Are there any side effects from PD?

[Quita55]

Hi everyone and Happy New Year! Does PD make you go to the bathroom? And for those who are doing PD how to do you make your medical appointments when doing your treatment? Do you use zoom appointments? Can I take PD with me to my in person appointment? Thank you for your time and support.

[RhenDutchess123]

Depends on what type of PD you are doing. I do nightime on a Cycler while I sleep. If you are doing manual, that usually takes place in the day...If you are doing daytime manual and have an appointment you can just plan that during your dwell time..(they are usually between 2 and 4 hours depending on your subscription)...My Nephologist will do Zoom calls, but you will need to do in person once a month for lab work and iron injections if they are prescribed

[RonZone in reply to RhenDutchess123]

Hey, Rhen, what Cycler do you use? How long have you been using it and what has your experience been with it. Lay it down in real fashion for us.

[RhenDutchess123 in reply to RonZone]

I use the Amia made by Baxter...and I have had great success..been using it for about 11 months...lots of features to help stop mistakes. It is very easy to learn and use. As with all Cyclers, it has alarms if there is a problem, but most are positional, meaning that you may be laying on tubing or have a kink, but after awhile you learn what position to sleep in. Kind of like how a car teaches you to drive it..lol. I feel so much better on Dialysis than I have for years..and I simply hook up at bedtime, sleep through my 8 hour treatment ( except for a few alarms once in a while)... unhook in the morning and the rest of the day is mine

[RonZone in reply to RhenDutchess123]

That's the machine I'm looking at. So based on what you are saying, the alarms are not all consuming, keeping you awake every night. Getting it to stay quiet is just learning how to turn and not turn at night, right? You make me feel better that I can learn to do that. I had this awful thought in my mind of (me and my wife) being wakened every night three or four times for the years I'll be on this starting March/April if my request for this machine is granted.

[RonZone in reply to RhenDutchess123]

So about how much time does it take to get all connected up to the machine at night. And how much time should I allow for disconnect in the morning. Just curious how much my schedule will be affected by this. I know in the beginning I will be slow as molasses until I get a system down, just wondering how much time it takes you 11 months in.

[RonZone]

I'll be starting PD in March I think, so like you Quita55, I've got like a list of questions to ask the PD folks during my "training" that I'm supposed to get after I have the tube "installed" (I like to think of it as extra plumbing), some of what you are asking are on my list as well. Let's see what others post on here in response to your questions. RhenDuthess123 replied to the one about appointments in good fashion. Again, I think during "training" that they give they'll sort out everything that has to do with appointments based on your PD schedule. I also plan to use a Cycler eventually that will do the deed while I sleep. If you don't know much about those and plan to use that method, there are several posts that talks about how all that works on here. I'll see if I can find one or two.

[RhenDutchess123 in reply to RonZone]

Position is very important...they usually like to have your exit site on the side you sleep on, that helps alot to keep it unkinked...I also think that alot of problems people have with alarms is from improper use of Heparin...you will learn at your class how important it is to keep the tubing unclogged so it can flow well...especially on the drain cycle...Our peritoneal membrane makes "fibrin"...it is a thick build up of protien and needs to be kept at a minimum...By injecting Heparin into the Dialysis Solution , it thins it so it doesnt clog..When I first started I needed to add Heparin to my Solutions about every night...but now I only need it maybe 1 or twice a month...It is also very important to keep your exit tubing taped to your body...this also helps with the position while you sleep..they will offer you a belt to keep your tubing In, but that dang thing just moved constantly around my waist...I just keep my tubing taped to my side and threw the belt away... The most useful thing i can tell you is to do the steps your RN will teach you...so VERY important..this can make the difference between a successful experience with PD or a disaster...So portant to learn clean techniques because infection is the main reason PD fails...if you think its clean...clean it again...lol

It is also beneficial to have a Spouse or Friend to attend your classes with you..My Husband came with me and it was so much easier after you begin to do it at home to have someone else understand it...I was foggy throughout alot of my Training and having my Husband help me to remember the steps was valuable....

You asked how long it took to set up my cycler....about 20 minutes...and about 20 minutes in the morning to unhook and remotely send my Treament results to my PD Nurse....I spend longer than that cleaning up my kitchen...Best of luck to you...Hope I gave you some insight that you can use..You will feel so much better !!

[RonZone in reply to RhenDutchess123]

Dang good info. Had not heard anyone mention "fibrin" or Heparin before this. (Or if they did, it didn't stick in my thick head). I hear some folks say the tape causes issues with their skin, that doesn't sound like it was a problem for you to use tape to keep the tube in place. Guess I'll find out how I respond to the tape when the time comes. I think I'll ask if I can take a recorder and record the training sessions, so I can go back and listen to them again later (sounds like I'll have some time on my hands during the "dwell" time). Cause you are correct, my memory ain't as photographic as it used to be. More like a fuzzy polaroid So having a recording might be very helpful so i can do as you say and follow the instructions to a "T". I do want to have a successful event at this and not have to find out that pain or discomfort is self induced cause I missed something I was supposed to do. So 20 minutes, yeah that ain't bad. I'll just skip cleaning the kitchen! Ha!

Yeah, I'm hoping to feel a lot better once I start, if I can get the PD thing down fairly quickly and efficiently so it's not too much of an event every day. I have heard that guys have an extra nerve in their abdomen that increases their sensitivity to drain pain, either that or there's just a bunch of crybaby dudes out there. Again. I guess I'll find out if I'm joining the crybaby group or not once that draining starts!

Thanks for all this info. You are the best. I'll ping you if I think of another question. Which I'm sure I will have more before as I think about this more.

[RhenDutchess123 in reply to RonZone]

Tape did bother me ...so my Nurse gave me Blue PaperTape...I highly suggest this...no problem at all...As far as setting up the machine....the Amia screen tells you on each screen what to do plus they give you a booklet...Your PD Nurse will make sure you understand enough to take it home and use it...The Drain Pain is real, if you are sensitive to it they can set your Amia up on what they call Tidal Wave, it is gentler..The only one I really feel is the first drain of the night...they call that the Initial Drain, but it only lasts about a minute or so and I usually try to occupy myself with TV...or a game on my phone...or reading...Most nights I dont even feel it..The main thing you need to pay attention to is clean technique when setting up Cycler and cleaning exit site....Yes...by all means, message me if I can give you any tips

I might also mention it takes ALOT of boxes...they deliver about 20 or 25 boxes each month...they are about 18 x 20 each... Plus there are all the supplies...so be thinking about a space on your home that you want to keep it...We had a dining room that we never really used, so my husband built some beautiful cupboards to tuck all my boxes and stuff in...these boxes are heavy and you will be restricted to under 20 pds...so you might want to get a small dolly to help you out

[RonZone in reply to RhenDutchess123]

Blue paper tape, got it on my request list. Tidal wave. DEFINETELY be looking into that! Oh my gosh, no one said anything about that many boxes. Not sure where I’ll put them if I can’t store them in the garage. That I’ll have to figure out. May be time to give some of my stuff to Goodwill and and free up some closet space or something. My 94 year old dad lives with me so my spare bedroom is occupied at the moment. I may have to think about a climate controlled storage unit while my dad is still with me (not for my dad, for the boxes😄

[RhenDutchess123 in reply to RonZone]

Sometimes...if you have limited space ...they may okay to bring g twice a month..but it depends how many are on the list...are you In the United States ?

[RonZone in reply to RhenDutchess123]

yep, I'm in Alabama

[RhenDutchess123 in reply to RonZone]

That's good...I am in Wyoming...just dont know how PD works in other Countrys ...but think its consistant in the States

[RonZone in reply to RonZone]

Oh I wanted to share this with you that someone else mentioned to me: Carriage House Apparel Catheter Pocket. See video of men's t-shirts (they have shirts for ladies as well) and shower caddy on website:Carriagehouse-enterprises.com

[RhenDutchess123 in reply to RonZone]

I tried a pocket catheter but it didnt work that well for me...but may work for you...everyone is different, but thank you for the Info

[RonZone in reply to RhenDutchess123]

Oh, and will definitely order a dolly.

[RonZone in reply to RhenDutchess123]

Oh, you said boxes are 18 x 20. What is the third dimension? Width, length, height?

[RhenDutchess123 in reply to RonZone]

20"long...18" wide...about 12"high

[RonZone in reply to RhenDutchess123]

So thirty boxes at that size would be a space 6 ft x 8ft. Dang. And then there's boxes for the tubing and stuff, and there would be some "overlap" I assume (boxes from the previous shipment not used yet). So the overlap could easily add 2 more feet tall to make 6 ft x 10 ft, plus tubing boxes, then need room for other supplies (masks, cleaning supplies etc). Wow.

I do have a storage room in the garage that actually joins the house. Maybe I could clean all my tools and stuff out of that, put in a heating/AC duct/vent, bug proof the room and store all this in there. I'll have to do some measuring to see if it would all fit, or most of it anyway, Maybe keep a weeks worth in a cabinet in the house and resupply that from this storage room. Not sure where I'll put all my tools and stuff but I guess that might be where all this has to go while my dad is still with me.

I can see why some people opt for going to a center to do all this when storage is an issue.

[RonZone in reply to RhenDutchess123]

I REALLY appreciate all this info! You should start a major post about this topic on the site.

[raregiraffe21 in reply to RhenDutchess123]

I got the blue paper tape today. I abhor all medical tape & had trouble with the regular white paper tape from the hospital, but I'm willing to try again. Do you make the 'anchor' and then loop the rest of your tubing?

What about the very end - do you tape it down?

Do you end up with any tape residue on your catheter?

I've been using a belt that I purchased online, but it's been pulling & hurting a lot lately.

[RhenDutchess123 in reply to raregiraffe21]

My exit site comes out on my left side...I make a u-turn and tape it ...then I run the rest of my tubing across my belly ..at the end I turn my transit set pointing back to my left and tape it...You dont need to use long of pieces of tape, just enough to hold it , make sure you dont have lotion on..I keep my "u-turn" taped down even during my dialysis...I worry about it getting pulled or tugged..I only remove the tape from my transit set... but if you are sensitive to it you may need to take it off during times you are not active... although I change all my tape everyday when I clean my exit site and replace my bandage...

..and I never have residue from the blue tape...Hope this makes sense...let me know if it works better for you

[RonZone in reply to RhenDutchess123]

Hey, does this look like the stuff you use? amazon.com/Nexcare-Sensitiv...

[RhenDutchess123 in reply to RonZone]

It looks similar but I believe mine comes from McKesson Medical Supplies...Dont be too quick to start buying supplies, because if your Kidney Clinic is like mine, they will keep you supplied in all the things you will need...like gauze, bandages, syringes, Qtips....tapes....etc...Just tell your PD Nurse that trains you that you are sensitive to adhesives

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[DorisL_NKF]

If I had an appointment I would time my sessions (exchanges) so I could go to my appointment. If I was going to busy during a scheduled session, I would just do a session before the appointment, even if it's earlier than I would normally do it. If it's not convenient to do it at home, I have at times done an exchange in my car. I just made sure everything was sterile and I had all my supplies. In fact, I usually kept supplies in my car just in case I was stuck somewhere and couldn't get home. I made it work and never had an infection. I hope that answers your question.

[alport45]

PD has not changed how much or when I have to use the bathroom. I still have kidney function so I still have to get up about 3 times a night. As for doctor's appointments, the other posters have answered well. You will have plenty of time between your exchanges to fit in appointments and it is not necessary to bring any part of your treatment with you. My My PD nurse makes sure I have an appointment when my doctor is making his rounds at the dialysis center once a month. You might ask your nephrologist about possible side effects. He/she would know them and the likelihood of each Good luck.

[Darlenia]

I was a caregiver to my hubby who was on PD until he received a kidney transplant this past June. The Amia cyclers are state of the art and can be difficult to get - they generally go to those who have sight and/or hearing impairments. Most get the heavier and larger HomeChoice or something similar. So you may want to tuck this in mind as you make your request. (Our nephrologist said my hubby would get a transplant before an Amia and he was right.) Looking back, I think we could have made a better case for it. As for placing the cath in your body, please ask your PD nurse at the dialysis center for a referral to the best surgeon. You don't want it located where it hinders your movement, is hard to clean, etc. Some surgeons are better than others. Our surgeon had my hubby assume various positions before marking the spot where it would go. The PD nurse deals with the outcomes from various surgeons. As for training, we were briefly trained on the manual process and then we were quickly moved to cycler training. You don't need to worry about not remembering each and every step as there are many videos on youtube and other sites laying them out. As for the boxes, you will need indeed need a space to store them. The delivery person will stack them exactly where you want them, so that's nice. There are also many videos about tht on youtube and other sites. With social media, you're never alone. Here's a video you may find interesting to view which shows supplies, setup, and more: youtube.com/watch?v=OrYewHH...(Not working as expected?)