I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: tbarrett2533 on March 01, 2011, 02:48:03 PM
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I am new to dialysis (I started in center Hemo in september 2010) I HATE IT!!!! I keep hearing so much about PD, however when I read all the threads it appears that it is for "seasoned" users..... :) leaving me wondering what all the terms mean? What is a cycler, dwell, exchange, fill, dry????
Whats manual, nocternal???
I just don't know what any of it means???
I would also like to know what the side effects are???
what about the risks?
I would appreciate as much feedback as possible & please be specific and speak as if I am a virgin to PD (b/c I am) :laugh:
:thx;
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Hi TBarrett,
I believe that you would be a rare one, if you were seasoned when starting. As for myself, I learned, starting my first day of training, which was also my first day of PD. With PD, we have a full tummy (the peritoneum) of dialysis fluid. The "fill" is where it starts. Our peritoneum is "filled" with the fluid. The amount varies, depending on your size. The nurse will usually start you a bit lower than what you will fill with later. So now you have "filled". The solution starts absorbing your toxins and extra fluid. That is the "dwell". You are dwelling. The fluid can only absorb so much - like a sponge, when it gets full, it can't absorb any more. (Sometimes you will reabsorb, but that's a topic that can be talked about later. :-) So now it's time to "drain". You have to empty your fluid out, along with the extra fluid and toxins. Ok, now you have filled, dwelled, and drained. Now you fill again and start getting rid of the extra fluid and toxins again. When you have drained, and then filled again, that is the "exchange". By the way, you will have a catheter in your belly, usually a couple inches to the side of your belly button. That is what you will connect to, to do your fills and drains, otherwise known as your "exchanges". The cycler is the machine that many of us use. There are different schedules, again depending on you & your nurse. Somewhere on this site, there is a thread where people say what their schedules are. I'm not good at finding those, and posting. I bet someone will here! Ok, the cycler is the machine that, at night, you connect your catheter to it. It has your bags of fluid, all connected to some tubing. Your nurse will train you on this. It was scary for me at first, wondering if I could do it. No problem, you will be able to do it. The machine pretty much tells you what to do. (It doesn't talk, but it does have a read-out display. So at night, you hook your catheter up to this machine, and the machine does all of the exchanges for you! You sleep, read, whatever. I'm kinda thinking that the average time you must be hooked up, is about 9 hours. Some people can be dry during the day, and not fill again until night. Some of us though, i.e. ME, carries fluid in me all day. I also have to do an exchange in the afternoon, which is when I set my machine up. It doesn't take real long, and the exchange itself doesn't usually take longer than half an hour. I set the machine up at my convenience during the day, so it's ready for me when I'm ready. IT waits for me...I don't wait for it. lol Ok, that's the basics of the cycler. "Manual" is doing an exchange, without the machine. The bags of fluid are a little different, but you still hook it up to your catheter. The manuals come with 2 bags...one is empty, so you can "drain" the old stuff, and the other bag is full of the new & fresh dialysis fluid, that you use to fill your peritoneum again. People who use manuals usually have to do an average of 4 exchanges, with these manuals, per day. Again, that will depend on your own particular situation. The nurse will help decide all that. I hope this helps!!
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Oops, side effects and risks... once you are trained, it's your responsibility. You do your own ordering of your supplies, and be there (or have someone there) when it is delivered. As I said, you'll have a catheter in your belly. Where it comes out, is called your "exit site". You must always keep this clean and dry. If you don't take good care of it, you can get peritonitis, which from what I hear, is awful. I've been doing PD for a bit over 2 years, and (knock on wood), I have not had a problem there. I clean it every day. Some doctors/nurses say no swimming at all; some say that you can swim in the ocean or a private and clean pool, as long as you clean and dry it when done. That will depend on who you talk to. NO BATHS. Showers are fine, again as long as you then dry & clean it. It's up to you each day to weigh yourself, take your temperature, and take your blood pressure when you get up in the morning, and again before you go to bed at night. That's as much as I can think of, but this is a good site for info...more will come!
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Thank you very much for trying to inform me :) I am still just a little bit confused??? Why would anyone want to be doing dialysis for 9 hours a night?? that is crazzzyy... I don't sleep that long in the first place so I don't think that would be a good option for me.... (although anything is looking better than in center Hemo), althouh the thought of home Hemo entices me, however I do not have a partner so that is not an option for me!! :'(
I think I would like to know more about manual exchanges???
If I understand this correctly..... (and I could be wrong) but if I choose to do manual exchanges during the day I would fill, dwell, and empty myself about 4 times a day usually taking up to a half hour... is this correct???
if this is correct, this may be the best option for me.......
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TBarrett.... I am surprised that you have not been told about all of these different options.... I thought for sure that most clinic and Doctors would inform and educate you so that YOU could make a decision and how you want to dialysis.... PD I think would be great if you can do it... many can and do... To me the Plus side of PD would be that you could go anywhere and do dialysis... camping.... hiking....long trips.... boat adventures...or what ever..you can go... When we are doing Hemo... we cant just go and stay....for very long.... I think that is what I miss more than anything.... I did not choose to do PD.... Too many surgeries and hernia's.... I choose to do Home Hemo.... I can travel with my machine but I have to have 110V..or a generator.....LOL
Doing dialysis with a PD cycler and doing the exchanges at night while you sleep appeals to many people who want their days free from Dialyisis. Longer time on Dialysis the better you feel...why not do it while you sleep... kills two birds with one stone..... PD may be a good option for you .... many do it....
Home hemo would be another good choice for you ....this was you can control your time of when you do the dialysis.... where as in center you have to go when they say.....at their center on their time.... and for some people they like to get out and get it done in center and be done with it.....
Keep reading here on this site..... You can learn so much.... this will help you with the journey.. Dialysis is what you make of it..... just a responsiblity and then do get living........
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with respect to my unit, nope no one really told me anything, just that i needed dialysis, then everyone pushed transplant onto me (which is a whole other story).... no one told me about the diet, NOTHING!!! I had to (and still am) doing my own research about EVERYTHING!! in fact i just changed doctors (meet with the new one on 3-18-11) b/c my last one when I would tell him i was having side effects, or wasn't comfortable, was wore out, tired etc, he did NOTHING but look at me funny!!
so I guess here I am... I can say this, i hate in center hemo!!!
does anyone know where I can find more info on the different types of PD?? (other than here)
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Before I started my PD training I was given a sheet with 20 or so steps for manual exchange. One of the steps was " Open the transfer set ". I had no idea what a transfer set was and was amazed to discover it is another name for the PD catheter in my tummy. So much to learn.
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Thanks for clarifying that, Henry. You are exactly right. I would hate to confuse anyone.
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Chook and Henry,
Since you both know a lot about PD, was I correct in my understanding regarding manual (during the day)??? (I would fill, dwell, drain and exchange (fill) again) taking up to a half hour each time 4 times a day???
I just don't think I could handle 9 hours a night of dialysis....since being diagnosed with ESRD I hardly sleep at all anymore so I don't think i could handle doing nocturnal!!!
Thank you both for posting :)
:thx;
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My neph is really good and I like him a lot...but...
He just set me up with the Transplant Center who then just ASSUMED that I was going to get a fistula and do some sort of HD. "Do you have any questions?" Hell, Doc, I don't even know what questions to ask...can't you suggest a few to start?
Well, after perusing IHD and other sites for days (and neglecting my work), I was prepared this time to talk to my neph about my dialysis options. It seemed to me that he opened up and was happy that I had taken the time to do my homework. He spent almost an HOUR (ages in doctor time) going over all my choices and the pros and cons. He actually said that most of his patients just want to be told what to do and don't want any responsibility to do their own dialysis.
The result of our conversation is that now it looks like we are choosing the nocturnal PD route which the doc called CCPD. So thanks for the info above which just confirms my decision to do CCPD.
Now...and perhaps this should be in a different thread...are there any opinions or choices about the nocturnal cycling machines themselves? Where could I find out info or reviews? Just like anything mechanical, I'm sure there must be pros and cons to the machines themselves.
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The two machines for doing PD that i am aware of are freesnius (sp) and Baxter.
You could go to either site to read up on the machines. As for picking one? Well that would depend on the center you choose to be your dialysis center.
I use baxter and i am very happy with the machine.
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I too, use the Baxter, and also love it.
I do manuals on occasion too. I always have to do an afternoon exchange. Although I usually do that one with my machine also, sometimes I'm not home, so I have my manual bag, heat it up and go. I will say, the one thing that my nurse said, regarding doing it manually, is to NEVER do it in a restroom - your own, friends, or pubic - never. I have stuck to that, and never done it there. (Mostly I do it in my car.)
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Mostly I do it in my car.
Yikes! You haven't seen my car! :o
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lol I purposely keep mine very clean...for the times I have to do dialysis there! I keep containers of Clorox wipes, and always wipe things down before I do it. I also keep a heating pad in there, to warm up my bags.
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I do Baxter's Home Choice nocturnal PD machine. I have for 3 and a half years and am VERY happy with the machine and Baxter service. I will be switching to Fresenius' Liberty nocturnal PD machine in just a few weeks. I must switch because my clinic is a fresenius clinic and has discontinued their contract with Baxter. Before you get your heart set on machine, I recommend you check with you clinic and see which machine is most commonly used there and if there are any for seeable contract issues. This may help you choose and prevent you from having to switch once you are trained and used to one machine. Just my advice.
I think nocturnal PD is the best! Good luck to you!!!!!
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"If I understand this correctly..... (and I could be wrong) but if I choose to do manual exchanges during the day I would fill, dwell, and empty myself about 4 times a day usually taking up to a half hour... is this correct??? "
I didn't have time to read through all of the responses, but basically yes, this is what my husband does. He is terrified of hemo and has done PD from day one. As his disease has progressed so has the PD - he did small bags, 4x a day at first. Now he does a larger bag, with greater concentration, 5x a day. The 5x a day is getting to be overwhelming for us (with a toddler and demanding jobs) so he's going to try to switch back to the overnight machine soon. But mostly he's "enjoyed" the flexibility of PD. He has had peritonitis and a rather NASTY infection at the insertion site, which turned out to be due to diaper changing.
LUCKY me, I now get to change all diapers! :oops;
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:thx;
thank you all so so much for posting, b/c of each of your personal stories I understand a lot more & when I meet with my new neph on the 18Th,I will DEMAND the time and attention that I deserve so that I can choose the best treatment option.......Rest assured that I will NOT be on hemo for that much longer bc it hinders my life waaayy to much!
(manual is lookin very very good right about now, just one question??? heating the bags??? whats this all about???)
thanks again
~ Tracy
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Tracy, the fluid has to be warmed before being run into your peritoneum. With manual bags this is done with a heater bag, that is left on all the time so that warm bags are always ready. If the fluid is too cold it can cause some discomfit. My manual heater bag holds two bags at one time.
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G'day, TB
Chook & I are both Aussies, as it happens, Chook is the pretty one, I'm so scary looking that I don't have my pic up for fear of scaring women and children. :rofl;
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Henry, I am the boring Aussie and you are the Indiana Jones Aussie :rofl;
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I was happy to be set up with my nephrologist here in Charleston with Dr. Michael Ullian and the best damn vascular access/transplant surgeon in the game, Dr. Charles Bratton! Bratton is also a huge punk rock fan, whhich suits me just fine. We talk about Bad Religion and Black Flag during visits. :)
Dr. Ullian was upfront wiith all my options from home-hemo to PD, and since I worked a physically demanding job with lifting 50+lbs, he recommended hemo, but I chose PD as I saw my mother go through hemo in a not so nice fashion 24 years earlier.
But get into it deep with your new Nephrologist. It's YOUR health and body after all. I'm preparing to move to CCPD(the cycler) in a week or two. I like doing manual exchanges because I can control it, plus my job has made accommodations for me so I don't have to wait 6+ hours until lunch to do one.
Good luck!
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I too, use the Baxter, and also love it.
I do manuals on occasion too. I always have to do an afternoon exchange. Although I usually do that one with my machine also, sometimes I'm not home, so I have my manual bag, heat it up and go. I will say, the one thing that my nurse said, regarding doing it manually, is to NEVER do it in a restroom - your own, friends, or pubic - never. I have stuck to that, and never done it there. (Mostly I do it in my car.)
"pubic" ??? huh ?
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OOPS! lol Make that pubLic!
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I was on hemo for a total of 4 months during my dialysis career, and let me tell you, will NEVER go on hemo again if i can help it. The diet is soo much less strict. No salt or fluid restrictions, and I can have potassium, atleast not for me. I am on the cycler at night to have my days free. Imagine not having to go to a center every other day. I think that gets draining and old after awhile. THe time I wake up and the time I go to bed, I am FREE! FREE! FREE! and am only at the doctors twice a month. Once for labs, and another time to go over the labs.
and guess what? I went to Sicily on PD and now this summer I am going to Germany with my boyfriend on PD! Couldnt go to either place on hemo!
Lisa
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I have to add that I found PD so easy & successful that prior to my transplant a few weeks ago, my most anxious moment was when I was told the surgeon would remove my PD catheter at the time of transplant. It had been such an easy way for me to do dialysis I didn't really want it gone. All the best to you & I wish for you the same good experience with PD that I had.
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Four times a day manuals are a pain, so I prefer the cycler, 7 1/2 hours at night. Hopefully, while I sleep. The problem i'm having is drain pain which wakes me up 3 times at night. It seems the placement of the catheter was so GOOD, that I get uninhibited suction on drain and feel it during the last 200 cc's. or so. And with the cycler, you can't control how hard it sucks... and it SUCKS.
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The pain may subside in time. It took two months with manuals and about a week after the cycler. But every body is different.