Starting PD soon hopefully..tons of questions

[DomJDavis1985]

So when i first started hemodialysis about a month and a half ago my doctors kept pushing PD on me as opposed to hemo because of my age, otherwise good health other than the KD, and the fact that i still work and go to school....being uneducated on the PD and a little afraid and hesitant of "doctoring on myself" i declined and decided to stay on Hemodialysis ...now after a month and a half..although i have gotten over the initial sick, , weak feeling that i had for the first week or so of HD....after talking to a Neph from another clinic that specializes in PD i think i am ready to start it....i feel like it will give me more freedom......i am not sure if this topic has been discussed already, if so someone please direct me to the correct thread..but are there any members on here who have did both PD and HD...( i am doing the type where you do 4 to 5 fluid exchanges a day) i opted out for the night time PD because it takes 8 to 9 hours and honestly with my schedule it is very rare that i get 8 to 9 hours of sleep at night...more like 6 to 7. i am wondering if u can tell me some of the differences between the two...and if PD is so great, then why are more people not opting to go on that verses Hemo?? what are some risks????i have so many questions, lol..enlighten me please!!!!

[lmunchkin]

Well Dom, from your picture you look like a lovely young lady, so young! It has been awhile since we did PD, but will try to help from memory. First I have a question, will you have someone helping you with this process? It is always best to have a good person to back you up just in case.
In my opinion, being at home is the best medicine period, whether PD or Home hemo.  If memory serves me correctly, I believe you find that CAPD is the option you have choosen instead of the cycler. PD really was a great way to dialysis, cause you had more freedom in what to eat. You dont get the washed out feeling like hemo and you will feel really good for the most part. Now Im not familiar with your health issues, but as I understand it, it is much gentler on the kidneys, especiallly if you have any function at all, and is also a good obtion for those who are eligible for transplant.  I quess it is less intrusive than hemo.
There are a few things that you have to be careful of on PD. Sanitary, sanitary and yes sanitary. Very frequent hand washes. This is very important and with proper training you will do this with careful ease. Be mindful of your cath site, make sure to keep clean.
Now I think CAPD each exchange is 45minutes, now I could be wrong on that.  But the good thing is when you do it you are done until next scheduled exch. That is the beauty of CAPD, you are not connected to a machine. Now we use the cycler, which was what he choose cause he could go to work 8 hours come home till time to dialysis. The draw backs to the cycler is #1 those heavy bags you have to lift up on the machine #2 machine alarms, which very seldom happened, but when it did, you knew it & #3 back when we did it, he couldnt swim in any pools, not that he did any how.
PD is an excellent option for those doing dialysis, but mind you, you are more at risk for infections.  That is why we no longer do it cause he kept getting peritonitis and the second time he got it, he couldnt do it again. But he has alot of other issues going on with him.
Dom, the main thing is just try it and if you find it doesnt work for you or you are uncomfortable with it then dont do it. If they are pushing you to do PD, then you must be a candidate for a transplant, and PD is ideal for those seeking a transplant. You are young and strong and very determined. You can do this Dom & remember anything is better when at home!
Hope this has helped and wishing you the Best Girl.   Let us know how things are going for you, okay?

[DomJDavis1985]

yes....the nephs are pushing PD on me because they want to keep me in top shape in order to get a transplant in the next few years....also being hooked to the machine is putting a damper on my school and work....i am on the machine three days a week from 10:30 to 3:00...(thats if i am lucky and get put on the machine at my scheduled time) alot of times i don't get on til 11 or after and don't get out til after 4...so it ruins any chances of me taking classes during the day...and then the other days i am trying to pick up shifts at work to make up for the time lost being on dialysis and recovering from Dialysis...I like the PD because its me taking care of myself on my own time....although i really like my techs and neph not being in the depressing clinic and also not having to deal with HUGE NEEDLES is looking better and better everyday lol....i am hoping to set up an appointment next week to talk to the neph at the other clinic and to begin my training for PD.

thanks so much for the kind words...and yes i am gonna start with the PD and you are right if i don't like it (which i think i will have no probs) i can always go back to Hemo :-(  even though i don't want to, lol....

I don't really have anyone helping me..my sister and i have an apartment together but she is never home....the neph told me that for the most part i could do the exchanges myself without help...and that each exchange takes about 30 minutes...i think the main thing that worries me about PD is that there is a high risk of infection..and also my sugar levels because i am diabetic......i guess time will tell

[MooseMom]

There's a forum for Home Dialysis in which lots of PD people post.  Maybe you can get some answers there.

You are the one who has to live life on dialysis, so you get to choose which modality is best for you.  Do whatever will keep you the healthiest because you are right...if you want to get a transplant, you need to work to keep your body in good shape.  You sound like a good candidate for PD by what little I know about it.

Some people are not eligible for PD because of scar tissue from earlier abdominal surgeries.  The main problem with PD is the risk of peritonitis, so you will have to be very careful to keep everything clean.  But PD works well for many people.  Good luck, and be sure to tell us how it all goes if you decide on this modality!

[phyl1215]

Hi, I have never been on Hemo but on PD for over a year now and doing just great.  I am on the night cycler because it totally frees up my day.  We travel with the machine with no problems.  I am as careful as I can be when hooking up and unhooking by washing my hands and using the hand gel.  I had to do the manual 4 x's/day and carrying around the fluid all day made my back hurt.  Your dialysis center will watch your sugar when they do the monthly labs and help you if it starts going up, you will have a great support team.  Good luck and let us know how your doing.

[lmunchkin]

You can do this, Dom. You are on the right track.  Good wishes in you endeavors, and do keep us informed!

[peleroja]

A lot of the time patients aren't informed about PD because doctors have vested interests in hemo clinics.  I liked PD much better because of the freedom in eating and drinking.  Since you do PD every day there are a lot less restrictions.  There is, of course, always the possibility of peritonitis, which is what finally got me, and I'm on hemo permanently.  I sure miss my PD.   

[HouseOfDialysis]

PD is manageable with diabetics, but you have to watch your sugar level closely.

[Lillupie]

A lot of the time patients aren't informed about PD because doctors have vested interests in hemo clinics.  I liked PD much better because of the freedom in eating and drinking.  Since you do PD every day there are a lot less restrictions.  There is, of course, always the possibility of peritonitis, which is what finally got me, and I'm on hemo permanently.  I sure miss my PD.   

I am back. I was gone from IHD for awhile, so I miissed this. Can you please explain to me what exactly happend and as to why you can no longer do PD? The last time I was this involved with IHD you were on PD.

Lisa

[Alisa]

Hi
I have been on PD for just over 5 years and have never been on hemo, I am 30 years old. PD lets you control you own dialysis which is scary at first but after a while it is very liberating.  I as well started with twin bags aka day bags but being full during the day is not fun and takes more time out of your schedule to do day bags then the night time cycler. Where I'm from we have to learn both in case of power outtages and medication dwell times etc.  The cycler allows one hook up and little work.  I  am hooked up for 10 hours a night, everyone is different, and you can just hook up and move around your house freely with around a 12 foot length.  Also during your dwell cycle you can break away and say go to the store or something as long as your back for your drain.  Anyhow I hope this gives you some perspective, if you have any questions please feel free to ask as I am an old pro now.
Alisa

[Lillupie]

i am wondering if u can tell me some of the differences between the two...and if PD is so great, then why are more people not opting to go on that verses Hemo?? what are some risks????i have so many questions, lol..enlighten me please!!!!

Hemo is usually done at the center, as you have been doing. PD is done at home on YOUR time and around your schedule.
Dom, please look at my last thread that I started describing the difference between the two modalitites. I personally have been on PD for a total of 3.5 years and out of those 3.5 years, I spent a total of almost 5 months on hemo. I do know the difference. Both have advantages and disadvantages.
 If PD is so great..well one of our discussion on IHD was "why arent more people on PD?" I think HouseofDialysis started it. You know usually doctors do not sit down with the patient. I wrote/started my last thread because that was really making me angry. So many people do not go to PD because they are scared of infection. THe truth of the matter is there is a higher infection rate with hemo then with PD. This is not counting fistulas. The difference is YOU determine if you get an infection or not on PD. 9 out of 10 times it is something you did. The hemo clinics seem to discourage people from PD, and push hemo, simply for the fact that people do get an infection on PD. The hemo clinics ONLY know this because the only PD patients they ever see usually have a pretty bad infection that htey have to have their catheter removed. Now, like i said 9 times out of 10 this is usually the PATIENTS own fault. It is up to me every time I do an exchange to wash my hands and using hand santizer when connecting and disconnecting. You aso have to wear a mask when connectiong and disconnectiong, close the windows, vents, A/C, fans, you get my drift. That is YOUR fault if you touch something and get contaminated (sp?). Not the nurses or the techs fault. I personally know a number of people on PD who never ever had a infection, while on hemo, with the permacath, i doubt if you can find me very many people with the permacath who can say the same thing. now I had the infection on PD once or twice. I could of prevented it. And never had one since and I actually did not have to get my catheter replaced, I just got treated with antibotics.

 The other thing is responsibility. (just being honest) You are responsible to do your exchanges. You are responsible to wash your hands, use santizer, take precautions you have to order supplies, eat more potassium, maybe drink more, keep a daily log or your weight/bp, and what you are using(some places make you take your temperature, not me though hehe)There is a lot more responsibility. It pays off. With hemo you dont have to do anything but show up, and take your binders,

Pd has more responsibility, but I would not trade it for hemo! I can nearly eat anything I want because of the potassium is lower on PD because you are doing dialysis as much as your normal kidneys work. There really is not much of a roller coaster feeling of one day you feel good, the next day at hemo you feel worse then you did on the days that you were not on the machine on hemo.

yes if you dont want the cycler, then you will always have to do manuals about 4 times a day. For me it takes about 30 minutes each time. I usually dont mind because it is a break. I see it as a break during the day. Yeah it can suck. Both modalities do suck. lol You do it 4 times a day. So, it is one when you wake up in the morning, One before you to go bed, and 2 times throughout the day. I have done it in the car, at my freinds house. I went to Sicily, and now in a month, Im going to Germany on PD. With extra binders I usually can get away with eating close to what I want. I can have fries, tomatos, anything wtih potassium. The boxes of supplies get on my nerves. Oh and you are only at the clinic twice a month at the most, once for labs, and once to see the doctor. Maybe a little more offten occassionally for more supplies like masks, epo, tape to tape my catheter.

The bottom line is your lifestyle. Im a pretty busy person, so for me, PD is best. Besides getting on a machine at night (which only takes me 15 minutes at most to set up), if i avoid these online forums, I dont feel like a kidney patient. Its not in my face going to a center every other day. I can do anything I want to do in my life from the time I wake up until the time I go to bed. I have learned you have to be willing and wanting a particular modality. I notice (even myself) feel stuck and get ticked off about this lifestyle that was not a choice, and thats not the way to go because then you will mess up. Like, if you despise being on PD, then yes you will get an infection, if you despise being on hemo, then yes you will probably have to get another graft, access at some point., ect. I ONLY say this because when it got to the point that I solely dreaded doing PD, I ended up with a hernia, and had to go on hemo for x amount of time. I stayed on hemo because I got sick of doing PD every single day. I ended up having problems on hemo and with hemo I never had on PD, so off hemo I went and I embraced PD, and had not had a complication since and that was 3 years ago.

I guess the other risk is and can be is low blood pressure, again this is preventable. In the morning you are suspose to take your vitals (just like they do on hemo), if your blood pressure is low that day, then drink, drink, drink. lol, or use the lowest strength. If your blood pressure is high, then you will use a higher strength. Getting used to a full belly is another drawback. Im petite and you cant really tell on me.

THey train you, You will not go home without confidence.

Good luck,
Let me know if you have any more questions,

Lisa

[Alisa]

I completely agree about the rate of infections with PD. I was told the stats were about one peritonitis per 3 years on PD, however there are exit site infections as well to be aware of, I believe they are more common but less serious to a degree as well. 99% of the time a peritonitis can be treated with an antibiotic you would put into your dialysis solution.  I will agree that almost always you are responsible for your health but be aware sometimes you can do everything right and still get an infection, that's just life. 

[Riki]

I've spent a little more than 5 of the last 20 years on PD.  I had peritonitis once, and only once, as the same infection evolved twice, from a simple, easy to treat bacterial infection, to a not so simple and not so easy to treat bacterial infection, and finally to a complicated, untreatable fungal infection, which made PD impossible. 

That being said, if I could go back to PD, I would.  In a heartbeat.  I had control, because I was able to do everything myself. My days were free, because I was on the cycler at night and didn't need a day run.  I was on my own schedule, and I loved it.  You have to be extra diligent when it comes to hygene, and I wasn't allowed to swim, which sucks, when you live on an island, and must have descended from fish. *L*

[rsudock]

I've spent a little more than 5 of the last 20 years on PD.  I had peritonitis once, and only once, as the same infection evolved twice, from a simple, easy to treat bacterial infection, to a not so simple and not so easy to treat bacterial infection, and finally to a complicated, untreatable fungal infection, which made PD impossible. 

That being said, if I could go back to PD, I would.  In a heartbeat.  I had control, because I was able to do everything myself. My days were free, because I was on the cycler at night and didn't need a day run.  I was on my own schedule, and I loved it.  You have to be extra diligent when it comes to hygene, and I wasn't allowed to swim, which sucks, when you live on an island, and must have descended from fish. *L*

Riki I am not sure if you have answered this before but why haven't you tried home dialysis? Since you did PD I would think that would make you an excellent candidate to do hemo at home...just wondering?

[rsudock]

Dom check this link out.... http://renalfellow.blogspot.com/2011/03/failure-to-thrive-on-pd.html

Living with ESRD my entire life and having a sibling go through this as well, I am just going to respond to some of the comments I have seen and my initial gut reaction to them...

  I liked PD much better because of the freedom in eating and drinking.  Since you do PD every day there are a lot less restrictions. 

If you do nocternal or home hemo dialysis you can still have more freedom in eating and drinking...

i am wondering if u can tell me some of the differences between the two...and if PD is so great, then why are more people not opting to go on that verses Hemo?? what are some risks????i have so many questions, lol..enlighten me please!!!!

Hemo is usually done at the center, as you have been doing. PD is done at home on YOUR time and around your schedule.
Dom, please look at my last thread that I started describing the difference between the two modalitites. I personally have been on PD for a total of 3.5 years and out of those 3.5 years, I spent a total of almost 5 months on hemo. I do know the difference. Both have advantages and disadvantages.
 If PD is so great..well one of our discussion on IHD was "why arent more people on PD?" I think HouseofDialysis started it. You know usually doctors do not sit down with the patient. I wrote/started my last thread because that was really making me angry. So many people do not go to PD because they are scared of infection. THe truth of the matter is there is a higher infection rate with hemo then with PD. This is not counting fistulas. The
Lisa

home hemo can be done around your schedule as well Dom. And I would really look up the research on the infection rates between PD and HEMO.  Having a fistula and doing hemo is the gold standard of dialysis. NOT in center 3 times a week though...

i am wondering if u can tell me some of the differences between the two...and if PD is so great, then why are more people not opting to go on that verses Hemo?? what are some risks????i have so many questions, lol..enlighten me please!!!!

Hemo is usually done at the center, as you have been doing. PD is done at home on YOUR time and around your schedule.
is a lot more responsibility. It pays off. With hemo you dont have to do anything but show up, and take your binders,

Pd has more responsibility, but I would not trade it for hemo! I can nearly eat anything I want because of the potassium is lower on PD because you are doing dialysis as much as your normal kidneys work. There really is not much of a roller coaster feeling of one day you feel good, the next day at hemo you feel worse then you did on the days that you were not on the machine on hemo.


 ti

Both modalities take responsibility. When I was on hemo I did more then just "show up". In center hemo you have to be even more vilgilant about your diet. Sometimes if you still pee then you may be able to get away with not watching the fluids as much. If you are feeling really sick after your hemo treatment then maybe they are taking to much fluid off of you or your BP is getting too low.

Dom you mention the nephs want you to go on PD b/c you are young and they want you to be in shape for a transplant. Is this because they believe that hemo is hard on your heart and would make you unsuitable for transplant? There are many folks on hemo that get transplants everyday. I have had 2 transplants; 1 being on hemo. Doing nocternal or home hemo would be gentler on the heart and allow you to run the machine pump speed slower.

PD is great for traveling and no needle sticks but you can travel with the NxStage system as well. (sorry can't avoid the needle sticks, but if you do the button hole technique you can keep your fistula from looking all bumpy and avoid having future surgery for other access sites)

It seems like PD does not last forever eventually either b/c of scarring or infection most folks have to switch back to hemo.

Like Lisa said if you are ready for the responsibility of PD and making sure everything is sterile then go for it, but if you are doing PD b/c of scheduling you can do home hemo according to your schedule as well.

Tbarrett has a post about starting her journey on PD. Boswife could tell you about her journey doing NxStage with her hubby. I would go to the News article section and look up articles about PD vs. HEMO dialysis just to make an informed decision.

Good luck to you friend,
R

[rsudock]

Here Dom I found some other articles for you to check out hope it helps!

http://www.renalandurologynews.com/peritoneal-dialysis-does-it-have-a-brighter-future/article/190882/

http://ihatedialysis.com/forum/index.php?topic=20347.msg340251#msg340251
This article is called Choice of Dialysis Modality in the United States

http://ihatedialysis.com/forum/index.php?topic=22750.msg372349#msg372349
The clinical Impact of More Frequent and Home Hemodialysis

http://ihatedialysis.com/forum/index.php?topic=23169.msg377447#msg377447
Home dialysis first: a new paradigm for new ESRD patients

this article talks about PD , home, and incenter...pretty informative

If you can't get the links to work I put the name of the article under so you could search for the article...

[Riki]

I've spent a little more than 5 of the last 20 years on PD.  I had peritonitis once, and only once, as the same infection evolved twice, from a simple, easy to treat bacterial infection, to a not so simple and not so easy to treat bacterial infection, and finally to a complicated, untreatable fungal infection, which made PD impossible. 

That being said, if I could go back to PD, I would.  In a heartbeat.  I had control, because I was able to do everything myself. My days were free, because I was on the cycler at night and didn't need a day run.  I was on my own schedule, and I loved it.  You have to be extra diligent when it comes to hygene, and I wasn't allowed to swim, which sucks, when you live on an island, and must have descended from fish. *L*

Riki I am not sure if you have answered this before but why haven't you tried home dialysis? Since you did PD I would think that would make you an excellent candidate to do hemo at home...just wondering?

Hone dialysis has only just been offered here, and when I say just, I mean in the last 3-4 months.  Plus, I"m legally blind and can't put the needles in myself

[Willis]

I don't know the full details, but I think Medicare changed the rules this Jan 2011 for dialysis centers and they now package costs into something called a "Bundle" and each center receive a flat rate payment for each dialysis patient. I'm guessing that somehow PD costs less than other modalities so that could be a major reason it is being recommended more often because it probably costs less and saves the government money while giving the PD centers in particular more money. Someone else can jump in and explain this more fully perhaps?

 

[Lillupie]

Remember with home hemo you have to have a partner. On PD no partner is needed.

Lisa