How to organize

[Treeguy66]

I'm interested in how others organize your supplies and work stations. I have stage 4 kidney failure and whiel I do have a bit of time before I start at home dialysis I do want to plan and prep for the day. Id like to see ideas and photos, get tips on how others are organized, tables you use, systems etc.

Saw a post to avoid wire racks but they didn't say why??

My main goal is to do it once and not waste time or money, space etc. I would appreciate a few good ideas and plan to take bits and parts form a few and make my own work area.

[Bassetmommer NKF Ambassador]

HI Treeguy, I am at the same point in my journey so I will share what I did. I called the local home dialysis company and spoke with them. It is Fresenius. I am doing hemodialysis not PD. The first thing they did was hook me up with a patient advocate. He will be my go to person for now. I spent about 45 minutes with him watching videos and talking. The next step will be a home review. Someone will come out and look at where I think I am going to use it. They will review water, plumbing needs and it does not require any special electric set up. The machine they use is all in one. They explain the size and its not that big. He then showed me a picture of the month supplies and again, was doable. That is very different for PD.

The thing to start planning on is the type of dialysis you are going to do. And then what surgery you will need to get ready. PD is a tube and hemo is a fistula. The fistula needs to be done in advance of the use because it needs to heal and grow so that you can use it. I am scheduled for surgery in June, even though I am still at a GFR of 13 and doing just fine. I do not want to crash into dialysis and need a chest catheter.

Find out from your nephrologist who is the company they use. Fresenius has videos and on Youtube you can actually see someone using the systems.

Good for you to prepare. It helps to have the knowledge and fill in the fear with facts.

[Treeguy66 in reply to Bassetmommer]

Bassetmommer....Thanks for the info. Last week I had the vein mapping done for my fistula. Luckily they told me I have very good veins and they can do that later this year. I will look into the local places here and see what's going on and reach out to the company you used also. cant hurt to have 2 or 3 looks. I have also learned a lot watching YouTube vids.

We are now making room in our living room and also a middle bedroom. Living room is where I will do at home dialysis and middle room is more supplies. But I also know I need o have a few things out and ready, rotate things around.

[Bassetmommer NKF Ambassador in reply to Treeguy66]

Don't be surprised if they tell you your Nephrologist has to initiate the contact. My Neph had it in the notes, but I did it on my own, not waiting for her to do it. But we only have one company the Medical Center uses for home dialysis.

[Treeguy66 in reply to Bassetmommer]

My office signed me up for a 3 hour on line course called KIDNEY SMART and they sent me an e book I printed, like 75 pages of stuff....but not really anyone to come do an at home look and tell me what i should look at buying to prep and set up.

Like the hard plastic cart I saw at Lowes, its on wheels and 3 shelves its around $175 but a nice wire rack one same size is $100. Im not loaded and if the plastic one is better id buy it but if i can have the same set up for less id rather save the cash.

[Bassetmommer NKF Ambassador in reply to Treeguy66]

The other thing is that you need to talk with the company's financial person. Don't go out buying anything until you do and find out what they pay for. They will pay for durably equipment which includes the cart for the machine and maybe storage... not sure about the storage.

[Treeguy66 in reply to Bassetmommer]

Storage im pretty good on but good to know they might pay for a cart and other systems. This is why I am asking now to find out stuff.

[KidneyCoach NKF Ambassador in reply to Treeguy66]

The clinic provides body scale, bp cuff, thermometer, sharps container, gauze, tape, masks, gloves, syringes, fistula needle sets, blue pads, clamps, alcohol wipes, chair. Other items clinics MAY or NOT also provide antibacterial soap, paper towels, stethoscope, hand sanitizer, iPad (for flowsheets), centrifuge, blood tubes, shipping boxes (for drawing labs at home). I'm sure I missed a few things, sorry. We used a 3 drawer Starlite plastic storage unit on wheels for some supplies, later switched to a 3 shelf cart on wheels with baskets for various items easily accessible. We also use an over the door shoes container for any extra stuff needed on hand and quickly. All boxes of supplies we stored in a closet. We open Saline and store 12 bags close to machine. You will be trained on everything. Ask questions and more questions especially if something is unclear. They won't send you home until they and you feel ready.One thing I encourage all HHD users to invest in are emergency lights. We have them on the wall towards the ceiling. They plug in and will automatically turn on whenever the power goes out. Ours are situated to illuminate the chair and machine. Has always worked perfectly for us. We also have a "go to ER bag" in the car just for fistula...like gauze and tape (in case I spring a leak) antibacterial wipes etc. Wear a "save this arm" silicone bracelet and a medic alert type necklace or bracelet with some health info, allergies, dialysis patient etc. They do help.

Blessings

[Treeguy66 in reply to KidneyCoach]

You mention a "save this arm" silicone bracelet. When they did the vein mapping my Dr told me to not let anyone draw blood or do anything to my left arm at all. I bought a stethoscope online and have a bit of the other stuff saved up already. Had seen the over door shoe organizer on a Youtube show an I do like that idea.

On your 3 drawer carts may I ask the size of the drawers? Ive seen these with small pull outs ad then bigger ones and some that had like 10, a mix of small, med and large.

[KidneyCoach NKF Ambassador in reply to Treeguy66]

Small ones

B&w

[KidneyCoach NKF Ambassador in reply to Treeguy66]

Larger one

B&W

[KidneyCoach NKF Ambassador in reply to Treeguy66]

Pencil holder can be used for bloodlines.

Red pencil holder

[TDPowers in reply to Bassetmommer]

Why did you decide on hemodialysis instead of PD at home. Just curious because I thought PD was better than HD at home Thank you

[Treeguy66 in reply to TDPowers]

I do not qualify for PD as I also have an ostomy bag due to ulcerative colitis turning to crones.

[TDPowers in reply to Treeguy66]

Thank you

[Bassetmommer NKF Ambassador in reply to TDPowers]

3 reasons...1. the weight you put on with the PD dialysate fluid CAN be awful. It is glucose based and I am a person who gains weight looking at pictures of food. I cannot lose weight now, no matter what I do and to go on something that will not only cause weight gain but bring back my diabetes is stupid. My current weight is also keeping me from transplant by 22 pounds. Talk about frustrating. 2. The physical component of carrying around fluid in my already large gut is a total turn off to me. It the biggest area on me and to add to that ...well just nope. 3. I cannot swim in the current channel and take my beloved water aerobic class. You can swim with PD, but not in a high pressure current channel.

Although my Neph said I could do either, she too felt I would be more successful with HHD. This decision has been a well thought out choice.

[Darlenia in reply to Bassetmommer]

I think your choice is good for you, particularly your last point re swimming. We are all so different. My hubby didn't carry fluid around when he was awake while on PD since he used a cycler overnight. He also managed to get off all diabetes meds while on PD through very tight carb and sugar control. However, some do see elevated diabetes while on PD. Unfortunately, my hubby's transplant immunosuppressants did it bring it back. Keep us posted on how you do on HHD. If the transplant fails, my hubby will likely do HD in-center. Think we're just gonna be too tired at that point to do anything ourselves. It's nice there are choices. And who knows, maybe there will be some technology upgrades in the near future too. Hope springs eternal.

[TDPowers in reply to Bassetmommer]

Thank you I didn’t know PD caused weight gain and I didn’t know you could do HD at home thank you so much for your information everything is so confusing

[TDPowers in reply to Bassetmommer]

I didn’t know you could swim with a PD catherter Thank you for the info If you do HD at home do you do it everyday and for how many hours Thanks again

[Bassetmommer NKF Ambassador in reply to TDPowers]

This is the thing and why this will work best for me. Say the prescription the Neph writes is 10 to 12 hours a week. Pretty normal. In center, that would be 4 hours three times a week. Also normal. At home, it can be 1.5 to 2 hours six times a week and I can pick the time of day I want. So in the morning, while I am on the computer for a couple of hours, I can do it easily. They say that is the optimal for longevity because it does not tax the body so much. Pulling so much off in center is what is hard on the body.

I am not sure right now, but you can also do it longer while sleeping.

[TDPowers in reply to Bassetmommer]

Thank you so much I’m trying to get all the information I can.

[Bassetmommer NKF Ambassador in reply to TDPowers]

Yup, we all are trying to learn.

[TDPowers in reply to Bassetmommer]

yes and we appreciate all the information you give us on kidney disease Thanks again

[RhenDutchess123]

A wire cart may be harder to sanitize than a flat solid surface...you can buy solid mats to cover the wire,, but in the long run it would probably cost you more. Just a thought, but either would most likely be fine

[Treeguy66 in reply to RhenDutchess123]

Good to know and thanks!

[Porter20]

When I did pd at home I set up a chair. I watched tv while doing exchanges. I always kept 3-4 days worth of supplies within reach.

I found exchanges quick & easy with the exception of warning bags. That step is so important! It slows down everything and gets you off schedule. It hurts to do an exchange with room temperature bags.

Make sure to get a heating pad that does not cut off automatically!!

[Darlenia]

Your nephrologist is affiliated/charged with certain dialysis centers. So, ask your nephrologist which one(s) he is charged with and ask for an orientation visit. (Our nephrologist arranged for my hubby see the dietician there at the same time.) Please note that not all centers offer all forms of dialysis. Hopefully, the one your nephrologist sees and send you to is close to your home. At the center, you'll get the chance to check out the type/size of PD/HD machines, the accompanying carts, etc. YouTube also has many videos of people doing dialysis in their homes that you can review as well. Indeed, it's very important to know which form of dialysis you prefer - it looks like HHD is your choice. In our case, we were interested in a kidney transplant, so PD was recommended by his nephrologist and transplant center. (My husband is a diabetic, HD involves blood which can encourage arteriosclerosis, particularly in diabetics.) My hubby's kidneys collapsed overnight so he wound up on dialysis unexpectedly - first in center HD then PD. So we were caught by total surprise - no supplies or equipment in the house at all. We found that dialysis training, no matter the type chosen, is several days long (often weeks) long so there is plenty of time to visualize your layout, collect carts, etc. Interesting, we didn't need to purchase much at all. We only purchased a collapsible table/chair for setting up and a couple of 4-drawer wheeled plastic storage carts from Wal-Mart that we concealed in our walk-in closet. We placed our machine on our nightstand that also had storage inside. If dialysis is going to happen in a bedroom, some use the space under the bed. Others modify closets or bring in a free standing one. We also used our garage for some supplies. Our recommendation is to not get ahead of yourself too much, It's easy to overdo. Simply observe and see where your findings (and house layout) lead you. You've got this!

[Treeguy66 in reply to Darlenia]

Great info! I didnt know about arteriosclerosis and I have type 2 diabetes myself. But i also have an ostomy gag due to ulcerative colitis turning to crones so i do not qualify for PD I have to do the hemo.

[Darlenia in reply to Treeguy66]

I think, in your case, HHD is the perfect treatment choice for you. It clears the toxins well from your blood, and it's quite gentle on your body since dialysis is done frequently, often daily, so it's better than doing it in a facility only three times a week. (Sadly, I suspect, if my hubby's transplant fails, we'll wind up doing in-center HD because we'll be just be too tired at that point to do anything on our own.) Different choices, different circumstances - we're all different. Sending positive vibes that things go smoothly and well for you!

[Bassetmommer NKF Ambassador in reply to Treeguy66]

That is old school. The issue is occurs when the blood develops calcium deposits caused by high phosphorous levels. Medications can help prevent that.

"The association between CKD on hemodialysis and accelerated atherosclerosis was described >40 years ago. However, more recently, it has been suggested that the increase in atherosclerosis risk is actually observed in early CKD stages, remaining stable thereafter. "

ahajournals.org/doi/full/10....