I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis => Topic started by: rufin on July 05, 2011, 11:05:40 AM
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Thanks for all the welcome replies to my first post. Having gotten my head around the whole idea of dialysis, I thought I had developed a plan going forward, but find mys elf changing my mind. I had planned on having a fistula placed in August and begin incenter dialysis and NxStage training in November, with starting home hemo in the new year if all went well. I figure I have time, since my kidneys are still functioning, if only at 10%.
Having watched some videos of both NXStage set up, Bill's excellent vids on his home hemo and others on PD manual and nightime cycler exchange, I find myself drawn towards PD now, so am reconsidering getting a catheter put in rather than a fistula, to begin with. Is there a similar delay between the catheter surgery and beginning to use it, or can I wait a bit longer before having the surgery (assuming my health and docs say that is OK, of course)? What is the typical recovery time following catheter surgery and starting PD?
I still cant get my head around manual exchange, so am thinking about night time cycler for that. I've read some horror stories about the Libery machine from Fresenius and seen good reviews of the Baxter home cycler. I assume the Baxter system is what DaVida uses. Anyone got any thoughts about the two different cyclers that might confirm or dispel my concerns of one or the other? My Neph is linked with a Fresenius unit, but we have both local to me, so I believe I can use either depending on what I want (and I will push for that if my fears are confirmed).
I also plan to try and stay dry during the day and just cycle at night. Is that usual with the cycler or do most PD'ers still carry out a manual exchange during the day - or is it really very dependent on your blood tests etc?
Thanks for any responses and help you can provide 8)
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Thanks for all the welcome replies to my first post. Having gotten my head around the whole idea of dialysis, I thought I had developed a plan going forward, but find mys elf changing my mind. I had planned on having a fistula placed in August and begin incenter dialysis and NxStage training in November, with starting home hemo in the new year if all went well. I figure I have time, since my kidneys are still functioning, if only at 10%.
Having watched some videos of both NXStage set up, Bill's excellent vids on his home hemo and others on PD manual and nightime cycler exchange, I find myself drawn towards PD now, so am reconsidering getting a catheter put in rather than a fistula, to begin with. Is there a similar delay between the catheter surgery and beginning to use it, or can I wait a bit longer before having the surgery (assuming my health and docs say that is OK, of course)? What is the typical recovery time following catheter surgery and starting PD?
I still cant get my head around manual exchange, so am thinking about night time cycler for that. I've read some horror stories about the Libery machine from Fresenius and seen good reviews of the Baxter home cycler. I assume the Baxter system is what DaVida uses. Anyone got any thoughts about the two different cyclers that might confirm or dispel my concerns of one or the other? My Neph is linked with a Fresenius unit, but we have both local to me, so I believe I can use either depending on what I want (and I will push for that if my fears are confirmed).
I also plan to try and stay dry during the day and just cycle at night. Is that usual with the cycler or do most PD'ers still carry out a manual exchange during the day - or is it really very dependent on your blood tests etc?
Thanks for any responses and help you can provide 8)
You may find that your nep wants you to stay filled during the day. That's what mine wanted and I was reluctant at first, but really I can't feel the difference between wet or dry unless I weigh myself. But the cycler handles this: a "day" fill is the last cycle in the morning and an "initial" drain of what I carried around all day is the first cycle before bed. I can do anything I'd regularly do while still "wet" including some demanding athletics and heavy exercise. So I wouldn't get stressed over that. But the point is: no manual exchanges at all, unless you want to. (I use a Baxter cycler.) A big HOWEVER though is as you said, it depends on how you react to PD and the progress of your labs.
As for the cath surgery, you will want about two weeks before starting your training...I started after 10 days. The 2 weeks of training is not full dialysis so it doesn't stress you very much. It also allows the PD nurse to monitor the exit site. So with that time frame, it would be a full month (at least) before you start using the cycler at home.
If your current neph is connected to Fresenius you may have to change nephs. That's what happened to me. Fortunately my new and old nephs were former partners and get along real well. So now I actually have 2 nephs and I like both of them!
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I had to wait 10 days after getting my catheter before I could use it. I have a Baxter cycler and I like it (as much as you can like dialysis).
Overnight each of my fills is 1500 mL but in the morning I only get 500 mL to carry during the day. You get used to it. However, I have seen posts on here from people who are dry during the day. Your PD nurse can discuss your options and amounts. And nothing is set in stone. You can try settings on the cycler and then have them adjusted.
Good luck. You can do it.
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Thanks for the replies.
I stopped in at the Da Vita center this morning and found that to be a whole lot more pleasant an experience than the visit to the Fresenius center - something about being treated as a person rather than just another dang kidney patient/number in line. Guess I'll be changing nephrologists in the next few weeks, since my current one is linked to Fresenius.
Having been to both and weighed the options, I've pretty much decided I'll go the PD cycler route, so thanks again for the responses.
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Rufin, PD is an excellent choice of modality! It's just what works best for you! My husband started out with CAPD and did it quite successfully! But eventually for other health reasons, he went CCPD using the old Newton IQ for many years without problems.
Now he is doing NxStage at home! And it has really been a GodSend! Either way, it is always good in your own enviroment (Home).
Best of Luck to you! Keep us posted!
lmunchkin :flower;
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rufin :
I've done both forms of dialysis (pd first, currently on hemo), so i got to know both forms advantages/disadvantages quite well.
advantages of pd : travelling ! if you like to travel, pd offers the best flexibility. My hospital uses baxter, so baxter would ship all the supplies wherever you're going, just gotta give them ample time to make arrangements. For traveling, i bought a folding IV pole (kinda pricey, $160), however, it was well worth it. It would fold down into something about a metre tall, and was easily portable. If you go on the cycler, it does allow you the freedom to do whatever during the day. If you do manual, try to arrange something with your work so you can do an exchange at work (i work at a university, so when i was on pd they allowed me to use an available room in the doctor's area).
disadvantages of pd : depending on your fill (i had 2L fills), you gut expands out, you do get used to it but you have to be very careful not to exert yourself too much (i had 2 hernias thanks to the pressure of the pd fluid). You diet won't be that great, you have to watch your potassium/phosphorous intake. Your sodium intake has to be next to nil. You need alot of room for the supplies.
advantages of hemo (mind you, i do my hemo at home, 6 days a week. I'm supposed to do it 6-8 hours during the night, but sometimes I say screw it and only do 2.5 hours (when i can)) : better diet. I can now enjoy grain products, milk, orange juice, and cola (all within reasonable amounts). I can also enjoy more fluid intake (2 L is the most). Since I do my treatment at nights, that leaves most of the day to do whatever.
disadvantages of hemo : people must come into your home to rewire electrcity (220 v) and water. Plus, your utility will jump in cost (hence my 2.5 hour runs). I use the Bellco Formula machine, and it is time consuming to setup and tear down. You also need alot of room for supplies.
i was lucky enough that for either dialysis treatments, it has always been at home.
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I would definitly choose DaVita over Fresensius if I bad a cboice. My home unit is Fresensius and you are right-you are basically just a number to be improved.
I have traveled recently to 3 different Davita centers and liked them and their rules much better. I am going PD so I don't care anymore what the people at the center are doing,
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I just have to say that my experience with my Fresenius clinic here in Springfield, MO has been nothing but exceptional. I've only been there for two weeks now, but so far so good.