I'm new here. I'm at 13%, will start PD sometime in the not-to-distant future. Attended a class at a local dialysis center. They recommend Fresenius PD. How long can you be on PD before it doesn't work anymore? I do not like the idea of having to have the fistula in my arm, so if I can put that off for several years, that would be my first option.
How long can I be on PD: I'm new here. I'm... - Kidney Dialysis
How long can I be on PD
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RonZone
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I’m still waiting to be put on dialysis too. I’ll start with PD as well.
I’m just curious; why did they recommend Fresenius specifically?
Jayhawker
The kidney doc I've been seeing has his office in the same building as the dialysis company and works with them it seems, making it convenient for him. That dialysis center gave me literature on Fresenius, I assume that is the company they are associated with and who provided the "free" consultation "class" with the RN that I attended.
KidneyCoachNKF Ambassador
PD doesn't work for everyone. For many it can last 10 or so years, others just a few years, but there is no real way to say how long it will work for you.
The machines for PD have a few choices. I personally feel the Baxter is the very best. There are a couple new ones out if I remember correctly. I personally stay away from the Liberty too many breakdowns. Again just my opinion. Blessings
I would love to get 10 years out of PD, but based on what you guys are saying, I realize it could be a lot less. The dialysis center attached to my Kidney doc's office gave me the literature on dialysis from the Fresenius company. I do see the word "Liberty" in one place. I'll have to find out if I'm stuck with that machine if I use this dialysis center and if I am, will I have to change doctors to go to a different dialysis company. I REALLLY appreciate this info, as I thought I was stuck with using this doc/company since they didn't mention any other options. Maybe not if there are other options out there. I'm on medicare, but I still work full time and still have my Blue Cross Blue Shield insurance, so I'll find out if they will cover a Baxter machine if it is more expensive than the Liberty.
Have you taken a look at kidneyschool.org ? It has a plethora of information that may help you.
It seems clear that in my metro area I have to change nephrologists if I change dialysis centers. What’s more, the dialysis clinic I will have to use for PD gives no choice in cyclers, etc.
I realize this makes training easier and more streamlined for them. However, there is clearly NO PATIENT CHOICE in any of this. I’m not at all pleased with that situation.
Jayhawker
Hey just checking to see if you have started dialysis yet? I have not. I see my doc again March 19th to get more info/lab tests etc. then go from there. Hopefully I can put it off as long as you have!
I’m still not on dialysis. My next nephrologist appt is March 31.
Jayhawker
Ok, so how are you feeling now. I'm sitting here at work, falling asleep at my computer. My skin feels "tight" if that makes any sense, and I've gained some weight without eating much. Might be water retention, not sure. Other than those things, I'm doing ok. What is your experience like?
I was dealing with a cold which was causing the symptoms I was experiencing. Now that I seem to finally be moving past the cold (although I’m sneezing quite a lot this morning again with more sinus congestion—I’m truly hoping this will not move back into the full cold...) I’m feeling much better.
So at this point no fluid retention. I’ve actually been loosing some weight which is alright as I’m slightly overweight. I have severe anemia as a side effect of my chronic kidney disease so I tend to be somewhat tired all the time. But I’m able to stay awake for work. That wouldn’t be the case if my anemia wasn’t under effective treatment options though.
I’m finally able to get started doing light exercise again daily over this past week. I found it pretty hard to keep that up while I was sick. My appetite was not good while I was sick but it’s back to normal now. It’s good to be feeling better. I won’t get labs again until the last week of March so I’m not sure where my labs are at this point.
How are you feeling?
Jayhawker
I have not had "labs" since last fall, so I have no idea where I am with any of that. If I'm anemic, I don't know it, though from what I've read the symptoms I'm having fit. My doc didn't put me on anything last fall, but he might at my appt March 19. What are you taking for anemia? Just curious what they do for that. I have some projects I'm working on at home that are all "sitting" projects, but once I get those completed, and the weather dries up and turns a tad warmer, I too want to get out and start walking. The time will change and it will turn warmer pretty soon, so that will help motivate I hope. I know that the way it works is that expending energy doing exercise actually gives more energy, or I hope that's what happens. But to be honest, it's going to be hard to make myself get up and get out there as tired as I feel these days. I hear you're supposed to wait as long as you can before starting dialysis, but the longer I go the more tired I get. I know the guys at work have caught me more than once with my eyes shut at my desk. And with limited caffeine, it's tough to keep em open at times.
Most people are put on Epp injections for anemia if it’s severe enough. Some also get iron IVs. My nephrologist tried both with me. They helped but I had continuous ups and downs with functionality while on those. So he then tried an oral medication called auryxia. That has been a game changer for me. My hemoglobin is now very stable at 11.0. So I’m now mildly anemic as compared with hemoglobin 4.6 without treatment. I take three 210mg tablets a day.
Jayhawker
I'm putting this info in my notes to ask my doc about in March. This is VERY helpful info to know! Thanks! I really would like to be able to make it through the day without having the imprint of my keyboard on my forehead 
It sounds like you've really studied this stuff. I've not gotten into the nitty gritty of it yet, I guess i will starting in March. Do pass along any other tips that you know of that helps in feeling a bit more functional on a given day.
HI JayhawkerMy Nephro has prescribed Aurexyia as well. It is very expensive. Did you find any generic for it? It is a tier 4 Med. My doctor has given me few sample tablets but soon I have to buy them
Please reply, thanks
God bless
I used a Walgreens specialty pharmacy for my script. They were able to get a manufacture’s coupon for the medication. It covered nearly the entire gist of the medication. I’m still on regular insurance through BCBS.
Jayhawker
All depends on many factors. But at my PD clinic they work on the assumption that it will be a maximum of five years. But I know one person on it for ten years. There are lots of variables and none can be evaluated before you actually start PD. I have been on it three months and feel a lot better.
Thanks for the info. I'm going to be shopping around asking a ton of questions like this over the next few weeks at different dialysis centers available in my area and find the best combination for me. I assume you can change even after you're on PD, that the tube would fit any machine, not just the one you start with.
I don't know what fits what. I am doing four manuals a day as it does not seem easy getting an over night machine where I am in England. I don't think everything is compatible from what I have heard.
I plan to do some research to find out. Hey, I plan to visit England in April. I've been wanting to visit there since I was a kid and now that I know that dialysis is in my future, it has made me want to visit there now, before I start dialysis. I may have a few questions for you before I go. Not sure how to do private messages on here since I just started posting.
Depending on the diaylsis your on depends if you travel with PD you can take it to England and not stop traveling if your in center it's alot more tricky to travel it can be done but it's alot more work and you won't get much out of your trip
Thanks for the reply. I'm going to do PD for as long as it holds out, and once I've been on it a few months starting this summer or fall, I will plan one overnight somewhere close to home to give taking everything with me a try. It sounds pretty doable. I found out the machine weighs about 30 pounds. Not sure how much the bags of fluid for one overnight weight.
Reach of my 6L bags sighs snit 6kg and I use 2 per night.
Wow, that's pretty heavy. I'll need a separate suitcase just for the bags and tubs etc, or a weekend trip it seems. Once on PD this summer I'll try one trip and see if it's worth all the effort for it, or if I'll just do day trips after doing PD at night. I only have a few places that I would want to travel too that would require an overnight. One is a snow ski trip to the mountains. Giving up skiing would be tough to do, but we'll see how all this goes.
Yes. The main PD tube can be fitted with manual or any PD machine by switch out the end cap.
I think that is a good idea to travel before you are on dialysis. I have done several short holidays within England since being on it so travel is possible but it is a big pain in the butt having to cart around all the connectors and caps and stuff even if you get the fluid delivered to your hotel. I think to message me you just follow me. Let me try.
Hey rabbit01, not sure if you're still on this forum or not. I'm still not on PD (thought I would have been by now). Do you know if they've lifted the quarantine requirement for folks like me who want to travel to England from the United States. Don't want to go yet if I have to spend the first 10 days or so in the hotel room with them shoving food under my door. But I REALLY would like to get my trip there taken care of before starting dialysis.
Hi I am still here. I understand that Travel restrictions remain in place for travel from the United Kingdom to the United States and vice versa. As you may have read this Indian/delta variant numbers are increasing every day over here.
Hi, just checking to see if you are still on PD?
I am indeed. 33 months now. I have been reading your recent posts.
Oh wow, you are my hero. Let me know if you have any tips and tricks or secrets to share about all of this that I may have missed in other posts. Did I tell you that I was able to get my trip in to Fordham, England (all three of them) back last fall? That trip was a memory I will never forget. Just Awesome.
Will do. I do manuals rather than the cycler. At first the amount of boxes and equipment is overwhelming but overtime you'll get to be an expert on stock ordering. Keeping the exit site happy is an ongoing job but again you'll soon get the hang of it. That's great you did your trip to England.
Hey, thanks for the note. Yeah, I have NO idea where I'm going to put all the stuff. Thought I could use my garage, but the PD home nurse said "nope". Needs to be in climate controlled house. So shucks, gotta make room. There's a ton I will have to learn about all of that stuff, but that's ok. Take it as it comes. Hopefully I'll be an old pro like you soon. So why did you opt out of doing the cycler? Just wondering, if you don't mind sharing, even if it's just personal preference.
I just like the simplicity of the manuals. I am retired so it's not like I need to go out everyday. We go away for long weekend breaks and I do dialysis in the hotel room. I also get drain pain which is really painful. Feels like your internal organs being sucked out. Doing manuals means I can shut down the drain for a minute or two and then recommence once it goes away.
Ok, that makes a lot of sense. And yeah, I'm definitely not looking forward to the drain pain thing. My PD nurse basically is pretending it will not be an issue and will be minimal, but I've heard to many on here talk about it to believe it will be as my home PD nurse is describing it. Guess I'll see how I do with it in about 3 weeks! I'm definitely not a fan of pain.
I don't know. I've been doing it for a year our so with no unusual problems. I know of people who have been doing out for many years. I'll ask my Dr. and nurses next visit.
As far as liberty pd has given me the ability to travel and have deliveries at places like Disneyland/world. You would just take your machine and the pd medicine should deliver where you are headed. I use Baxter who have been amazing with everything.
I know the word dialysis sounds scary but its not the end all. The point is to extend our life expectancy for the main goal, transplant!
Best wishes friend. It's going to be okay. Ask your doctor all the questions you can to feel comfortable and try to relax.
Yeah, it seems a bit overwhelming to have to keep up with all this stuff just to stay alive when on a simple trip. But like everything else, once you start doing it and it becomes routine, it probably won't seem like such a big deal. That's how I plan for it to be anyway 
Thanks for the encouragement.
Anytime friend. If you think about it, it isn't a whole lot to have to travel with. :). If you ever need encouragement that's what I do :).
I also shouldnt let fear control me. I am terrified of my next step but I need to overcome it and move on to brighter things.
Long story short, keep us updated on your journey there seem to be some really amazing people here.
Just checking to see if you're still checking this site. I start PD in about a month.
Ron, found this looking for something else. Did you have to get the fistula?
Nope. I'll decide about getting that later, depending on the success I have with PD and it's longevity.
I don't have one either
Well you and I seem to be the exception to the rule.
Not what you're looking for?
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