I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: aclight on August 30, 2009, 12:57:28 AM
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Hello all! I am about to start pd training in 1 week. I just wanted to ask anyone who is on or has been on pd about their quality of life. I have been not handling hemo well at all, so I am hoping pd works out better. How active is everyone? Is there anything you cannot do anymore? What about your sex life? Is it differnt on pd? Personal question I know, but curious...... It is quite awkward to have this longgggggg tube sticking out of your belly. it's easy enough to be comfortable with myself, but I find it quite strange with my husband.... Even worse to have 2 tubes tight now as I am still on hemo for 2 more weeks!I have found a few different belts online abd have purchased 1. its not the best I think, but works for now. Anyone used the band from patientspride.com? If so does it work better for you? And how much did you pay for it? It looks so much more comfortable than what I am using right now! This has all been a crazy ride and its only been about 4 months now since I found out I had esrd. Still not enough time to wrap my head around it. Looking forward pd, although I am still anxious of course. Glad I found this site so I have people that understand what its like to go through this!
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I have been on PD, Hemo at Home, Hemo in-center, Transplant, and Nocturnal.
Best from first to last: Transplant, Nocturnal (Hemo), PD, In Center Hemo, Home Hemo. This is just my opinion. Home Hemo was just scary for me and I was 2 hours from any technical help and I hated all the supplies.
Now with PD you will have supplies but they were not as bad. So find room!
PD was a more even dialysis. I was never on the night time cycler or APD. That sounded good though, but at the time it was not available for me.
I felt so ugly with a tube out my chest and belly I didn't want sex or to even be seen by my husband, now ex-husband. I'm sure he didn't care, I should have bought him a blow-up doll!
All and all I liked PD because I could do it myself and at home. I could eat more "toxic" foods like maybe a few french fries and drink a little more. I think you will like it.
:cuddle;
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I've been on PD at night with the cycler. It's been good. I've also been on incenter hemo...not so good. Right now I work full time and take 1 class at night. I am also about to eat more freely and dink freely. I had a transplant for 17 years and that is the best way to go. I am hoping to get another one soon.
Your going to like PD.
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I did in centre dialysis for 4 months before changing to PD. For me it was like being given my life back again. It works well for me, so I was amazed at how much better I felt - even with the tube and the 2l of fluid. I've had no problems other than having the catheter repositioned once which was no biggie. I'm still tired a bit, but I have multiple myeloma which is more likely the cause of that than the dialysis. Sex is a problem - there are whole threads dedicated to this topic if you search. I find a corset is a good way to feel sexy and cover the catheter at the same time. And Paul thinks it's a MARVELOUS idea!! The tiredness is the bigger problem for me. I don't use a belt at all - I just tuck the tube into my underwear. I've just been on a fantastic holiday to Samoa, last year I went to LA and Vegas (I'm in New Zealand). We're planning a US road trip - but might have to win lotto first. The dialysis certainly isn't the thing stopping me. Hope that helps a bit. Feel free to pm me.
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I started on in center hemodialysis for 3 months, then did PD manuals for 2 months and the PD cycler for 14 months. I am currently back on in center hemodialysis.
Each therapy had pros and cons for me.
PD
Pros: no need to go to the center 3 days a week, more diet flexibility, felt better during the first 8 months of therapy.
Cons: need to get home every night for therapy, tied to machine for 8 hours a night, need for lots of room for supplies, need to do the therapy myself, very hard --almost impossible to control my blood sugar, many bad infections and problems last 6 months of therapy
In Center Hemodialysis
Pros: Now feel much better than PD last 6 months, easy blood sugar control, better BP control, therapy done by nurses not me, therapy is only 3 days a week
Cons: must travel to center, more restrictive diet
So, I can only say that for right now, Hemo is a better choice. PD was good for a while. You may have a different experience. Remember, part of the challenge for me was doing PD as a diabetic.
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I have pd at night and it is not too bad. I have enough energy for a full time job and 3-5 miles of walk each day. No diet restriction. It does hassle to have to do it each night. I don't like the tube when having sex, but it is manageable. I have my cat. above the belt, so it is above my pant.
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I have been on PD for almost two years and I love, love, LOVE it (well...as much as anyone can love being on any form of dialysis I suppose...). I have been able to work and travel and it's so easy for me to work my dialysis schedule around my "normal" life.
Now...on to the important stuff. ;D For the first year or so, my sex drive was about zero. I was very self-conscious and really hated the catheter sticking out of my side. However, I have started to embrace it since I don't think of it as just a catheter anymore. Thinking of it as the thing that is helping keep me alive has given me a lot of confidence. I have had no issues with guys being turned off by it (and if they were than they sure were hiding it well) and refuse to be tied down by the crummy hand I was dealt.
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Thanks everyone for the feedback. I too hope that pd will work out for me. Dont want to do the back and forth between pd and hemo! yikes! I liked getting different points of view from everyone. I like to know what I might be up against. Hoping for the best as always! And thanks mariannas, your positive outlook and great spirit remind me that it is more than a tube. Its my lifeline, and I should be proud of it! :thx;
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I recently started doing PD straight away i went on the cycler.
I dont mind it, very easy to do set up takes only minutes to do.
I bought a 35 gallon trashcan to use for all the used bags and tubes. Saves time and space and i empty it once a week. The supplies dont truly take up to much room IMO.
Now the worst part is what to do with the tube during the day. I use to tape it to my side but this caused a rash after a couple days.
I get free (coverderms) it is about a 6x4 bandaid to cover the exit site.
I use two a day. One i cut at the end about a one inch deep by 1/2 inch pc. out of the coverderm. I then place this on top of the one i will use to cover my exit site. I then place both but they look like only one onto my exit site. What i have now is a little pocket to slip my connection part of the tube into.
It works VERY WELL, is free so to say and it is fresh everyday. At night when i put my leash on (connect to the machine) i dont even have to tape my exit site down the coverderm holds the tubing in place very well.
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Hey Paul.Karen - you need a PD belt! They are awesome... and much better than having to use tape or wrap the tube around somewhere. Fresenius sends me some every few months but I know they have some different ones on the Kidney Stuff site as well.
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I have been on PD for a month now and I would rather be on PD than hemo. I have four classes this semester and I have been able to do my 3 exchanges around my classes. I am very active! As for your freedom, you will have a lot more than you would on hemo. Your diet will be less restricted also. I have been on vacation and been able to do various activities while on PD. There are a couple things I don't like about PD. Looking bloated and not being able to go swimming probably top on the list. But hey small price to pay for feeling good! I have heard some stories about people being weirded out by the tube. Personally I explained to everyone my situation and they have no problem with it. I feel that it is very easy to hide under my shirt. Now about the sex. No problems. Of course I feel awkward with the tube but my partner understands what I am going through. I have made jokes about it and you and your husband will get used to it. My sex drive ironically improved..
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i really miss pd and i wish i had taken it seriously. the past 2 years on hemo have been a nightmare, i hate the lack of control
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I've been on PD almost 6 years now, and I much prefer it over hemo. On hemo you have to put up with all kinds of things, including rude technicians. At home I dialyze all night and then have one midday exchange. Nice and quiet, no rude people, much easier on my system, have more strength, not as many "down" days, etc. I'll stay on PD as long as I can.
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I will second that peleroja .. i wish i could have stayed on PD !
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Hi, I have been on PD for about 2 in a half 3 years now and it's not what I thought it would be at all!
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aclight,
I have the patientspride belts and they are great you do not even feel that you have it on. They are kind of expensive, I believe I paid $89.00 for three. But that was 2 year ago and I am still wearing them, and still like new. Get the "Classic" not the "Summer Light". The Classic is nice and soft against your skin, the Summer Light is kind of scratchy against your skin. They will send you a form to get them though your insurance.
Good luck with your PD training.
Ardyce
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:cheer: I would twirl my cath and sing stripper music, wish I had thought of the corset. Also when I had the cath in my neck and tummy I would wear my bf button up shirt. I never got used to sex with fluid in so I would plan do it while I was empty.
If your not happy w any part of your dialysis tell your nurses and doc, there is lots of freedom with PD to find out what suits you the best. Manual, CAPD, Midday, Tidal. I had lots of trials, but I eventually found what works for me.
I tape my cath or tuck it in my waist line. It just takes awhile to get used to it.
If your still in training, I bet your ready to be on your own.
Girl
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aclight,
I have the patientspride belts and they are great you do not even feel that you have it on. They are kind of expensive, I believe I paid $89.00 for three. But that was 2 year ago and I am still wearing them, and still like new. Get the "Classic" not the "Summer Light". The Classic is nice and soft against your skin, the Summer Light is kind of scratchy against your skin. They will send you a form to get them though your insurance.
Good luck with your PD training.
Ardyce
I've never tried Patient's Pride but I used Stickman's PD belts to hold the cath in place and they are awesome. They only cost about $20 each so i got 5 for $100. It goes around your waist, secures with velcro and has a pocket for the PD catheter. So much better than using tape. I think the site is www.stickman.com or somthing like that, I havent been there in ages cause i bought these belts years ago and haven't needed to buy new ones yet.
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:cheer: I would twirl my cath and sing stripper music,
lol, you too?! I've done that many times, but not usually singing, just humming The Stripper!!!!! I thought I was the only crazy one on PD.
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:cheer: I would twirl my cath and sing stripper music,
lol, you too?! I've done that many times, but not usually singing, just humming The Stripper!!!!! I thought I was the only crazy one on PD.
Gotta make it fun some how, keep twirling
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My Catheter doesn't even bother my husband now, hasn't for quite sometime. Amazing what they can ignore when they want to (men I mean). We are just a little more careful. Devo's 'whip it' just came on the radio, how ironic! (re: the triwling posts).
We try to keep everything as normal as possible, i do almost everything i used to except swim on a regular basis.
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I have been doing PD for 6 months. I like it son much better than hemo. I feel better, I have more energy and I can eat & drink more. I didn't do very well on hemo. I am on the cycler for 8.5 hours per night and do one mid-day exchange. I wear the stickman belts and find them pretty comfy. My catheter doesn't bother my husband, but I am not really comfortable with it yet. It's better than the one in my chest, though. My life is nearly normal again. We even recently went on a trip. I would not have been able to do this on hemo. It's really not so bad.
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Good on you Jerseygirl. Don't forget a sexy black corset is always handy for hiding that tube....