Episode 10: Join us for some commonly asked Q&A around Home Hemodialysis (HHD) Training

00:00:11 Vanessa:

Hi everyone, and welcome to Visits with Vanessa, a podcast where we speak with home hemodialysis patients, care partners, and industry professionals about home dialysis. I’m so
happy to be back. It’s been a while since we had chatted. For those of you that may not remember, I’m actually a dialysis patient myself. I’ve been on dialysis actually 28 years now. I’m the Director of Advocacy and Communications for Fresenius Medical Care, and I have a special guest with me today. I’m so excited to welcome Rosie. Rosie is a Facility Administrator for the Western Mass Home Therapies team. Rosie, I’m excited to have you. We’re going to talk today about home hemodialysis training and talk about some common questions about HHD in general. Rosie, first of all, welcome to the podcast! Can you tell us a little bit about your program and what your role is?

00:01:07 Rosie

Thank you for inviting me, Vanessa! So, I am the Home Therapies Facility Administrator for Western Mass. In the area we currently have three home programs. All three programs offer home hemodialysis and peritoneal. I’ve been working with home in home therapies for about 5 years now. Prior to this I came from in-center. I worked in-center for 16 years.

00:01:31 Vanessa:

Wow, lots of experience. Awesome. And so what I wanted to do today, like can we start talking a little bit about some of these frequently asked questions that people have? I thought we could start with training. So, if I was interested in HHD, which is home hemodialysis, how would I even go about finding a training center near me or somewhere that offers training? What would I do?

00:02:01 Rosie

So we do have something called a kidney care advocate that offer a lot of support to the patients. They usually go in and provide education to the patient of their different modality option and support them. So the kidney care advocate is the person that can start answering some of your questions. And then that kidney care advocate can also even give you a tour of the different home programs and what options are available for you.

00:02:31 Vanessa:

OK, that’s cool. So let’s say I’ve talked to the kidney care advocate, right? I’ve now decided that I think this is something I may want to explore and do…and basically train. How long would it take me typically to train and what does that schedule look like? Am I training every day? Is it once a week? Am I there for, you know, three months. What? What do you guys usually do?

00:02:54 Rosie:

Usually the training looks like it’s about four weeks. I always tell the patient it’s based on you. You know, you go home when you’re comfortable and you feel like you’re ready to transition home. The training usually is typically five days a week. We want to make sure that we’re accommodating what you have going on in your personal life. So, if you would like to train early in the morning, if you would like to train in the afternoon, we’d like to make sure that we accommodate that schedule. We figure out the schedule for every patient to meet the patients needs.

00:03:26 Vanessa:

Love it.

00:03:27 Rosie:

And it’s usually about five days a week.

00:03:30 Vanessa:

I feel like you’re saying some really important things here. So basically what I’m understanding is that you’re meeting the patient where they’re at, and you’re doing your best to accommodate, you know, their schedule with their learning needs. So I know for myself, being a dialysis patient, the biggest obstacle for me, and I was in-center for eight years, and everybody basically put the needles in for myself, and we call that cannulation, right? So I was not doing it. Everybody else was doing it but me. And when it was time to go home, my biggest barrier was self-cannulation. So, do I need to know how to self-cannulate before I start training, or is that something that you provide in training, or can you combine it? What does that look like?

00:04:19 Rosie:

Yes, you don’t have to start cannula􀦞ng before training. We wait until you’re ready to approach the cannulation part if that’s the one that you fear the most. We will wait until you’re comfortable. There’s other parts of the training that you can learn and get comfortable with until you’re ready to start to take that step and start cannulating.

00:04:41 Vanessa:

So what are the top takeaways that I would learn during training? So I’m assuming I didn’t know how to cannulate, then that would be probably one of the first things I gotta make sure I do. Are there any other two or three highlights that you reviewed during training that you think is important? Most important?

00:04:57 Rosie:

Yep. So you’ll learn the equipment. You’ll learn how to set up the equipment. Connect yourself to the cycler. Disconnect yourself another cool one that I would like to mention is we also work with you and teach you what to do in case of an emergency.

00:05:12 Vanessa:

Oh, Yeah.

00:05:17 Rosie:

You know, if you lose power in your house or there’s a storm. Or let’s say you do have low blood pressure. We teach you and your care partner how to handle those situations as they come up.

00:05:26 Vanessa:

That’s such a good point, because sometimes things happen and you know, patients can worry. And so you’re clearly not going to let people go home without knowing all of the steps that they need to. So assume now that I’ve done my training, I’ve done my cannulation training and I’m getting ready now to transition to actually go home. What does that look like? What happens when training is over? Do I get the machine and just start on my own or what happens?

00:05:58 Rosie:

Nope. So once you and the nurse decide that you guys are ready to transition home, the nurse will go with you to your house for your first treatment and stay with you as long as you need. Every patient is different, so sometimes we have the nurse that spends an entire week with the patient as much time as the patient needs. The other thing is that we also have patient care technicians and home therapies, and they also go out and provide a lot of support as well. They support the patient when the patient first transitions home. They support the patient when the patient get their first supply orders, organizing everything they support the patient if things come up with the equipment. So they also to provide a lot of ongoing support for the patient as well.

00:06:45 Vanessa:

Awesome. OK, so I’m not on my own. And speaking of not on my own, I’ve transitioned home, I’m doing dialysis. Do you provide any resources or support once I’m home?

00:07:00 Rosie:

Yes, we have the nurses, the home nurses that are available all day during normal working hours. We have on-call nurses that are available to you 24 hours a day. And we also have next stage tech support that also can offer support if you have any equipment issues that come up.

00:07:21 Vanessa:

Yeah, great. And I just want to make a note that every program is different, right? And so some programs might do things a little bit differently than other programs. So it is important to check in with your care team to see exactly what is available for you in terms of the transition home and how it works. I know this is kind of what you do here, Rosie, so thank you for sharing. All right, I want to tackle another important subject. So let’s pretend now–well, we don’t even have to pretend because it’s actually true. I’ve been home for a really long time, and my husband needs a break. I need a break. There’s a lot going on in my house. My kids, they have things going on. My husband’s going away and I want to look into respite care. That’s kind of a big word. And if you’re not a dialysis patient or know dialysis patients, you might not even know what that word means. So, I’m wondering, if you can just kind of tell us what is respite care? And then, how does respite care work in a home dialysis setting?

00:08:23 Rosie:

That’s a great question, Vanessa. So respite care is when you come back to the home team and let us provide your treatment. You take a break, let your husband take a break. And just come in and spend some time with the home team again, while we’re providing you with your hemodialysis treatments here in the clinic.

00:08:44 Vanessa:

So is everybody eligible for that? How does that work?

00:08:48 Rosie:

Yes, everybody can come back and get respite treatments. Depending your area in the home team, you can have them scheduled one day, once a month. You can do one week every few
months. You know every team does things a little bit different. Us here, we do have set respites. Some patients come in once a month. Some patients come in three days and a
quarter, you know, every three months. If your loved one, your care partner goes on vacation and you just want to take a break, you can. Come in for the week.

00:09:21 Vanessa:

OK, that’s great. And I love that you said, “That’s what we do here,” because I also think that you know that is going to depend on the clinic and what they can do. But it’s important to know for dialysis patients, I think there are a couple of takeaways that I get from what you said today so far, which is you’re not alone. You’re going to be trained. There’s opportunities for respite care. It’s important to talk with your healthcare team from the very beginning to kind of set these things up, so as you go through your training and go through your journey, you know that you have these resources and support available, which is I think really important for patients and really can make a difference on whether a patient decides to kind of dive into that journey or not. You guys in your clinic have the GuideMe technology and I’m wondering if you can talk a little bit about what is VersiHD with GuideMe Software…a little bit of a mouthful, but it’s really important and it’s so cool as a patient. So what is VersiHD with GuideMe Software?

00:10:28 Rosie:

So it’s a pretty cool machine with a nice software. I could tell you a couple of the things that the patients that are actively training with it and got transitioned home with them what they enjoy of the Versi with GuideMe is that it has pictures. It walks them through every step of everything, priming. The other cool thing that I’m hearing a lot that they enjoy is that when they do get alarmed, there’s a timer. So now you know when patients would be in the middle of troubleshooting something and would be nervous because how long the machines been paused. They now have the timer that shows them how much time they’ve had the machine on pause. Most patients really enjoy all the pictures that are available with that new software.

00:11:17 Vanessa:

Yeah. So that VersiHD with GuideMe Software for patients to understand that first of all, it’s a new system, right? It’s a new dialysis machine that has come out that actually has, like, built in support to go through how to prime the machine and to go through troubleshooting, which is what you were just talking about with alarm. So it’s a very hands on approach. And actually, your clinic is one of the first to, you know, to use this. And so I love to hear that feedback from what patients are saying, with using, you know, the GuideMe technology as a facilitating administrator. Do you feel that this has helped with troubleshooting? And what did the nurses say?

00:12:09 Rosie:

Absolutely. The patients love it. The other thing I wanted to mention is that the cool thing about it is that sometimes the patients are nervous that they’re going to skip a step during the process of priming the machine. They won’t skip steps with this, with the Versi with GuideMe you know, it won’t allow them to move forward until they’ve completed the next step. The nurses love it. They feel like it’s been very helpful for their patients. They’ve noticed that it helps the patient a lot, especially with the troubleshooting alarms. Everybody here at the clinic loves that machine, the new machine.

00:12:46 Vanessa:

I love it. Just seeing it and I know as a patient when I first started, we have come such a long way. I used to write out literally what step I had to do next and next. I had my own little notes. So to have it all there on a screen with actual visuals is I personally think a game changer. Way back to when I did it. It just kind of alleviates some of the stress. What advice would you give to a patient who’s thinking about exploring home dialysis?

00:13:15 Rosie:
I would say have the conversation with your family and don’t be afraid. Give it a try. You may be surprised how much you’ll enjoy home hemodialysis and being able to do this in your own home and the comfort of your house and not having to follow someone else’s schedule. Being able to do it when it works for you. The other thing I would like to mention is I’m thinking of other barriers and obstacles that I’ve seen other patients have to face and if there’s something that is standing in your way of moving forward with home hemodialysis, have that discussion with your care team. I know that in my area in my clinics, a couple of the things that we’ve done here, you know, we’ve trained patients in their home that were having difficulties getting to the clinic, we’ve worked with patients on weekends because they did work and had a family all weekend, that Thursday and Friday didn’t work for them. Bring these things up to your care team and they’ll be happy to work with you to help get you home.

00:14:18 Vanessa:
Yeah, it’s so true. Like, so many patients get very comfortable in the clinic and everybody’s kind of doing everything for you, but you’re really robbed of your freedom and you’re basically there three days a week, certain days, certain times, everybody’s doing everything for you. Being able to do home therapies does allow you to get some of that freedom back and be able to schedule your treatments with your healthcare providers, right? Understanding, like, your prescription and what’s right for you. Give it a try, maybe get to speak with another patient in the clinic that’s doing it right that has been doing it. That’s a great resource and see if this is something that maybe could work for you too. Look at videos, talk to your kidney care advocate, all those things I think are super important and really part of the journey and part of the process, right?

00:15:13 Rosie:
Yes.

00:15:14 Vanessa:
Rosie, as we wrap up today, I want to thank you so much for joining us and talking about your experience with your clinic and home hemodialysis training. Thanks for coming tonight.

00:15:26 Rosie:
Thank you for inviting me, Vanessa.

00:15:28 Vanessa:
Awesome! And it’s so important to understand that it’s not only the patient, it’s also the family. And you did such a great job of including all of that today. So thanks for doing that. To our listeners, if you have questions and you want to learn more about home hemodialysis, please call one of our patient consultants. By the way, our consultants can also help you find a dialysis center near you that provides home hemo training. So give them a call. You can reach them at 1-888-200-6456 or go to nxstage.com. It’s important to note that our consultants are all current or former dialysis patients, so they, like me, understand dialysis, and they can help answer all of the questions that you or your family members may have. It’s important to note as well that not all patients may experience these benefits. Well, everybody, thanks again for your time. I look forward to our next episode of Visits with Vanessa. Bye for now.