First full "fill" experience...

[TK101]

So I got my catheter placed about 4 weeks ago and have been getting it flushed once a week. No problems or issues, exit site is healing well, no problems.
Today was my first day of CAPD training and my cycler training to follow on Wednesday.  Still don't have my Fresenius liberty cycler as my cycler was handed off to another patient who was in greater need of it. Apparently the Fresenius people stated they are only making 8 machines a week. (8?!) Whatever, there is a New Newton IQ that just arrived with my name on it. With the rate they are building the machines it had better have a plaque on it that says "handcrafted for..." I guess they are taking the time to do it right. (I hope)

So I begin my first 2000cc fill (2.5%) about 2/3 of the way through I start to feel a little mentally fuzzy. I ask my trainer if the solution should be affecting my mental acuity, she looks puzzled and says no..... Well the feeling passes and I finish the fill. I dod it in record time as welll. I emptied a full bag in a little over 10 mins, the CAPD dial was set at its medium fill rate. They nurse seemed quite surprised, said my cath seemed to be well placed!

I did an hour and a half dwell and drained out, I drained 2200cc in a little less than 10 minutes! (200 ccs of water) The pinch at the end was severe, but she said that would eventually pass as the cath settled in.

Time for the second fill of the day.. I get about halfway through and I started to hear a buzzing in my ears and I felt myself slipping away, room getting dark. I mentioned it as best as I could to the trainer "I'm not gonna make it!" She slams me back in the chair (I was leaning forward) and she clamps my cath and rotates me into a reclining position with my feet up. I never completely passed out, but came very close. She checked my blood pressure and it was I think 80 over 45, and I usually run highish in blood pressure.  It took about 10 minutes to snap out of it.

We called my neph, as she said she has never seen that kinda reaction to a fill. (I told her I like to stand out) My Neph said either something was getting pinched during the fill (I was leaning forward) or it coupled with the high toxins in my blood and stress kinda overloaded my system. (I was thinking I hope he didn't just make that up lol). We dwelled that half fill and I ate lunch.

Drained that away and did the last fill of the day very slowly and in a reclining position. No problems this time, and I took the full bag. Drained that except a few hundred CC's to float the cath, and basically went home. I also completed 3 days worth of quiz's in about 20 minutes thanks to the knowledge I learned here and a few other sites. (Thanks IHD.com!)

All in all a very "fulfilling" experience (rim shot), can't wait to see what happens tomorrow!

TK101

[paul.karen]

hey TK,

i hope everything starts to go a little smoother for you.
Im sure in time all the bugs will be worked out and it wuill just be another habit.  Sadly not a fun habit..

And only making 8 machines a week??  I wonder if that is the norm.

[willieandwinnie]

TK, glad you got through that. I hope it gets easier for you and your machine finally gets built. I know little or nothing about PD, except what I have read on IHD. Keep us posted on your progress. 

[george40]

TK, Im glad you made it through all of that and that things are getting better.

I start my pd training Nov 3. so I am definitely following this thread. Last week the pd nurse filled and drained an entire bag to test things out. All went well until the drain and pinch. That was not a pleasant experience at all! Anyways, I hope things continue to get improve for you.

[peleroja]

Sorry to hear of your bad experiences.  I wonder if the "pinch" at the end has something to do with the equipment.  I'm with Baxter and from day one have never had a bit of trouble.  Sometimes I get a little "achy" when I am completely drained, but that passes as soon as I start to fill.  I guess every "body" really is different!

[TK101]

Day 2:

From what I was told the "pinching" is literally the cath sucking up against interior organs. Similar to a vacuum stuck on a drape. As soon as I clamp off (stop suction) the pain stops. The trainer told me that this pain will pass as the cath settles into a more permanent place inside me. The pinching is getting less at the end of drains and is not so abrupt.

At the beginning of the second fill this morning, (this was my first time with a 4.25% bag) i started cramping! Ouch! I was told this too would pass as it was my abdominal muscles responding to the unfamiliar stretching from the fluid. Kinda like squatting in the garden all day and the next morning your butt hurting! I took in 2000cc and drained out 3000cc. Finally some water is coming off.

During the first cramping episode the "Pre-dialysis" class was being held next door. This is the class where they kinda brief you on dialysis in general etc.. They mentioned it to me while I was filling (and cramping). I said I should enter the class and mention how great my second day of dialysis was going and how I could barely walk, never mind not being able to stand upright! Their smiles turned to frowns as I laughed.

Everything pain wise finally passed, although I did cramp up again on my third fill, although another 1000cc of water drained out. Tomorrow I will be trained on the cycler and take it home for a night run. my "home visit" is Thursday. She comes in and makes sure I am all squared away with an appropriate place to do my exchanges and stuff.

With the toxins decreasing and some water coming off I certainly feel more clear headed and my patience is back, I feel less like the marshmallow man every day.

Things are getting better overall..

TK101

[Joe Paul]

Glad PD is working for you. Hope you continue to do well on it, good luck 

[paul.karen]

Tk glad things are going smoother for you.

Please keep posting as i will be going through the same thing myslef in the near future.
P&K

[Ken Shelmerdine]

It's good to hear a suucces story about PD as just lately it hasn't worked for several people on IHD. Hope it acontinues to improve for you.

[RCA]

Thanks for the updates TK101!  Please let us know how things go with the cycler! 

[TK101]

Day 3:

Hopefuly these posts might help somebody.
This day went pretty smoothly. Cramping during flills are getting less, as well as the pinching during drains. Puling off lots of water.
Overall things continue to improve...


TK101

[george40]

TK, your posts are definitely helping me. I start pd training next week. My nerves have eased up some since reading your posts. Now that your carrying fluid, does the catheter bother you at all? So far, this catheter of mines seem to get in some uncomfortable positions at times. The pd nurse keeps telling me that once I start carrying fluid the uncomfortable feelings will go away. Thanks for your posts.

Day 3:

Hopefuly these posts might help somebody.
This day went pretty smoothly. Cramping during flills are getting less, as well as the pinching during drains. Puling off lots of water.
Overall things continue to improve...


TK101

[TK101]

george40:

My cath only seems to bother me at the end of a drain, and that discomfort is decreasing. While I was healing and they were doing the weekly cath flush they would put 200cc or (tiny amount)so of fluid into me to "float the cath". This provided alot of relief, and I could not feel either fluid or cath at that point.

The full 2000cc load of fluid is more uncomfortable than the cath. Since you are actually decreasing interior volume for your organs things get squeezed. I have only been doing full fills a couple of days and its quite difficult to take a full breath as my lungs can't fully expand. I just have to take thinks slow. I am 37 and have a "long abdomen" as they put it. Someone who is short may have a harder time. My appetite is kinda mixed up. My stomach is empty but there is little room for food, a few bites and I am full.

It just takes awhile for your insides to stretch out I guess, all the above things are on a decreasing trend. I did my first solo manual exchange at home last night, and I made a few boneheaded mistakes, nothing bad, just couldn't locate what I needed readily. I think it would ave been easier if I had tried to set things up similar to what I was used to at the dialysis center where I trained. Your learning procedure while you train, but when something is on the left and your used to it being on the right, it can be confusing.

The only issue I am still having is cramping on the 2nd and 3rd fills, but those episodes durations are getting shorter. I feel a whole bunch better though. The 4.25 bags are difficult at first. I fill with 2000cc and drain over 3000cc+ out. The volume of liquid is expanding inside by a third! Towards the end of the dwell it was really difficult. I will not always be on the 4's, as they are really trying to get the water off me. The 2's are easier to deal with. I have pulled off 8-10 lbs of water...makes alot of difference in the way you feel.

Things are getting better..tonight I do a solo run with the cycler..if the law of gravity remains constant I shouldn't have any alarms. =)

Lets hear how your training goes george40!

TK101

[paul.karen]

Great post TK 

I have a question.  Can you choose wich side to have the cath. placed?
And is it positioned so that you cant lie on your side?  Or can you.
I toss and turn non-stop so im hoping there is alot of leway.

And during your manuel CAPD are you working?
If not could you work and do this do you think.

Can you shower with the cath?
Thx
P&K

[RCA]

TK101, your posts are definitely helping!  There is nothing better than hearing things straight from the patients themselves! 


George40, all the best to you when you start training next week! 

[TK101]

paulkaren:

I think you could probably say which side you wanted yor cath to exit, its is after all your body. My surgeon checked to see where my belt/waist was and checked if I was left or right handed. He said its better to place the cath on the opposite side of your dominate hand as that makes care and inspection easier.  Mine is slightly above my waistline and on my left. (an inch or so below my belly button and about 3-4 inches to the left of it)

I did my first solo run on the cycler last night. No problems! The trainer came to my house to make sure the sycler was the right height in relation to my bed. No alarms at all! I was able to roll side to side with no problems. Just no 360 rolls in bed or you might reel the machine towards you! The closer the machine is to your bed the more slack you have in the line.

I had to jump almost immediately to the cycler. Working while on CAPD would really depend on what you did. I work mainly in the field so I could not really do 4 manual exchages during the day. If you were in an office job it might be more likely. But in my opinion I would rather do the cycler at night and be free during the day. Just make sure your employeer is all up to speed on what is happening t to you. They cannot fire you for undergoing medical therapy, that I think would fall under discrimination. I thought the suction cup on the back of my CAPD adapter was good, you can stick it to a window and perform CAPD in a car.

I had to heal completely before I could shower with the cath. (about 4 weeks as I am diabetic and it takes longer for me to heal) Now, I just have to anchor it with some tape, as you don't want the "skin to cath seal" bearing any weight from the cath hanging. Showering takes a bit longer, but I am getting faster. My exit site care is also performed there.

Feel free to ask any more questions, I am just a few weeks into this and its all still fresh...

TK101

[paul.karen]

Excellent answers Tk thank you very much.

Oh and please call me P&K it is easier..
Sorry but i laughed when you said there is a suction cup for a car window i had a mental picture of myself with a bag on my window. May help if i ever get a speeding ticket??

Only one more question i can think of.
An exit site?  so you have two tubes coming out of you?

And congrats on the Jump to CCPD. With no bells and whistles going off.

It seems like you have adapted to this in a short time.  I realize it is all still very new to you but you have the attitude that i hope to have.  As do SO MANY on this site.

[Red from Canada]

Tk101 mentioned taping your tube for a shower.  My clinic nurse showed me a great way to keep the tube secure.  One of those small "bungee cords that the casinos give out and an elastic band . Secure the eleastic to the bungee and then wrap it around your tube.  Shower away.  it won't come undone and pull on your site.  Hope this helps.  I've been on the cycler for almost two years now and I love it.

[george40]

TK thanks for the encouragement. First off, I was less nervous going to the clinic today for my weekly visit and I know your posts have played a role in that. I filled up with a 2000 cc bag of fluid for the first time. On the fill I felt some pressure down there (cough.. lol) but no real pain. All went well, I filled up in 10 minutes. I just felt all sorts of achey during the drain. The pd nurse had left the room as she did not expect the fluid to drain so fast, so she returned, stopped the drain and off I went (about 200 cc) was left in me and I feel good. The nurse keeps telling me it will start to feel better as training begins. So the catheter seems to be working fine and all seems a go for Monday 8am training start. Thanks for your help in dealing with all of this. 

[TK101]

Lol! I know they mentioned "rectal pressure" in males, I guess thats a euphemism. Yeah it will get better, I started training on Monday and am completely trained for CAPD, and CCP (cycler) by this morning. It was really just paperwork this morning however.  What kinda cycler are you being trained for? I am on a Freseniour Newton IQ, as they could not get me a liberty in time, now I have to wait until they start shipping en masse in December.

Its amazing the amount of water on me...over 10 lbs off as of today, still not at my ideal dry weight yet, but feel a whole bunch better!

P&K: No, just one tube. It fills when the bag is above you, drains when the bag is below you. As for my attitude, I feel very fortunate to be able to do this style of therapy, it could be alot worse. I could not be capable of PD, or have a brain tumor or something else.  I am going through the procedures to be listed for a transplant, so this is just a temporary situation for me. The hoops you gotta jump thought to get and maintain a transplant seem even more daunting than this. Like I said things could be worse, the best I can do is the best I can do.

Last nights solo run was encouraging, I was aware of no pain or discomfort at all during drains or fills. Although the programming got messed up. My "sllep time got set to 14hrs insread of 9 hrs, which extended my dwell times. I only got 3 exchanges last night instead of 4, but I am still okay, and have corrected the programming. I remember waking up and look at the machine to see it displaying a 2:45 hr dwell time instead of something like 1.50 hrs. I knew I was going to the clinic today so was not gonna mess with it while I was sleepy.

TK101 

[BigSteve]

I have been on manual PD now for 1 1/2 weeks. My big trouble during the first weeks was that
they had me on 3000 ml exchanges, and I felt extremely bloated and my back was hurting from
carrying the extra weight. The nurse had me go down to 2500 mls, and I am feeling much better!
I feel almost normal and my appetite is getting better, less pressure on stomach. My first labs came
back yesterday. My potassium is LOW so I had potatos for dinner and lunch today. YUMMY.
Red for Canada: could you explain the shower arrangement more. I don't understand. I just tape
the end while showering although I wear a belt during the day.

[Ken Shelmerdine]

Only one more question i can think of.
An exit site?  so you have two tubes coming out of you?

No there is only one tube. I suppose it should really be called an entrance and exit sight. The cycler pumps fluid though the tube when you fill or if you are doing manual you hang the bag higher than your exit site and you fill by gravity. After the dwell time is up and the fluid needs draining the cycler drains it from you through the same tube by suction. If you a doing manual you put the drain bag on the floor and gravity does the rest.

You can sleep any side you want. It's a good idea to anchor it at bed time with tape between your hip and your bottom rib. (your catheter side hip) that way if you lie on it it will just sink into your flesh where there is no bone to to trap it. Sometimes I do trap the line but you just get a couple of beeps from the cycler and as long as you just change position slightly the alarm stops and the machine carries on as normal

[RCA]

Thanks for sharing all of your experiences for the past week TK101!!!  It's amazing that on Monday, you were about to pass out and by this weekend, you're using the cycler and not experiencing pain! 

Did you get the stand that goes with the Newton?  I'm wondering what it looks like.   How do you have your room set up? 

Did the nurse order everything for you?  Did you have to buy anything? 

[Red from Canada]

Hi Big Steve.  The coiled "bungee" cord goes around your neck. At the bottom, you loop an elastic band so it won't come loose.  Then you proceed to wind the elastic around your plastic tube as tight as you can.  It's like wearing a necklace with a loop on it to hold up your tube.
I hope this helps.

[TK101]

First off, good luck to geroge40 as he begins training today. Maybe he can post his first experiences as well, I know those were the type of threads I was looking for when I was starting out.

RCA: My nurse ordered everything, and its ALOT of stuff. Do yourself a favor and start getting your dialysis space ready early. The procedures generate alot of trash, I think the minimum wastebasket would be a 15 gallon. I empty that about every 3 days. Keep that close to where your doing your procedures so you can just toss stuff in the trash when your doen with it. I got a decent one at wall mart with a spring lid. I should have done the final organization to resemble the way they had it at my clinic. I did get the stand that came with the newton, as my bed is high, I need to get a 6 inch extension to lift it even higher. Its resting on some boxes right now.

Once I get my area set up to my liking I hope to post some pics of my setup.

Yeah I have gone the full weekend on my own, even mixed a few bags last night. Its certainly a "doable" situation, just alot of calcs to determine proper bags to use and in my case, amount of insulin to be injected into the bags before hand. Just don't try to do all this while watching TV! Doh!

TK101