I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: JLM on December 08, 2011, 08:01:43 PM
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I started CAPD the last of April. Then the last of May went to WI until the middle of Sept. My home clinic (F) said that there wasn't enough time for me to go on the CCPD before I left and the vacation clinic (B) didn't think to train me for their cycler. Now I am finally going to be trained on my home clinic. I got the supplies today and training is to start on the 19th. They also brought the manual supplies - 50 pounds short of 2600 pounds delivered today. I don't want to make anybody jealous but I still have some room left in our living room for more boxes :bow;
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That first delivery is impressive! I can send you some of mine if you want to fill space :rofl; Good luck with your training!
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U got lots of space. Good luck.
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I'm lucky, I have a spare bedroom that I put my supplies in. Yea it is impressive the amount of supplies you need per month.
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I start the training on the 20th. I didn't ask how many days I will have to go. I hate driving east early in the morning and it starts at 9 am and I allow myself an hour and a half to get there.
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The drive east wasn't bad at all, the sun was more south and didn't rise in the middle of the highway. Training went well and I am getting the newest machine. I just have to follow the directions on the screen, I will go again tomorrow and tomorrow night will be the first night on CCPD. Because I didn't want to do an exchange during the day I will be attached for 11 hours. Blech!!!!
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I'm in the same boat you're in JLM; I do an exchange in the middle of the day. For me it's 2 hours before I connect for the evening. I choose to do that one manually. It only takes me about 15-20 minutes to do a 2L fill and then I'm free to sit and have dinner with my darling wife and chat before I actually hook up for the night. Just something to consider...
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don't know which machine you're using, but the Baxter Homechoice (at least as of a few months ago - before I switched to hemo) would allow you to disconnect as many times as you wanted to during dwells. I tried not to make a habit of it, because it is a risk every time you disconnect/reconnect, and I would always make sure that I only reconnected just as a drain was due to start, because I believed that the drain would flush out the connection if any little "bugs" were in there.
But i found that extremely convenient - hook up for the exchange, disconnect, and have a couple hours to finish evening chores, hook back up, and (because my total therapy got to be so long) unhook when I arose in the morning, prepare for the day, hook back up to do last drain and fill!
But if you are using Fresenius, you can only hook-up/unhook the number of times that you have the fancy little trigger thing for. I guess you can get tubing with multiple connectors on it, but I found it terribly inconvenient. Also, there were always air bubbles in the connector (and tubing too before the first fill)
anyway, hope everything gets routine for you soon so you can settle into the most normal life possible!
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fearless is correct, you can disconnect while you are in the dwell cycle on the Baxter machine. Just be sure to ask for a box of flex caps with your order, I got one by default with my first delivery, but I'm hearing they don't automatically send those anymore. My PD nurse said it was ok to disconnect if I HAD to, but they prefer I wouldn't. I've never done it, but I do have a couple of the flex caps close at hand just in case.
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Joe, my clinic wouldn't allow me to get the flex caps. I found out you can snap a mini cap right on to the end of the patient line though. I too disconnect from the cycler frequently to do other things.
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My first night on the Liberty cycler came with a few alarms because I didn't uncoil the 20 foot patent line and it kinked up. Easy to fix; the second night there were 2 alarm because I must have laid on the line.That morning (Friday) I had a melt-down. My husband has ALZ and I am his only caregiver and he was on my case and instead of talking to me he stared with gibberish talking. He left the front room and I started to bawl, he comes back and I tell him that I can't take this and he ask what can't I take. I yelled "YOU and this, pointing at the machine. After he hugged me, he started on me again. Then he moved to the hall and I slammed the door to the hall I don't know if any of you have to knock the portion of the "cone" you break on the bags out of that tube you connect to, but we are instructed to do so. It took an hour to get that &^%^%^ out, to drop in the bag, then one of the cars from a white line fell off By the time the nurse called me back I had things so screwed up I was going to start over. By the time I got things on the right track, I realized that I wouldn't get done in time for church. I am doing manuals tonight, I'll set the alarm when it;s time to do another one tonight My Motto - Crap Happend!
BTW MERRY CHRISTMAS
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:grouphug; :grouphug; :grouphug;
lmunchkin
:kickstart;
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:grouphug; :grouphug; :grouphug;
lmunchkin
:kickstart;
Thank you
I did the manuals all night, boy was I wipe out Christmas morning! We went to my S-i-l about 4 pm and had a wonderful time. The night cycler went fine, plus the PACKERS beat "da Bears". I could only keep my eye open for the first half and my sister in the UP of MI called me at the end of the game. After we chatted I zonked out again
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So glad to hear it all went well. It will get better and better as you go on and get more familiar with the routine.
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As soon as I develop a comfortable routine things will go smoother. Today I got the bags ready in the afternoon and used a table to help me knock out the cone ends.
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GAWD, it's hard for me to get the cone nipple outa the plastic tube of the solution bags. I gotta find an easier way! 45 minutes for 3 bags are stressing me out.
OK I got that out.....mayhaps tomorrow will only be 40 minutes.
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It can & will get better, JLM! Youll see.
lmunchkin
:kickstart;
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I am having as many times with a negative UF as with a positive UF, but I not feeling any fluid in my legs. Go figger, eh?
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GAWD, it's hard for me to get the cone nipple outa the plastic tube of the solution bags. I gotta find an easier way! 45 minutes for 3 bags are stressing me out.
OK I got that out.....mayhaps tomorrow will only be 40 minutes.
I set up the Liberty machine for my wife nightly. To get the cone out I just grab it at the connector and shake real hard a couple of times. Lately the a few times the cone has been very difficult to get out. I move the bag off the machine to a folding table and shake it REAL HARD until it comes out. The bag can handle it no need to be gentle when it is not on the machine.
Good Luck.
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I think I have found the way to get the nipple out. After breaks it I pinch at the breaks and shake the connector until the nipple moves down. I then re-pinch the nipple at the top of it and shake the connector again; when it is just about out I beat it with the cone breaker until it gives up and drops out. Then I pinch the bag at the connector and swished it away from the connector. At least it worked today.....!
:bandance; :bandance; :bandance;
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haha I am just clueless to what this nipple cone that you guys keep talking about is...
I'm on PD as well but on the baxter machine. It's super easy to use
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If I have a bag with a difficult cone to shake out, I pick up the bag and hold it against my body with the cone end pointing up and squeeze the bag then shake the connector and the cone comes out easily every time.
What is the cone breaker you are talking about? I just bend it and break it with my fingers.
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It's a "tool" the clinic gives you to break the cone. There's a 'U' shape end that slides on the connector at the cone and with a twist of the wrist the cone is broken. Most of the time I use mine to hold the medicine port when I inject Heparin, so if I don't get the needle in straight I don't hit my finger. Done that a time or two.....ouch.....!
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I'm with jadey, but I also use the Baxter cycler. I'm guessing the bags are configured differently. All I do is break the festule with my fingers and then work it about an inch up the tubing.
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More room in my front room now. The delivery guy brought 42 boxes of 1.5s and took 20 boxes of 2.5s and I still have enough 2.5s for 2 months.
I was half way through my first dwell when my husband had to go to the ER. I called my nurse to find out what to do and she said to just disconnect and to start over when I got back. No can do, I have an appointment at 10 in a town 29 miles away and another in a city 45 mile further at 1 pm. So I said that I'd do manuals the next day. Man, it was after midnight before we got back home. Nothing life heartening, the poop chute got plugged and it had to come out. A painful procedure, I felt so sorry for him.
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JLM,
I REALLY feel for you. I did the majority of my years of PD using Baxter, and although it was no piece of cake, when the clinic was finally successful in pressuring me to switch to Liberty (I resisted, simply not wanting to give up the familiar Pro-choice, which I could do blind-folded and half asleep) I thought I was going to lose my mind! The cones, the lengthy set-up, the inflexibility of the therapy, not being able to do partial drains, etc. etc. etc. and one of the machines I tried was so noisy I thought it was going to jump off the table! I was near to transitioning to hemo, and that machine pushed me over the edge.
Having to take care of someone on top of that would have been absolutely impossible for me. i honestly think you must have super powers to be accomplishing what you are. Make sure your clinic is aware of every single struggle you are having with your PD therapy. Fresenius needs to find solutions for these problems.
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I think that I am dealing with the machine OK, but because I don't want to do an exchange during the day I am on it for 12 - 13 hours at night. It's bad because it's so long, yet it's good because I have to be in another room separated from my Husband who has ALZ. He gets quite nasty at times and being hooked up is like a mini vacation! I have my own TV and can watch shows _I_ enjoy.
I have the Liberty in our living room along with my supplies and a 36 inch TV. My patient line is 20 feet long and because the way our house is laid out I can get to the bathroom, the bedroom and the kitchen.
I have done the Baxter manuals because we spent 3+ month in WI where I had to use Baxter because the wasn't A Fresenius clinic there. The nurse there told me that is we vacation there next summer that I would have to get their cycler. The only difference I see is the hook up procedure and if my clinic in TX will ship the supplies what difference what Neph and clinic I see just for the summer. I know, I know, it's the $$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$....!
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If you see a different doctor, and he's affiliated with a different clinic, then, yes, I bet they require you to change suppliers. But holy crap what a billing/medicare nightmare that must be!
Good luck on your path!
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Been there, done that, but I didn't have to buy their T-shirt :sarcasm;