I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: HouseOfDialysis on April 27, 2011, 03:24:55 PM
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The cycler is coming tomorrow morning for my home visit to make sure I know how to hook it up and all that fun jazz. Then, tomorrow night... I try it out. Here's to hoping all goes well. I now have 60 cases of stuff in my bedroom. Wow.
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When is the new singlewide trailer coming to park by your garage to hold all this stuff! ?
:rofl;
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Isn't it fun having a warehouse? My mom keeps asking me how I can stand looking at it (which isn't helpful). You'll get used to it and soon setting up your machine will be second nature.
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I'm going to organize everything by frequency and even make a nightly kit and only have that equipment in the room besides the solution. Everything else, gets moved to the office.
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Make sure to keep extra flex caps, mini caps, and masks beside the bed. I also find it handy to have baby wipes. Plus of course whatever keeps you entertained if you can't sleep. I was so nervous the first night on my own I barely slept.
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Flex caps?
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Im not a Baxter patient but I think those "flexicaps" are those caps that allow you to disconnect in between exchanges. Correct me if I"m wrong - anybody.
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Yes Cath hater that is what they are. If you want to disconnect after a fill to just do whatever you put a mini-cap on your patient hookup and a flex-cap on the patient line coming off the machine.
Just make sure you rehook before the drain starts to kickin.
They may not have sent you flex caps. If you think you might like to unhook during treatments on your next order from baxter ask for flex-caps. Also you can get pateint extension lines so you can add an additional 8-10 feet of line to your setup. This can make the defence of maybe being able to reach a bathroom closeby??
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I remember that first month. Now that I'm off PD permanently (sigh), Baxter took back all their supplies, and I'm planning on moving my small couch in here so I can watch Netflix on my computer in comfort. Not to worry, you'll do just fine. Even after 7 years I sometimes wondered what step came next!
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Last night went well excluding one WICKEDLY intense "cramp" in my right middle torso about 10:30pm. It woke me up like a shot. After three minutes, I wanted to just yank the tube out of me and damn the consequences. It may have just been a one-off thing. I thought it was drain related, but the other four drains didn't wake me up at all.
I had two alarms. One for low drain volume, another for fill not complete. I had a Lost Dwell Time of 1 hour 51 minutes and an average dwell of 52. The dwell time set by the script was 75 minutes.
Overall, it went fine. Drained out my last fill at 7am when I got to work and went about my way. Still a smarting pain in my torso, same spot from last night's rude wake up call. But I think we can work this out and it may just be my body assimilating.
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That sharp pain could be the inner cath sucking up agasint your innards which can cause a little brusing thus continued pain for a day or two.
Sometimes when i drain it just keeps trying to get fluid out that isn't in there. Or it gets a little painful more so then drain pain form when i started. When this happens unless on the last drain (im dry during the day) i will just hit the bypass button. Also sometimes the bags dont have the full amount of solution and sometimes my alarm will go off saying check lines not done filling or something to that effect. If bags are empty i will hit bypass to shut machine up.
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The pain at 10:30pm woke me up like a shot and I would had given every cd I had away just to make it stop. Intense doesn't even describe it. I'm glad it was just once, though.
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Oh dear, not sure I should have read this. I start on the cycler tonight. I brought it home last night, but husband fell asleep and I could not carry it upstairs myself, so just did manual and went to bed. I had a LOT of pain after the catheter surgery, and it felt like they left a screwdriver in my abdomen that stabbed into my bladder. Once there was fluid finally in my peritoneal, then the pain went away, but I am a little worried that I might have those issues in the night too.... we shall see. Wish me luck. I do look forward to having my days free. This is getting so old. gah.
Blessings to you, I like your attitude.
Heather
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Don't fret about it. Last night's went much better. I had a little pain during the first drain after fill, but that was it. I think the pain will subside in time, which is fine by me.
Blood pressure is a little lower today as well. I'm running two 2.5s and one 1.5 tonight.
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Most of the time you shouldn't have pain. But drain pain is a reality they don't mention in training. Glad to hear things are getting better for you. BTW: there are studies that swearing relieves pain. Go for it when the drain pain hits.
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Only pulled about 500 in UF last night. First night was 1125, two nights ago, 725, now 500. Wtf?
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HouseOfDialysis, don't worry about it., It does fluctuate all the time. Last night my husbands was 59 and we thought WTF. Some times it is 300,500, who knows why.
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I can pull 2000 manually everyday, so I'm just a little confused at the moment.
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HD, I have only been doing PD for about three weeks so I am no authority on this. I usually wake up before my final drain and am up out of bed so my total UF is normally around 1400 but if I sleep in it is below 1000. I'm guessing it has something to do with gravity and how you are laying while it is draining. On the cycler when you get to total UF hit enter and then you can go through each cycle to see how much was drained.
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Well, other than two alarms and a LOT of noise from that machine, therefore not much sleep, my body was comfortable. So I have made it through the first night, and feel like I can do it. Gosh, the NOISE that thing makes though.
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You'll get used to it Heather. I didn't sleep well the first week. I still get the alarms but most of the time it is because I wrapped myself up in the patient line while sleeping and it can't drain.
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Only pulled about 500 in UF last night. First night was 1125, two nights ago, 725, now 500. Wtf?
I hope that tonight makes up for it.
Well, other than two alarms and a LOT of noise from that machine, therefore not much sleep, my body was comfortable. So I have made it through the first night, and feel like I can do it. Gosh, the NOISE that thing makes though.
Yay! When my Blokey was on PD I wore earplugs ... I could still hear the alarms (of which there were many; he had a lot of problems *sigh*), but not the continue glurgling. You will get used to the noise.
;D
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Last night was the third night and I don't even notice the machine anymore, sound wise, PLUS there was NO pain whatsoever... Besides me stubbing my toe, which was unrelated to the machine. D'oh!
But the UF rate still has me perplexed.
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I can never figure out why my UF is higher or lower or my weight is higher or lower. I move a lot in my sleep which may affect it. But apparently the biggest issue is your level of constipation. Even if you don't think you are, you could be enough to affect dialysis. As long as your UF is positive and your weight is reasonably close to what it should be you're doing great. Not every night will be perfect but that's the beauty of doing PD every night. It all evens out in the end.
If you already can sleep through it I think you're doing good.
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This morning's UF -930. YUP. NEGATIVE 930. WTF?
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Houseof Dialysis,
If yo uare getting a UF total of -930, you might have fibrin.
I want to address your other issues of different/fluctrating(sp?) UF totals. The numbers do vary on the machine. It all depends on what you are eating a drinking. The UF total only is how much fluid is removed. THe dwells will remove the toxins. So, if you have a lot of fluid the numbers are higher. If you have not been drinking at all, then the numbers are lower.
The negative numbers are usually catch your attention. First constipation can be a problem, ask for a stool softner, secondly there might be fibrin that you cant see. So if this is the case you might have to get a bottle of heaprina nd a needle and it in the port on the heater (the bag directly on top of the machine). Check your bp and weight, if both are up, you can use a 2.5 (the green tab bags) with the heaprin. Its hard on the machine to actually see fibrin, But yeah make sure you do something about that high negative UF total or you will get fluid overload
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I have a last fill at the end of cycle, which I drain out near 9am. There's been no fibrin in there since I started, but I'll load up a 6l bag with heparin and see what comes of it.
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The drain bag from this morning had some flakes in it, but also there was about 3L fluid in there. Much more than the 2L that I filled with. So, there's my -930, I think.
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Think "CONSTIPATiON" are you?
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Nope. Everything is quite regular. Twice a day, in fact. No pain or any such things.
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Sounds like you found the lost 930, which is good. The line was probably clogged for a moment, either inside or outside. I doubt if your body had just absorbs all that and the 2L re-absorbed it back out. Mostly likely a clog in the line.
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I think a negative UF that big warrants a call to your nurse to discuss things. She needs to know about it.
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I finally weighed the drain bag from 8am. My eyeball estimate only off by 200. It was 3700. I last fill at 2000. No wonder I felt sluggish.
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There you go, SORTED
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Lillupie,
I injected heparin into the heater bag and this morning UF was 1382.
Booy-to-the-yah.
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Doing Kt/V on Thursday and it seems I'm getting into the swing of things with CCPD. So, still moving forward and got a tip on a potential living donor, but the Army won't allow him to get tested until after he's discharged next summer.
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I used to pull off 2000 or more when I was doing manuals. I pull off 800-1500 per night with 2.5 solutions. My neph told me that anything over 400 is great. Less then 400 and things aren't working well.
Trust me on this one.......You can poo 2 times a day and still be constipated enough to cause drain issues. I thought there was no way I needed to take stool softeners as long as I was that regular. I started having lots of drain alarms and then started taking the softeners and reduced them by a whole lot.
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*kana*, I really agree with you on this issue of constipation. My husband has to take 2 exlacs twice a day, plus 2 spoons of lactose.The nurse always says that if you get low drains and lots of alarms you are constipated.
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Lillupie,
I injected heparin into the heater bag and this morning UF was 1382.
Booy-to-the-yah.
Was I right? try using heaprin?
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It seemed to work out that way, yes!
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I think I'm going to start making videos for future/potential PD patients. What were things you wish you know before hand or what to expect, before you started?
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In the UK we do not have access to heparin. We have to go to the unit and a nurse will inject a fluid bag with it.It may mean 2 or 3 visits to the unit if we have fibre We can not be trusted.
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What? I've got six vials in my cabinet. Should I send you one?
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That is insane! Thank God here it is not like that. What if you are on the cycler and you need to put it in your bags on the machine? Do they expect you to carry in a 5 or 6 liter bag?? Im prone to hernias, I cant carry those bags
Lisa
In the UK we do not have access to heparin. We have to go to the unit and a nurse will inject a fluid bag with it.It may mean 2 or 3 visits to the unit if we have fibre We can not be trusted.
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I swear I am the dumbest person I know. I had connected myself to the cycler and hit GO for the initial drain and I realized something quite important... When I primed the patient line, I left the clamp CLOSED. It would have been bad from the word, Pain! But I had the 12 foot extension tube on as well... ALL THAT AIR... That would have been bad. So, I tried to reset the machine, which is impossible once the therapy program has started. So after an hour of futzing with it, I FINALLY called Baxter, had it off and threw out the supplies I had rigged up.
I did four manuals from last night to 2pm today, so I'll jump back on at 8pm tonight... This time, WISER. As I heard someone say before... NO SHORTCUTS! It causes lapses in judgement like I had last night.
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Thats right! YOU LEARN From your mistakes! Anytime something dont seem right, your best bet is to start all over.
Lisa
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Been there and done that. Felt like a jack-ass at first, then came the pain. Then I never did it again since.
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Today, I rolled over to record my daily numbers and my UF was 2178. No wonder I felt dehydrated.
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HouseOfDialysis, that is a lot of UF. are you drinking too much? We had to call Baxter's a few weeks back and ended up having to change the whole lot in the middle of the night.We had an air lock in the set. What a pain in the ar*e it was.
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I think dehydration occurs differently for everyone. I fill with 2800ml volume. On the cycler for 10 hours a night, It works out to a total of 6 exchanges a night. My uf is usually around 2800-3500mls depending on my % used. I also use a solution called physioneal, which is basically the same as traditional dianeal except that it has bicarb in it to neutralize the acidity of the sugar, which is then easier and less irritating for your peritoneum.
Houseofdialysis,,, about your idea for some pd videos, I think it is a fab idea. I have a lot of ideas as I have been doing this for over 5 years and have experience hundreds of different situations. Let me know if you need any ideas or suggestions or tricks of the trade so to speak. Would love to help out.
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Well, what are the Top 3 things you would have wanted to know about before starting PD that you found out after the fact?
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I think there are some videos on Youtube if im not mistaking.
HouseofDialysis, good quesiton. I actually asked a similar question in my book.
Lisa
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Lillupie, is your book published yet, if so what is the name, and did you write a how to sort of book or your life kinda book. Just wondering,
Also Houseofdialysis I am joting down a little list during my most boring last two hours in the world of dialysis time, (hehe) about things I think others should know.
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I think there are some videos on Youtube if im not mistaking.
HouseofDialysis, good quesiton. I actually asked a similar question in my book.
Lisa
There are quite a few actually. A few I would like to redo, updating them for new equipment and the like. I'm just a student of media.
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At least once a week, I get my tubing all twisted in knots and have to unravel it making huge hoops of it and have to step through a few times. I'm a moron, functional, but still a moron. D'oh!
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If your a moron so is my husband. he tosses about all night and I have to unravel him in the morning. it is quit funny.
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Two things you can do (or both):
1 - Get a $15 wrist brace that has velcro fasteners for the hand/side you normally sleep on. (For me it's my right hand.) Run the tubing parallel with the wrist brace and then fasten the velcro over it. In other words, the patient line runs up from your exit site, up to your shoulder, down your arm to the bottom (wrist) part of the brace, through the velcro, and out toward the fingers. Yes, I know, a picture would be better but I hope this description is sufficient. I got this idea because I've worn a wrist brace for years while sleeping due to carpal tunnel problems and thought...aha! It works!
2 - Go to any stationery store and pick up those snap clips used to hold ID badges. (Example: Snap Clip (http://s7d5.scene7.com/is/image/Staples/s0341446_sc7?$sku$).) Wrap the plastic part around the patient line and snap it. Then clip it to the top of your shirt or PJ top. That makes sure the line comes out the "top" and if combined with the wrist brace idea the line won't get tangled in the sheets or blankets.
Now if you're clumsy and get out of bed and get tangled on the lines on the floor or the machine, that's something I can't help you with! :P
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This morning's UF -930. YUP. NEGATIVE 930. WTF?
Most likely the position you were at the time it drained.
Kinda hard to keep track when you're sound asleep. :stressed;
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Lillupie, is your book published yet, if so what is the name, and did you write a how to sort of book or your life kinda book. Just wondering,
Also Houseofdialysis I am joting down a little list during my most boring last two hours in the world of dialysis time, (hehe) about things I think others should know.
Wow thanks for asking me about my book. Someone else asked me about it too. No I have been on break from it. I have 175 pages done and it needs editing and I cant afford to publish it. I def want to get it done soon.
Thanks,
Lisa