keep him from laying on it too easily. I am a very light sleeper and the machine stopped freaking me out after about a week. It isn't loud unless there's an alarm, but I had to learn what the normal sounds were so I wouldn't be upset by them.

The thing I remember most from his catheter surgery was some confusion as to whether he should lie down to sleep that first few days. The answer to that was a resounding NO. Once he was propped up on the couch, things went smoothly.
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Boyfriend diagnosed with renal failure Feb. 2011. Cause unknown.
PD Catheter "installed" June 30, 2011.
Began CAPD August 11, 2011.
On transplant list 11/23/11.
Started Liberty Cycler 12/1/11.
Whamo
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« Reply #22 on: October 09, 2012, 06:48:49 PM »

I had my surgery today.  I re-read your first post about your surgery, and my experience was similar to yours.  My doctor tied my right-side fat into a knot or something so he wouldn't have to do it later.  It hurts, and the Hydroco/Apap doesn't stop all the pain.  I couldn't even answer the phone because it involved moving from my chair.    But after about eight hours the pain level went down a little bit.  When things go bad; things go bad.  My property manager hit me up for a new security door for my rental property.  I thought it was $1,000, but it's only $100, plus $75 for installation, so I said yes. 
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billybags
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« Reply #23 on: October 19, 2012, 03:47:33 AM »

Whamo, Hope you are feeling a lot better and things are settling down. When have you got to go in for your training and have you had a delivery of all those little box's yet? Little box's my foot.
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Whamo
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« Reply #24 on: October 19, 2012, 01:02:26 PM »

I start training on Monday.  There is a little bruise near my catheter.  My wife says it isn't bad, and she's a nurse with 18 years of experience, so I'm not freaking out over it. 
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