Episode 4: Managing Home Dialysis in Smaller Spaces

Vanessa:

Hey everyone, welcome again to another episode of Visits with Vanessa, a podcast where we speak with home hemodialysis patients and care partners about their experiences doing home dialysis. Today’s episode will focus on debunking the myth that you can’t do dialysis if you live in a small apartment or home. Some people think that you can’t do it if you live in the city, you can’t do it if you live in an apartment or even in an RV, you have to own a large home in order to make dialysis work, and honestly guys that is just not the case. I’m a dialysis patient myself. I’ve been on dialysis for 24 years and I’m also the senior manager of advocacy and communications for Fresenius Medical Care. I can tell you from my own experience that you can make home dialysis work for you, you just have to get creative and make that space work. So today I’m really excited to bring back my friend Dawn, who’s going to help me in a conversation regarding two pieces. Today we’re going to talk about being in small spaces and storage, creative ideas for storage, but we’re also going to talk about what our setup looks like in our home. How do you make that space comfy? How do you make it homey? How do you make it work for you? So, Dawn thank you for for joining me. Dawn is a NxStage Patient Advocate, she’s a paid advocate here, happy to share her story with us, thanks for joining me again today.

Dawn:

I’m looking forward to it, Vanessa.

Vanessa:

When you first started PD, what was it like transitioning to your home for the first time? Like how did you prepare to receive your supplies, and what did you do in general to just get your house ready for PD?

Dawn:

Oh my gosh, transitioning to home for PD was really exciting, I was so thrilled about being able to go home and do my own treatment myself and I was empowered and excited and everything and I didn’t need to do much to get my house ready ’cause we know that the PD cycler in itself is small, so the nurse helped me to pick my space where I was going to set my machine up, and all I did after training was wait for the delivery people to come with the supplies. Well, that was the surprise because when the supplies came and I saw all of these boxes being unloaded from the truck I was really overwhelmed. I didn’t expect as many boxes, but I just make it work and we just really got creative and we came up with some really inventive, creative ideas to make it work because I was excited about being at home and I was determined that I was going to make it work.

Vanessa:

You know you have that go to attitude like you’re going to make it work no matter what. Retrospectively I it was probably it probably would have been a nice idea to have an understanding about how many boxes you were going to be expecting, what, what was that like? How many boxes did you get through PD?

Dawn:
Around 50 boxes at one time and I never got that many boxes again, but just seeing it was, you know, was really overwhelming.

Vanessa:
Tell me a little bit about what your home is like in New York.

Dawn:
Well, I don’t know if people have seen New York houses on television, but I live in a typical ranch style house in New York, which is about half the size of ranch style houses everywhere else, so it’s not large, but and the storage is minimal, and so I really had to be creative with the supplies when I received them.

Vanessa:

What did you do to get creative with some of these supplies in terms of storage?

Dawn:

Uhm, the first thing that I noticed was the boxes were larger than the supplies that were inside the boxes, so we decided that we were going to take as many of the bags of dialysate out of the boxes as we could and we bought storage containers and we put the dialysate in the storage containers and that really consolidated a lot of the space and it made it a lot easier for them to store, and then I didn’t have to open the boxes later so it was easier for me with set up later on as well.

Vanessa:

That’s a great idea. I’ve heard of patients that put some of their supplies in storage bins where they might put it, maybe under a bed or even under a couch and find kind of ways to be able to store it like that. What tips can you give to patients that might have kind of how they can store it and how it could work best for them?

Dawn:

What I did was I got one of my nephews to come over on delivery day and he was in charge of organizing my supplies so he would open my boxes, put the dialysate in the storage containers and break the boxes down and get them ready for recycling for me, so it was really, you know, a hands off approach for me and I got to help him to be responsible and help auntie out when he got a couple of bucks and I fed him well too.

Vanessa:

So Dawn you did that PD for for a number of years, how many years did you do that with PD?

Dawn:

I did PD for 10 years, it was a great experience.

Vanessa:

You’re no longer doing PD, but you’re still at home, so tell our audience what you’re doing now.

Dawn:

So now I’m doing nocturnal home hemodialysis for 10 years as well,

Vanessa:

Tell me a little bit about that transition from PD to HHD. Like you know you talked to about when you did PD, that it was a little overwhelming when you got your first delivery there are about 50 boxes. How were you mentally ready to kind of be prepared and make that transition to HHD this time?

Dawn:

Transitioning from back to HHD was not as dramatic as when I transitioned to PD. I was excited about coming home doing home hemo, I was coming back from the transplant I was in center and I wanted out so I was excited about coming home, doing HHD. My nurse was very, very helpful, my care team, they were very supportive and I was ready to receive my supplies so I was kind of thinking it was gonna be like that overwhelming supply that I received when I was on PD, but I was happy to see that it wasn’t as dramatic as the PD supplies.

Vanessa:

As a home hemo patient, how many how many boxes do you usually get in a delivery?

Dawn:

I only get about 12 to 13 boxes a month on HHD and so it’s it’s really good for my tiny house and I’ve come up with my storage solutions and I have a nice long hallway on the way to my bedroom and I stacked my boxes there and anything any overflow, I have some space down in the basement for the overflow. So it’s really not a huge problem for me to work with those 12 boxes a month.

Vanessa:

I actually get about the same amount and I know that you and I have completely different prescriptions, so that sounds like it’s about an average for for people and it’s really not an overwhelming amount. But like you said before you know when I got for my first delivery, it was an overwhelming amount, right? There was a lot more boxes, but you you do find ways to manage and to store and if we’re comparing kind of the the PD boxes and the HHD boxes do you have the same kind of storage philosophy? Are you still using these bins underneath the bed, or how are you doing anything different with HHD storage in your New York City house?

Dawn:

Actually, I’m doing it completely different now because I was living in the basement when I was on PD. Now I’m living upstairs and I have that long hallway so there’s no need to do all of that opening of the boxes. Now I open my boxes as I need them and I just stack them neatly down the hallway and you know, and it they don’t bother me and I don’t bother them.

Vanessa:

I’m wondering now, as you know, kind of a a veteran patient, you’ve been a home patient for for many years, a lot of patients might say I don’t have the space, I don’t have the room, you know, I can’t be bothered what advice would you give them?

Dawn:

I would say yes, the aesthetics of the whole thing is real. You know you want your house to look the way that you want it to look and switching to a home therapy may be a little bit different than you’re used to. I would say try not to let it run your life. You know, just talk to your care team, get your nurse involved and you know have them help you come up with some hacks and solutions that will work best for you. Just go with the flow home therapy is such a rewarding and empowering experience that you really don’t want to let space and aesthetics get in your way of the quality of life and the great feeling that you can possibly experience from choosing a home therapy.

Vanessa:

Yeah, I think it’s really about kind of empowering the patient, and just making sure that you know they feel like they have the the right resources involved, that they know what they’re expecting and they work with their health care team to get ready and just in general I think patients should know that just because you don’t have the biggest home doesn’t mean that you are not a candidate for home dialysis and obviously from you know your apartment to in New York to I know many patients that are on RV’s or living in small spaces you are able to do it and so we want to make sure that we’re empowering our patients today to understand to ask the right questions so that you can find the creative solutions to be able to get your life back as we say, right?

Dawn:

Absolutely Vanessa, you hit the nail on the head. I mean, it’s all about being your own best advocate, being empowered and not putting your pigeonholing yourself into thinking you can’t do this and you can’t do that, and you can do it and I’m telling you life is just worth it, you know you just have to try something different.

Vanessa:

Let’s talk a little bit about set up so now we’ve got all our supplies you’ve got these kind of creative storage solutions so that you have everything that you need. What are some of the things that you do or that you have to make your setup work best for you? Let’s talk about our setups a little bit what’s yours like?

Dawn:

I actually have a big setup with all of my supplies on a on a large shelf in one of my other bedrooms. So that’s where I keep all of my overflow supplies and then the things that I need most urgently or I use for my treatment nightly I have right next to my bed since I do nocturnal, I do my treatment in bed, so I have everything within arm’s reach so that you know I can put my hands on what I need at any given time.

Vanessa:

I have to tell you a little bit about my little setup, so I don’t do nocturnal like you, I do daily, right? And my space I’ve got like this nice cozy arm chair, I put a blanket on myself ’cause I don’t know about you but I get cold when I do my treatment and I like to have my blanket nearby. I always make sure that I’ve got the remote control, I can tell you what are the good shows to be watching, and then it is nice to have kind of extra supplies I think you alluded to that as well, like anything that you might need and I just kind of make it a little bit about me. It’s like me time, I’m kind of cozy in my warm blanket and I’m just dialyzing and I don’t know, it just makes it a little bit more about me and I don’t feel like it’s a burden I feel like it’s more like my relaxed time. Finding those little things that make your space yours it’s just about making that space yours and comfortable and having literally everything at your fingertips. The one thing I always say the patients is make sure you have everything that you need ’cause once you’re on, you’re on. You don’t want to have to be like getting up or doing anything, so maybe even creating a little bit of a checklist if you’re new just to make sure you have everything that you need. But honestly, once you start doing it, you know really well what it is you need and you don’t need and you kind of get in a routine.

Thank you so much for joining me today we were able to discuss what it’s like to live in a small space like you do in New York City, have your supplies with creative solutions. We also were able to talk a little bit about our own personal space and you and I are very different, but we still make it homey and ours, so I appreciate the conversation. Thank you again for joining me.

Dawn:

Thanks so much for having me back, Vanessa.

Vanessa:

Awesome, so to our listeners, thank you so much for joining us today. If you have any questions and you want to learn more about home hemodialysis? Please call one of our Patient Consultants. You can reach them at 1-888-200-6456 or you can head over to nxstage.com. Our consultants are either current or former home hemodialysis patients and they can help get you the information that you need. It’s important to note that not all patients may experience these benefits. With that, thanks again Dawn for joining me today and I look forward to our next episode of visits with Vanessa. Bye for now.