I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: Wildrose on January 26, 2012, 11:07:54 AM
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Having read that weight gain can be a side affect of PD, what I'm wondering is is it a permanent weight gain or a water weight gain? I'd already ruled out doing PD due to not having room at home and being very overweight already I just didn't want to chance gaining more weight... but for financial reasons, starting out with PD might be the best option (as medicare will kick in sooner with PD than with hemo).
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my husband is the one on PD. If he puts weight on our nurse always says it is fluid and we have to get it off. He has not put any flesh weight on in 2 years, more like lost it. Dialysis tends to take off flesh weight due to muscle waste age. Thats what we have found any way.
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starting out with PD might be the best option (as medicare will kick in sooner with PD than with hemo).
Medicare also kicks in the first month if you train for home hemo. Don't know if that is an option for you.
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i havent been on pd very long but i can say i have lost a few pounds while on pd. i tend to eat less due to feeling full and i still am as active as i have been prior to pd, working out and doing my cardio everyday.
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Medicare also kicks in the first month if you train for home hemo. Don't know if that is an option for you.
Its not an option because I don't have health insurance. My Dr told me they won't create a fistula with no insurance as it is not a emergency procedure unlike the IJ catheter. But I'm wondering if they will do the PD catheter because they would get paid that same month (if i'm remembering correctly it only takes that 3 weeks for that to mature). Then I believe I could switch to something else later once I have medicare? Although I don't know how long I would have to wait (and if it was working well I'd just stick with it).
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My doctor and dietician say it's mostly water weight. The PD solution has dextrose in it though, so try to stay away from extra fats and sugars to make up for the extra you retain when dialyzing. Depending upon what your doctor suggests in when you dialyze, you may not feel as hungry, or you may feel more hungry.... I dialyze at night for 9 hours while sleeping. I don't get the full feeling all day, so most of the time I am able to eat normally... making sure I stay away from salty and sugary foods, and eating more proteins.
As far as Medicare goes, my social worker and doctor at the clinic applied for me immediately after learning that I had to have the PD catheter placed. I also applied for SSI/Disability, which quickened the process as well for Medicare. Have you had a catherter placed at all yet? My clinic waited a whole month before starting PD...they usually train you on manuals first, and to make sure the catheter is working. Then they have to train you on the machine. So for about a month and a half you won't even start D, this will give you time to get Medicare straightened out.
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Initially I lost a good amount of weight on PD. Lately I have put 5 pounds back one and it has held steady since then.
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Whynot get the catheter, train for home HD using the catheter and then havethe fistula done? I found that most of the weight that I put on doing PD was water weight since I lost about 20lbs once I stopped and it went very quickly which is why I know that it wasn't true weight.
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I am fairly thin for my height... since starting PD (8 months...I do CAPD) I have gained about 15 pounds so it is ALOT of weight for me considering I was thin to start with. prior to my starting PD my Neph told me that I would prolly gain a lil weight after all the solution is sugar soltion and that is extra cals you are taking in every day so if you are not careful then you will gain weight like I have!!!
Dang PD!!! but I will take a lil chub over in-center Hemodialysis any friggin day of the week (just saying) I HATE hemo!!!! friggin HATE it!!
and I am also no fan of the cycler either....... the thought of "doing dialysis" or "being hooked up to a cycler" for 8-10 hours EVERY single day makes me want to puke!! :puke; I will take my 17-22 minute exchanges 4 times a day with CAPD and do them when and where I WANT TO DO THEM, not when and where either a center (Hemo) or cycler tells me I HAVE TO DO THEM....
just my :twocents; :rofl;
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tbarrett2533: I have to say you and I are on the same page regarding hemo! I absolutely loathed it! I do CAPD as well as I can't bear the thought of being hooked to the cycler at night.
As far as weight gain, I've actually lost weight on PD, but mostly because I feel so much better than I did on hemo. They did warn me about the extra calories with the PD solution, but it depends on the percentages and number of exchanges you do what the extra calories load is.
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I gained about 20 lbs or around 9 kg. It all went away when I switched to HD.
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My weight has been bouncing up and down between 205 and 210 for a few weeks now. Some of it has been related to how much I pull off when I do manuals on weekends. But I have been feeling ok so I am not gonna rock the boat.
:waving;
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tbarrett2533: I have to say you and I are on the same page regarding hemo! I absolutely loathed it! I do CAPD as well as I can't bear the thought of being hooked to the cycler at night.
As far as weight gain, I've actually lost weight on PD, but mostly because I feel so much better than I did on hemo. They did warn me about the extra calories with the PD solution, but it depends on the percentages and number of exchanges you do what the extra calories load is.
I see that you have been on CAPD for a few months, will you do APD??
I am just wondering, sometimes I think I am the ONLY person on the enitre forum that is not on APD and raves about CAPD!!
It would be nice, not to be alone over here in my my love for CAPD :rofl;
also, I can see why one would loose weight switching from PD to HD............. I was so friggin sick all the time with HD that its no wonder I did not rot away (and I was on it for 8 months.......... more sick than I was pre-D :twocents;)
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I do love PD, and thought CAPD was ok. But working full time, having to do a full exchange at work every day just didn't always fit in the schedule. I find that CCPD fits my lifestyle better, and I don't really mind being connected to the machine for the 9 hour cycle time. In fact, I'm connected right now and will go through my first cycle before I go to sleep. CCPD just lets me do my dialysis for the most part while I'm asleep. I know doing CAPD gives you the freedom of doing your exchange just about anywhere you happen to be, and sometimes that's attractive, but even doing CCPD I could go back to manuals just about anytime. That is the ultimate in flexibility!
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I agree with Joe, though I can't say that I actually love PD. I am working full time and it is solely because of PD. Like Joe, I am on a cycler at night, and like him I have started to connect to it earlier at night on work nights. It makes our life possible. If I had to go to hemo we would lose more than half the life we are living. PD offers much greater freedom and control. With the help, assistance, and support I have gotten from this site we are able to maintain the life we want to live with a few concessions.
I don't love PD, but I appreciate that it gives my wife and I a chance to live closer to what we had before this happened.
By the way, while working on this year's tax return I noticed that we have lost $8000 of income in 2011 compared to 2010. Since I am making more per hour now and some of the travel I would have done it is possible I could have lost close to $10000 in income in 2011 to this disability.
I have been behind so far this year as I battle this. There are very few trips I can make for my company that will allow me to be able to do my 8 hours of cycler time per night.
I work as a computer systems engineer on large Solaris based computers.
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I haven't gained any weight in the four months I've doing CAPD. In the recent stinking hot weather my weight did fluctuate up to 4 kilos, but now we're into our Indian summer, I'm generally right on the weight I started at.
I don't like sweet things very much which might be a help
My PD nurse said that they regard fluctuations of over 500gms as probably retained fluid
I intend to stay on CAPD. It suits me perfectly.
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I agree with Joe, though I can't say that I actually love PD. I am working full time and it is solely because of PD. Like Joe, I am on a cycler at night, and like him I have started to connect to it earlier at night on work nights. It makes our life possible. If I had to go to hemo we would lose more than half the life we are living. PD offers much greater freedom and control. With the help, assistance, and support I have gotten from this site we are able to maintain the life we want to live with a few concessions.
I don't love PD, but I appreciate that it gives my wife and I a chance to live closer to what we had before this happened.
By the way, while working on this year's tax return I noticed that we have lost $8000 of income in 2011 compared to 2010. Since I am making more per hour now and some of the travel I would have done it is possible I could have lost close to $10000 in income in 2011 to this disability.
I have been behind so far this year as I battle this. There are very few trips I can make for my company that will allow me to be able to do my 8 hours of cycler time per night.
I work as a computer systems engineer on large Solaris based computers.
Just a thought............. why not do CAPD on those trips instead of the APD???
and 8 hours of dialysis makes me want to :puke; I dont know how you can stay "hooked" up or as I refer to it, TIED UP for that many hours.......... but to each their own!!!
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I do love PD, and thought CAPD was ok. But working full time, having to do a full exchange at work every day just didn't always fit in the schedule. I find that CCPD fits my lifestyle better, and I don't really mind being connected to the machine for the 9 hour cycle time. In fact, I'm connected right now and will go through my first cycle before I go to sleep. CCPD just lets me do my dialysis for the most part while I'm asleep. I know doing CAPD gives you the freedom of doing your exchange just about anywhere you happen to be, and sometimes that's attractive, but even doing CCPD I could go back to manuals just about anytime. That is the ultimate in flexibility!
I dont work full-time (nor do I want to either) but on the days I work I do an exchange in the am while getting ready to go, then work my 8 hour shift come home do another one, dwell a shorter time for each of the other 3. I do not absorb so thats why I think I can get away with doing that.............. 9 hours thats so long to me Joe thats 9 hours that dialysis and kidney failure steal from you every single day, day in and day out :'( What happens if you want to go out at night? you get invited by someone to go do something, say, "I am sorry I can't I got to get home to 'hook up'?"
I dont sleep either, most nights I am up till 2-3am or I am out at a casino, or bar etc.
I don't know I like being in charge of dialysis, dialysis not being in charge of me
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Tracy, I find that being hooked up to the machine isn't all that restrictive. And it has taken all of the time I dialyze to get my Kt/V to 2.3. I'd love to be shorter, but that's what I have to do. I don't really have an issue with being social, I just do my manual in the afternoon, go do whatever we are going to do, and then hook up when I get home. It all works out pretty well. Don't get me wrong, I still hate dialysis, but I can live (no pun intended ;) ) with this one until I can get a transplant and get back to normal.
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One thing that I have found is that I have been doing PD for exactly 3 months now and I have gained alot of weight, it is due to the diabetes and the sugar absorption into my body, I have been retain 10-25% of what goes in for some reason unless I use the 4.25% solution but that gives me horrible and painful cramping. Depending on the type of day I am having I am up approx 22-35lbs, that is a big swing. Good luck
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I have been doing PD since July 2011.
When I first started, I lost about 15lbs my first month of fluid.
The last several months I have been loosing a few pounds a week of body weight. You just have to factor in 400 or 500 calories a day you get from the dialysis fluid into your diet and adjust your eating to keep your overall calories in check.
Exercise helps a lot, also.
BTW, I am a very large man. So you can control your weight on PD.
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I've gained 40 lbs and its becoming a nightmare. I'm out of range for a transplant right now and it's very depressing. The nutritionist at the clinic says I'm doing nothing wrong and I've tracked everything going into my mouth. I don't know what to do.
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I started out on HD and I hated that all the way around! Then I made the choice to go on PD and for me I have been doing CCPD for now 15 years and it has never bothered me. I love it and yeah I'm on the machine for 11 hours at night but I make sure to get on early if I have to be somewhere the next day. Cuz I am tied down for 11 hrs I find do things from bed. Like I'm on facebook or I go on IHD. Also I watch T.V or even read. I joke and tell people I have 11 hours to myself that I call it "me time"! Who else can say that!? :rofl I do, sometimes do CAPD if I go on a trip or can't hook up to the machine as easily or there is not a bathroom near by for the drain line. But I find it hard to stop what I'm doing during the day to do a exchange. A another problem I experience on CAPD is I find I retain more fluid and get really puffy and just feel blah.
I try and not let being on the machine effect my social life. Yeah its hard and I don't get to stay out super late at night all the time but I have done it. I just get hooked up went I get home and I'm on later in the morning but I keep snacks by my bed to eat or if my sister wants to stay up and we watch a movies together till 1am or so..I tell her OK but you got to make me breakfast in the morning!
As for gain weight on PD.. no I have never had that problem. In fact I lost alot of weight. Now I able to keep my weight stable and in goes up and down about 5 lbs here and there but not bad. I can deal with that! ;D
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I gained some weight when I first started PD, about 8-10lbs. Since then I have been able to stablize my weight by not eating as much junk food. I find it hard to lose weight though. Also, when on PD you are carrying around an extra 4lbs or so. Just the full stomach makes you feel heavier than you really are. That's just my 2 cents. I'm sure it's different for everyone.
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I see that you have been on CAPD for a few months, will you do APD??
I am just wondering, sometimes I think I am the ONLY person on the enitre forum that is not on APD and raves about CAPD!!
It would be nice, not to be alone over here in my my love for CAPD :rofl;
also, I can see why one would loose weight switching from PD to HD............. I was so friggin sick all the time with HD that its no wonder I did not rot away (and I was on it for 8 months.......... more sick than I was pre-D :twocents;)
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To answer your question about APD. No, I will never switch to any other form than CAPD. I think I wasn't permanently psychologically damaged by HD and feel my hands get clammy whenever the nurse or neph asks if I ever want to switch to CCPD. I will NOT be chained to anything again even if I'm lying in my own bed instead of that infernal chair! Plus, my weiner dog sleeps with me at night, sometimes under the covers (and sometimes he needs to go out in the middle of the night), so I can't imagine having all those tubes in the way.
I, too, was way sicker on HD than pre-D and it got so bad I was put on Ativan (an anti-anxiety med) just so I would show up. So you're not alone in your love of CAPD. At work, I do one exchange a day in my car-I listen to the radio and do a soduku puzzle and get a little "me-time" in at work. ;D My only complaint is that as a rapid transporter I have to really watch the dwell times and it gets annoying to plan activities around exchanges. Plus, it makes travel stressful. But, overall, I wouldn't trade it for any other form of dialysis.
That's just my :twocents; on CAPD.
Carolyn
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I am on CCPPD and have my machine in the living room. Because of the lay-out of my house, I can go to the kitchen, bedroom, bathroom and into my computer room. (I don't go there often) I can also go out the front door and stand on our concrete step in front of the door. I have to prop the door open to do that so I don't pinch my patient line. I am thinking about boarding one or two small dogs and will put them on a retractable leach should one has to take a midnight pit stop. I have already taken care of one dog and it went well. My dog, a ShihTzu, sleeps with me, but doesn't like to be under the covers.
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I was on PD for almost 4 years and lost 45 pounds, most of it in the first two or three months on PD.
Good luck to you! :flower; :flower; :flower;