Periodontal Dialysis supplies

[RonZone]

Hey, does anyone have a nice complete "list" of supplies that are needed for PD that are NOT supplied by the dialysis clinic (medicare). I'd like to start collecting a few things between now and when I start PD. If you have a link to the source that would be awesome. Thanks in advance!

[6V53]

I do not, but I am interested in this topic as well. I am not on Dialysis yet but getting closer.

I did remodel my house so that I have a bathroom next to my bed in my bedroom.

[RonZone in reply to 6V53]

Hey, see Darlenia's response below. That's good news that the center provides all that stuff.

[Darlenia]

Hi RonZone. My husband was on Peritoneal Dialysis for a period of time before his transplant this past June. The dialysis center will supply everything your need except paper towels. If you chose to use a cycler (one can do either manuals or use a cycler), you'll need a nightstand or something similar to place it on. You'll also need a small table or desk to arrange your supplies, to record vitals, and to "hook up". And then you'll need some dresser drawers (or purchase a storage unit - some prefer a rolling cart) to store antiseptics, masks, pads, etc. For manuals, they'll give you a tall pole to hang your bag which you can simply leave in your room or store in a closet (it breaks down). When you go in for training, simply check out the room you're in and you'll see how it's set up there. Since training is usually done over a two week period of time, you'll have sufficient time to figure out how you want to arrange your very own space. Some of us spend lots of money on it, others of us don't. We were frugal about it - we used a small folding table from a box store and plastic bins. That worked well for us. One very important thing to keep in mind is that you will receive many, many boxes of supplies - around 30 or more initially - which you'll be able to adjust downward as you figure out specifics. We used our garage to store them. Others scoot their solutions under beds, into closets, along a wall, etc. The delivery people will usually place your supplies in a place designated by you. Sometimes, one can also schedule deliveries biweekly instead of monthly to cut down on size. Also, here's a tip - one of our most useful and efficient things we did was to run our drain line from our cycler into our commode. It slips under the rim so one can continue to use the commode. No need to carry and empty heavy drain bags! The center usually give you one cord; if it's too short, ask for an extension. They will balk at that, but be persistent, eventually they'll authorize the extra line for you. AND one more, final tip! Get the latest and greatest cycler you can (Amia or something similar) if you prefer using a cycler. We got an ancient cycler w/o knowing better. It was heavy! And archaic! Not very interactive at all. And difficult to haul around for travel. So do what you can to get a smaller "smart" cycler. We were given the excuse that only those with impairments (sight, hearing, etc.) would qualify, but I know of others who did get one w/o those impairments. I hope this gives you a little bit of direction and an idea what to expect. My hubby's kidney failure came on fast, wish we had the time to ask questions like you have done here.

[RonZone in reply to Darlenia]

Hey, thanks for all this info. I didn't realize that the dialysis center would provide things like antiseptic wipes, gloves, masks and all that kind of stuff. I was preparing to have to out-of-pocket all of that. And thanks for the tips on requesting a "smart" cycler. I also didn't know that you could store the solution boxes in your garage. Do they not require a "room temp" environment? My garage is not heated or air conditioned. Can the tubing boxes also be stored in a non-temperature controlled environment like my garage? That would be great if I could store them in the garage instead of having to store them in the house. And that would be good to get twice a month deliveries instead of once a month to cut down on how many boxes need to be stored, I'll definitely ask about that. Sure do appreciate your response.

[Darlenia in reply to RonZone]

Happy to fill you in - always wise to ask questions and it doesn't cost you anything! You can store solutions and so on in your garage. We live in Virginia where you can get freezing temps and very high temps, but no one said we couldn't do that. (Our PD nurse came to our house to help set us up and get us started.) I do know that our garage, also not heated or air conditioned, sheltered the solutions enough so they didn't freeze. We kept everything in our garage except for the essentials, and simply made a daily run from the garage to our bedroom with the items needed. We were okay with monthly deliveries since it's protocol that one needs to be at home when deliveries are made. We got tired of that fast, so we quietly gave our delivery guy our contact information and the codes to our garage. A win-win for all of us. You will definitely get lots and lots of supplies! And every month you order more of whatever you need. Even though my hubby received a transplant, we're still using the masks and antiseptics they gave us last year!

[RonZone in reply to Darlenia]

This is very good news that you don't have to keep those boxes of solution and other supplies in an environmentally controlled (heated/air conditioned) area. That will help me a lot. I work from home (have since the beginning of Covid) so it's not a problem being here for deliveries and opening the garage door. Now to clean out the garage to make space for the supplies!

[KidneyCoach NKF Ambassador]

I will add the clinic will provide bp cuff, scale, I. V. pole, thermometer, heating pad, gloves, masks, alcohol wipes etc. The fluids in boxes should be kept at certain Temps and will give you parameters ON the boxes, i.e. store at 45° to 78° degrees for reference. Some items may come from clinic while others will come by courier. Things like scale will only be given once, so if it breaks, you'll need to replace on your own.Blessings

[Skeptix in reply to KidneyCoach]

Sounds like a barrel of laughs..

[RonZone in reply to KidneyCoach]

Hey, thanks for all this info. I need to figure out how to get my garage set up with heat/ac so it stays within those parameters. Keeping it above 45° shouldn't be a problem. Small heater could even do that. But keeping it below 78° in the Summer in Alabama could definitely be an issue. Will have to research what to do about that issue so I don't have to store all those boxes in my bedroom. So medicare only gives some stuff once. Not surprised, but hopefully they're good enough quality to last several years.

[KidneyCoach NKF Ambassador in reply to RonZone]

Those Temps were just examples. You'll need to talk to your training nurse for the exact temp ranges.

[RonZone in reply to KidneyCoach]

Oh ok, I thought you were reading it from a box or something. Thanks for letting me know. Maybe someone on here actually has a box with the temps on it.

[horsie63 in reply to KidneyCoach]

Has anyone who lives in a rural area done PD? I live on a farm and my neph is an hour away and the dialysis clinic there does the PD, the Davita one in the town 30 min away only does on site hemo. I live in a small house basically a one bedroom with attached garage area that is climate controlled.

[RonZone in reply to horsie63]

Hi, I got your note. I'm sure there are folks who do PD on this site who live several miles away from the dialysis clinic. Fortunately for me, the clinic I will be associated with is only 5 miles away, though for the cycler I want to use, the training for it is 60 miles away, so not sure if I will need to go to that location sometimes for support not offered by my local clinic or not. Guess I'll find out, then i would be in the same boat as you. But since I'll be going PD at home, once I'm trained on manual and on the cycler, I will only have to go to the clinic like once a month to see the neph. I assume your situation will be similar if on PD. So hopefully that won't be too bad if we have to drive an hour to get there once a month. I wish my garage was climate controlled. I'm looking into options for that. How did you seal around the garage door so that it doesn't leak air like a sieve? I've actually thought about buying or building a storage shed type thing inside my garage that would be more airtight. Need to make a decision soon.

[horsie63 in reply to RonZone]

When we had the house built we had them seal the doors. We don't open them and basically since the living area is just a one bedroom apartment type set up the "garage" area is where our computers are, the washer/dryer, storage and the work out area with my treadmill and rower.

[RonZone in reply to horsie63]

Ahh, ok, so you don't have garage doors to deal with. That was smart.

[Darlenia in reply to RonZone]

In Virginia, our temps can vary from lows in the 20s to highs near (sometimes over) the 100s. We stacked our boxes in our garage alongside the shared wall to our family room to absorb "radiant" heat or air conditioning coming from the house. Our nurse was fine with it. And the solutions performed fine for my hubby. His numbers throughout the year were good, no matter the season. I would add that there were a few times we thought about running a space heater in there to keep the solutions from freezing, but freezing never happened. Also, the location ensured no sunlight landed on the boxes to superheat them. In your case of high heat, you may want to keep a portable air conditioner on hand so items don't melt, burst, etc. We weren't worried much about efficacy of the solutions - they're pretty stable (dextrose, etc.) in our opinion. We just took it week by week, not stressing, deciding to take action only if needed. Boxes are moveable. Interestingly, the trucks bringing over the supplies weren't temperature controlled trucks. And our nurse, too, drove around with solutions in the trunk of her car in all types of weather. Travelers also take their solutions everywhere - in all kinds of weather. So keeping things in the garage is fine in the rather temperate mid-Atlantic. This exchange has made me rather curious, though, about your area. The US is quite complex as far as climate is concerned. Although we intuitively did what we thought was fine in a reasoned way, you might want to call your PD nurse or the company (in our case Baxter) that delivers the supplies in your region and ask them where people are storing their solutions and their set ups.

[RonZone in reply to Darlenia]

Darlenia, I definitely plan to talk to your set up nurse when the time comes for the "home inspection" that they said they would do once it's time for my PD catheter surgery. I got a feeling calling Baxter would get me some sort of "legal" rather than practical answer, but it's worth a try. I'll see what they say. As I type this. I am wondering if I could get some sort of "thermal" curtain to hang in my garage, floor to ceiling, that would keep that "radiant heat and AC" from the back wall of the garage which is the shared wall with the house. Something to research, thanks for sparking my thought processes!

[RhenDutchess123]

My Clinic supplies me with everything i need...except for Hand Soap and Hand Santitizer...( which they may...just never asked)...My Nurses load me up every month when I go for my Labwork..I was also told to not keep solutions in Garage..but if you can find a way to keep them from getting to cold or hot...which destroys the efficency...might be okay...and make sure no Mice get into it...I thought about building a "room" in my garage that I could keep temperature friendly...but decided to use a small dining room that we did not use much...Husband built nice cabinets to store it all away..works great

[RonZone in reply to RhenDutchess123]

You know, building a "room" in the garage isn't a bad idea and might be the way for me to go. I could put a small window air conditioner in there and run a drain out under the garage door. I will definitely consider this option. Thanks!

[Darlenia in reply to RhenDutchess123]

You may want to add the hand sanitizer and soap to your ordering list. It's a higher quality sanitizer and soap than most over-the-counter products; i.e. hospital quality. Our PD nurse highly recommended them to keep germs away. Our company, Baxter, supplied them to us at no out-of-pocket cost. Just a suggestion.

[RhenDutchess123 in reply to Darlenia]

Good to know...never thought of that...I have just always purchased Handwash and Sanitizer...years before dialysis..I will ask them...thanks

[RhenDutchess123]

Lol...that would be cool....My Dad was a Carpenter...so when we didnt have what we needed....we just built it...

If you have enough lot room., you could even build a " lean to" from your garage .. as long as you can control the temperatures....But I do believe a Room in a Room would be less money

[RonZone in reply to RhenDutchess123]

Well I'm not a carpenter, but I could probably throw up a basic frame covered with some kind of wall board that wouldn't be totally ugly and then add some shelves. Actually my garage might be big enough to just buy one of those outdoor storage sheds that you put together and build it inside the garage Would be funky looking, but might work. Get one that had a window where the air conditioner could be positioned. And add a heater for winter. Lots of ideas in my head right now... and it's your fault Ha!

[RhenDutchess123]

I found that I did not want shelves in my cabinents...these boxes stack nicely...and they are heavy...would take some massive shelving...love the shed idea !!...good thinking

[RonZone in reply to RhenDutchess123]

so no shelves required. Even better. Thanks for that info. This is sounding doable.

[RhenDutchess123]

Mitsubishi makes an air cooler and heater in one unit...thermostatical controlled...cost was around $900...but got a $400 rebate...My Son-in-law put one in his garage (Man Cave with a Pool Table)....works great...We live in the frozen tundra of Wyoming....Then you wouldnt need a Room In a Room...plus your friend would all be jealous of your garage on a hot afternoon..

Not sure how you are feeling...but I dont know if I could have done "construction"...pre-dialysis...may be easier on yourself

[RonZone in reply to RhenDutchess123]

Hey, I'll definitely look into that, only I have no window in the garage, so I would have to cut a hole in the side of the house and it would take more energy to heat the whole double car garage with 14 foot ceilings. Will have to think about that for a bit. Will definitely look into that Mitsubishi air cooler and heater in one for whatever I decide to do. Great info!

[RonZone]

Ok, replying to myself here. I found this info on this page:accessdata.fda.gov/drugsatf...

Freezing of solution may occur at temperatures below 0°C (32°F). Allow to thaw naturally in ambient conditions and thoroughly mix contents by shaking.

Exposure of pharmaceutical products to heat should be minimized. Avoid excessive heat. It is recommended the product be stored at room temperature (25°C/77°F): brief exposure up to 40°C (104°F) does not adversely affect the product.

So guess I need to air condition my garage closet, or as noted to RhanDutchess123, build or buy and set up a small storage building in my garage and install a small window or other type heating/ac unit if I want to keep the boxes out of my house. Decisions, decisions. Clutter the house with boxes, or put my car outside and replace it with boxes. Sure wish they would hurry up and get that kool-aid version that you mix with regular tap water perfected. Probably won't be while I need it, but hopefully others will be able to in years to come.

[RhenDutchess123]

Lol...its a process....I store all my solutions in alot smaller space than I thought it would take...I have 2 cabinets 7' x 2 1/2'...my boxes are stacked 3 high ..around 36 inches ..(I could stack higher but dont want to cover the window)...I have 4 12" x12" baskets to keep my supplies.( gloves...gauze..bandaids...cleaners..etc)..I keep my cycler on a cart so I can load up what I need for the night and roll it to my bed....

When we got all my solutions and supplies delivered the first time...we laid it all out in the room...and built cabinets that covered it all...we then built removable doors...we built them it of 2x4's and covered it with bead board ...painted them...most people think they are just credenzas that hold dishes..When Baxter delivers...we remove the doors and they load it up and then we put the doors back...I dont know why but I feel better not looking at all of it...

[RonZone in reply to RhenDutchess123]

For some reason, I'm imagining this stuff taking over my whole house You guys are very creative. What is "bead board"?

[RhenDutchess123]

Kind of like a sheet of paneling only with grooves about 2 " apart all the way across

[RonZone in reply to RhenDutchess123]

Ahh, gotcha. I'll look into it. Thanks!

[Dora86]

This is my set up. I use a catering trolley for my cycler and bags. I have a side table to help me set up and put hibi liquid, towels,mini caps and connection shields. I have a rubbish bin and also I have washing up bowl just in case of any leaks. Most of it came from amazon. I didn't spend much.

This is my cycler set up