Peritoneal or Hemo?

[mallory]

I was reading Epoman's article about NxStage and it sounds very good.  I had decided that I would do CCPD when I start dialysis, but maybe I'd rather do home-hemo.  They told me the advantages to CCPD are that I can still work full time without doing exchanges at work, and it's easier to travel with CCPD.  But those aren't issues with home-hemo, either.

Have any of you tried both?  Any thoughts or recommendations?

[LT514]

I have done both. I did CCPD with one exchange from 11-13 years old; and hemo from 21-22 and 25-27. Here's my experience.
PD was great. At first. Then I got peritonitis. Then they told me I had to limit my fluid intake to 16 oz. per day (that is nothing) and I had to run on the machine for 16 hours per night. I did it, because I was three months shy of getting a transplant.
Hemo, I liked better. I could swim in lakes, go in hot tubs, take baths. I didn't have all the equipment stacked up to the ceiling in my house. My diet (though this is unusual) was far more liberal. Usually it is the opposite. I had three days of tx with 3:15 hour runs, and I was doing well. I rarely cramped. If I could do it all over again, I would do home hemo.
However, the best treatment for me has been transplants.

[mallory]

Thanks, LT514.  I'm really rethinking my decision.  Peritoneal sounds bad, with all the supplies, can't swim, the fluid makes you gain weight (which I really don't need), and being on the cycler 10 hours a day.  I'm going to ask my doctor about home hemo and see if they offer it here.  They only told me about CAPD, CCPD and in-center hemo, but it can't hurt to ask.

[livecam]

How about neither Mallory?  Work at getting yourself on the transplant list asap and don't do either or minimize your time on dialysis. 

[goofynina]

BUT, if worse comes to worse and you do need it, i am telling you, CCPD is the way to go,  it dialyzes you while you sleep and the whole day is yours. 

[mallory]

Thanks, all of you.  I would like to get a transplant if I can, I'm not sure that I'm eligible.  My Nephrologist said I'd have to be off the medications I'm on for vasculitis for 6 months before he'd consider a transplant.  My Rheumatologist said he'd be willling to argue the point with the Nephrologist, so we'll see how it goes.  The medications I'm on are immunosuppressants, so, it does seem like I should be able to get a transplant since I'll just go back on the same medications after the transplant, anyway.

Goofynina, How do you sleep with CCPD?  I've worried about that because I have trouble sleeping now.  Is the cycler really noisy?  Is it hard to sleep hooked up to the machine?

[mmmmdeedee]

I've been on both capd, ccpd, and hemo. Hemo was bad for me because my shunts kept going bad and they kept having to be replaced in other parts of my body.

If you are really, really careful with ccpd it minimizes the chances of peritonitis. One of the biggest problems of CAPD. Sleeping on the machine isn't so bad. The minimal noise becomes white noise after awhile and you just sleep through it.

I started off taking a Tylenol pm to help me sleep through. Now it's a lot easier. But I just crawl in bed, hook up and read a good book. I actually look forward to getting in bed now!

I guess it all depends on whether you can take being in bed for that time span, and whether you are able to stick needles in yourself. Six of one, half dozen of another I guess.

Good luck either way!

[angieskidney]

I have been on Baxter CAPD, Fresenius CAPD & CCPD, and Fresenius 2008K HD in clinic (no home hemo yet in my city but I can't get it anyway in my building unless no changes need to be made to plumbing).

I preferred Peritoneal Dialysis over Hemo Dialysis for the freedom and with it being nightly I was free all day and worked 30 hrs / week and could drink and eat more than I can now.

I actually weight MORE now on HD than I did for the 4 years on PD. And I have only been on HD for 15 months!

But I do get better clearances but that is different for everyone!

It is a personal choice and chances are through your life, depending on the age you must start, you will get to experience both as it is!

If your eye sight is NOT that good, go with inclinic HD. If you have bad circulation, best to go with PD most likely.

You must discuss it with the resources you have (renal social worker, surgeon, nephrologist, dialysis nurses, etc) and do your research!

[mallory]

Thanks, everybody, this is really good information.  It sounds like I'll try the CCPD that I was planning on, and I'll keep trying for a transplant. 

You know, before I found this site, I just never had anyone that I could ask all these questions.  My doctor told me that I would have to start dialysis soon and asks me, which type do I want?  I didn't even know there was more than one type of dialysis!  So he sends in his nurse, who explains PD and Hemo and then says I could probably travel more easily with PD, so I choose that one.  Then I went home and started desperately searching the internet to see what I had signed up for.  It's so good to be able to ask the question here and hear from people who have experienced dialysis what the pros and cons are.

You guys are great, thanks for your help!!!

[goofynina]

AND SHE CHOOSES PD    WOOHOOO, GOOD CHOICE    i know you will be happy with your decision

[angieskidney]

Great choice! That was my first choice because I didn't want the needles and PD you never have to stick yourself (except for the Epo needles which are tiny and done subcutaniously which is easy to get used to like diebetics do )

Good luck!

I know I enjoyed PD! The only thing I didn't like is the repetativeness .. but you get that with any dialysis as it has to be done time and again to live

[Panda_9]

I definitely reccommend PD before hemo. If it doesnt work out then by all means go onto hemo. If PD works for you (good clearance etc), then I beleive it has more advantages than hemo. You can travel more freely, it is very easy to do with less complications, no needling, less fuss. Home hemo is very involved, and can get very stressful and time consuming.

[angieskidney]

Plus not every dialysis unit offers home hemo but PD is done at home so it makes it easier that way

[ulrika]

My daughter Sandra tried the cycler, ten hrs per night, however, it kept waking her up while draining, as it would not stop...continued draining even after drained, which caused her a lot of pain. She is now back on manual. Anyone have advice on how to handle the weight gain? Sandra has always been a very tiny girl, who never managed to gain weight, even when needed to. Now, since starting pd in may/june she looks like she is 5 months pregnant, and can't fit in to any of her clothes.

http://www.kidneytransplantforkyliesmom.blogspot.com

[angieskidney]

My daughter Sandra tried the cycler, ten hrs per night, however, it kept waking her up while draining, as it would not stop...continued draining even after drained, which caused her a lot of pain. She is now back on manual. Anyone have advice on how to handle the weight gain? Sandra has always been a very tiny girl, who never managed to gain weight, even when needed to. Now, since starting pd in may/june she looks like she is 5 months pregnant, and can't fit in to any of her clothes.

http://www.kidneytransplantforkyliesmom.blogspot.com

Ya I got into the habit of wearing pants with elastic band and large tops to cover the belly. People asked me if I was pregnant. Try to stay away from excess sugars as the dextrose in the dialysate is sugar in itself. If she has no urine output then the body isn't getting rid of the sugars as much and may need to have her blood sugar levels tested every year just to be on the safe side. At least that is how my family doctor felt.

[billable]

My wife started out on CAPD in December.  She had been on home hemo 20 years ago before getting her transplant and had a phobia of the needles.  She was having way too much trouble sleeping to stay hooked up to the cycler all night, so CAPD seemed like the only choice.  Even without the weight gain, imagine taking a 2 liter bottle  and sticking it into your abdomen.  It will stretch your belly to make you look pregnant.  That was a big psychological problem for her.  I think all women are pretty concious of the physical changes in their body.  Then the 10 extra pounds came on.  The clearances were never good on PD for her.  And with the uremia came the jerking and twitching.  Medicines to control all the side effects caused her to be unsteady on her feet, so she started falling a lot.  The bruising has to be reabsorbed and causes more uremia.  It was a vicious cycle.  We get over one problem and something else would come up.

We just finished training on the Nxstage and did her 2nd treatment at home last night.  She feels great (well, compared to 2 weeks ago).  She is sleeping through the night.  The jerking has not gone away completely, but it is much better on less medicine.  Now it is mild and only in her sleep.  Her abdomen is noticeably smaller and she is feeling better about herself.

For us the PD just didn't work.  The nxstage, while it is too early to give it a total 100% positive review, seems to be our best alternative.  We just can't wait for that call from Vanderbilt to come and get a kidney.  Everytime the phone rings, my heart starts racing.

[goofynina]

Billable, i am glad your wife found the treatment that works best for her and i hope you do get the "call" soon   Keep us posted k,

[Panda_9]

My daughter Sandra tried the cycler, ten hrs per night, however, it kept waking her up while draining, as it would not stop...continued draining even after drained, which caused her a lot of pain. She is now back on manual. Anyone have advice on how to handle the weight gain? Sandra has always been a very tiny girl, who never managed to gain weight, even when needed to. Now, since starting pd in may/june she looks like she is 5 months pregnant, and can't fit in to any of her clothes.

http://www.kidneytransplantforkyliesmom.blogspot.com

You are probably going to look pregnant on PD whatever weight you are. You will probably need to buy bigger clothes to accomodate, I know I did. I was on 3 litre bags and I looked like I was due any minute. She may not of put on any weight, obviously having all that fluid in there is going to push your belly out to a point. And it makes it hard to keep your abdominal muscles toned, therefore even more likely to stick out. She may also be one of those people who accumulate fluid retention in the abdomen area instead of the feet and ankles.

[angieskidney]

Ya I myself didn't get it in my feet so much. Even at just 2L (3L??? How could you handle that? 2L was a lot for me!) I looked pregnant and then the drextrose!

I am just glad I got my stomach back after getting off PD even though it DID work for me!

The needles aren't so bad once you get used to them .. but I too had a HUGE fear of the needles. Damn I STILL do! lol (Epoman's been trying to calm me down about self-cannulating lol)

[ulrika]

Thanks, everybody, this is really good information.  It sounds like I'll try the CCPD that I was planning on, and I'll keep trying for a transplant. 

You know, before I found this site, I just never had anyone that I could ask all these questions.  My doctor told me that I would have to start dialysis soon and asks me, which type do I want?  I didn't even know there was more than one type of dialysis!  So he sends in his nurse, who explains PD and Hemo and then says I could probably travel more easily with PD, so I choose that one.  Then I went home and started desperately searching the internet to see what I had signed up for.  It's so good to be able to ask the question here and hear from people who have experienced dialysis what the pros and cons are.

You guys are great, thanks for your help!!!

I know what you mean about only knowing about one type of dialysis (hemo). When we heard about PD, we thought it sounded barbaric at first. However, as she got used to the idea, my daughter decided that pd would be the lesser of two evils, as she is deathly afraid of needles. Although I am not posting much anymore, as I am working nights, and helping Sandra, and her daughter in the day time, I read this forum every day, and don't know what we would have done without it. You all are a brave bunch, and I thank you from the bottom of my heart for being here.   

[Panda_9]

Ya I myself didn't get it in my feet so much. Even at just 2L (3L??? How could you handle that? 2L was a lot for me!) I looked pregnant and then the drextrose!

I am just glad I got my stomach back after getting off PD even though it DID work for me!

The needles aren't so bad once you get used to them .. but I too had a HUGE fear of the needles. Damn I STILL do! lol (Epoman's been trying to calm me down about self-cannulating lol)

Beleive me it wasnt comfortable!!! When I first started 3L it was rather painful, I just felt like my belly was going to burst. It affected my appetite as well (along with the severe nausea), as once you had all that fluid in you, there wasnt much room for food or drink! When Im due for dialysis now I still tend to look pregnant as all the fluid accumulates in the abdomen. It is a real pain as my clothes dont fit me the day before dialysis, but they fit me the day after!

[angieskidney]

Ya I myself didn't get it in my feet so much. Even at just 2L (3L??? How could you handle that? 2L was a lot for me!) I looked pregnant and then the drextrose!

I am just glad I got my stomach back after getting off PD even though it DID work for me!

The needles aren't so bad once you get used to them .. but I too had a HUGE fear of the needles. Damn I STILL do! lol (Epoman's been trying to calm me down about self-cannulating lol)

Beleive me it wasnt comfortable!!! When I first started 3L it was rather painful, I just felt like my belly was going to burst. It affected my appetite as well (along with the severe nausea), as once you had all that fluid in you, there wasnt much room for food or drink! When Im due for dialysis now I still tend to look pregnant as all the fluid accumulates in the abdomen. It is a real pain as my clothes dont fit me the day before dialysis, but they fit me the day after!

Oh that brings up a very important point and memory for me!! On PD I couldn't go to the bathroom as well because it was pushing on everything. So when I drained initially I would disconnect and go to the washroom and do my thing. When doing CAPD I would bring it in the washroom with me so I didn't have to disconnect. It was easier to do that. Had you found similar problems?

[geoffcamp]

****My opinions and experiences ONLY!!****
I did both PD on the cycler and Hemo.  I absolutely HATED PD!!!  I could not do anything!  My RX for PD was 11 hours EVERY night on the machine and 1 exchange during the day.  That meant I had to be home EVERY night before 8PM to be up the next day around 8AM, I just could not do it!  then there was all the supplies at home and the fact that I had to do everything!  On top of that I needed a sterile environment to do my exchange during the day!  They (meaning the Doc's) fed me a bunch of BS about how I could travel and how good it was well in my experience it really sucked!  No social life no swimming (I live in Florida and I dive and LOVE to swim) then I got Peritonitis and that really sucked!  I never did well on PD and I did finally get my transplant thank god!  When I lost my transplant I decided to try Hemo and it has been great for me for the last 6+ years.  So much easier on my life and I feel good  well as good as I can I guess.  I have had my complications and issues on hemo but all in all it has been a much better experience for me then PD!  I am sure each individual has their own experiences and opinions that is just mine.
Geoff

[angieskidney]

Wow that was a good post! 

This is turning out to be a very informative thread about different expreriences on different types of dialysis! 

[mallory]

All of this information is great, I appreciate all of your input so much.  This is a HUGE decision.  I worry about hemo because I have vasculitis so my veins aren't very good, but I worry about PD because I don't want to gain weight and I worry about storing all the supplies.  I worry about travelling because they said I could travel easier with PD, but it doesn't seem easy (and Geoff's experience backs that up!) and that's important to me.

It's just so hard to make a decision like this, one that's really going to affect your whole life.  There's so much to think about.  It still amazes me that at my doctor's office they just asked me which one I wanted, hemo or PD?  How the heck do they expect someone to answer that when they just found out they need dialysis five minutes before that?

I'm still hoping that my kidneys can hold out long enough for me to get off the immunosuppressants I'm on, then maybe I can get a transplant.  But, last week the doctor said my kidneys are getting worse, so I'm probably going to have to make a decision soon on dialysis. 

Thanks again, everyone, for the information!