how to Prepare My House for Dialysis

Kidney and urinary tract
1

As I have mentioned in an earlier post, I am a single person who lives alone. My nephrologist has begun discussing dialysis options with me. He says I'm a good candidate for PD dialysis which o would be able to do at home independently.

I've begun reading about PD dialysis. It looks as though it requires considerable storage space. (I live in a modest, 2 bedroom condominium with an attached garage.) it occurs to me that it might be beneficial for me to begin preparing my home for dialysis.

With that idea in mind, what might I do to prepare my home for dialysis? I'm considering pulling my carpet out and replacing it with luxury vinyl plank flooring. That would certainly be easier to clean than carpet. I plan to convert my spare bedroom into the dialysis room. Would shelving of some sort be helpful?

Marj

2

Hello, i am in a similar position and would like to know answers to these questions too.  Would be very interested to find out how you deal with everything.

3

Hi,

You will need a large unit in your room next to your bed.  The unit has to be higher than your bed to avoid issues.  I kept all my supplies outside in a garage but brought a weeks supplies in every Sunday ready for the next week.  I kept the bags of fluid under the unit (it was like a desk with drawers and shelves) and the cassettes and attachments for the machine in the drawers.  I had carpet in my bedroom and put down a towel there is not that much mess unless a fluid bag splits (this only happened twice in two years to me, you just learn to run fast to the bathroom) if you have a bathroom near you can put the drain pipe directly into the toilet I had the special drain bags just remember to close the plug! if you forget you will only forget once! thats it nothing more to it. 

4

If I can keep the supplies in my garage I've got not problem, but I live in an region that experiences pretty extreme heat changes. That's why most don't seem to store the supplies in garages here.

I'm glad to hear that it may not be necessary to pull out my carpeting though🐶 My spare bedroom isn't large but it should be large enough for 30 supply boxes. It's pretty empty right now. I just have an elliptical machine in it that I use for daily exercise and a bookcase, chair and ottoman that I use when working from home.

I've also got a fairly good sized spare closet in my master bedroom. I think if I have the PD cycles on a rolling cart I could roll it in and out of the closet on a daily basis. I would also be able to empty the drained fluid directly into either the toilet or my bathtub as my master bathroom is close to my bed. So I may be able to store the machine cart with cycles in my bedroom closet. If not I could perhaps store it in the spare bedroom and roll it in and out of my bedroom for use each night.

Anyway, I've got some ideas regarding how I can make this work in my modest abode. Fortunately I'm not a person who has lots of stuff.

Again, thanks for sharing with us, Helen🐶

Marj

5

You will find a way that works for you and suits your lifestyle.  Sadly my house is full of people and their things but we still managed to make it work. For one cycle I had two 5 litre bags of fluid and a 2.5lt end fill to start but that was discontinued as I was alergic to the fluid so had to have another type, a drain bag which is 10litre, a cassette for the machine and some end caps which are tiny (I had a baxter machine, there are two types but they do baxter in the US as my support team were there, very nice too).  As you go along you can re organise as you become more confident and as you have been doing it a bit its like driving a car or brushing your teeth its just a scary thought to start as its the unknown but I promise its nowhere near as bad as you think and it doesn't hurt.  I have to tell you about possible drain pain I had it for three months before it settled I am only skinny so the catheter kept getting stuck to my inards the machine can be adjusted to stop this though so fear not  

6

Helen,

Thank you for sharing more with me. I, too, expect to use a Baxter cycler. I'm definitely a little anxious about all of this but am pleased that I can do this independently--in my own home. I certainly want to keep working and hope to be able to keep exercising and doing some traveling.

I'm fortunate in that I'm a university professor. I teach graduate courses in an online special education program. (Most graduate special education programs have been online for 10-15 years. So I get to work from home a lot.) I work totally from home during the summer term.

Consequently, my nephrologist and I believe we can make this transition to PD dialysis during a summer term. The catheter surgery could occur over a spring break. He then likes to give the catheter insert site at least 6 weeks to heal, sometimes a little longer.

Anyway, because I'm already experiencing pretty severe anemia (hemoglobin 5.6 without treatment and 11.0-11.5 with a medication I'm taking daily), I stay on a strict schedule so as not to overly tire myself. Thus, I've decided I need to gradually do what is needed to at least have my home environment ready. Hopefully that will help me to navigate this new treatment while still working full time and exercising daily when the time comes.

Of course my kidneys may stabilize with 14-15% function for a few years before they deteriorate further. They have consistently done that, i.e., shown a sudden, severe deterioration followed by a modest improvement and then stabilized at a new, lower level for 3-4 years.

This most recent deterioration with following modest improvement occurred from Dec-March. My kidneys seem to be stable again for the time being with my creatinine consistently testing from 3.2-3.4 and eGFR ranging from 14-15. My blood pressure has calmed back down and my weight has stabilized again. I'm breathing better now. The nausea and skin itching have subsided. My appetite has returned. And I've been able to start exercising daily again. So, I may have another 1-3 years before dialysis.

However, I'm an advanced planner and organizer by nature so will be less anxious about all of this if I do some things to prepare even as I hope I still have a few years before D day (or, as I've come to think of it, PD day🐶.)

Marj

7

Hello Marj,

I would support all that Helen says. I have also been on Peritoneal dialysis since Dec. 2014. 8 hours overnight leaves free days and chance to read in bed for as long as I like.

My second bedroom is 7ft.2" x 7ft. 10" and there is no room for anything else but boxes. I really would not like to be lugging boxes from the garage. I too live alone so have to find my own solutions. Any useful tips gratefully received/shared.

My Baxter machine is on an adjustable bed-table (tubular steel, C-shaped, adjustable height, like in hospitals, so it could be used across a bed.) Just big enough for the machine. I use an inverted mesh file tray over the 5ltr. bag on the heater - on top of which I can fit two 2 1/2 ltr. bags. This takes up a lot less space. The drain bags are on a cheap plastic child's sled (used in the snow!) This way, any spillage is contained and I can drag it to the bathroom for disposal. I'm getting old and weak and not up to carrying heavy stuff so any easier option is up for grabs.

The first few weeks were strange, emotionally, but I could not explain why. I soon began to think of my machine as a friend - it was keeping me alive.

All good wishes.

8

Sonia,

Thank you for sharing your strategies for managing all of this. I love the idea of a child's sled for the drain bags! I'm actually thinking that I may be able to rearrange my bedroom furniture so I will be able to drain right into my toilet with a clip created specifically developed for this purpose.

I like the idea of an adjustable bed table for the cycler too. Anything that would allow me to roll the cycler into my spare closet during the day should work. I have a little s**t tzu, Izzy, and so will need to be able to store the cycler in a room or area that she can't access. The spare closet in my bedroom would be perfect for that.

My master bathroom is right beside the spare closet so I think I could (with a long enough electrical cord) roll the cart into the master bathroom to connect and disconnect. My dog never goes into the bathroom. Plus, I can keep that door closed to ensure she doesn't go there. So I'm hoping my bathroom would work for connecting and disconnecting. Then, after connecting, I could just roll the table into the bedroom and go to bed where I could read, work on my notebook computer, or watch some TV until I'm ready to go to sleep.

As far as storing the supplies, I'm really thinking I'll want them inside rather than the garage. I've got sufficient room in my spare bedroom. (Yes, I've actually measured it to double-check,) I won't have to have them stack the boxes too high which will help me not have to move them around. (On my good days I'd likely be able to move them. But I've got to set this up for my bad days where the anemia is worse or I have a cold or something that makes me weaker.) I've got a room divider/screen I can use to hide the supplies from view--so I don't feel like I'm living in s hospital ward🐶 I've also got a 64" storage cabinet with doors I can use to store the clips and so forth. I can keep my daily data log and my ordering invoices and so forth in the cabinet too. I should be able to leave my elliptical machine in that room as well as the chair, ottoman, and file cabinet I use for my online teaching in that room.

Anyway, I'm relieved to see that this may not require extensive work to have my home ready. And, as far as the cycler goes, I think I'm going to name mine "Nelson" for Nelson Mandela as my cycler will help me maintain my freedoms and independence🐶 I think my primary concerns about all of this are threefold:

1. Following the sterilization protocol, especially on days when I'm not feeling well

2. Holding my A1C in check with the glucose in the exchange fluid (I control my A1C right now without meds. My A1C is typically 5.1; I'd hate to see that begin to be a problem.)

3. Weight management again due to the extra glucose from the exchange fluid

I'm generally good with dietary management and exercise so may not have a lot of difficulty with #2 and 3. And surely I can learn to follow the sterilization protocol. However, I suspect I'll continue to be somewhat anxious until I get started with all of this.

It has really helped me to learn more from those who are on this same path. I am certainly much less anxious now. I'm convinced this is doable. I'm also convinced that after an adjustment period I'll feel pretty good on PD dialysis. And, I think I'll be able to do this while living alone--a huge relief!!

Thank you for sharing!

Marj

9

You will be able to do it I am sure it just takes a bit of getting used to.  I am like you a stickler for forward organisation and planner. Unfortunately I didn't get that as my decrease in GFR supprised even my drs who I have seen for many years I was about 9% when the real symptons kicked in, tiredness, awful memory issues. I couldn't remember what everyday items were called and that frustrated me I had to go through a whole regmarole of trying to describe what something was used for so people knew what the hell I was going on about and then there was the loss of appite I couldn't even look at food it made me feel so sick never mind put it in my mouth.  My poor husband would try for hours to try and get me to eat just someting and would suggest all sorts of things trying to tempt me.  One night I said I fancied stuffed peppers I have never seen someone move so quick and go to the shop bless him, that was very rare though.  You do put on a little weight while on dialysis as you rightly say but don't confuse weight gain with too much food, it can be a sign you are not draining all the fluid off.  If you are having baxter you will get a little book, you weigh yourself and do your bp every morning I would advise, just after you have finished on the machine.  You will be asked by your dr to show the book regularly or asked for your figures if there are any issues.  High BP and weight gain can be a sign that you have too much fluid build up off the machine and low bp, and thirst can be a sign too much fluid is being taken off so record all your figures.  Excersise can help get the fluid off so its good that you have this in your plan.  The only thing about putting your drain straight in the toilet is you cant see it.  The reason I say this is if you can see your drain this alerts you to life threatening peritonitis that you asked about.  You can see strands in the bag you see, this can also be something called fibrin which is harmless.  I had fibrin but was called in straight away to have samples of my fluid taken just to check as the sooner you get antibiotics straight into your peritoneal cavity the better chance you have.  I just had fibrin that blocks the drain so I just had heprin to inject in the bags for the rest of my time on dialysis so was good.  My point is there is benefits to see the drain bag.  I forgot to put the plug in my drain once and luckly I noticed before any great floods and I had two fluid bags pop that was something me and my husband laughed at as my bathroom is quite away from my bedroom so there was lots of scraming and shouting and quick get it off me running but you will learn pretty quickly you have to laugh at yourself a lot when you are in the CKD club haha.  My friends were all brilliant when I had the catheter put in they wanted to see it, which I didn't mind it was a party trick in the end.  My friends would ask me questions then go away and have a think then they would be back with more questions which I didn't mind as it meant they were willing to try and understand to help me.  I couldn't have done it without them or my husband and family and I had the kidney off my best friend how amazing is she and how lucky am I hey.  You will get your routine and you will do it, its is weird at first you have to think of the pipe as your friend don't let it freak you out same with the machine its saving you. Its doesn't take long for it to be come normal for us I am sure Sonia will back me up on this.  Just keep asking questions as you think of them

10

Helen,

Good points about draining directly into the toilet. And, I so appreciate what you and others are sharing. Part of the battle is just adjusting to this major change. But I feel so incredibly fortunate that there is a treatment option I can do in my home to maintain independence and continue working. That's wonderful!

I've got an appointment with a nephrologist at a university hospital on August 16th. He's affiliated with one of the top renal hospital programs in the country. My regular nephrologist has referred me to this new nephrologist because my data has been so unusual. So, there may yet be something that can be done to improve my renal function some.

Regardless, my regular nephrologist as well as my internist think that I've got some time to prepare for dialysis. We're thinking we may be able to implant the catheter next spring and begin PD dialysis training early next summer. This approach will fit well with my work schedule.

At this point I'm feeling and functioning better than I was from last Dec-April. My renal function has improved from 9-10% up to 14-15%. I've been surprised that such a small improvement has created such noticeable improvement for me, but am thankful. I've just thought I should do what I can to have my house ready for dialysis now while I'm feeling better--especially because I live alone. That will make this all a little easier when the time comes. Plus, it helps me not to be so anxious as I wait all this out🐶 (I'm s pretty proactive person.)

Marj

11

Hi,

Just goes to show the difference between hospitals/countries.  They won't do it in the UK until you are ready to start as the longer the catheter is in situe without use the more chance you have of infection.  When its done here they put some fluid in so you are not dry as this causes pain, its alreight for a couple of weeks but needs flushing, dont think I would like one in for a whole season without using it, I wouldn't be happy with that senario at all.  When I had my transplant they left my catheter in for 6 weeks post op, they have to do this in case the tx doesn't work.  Mine started bleeding and it wasn't nice I had it flushed twice and my own hospital said it should have been left in as long as 6 weeks with no use as that is where the risk comes in.  It wasn't just a drop of blood either, if I undid the cap and drained it, it was a considerable amount of blood.  I had to phone the tx hospital and ask them to get it out. I would just ask if it is going to be left for that time without use what are they going to do to care for it.  They may give you some fluid and drain bags so you can do it yourself at home you don't need a machine to do it the bag just needs to be on a peg higher than you gravitiy will do the rest and stand up to drain ot out. I don't me to scare monger but I wouldn't be happy with any length of time over a month.

12

Glad to know this. I'll definitely ask for more detail about all of this as we schedule the surgery to implant the catheter.

Marj

13

hi how are you?

i still remember that last year you are doing well.

14

hi my current egfr is 11-12%

i had my dialysis counselling, will lock a room for my fluids also.

at frist i was quite sad n depressed as i am only 35 to accept this dialysis.

but now, i slowly slowly to accept this.

thank you all.

 

15

I have been evaluated by the PD team. You need an area to store about 36 boxes of supplies. Then you need a nearby toilet in which to drain the stuff that is in your stomach during treatment.You cannot have a cat around because they like to chew on the tubing. I don't know any thing if you have a dog. The PD team may discuss that with you. You will need about 2 to 3 weeks training on how to use the machine and supplies, before you begin.

My living situation is not right for PD at this time because I live with relatives. There are 2 cats in the house. I need a door to my room, The bathroom is not close to my room there fore I would have to use a barrel in the middle of the room to drain the stuff that is In my body. My room would only hold a out q8 boxes, so at least you are prepared for PD in your apartment.

I currently go to a dialysis center and I have 2 nonworking. fistulas and one that is working. But if it fails, my only option would be PD. But my room got alot smaller. when after I was in the hospital the doctirs ordered a oxygen concentrator for home use, so now I have less space in my room, for the PD equipment.

Good luck and for some people it is a good option. For others , it wasnt, so she is back at the dialysis center, now. She said she got too many infections but she was never alone, so that may have been a problem with kids around.

I hope it works for you. Maybe in the future it must work for me.

I don't qualify for a kidney transplant because I have circulation problems, 2 failed fistulas and lost of circulation in my feet caused amputations.

Plus I have 2 genetic kidney disorders --minimal change and focal segmental glomerosclerosis (FSGS ).

Good luck.I really hope it works for you.

16

I, too, have been wrestling with my emotions. I have been referred to a university medical center and will see a new nephrologist on August 16th. My regular nephrologist referred me to this Center because they specialize in complex cases. They are one of the top hospitals for renal care in the United States. (My data hasn't made a lot of sense so my regular nephrologist wanted the support of the medical center with the hope that they can get my kidneys working better.). So at this point I'm still waiting for the final determination as to whether they will recommend starting dialysis soon or not.

Consequently, I seem to be experiencing higher levels of emotional ups and downs than I might if my data was making sense to my regular nephrologist and it was clearly time for dialysis. However, I'm doing my best to prepare myself for dialysis mentally. I've come to the conclusion that this waiting while not feeling or functioning well may actually be worse than starting dialysis.

It has helped me a lot to visit with others in this forum. Clearly life does continue on dialysis--and, it can be a good life. I'm convinced I'll be able to continue doing most of the things I enjoy while on dialysis. I'm also hopeful that I will feel and function much better. I can and will adjust. I'm thankful that I can use PD dialysis in my home. Doing that overnight as I am sleeping is likely going to be a good option for me providing I can learn to sleep through the night with the machine whirling beside me all night. 

Have you actually started dialysis at this point? If not, which are you considering, HD or PD? Are you also considering a transplant? (Please don't feel you have to answer my questions if they are too personal or would cause you more emotional turmoil.)

Thank you for replying to my post🐶 I wish you nothing but the best!

Marj

17

Thanks! This is helpful information.

I haven't yet met with the nurse and dialysis team to get specific information about my situation. However, my nephrologist says I will be able to keep my dog. (Izzy is a 9 pound Shih Tzu. She doesn't shed. She also doesn't chew on anything.) My nephrologist said I would need to keep her out of the room where I connect and disconnect to the cycler. He said she would also not be able to sleep in bed with me. (I'm sure she won't want to sleep in the same room with me because of the noise the cycler will make. She's pretty skittish around any machine. So I expect she'll prefer to sleep in her bed in the living room. If not, she'll be put in her crate in the living room to sleep at night.)

Anyway, I was pleased to hear I would be able to keep her. It also sounds as though I will have enough space for the boxes and the machine. Frankly, if I learn that the boxes can be stored in my garage that's what I'll do. Then I'll pull what I need for the week inside on the weekends. If this won't work I'll use my spare bedroom for the storage area.

I have no idea at this point whether I would qualify for a transplant. I do plan to explore that option too. Frankly, I'm not sure I want to go through the surgery at my age. But I need to first learn if I'm eligible and then discuss it with my nephrologist, my internist, a few close friends, and so forth. I'm definitely not comfortable with a living donor so it would be a deceased donor kidney. However, I'm just taking all of this one step at s time right now.

I have an appointment with another nephrologist affiliated with a local university medical center on August 16th. My nephrologist referred me into the center for additional help on my case. My data hasn't been making a lot of sense. He says I should have "much more function" than I've got. So he's still trying to figure out what's going on with my kidneys. Thus, I'm still hoping there may be something they can do that will get my kidneys back to high Stage IV or Stage IIIB. But I know it's highly unlikely. My nephrologist has figured out that I've got chronic severe dehydration due to sodium deficiency. He's got me ingesting 3000 mg of sodium daily right now. That has certainly helped me stay hydrated. He also pulled me off furosemide. I'm not retaining fluid, my blood pressure is better, my extreme leg and abdominal cramping is gone, and I am feeling much better. I've also been able to exercise daily again. (Although I'm in incredibly bad shape at this point. But I'm working on the exercise🐶wink So, clearly, the extra sodium is helping. But he has not determined what is causing this low sodium situation.

Anyway, I'm hopeful that we'll have some answers about all of this within the next three months. Although, I am not at all sure that that will lead to improved renal function. Regardless, just getting definitive answers would be helpful.

Thanks so much for your response to my post. And, nothing but best wishes for you!

Marj