Over the past few episodes, we’ve discussed a variety of topics such as vaccine hesitancy within communities of color, an overview of the stages of chronic kidney disease, and treatment options available. Last week, we delved into body image and sexuality. In continuing with our mission, our show today will help patients normalize their future as dialysis patients. Our panelists give specific suggestions and information that show dialysis patients how to take control of their future and make choices that will have a positive impact throughout their lives.
Are you currently receiving dialysis treatment? This podcast is a MUST! You are invited to join us every week. Submit your questions and your stories to kickinitwithkidneys365@gmail.com.
Visit us online: kickinitwithkidneys.com
Over the past few episodes, we’ve discussed a variety of topics such as vaccine hesitancy within communities of color, an overview of the stages of chronic kidney disease, and treatment options available. Last week, we delved into body image and sexuality. In continuing with our mission, our show today will help patients normalize their future as dialysis patients. Our panelists give specific suggestions and information that show dialysis patients how to take control of their future and make choices that will have a positive impact throughout their lives.
Are you currently receiving dialysis treatment? This podcast is a MUST! You are invited to join us every week. Submit your questions and your stories to kickinitwithkidneys365@gmail.com.
Visit us online: kickinitwithkidneys.com
Welcome to this week's podcast of kicking it with kidneys with your host Cindy Barclay. Hey, Cindy, take it away.
Cindy Barclay:Well, hello out there, and welcome to Kickin It With Kidneys a forum to discuss topics important to the dialysis community, and to provide a legitimate platform for those whose voices have historically been suppressed. Now, over the past few episodes, we discussed a variety of topics, vaccine hesitancy within the communities of color, the five stages of chronic kidney disease, and the treatment options that are available to you. Last week, we dive into self esteem, body image, and sexuality. And continuing with our mission to provide information to support the dialysis community, and our show today, we will provide information to help patients normalize their future. Joining me today, my four colleagues Maria Hemenez, RN and administrative of Quality Dialysis, Rita Williams, licensed mental social worker, Sarita Scarborough Master's in Business Administration and entrepreneur, and BJ Simone, Masters in sociology, health sciences and research trainer. So PJ, what is the word on the street?
BJ Simone:Okay, Cindy? Well, each week, we ask our people on the street to answer questions about their experience with dialysis. So let's listen to what they have to say, for this week's episode.
Word on the Street:Word on the street with Simone. Hey, Simone, we added a day talking to dialysis patients, and we asked them, How do you see your future now that you're on dialysis? What obstacles Do you see that prevents you from living your best life? And how do you plan to overcome them, here's what they say, My future is, I can tell that it's going to be a little more restrictive. As far as you know, three times a week, for three to four hours each day, I will be unable to do things. And sometimes the scheduling can also be restrictive whether your first second or third shift. And so getting a good space is also critical and having it not kind of take up a lot of your time. But if you want to survive, you have to be very diligent in fluid intake, meals, I cook a lot at home though I have become a very good cook in the last few years concentrating on this, but cooking, traveling, those kinds of things really change. At first, I had a bleak outlook. But once I started, I realized, excuse me, that it wasn't as hard as I thought it was. So I don't think I see being very impactful on my future with dialysis. At first, it was the time constraint because I was having my dialysis done in the evenings. And I could really feel it because it affected my job like because my job is kind of overtime based, you know, you make more money, we work overtime. And it was seriously limiting that. So that's what I felt then, but now it's the time that I have my dialysis, it works out perfectly, because of the time that I have my dialysis. I'm not doing anything to sleeping anyway. So it really hasn't really had you know, it doesn't really have that big of an effect on anything and that's the only thing that I really saw that it was affecting his deal with them. That's all you can do as they come. You just have to deal with them. Honestly, I don't see my future any different than I saw it before. I just feel like I just now have this one other thing that I have to do in order to continue to live a healthy lifestyle. So I feel like my future is just as bright as it was before before the dialysis um a couple of things. The first thing will be I'm on peritoneal dialysis which is the dialysis I do myself at home and be having to set up a machine every night and you know, get hooked up on it and gauging time. I'm like if I go somewhere And I know I need to get on my treatment and then took the next day, I have to be somewhere at a certain time that I have to make sure that you know, my time is gauged correctly in order for me to get my treatments done. Sometimes I can get a little challenging and a little cumbersome, and can prevent, you know, getting some things done. And then there's the travel component. I like to travel and when opportunities come up with me and my friends, it's that preparation for travel and having to pack the machine and set it up somewhere else and things like that. So I think those are my major obstacles
Sarita Scarbrough:Where I don't see it as vibrant and bright as one was, because as he once was posted, Dallas has kind of learned limited me now to date that could do and things I plan on doing in the future. So it's not as bright as he wants to look for. Yeah, well, you know, not dealing with the problem that I have. And then either for a kidney and waiting for kidney, as I said before, it literally is limited me. And, you know, wait for kidney, this is if we can stress with that as well.
Cindy Barclay:BJ?
BJ Simone:Well, the theme that our participants seem to have in common is that they've all had to make adjustments. And they've had to figure out how to navigate between what they thought their future was going to be and what it actually is. But what I hear that's encouraging from all of them is that with information, and discipline and planning that any dialysis patient can have a really rewarding and good future.
Cindy Barclay:So since our topic today is planning for the future, let's take a look at three scenarios of how we got here in the first place. You went to your primary care physician, he's telling you, it looks like you're going into renal failure, so he's gonna refer you to a kidney doctor. Okay? Now, that's a good thing, because this early referral has been very beneficial in minimizing patients going on dialysis. Now the second scenario, you went to the doctor, because you were having symptoms, you weren't feeling good. You are obese, your blood pressure is sky high, your blood sugar's out the roof, okay. But you're trying to deaf ear to the medical advice that was given you. So I'm gonna put you in the non compliant and denial category. Now, number three is a bit, you know, kind of disheartening to me. And it's it's unfortunate that we live in the United States of America, but many patients are seen in the emergency room for the first time. And the reason they've been feeling bad, but the reason why they haven't gone to see a doctor, okay, it's because they don't have insurance. Everybody on the panel know that doctors don't work for free. So we got a thank God for the county hospitals can be your amen to that.
BJ Simone:Amen.
Cindy Barclay:All right. So Sarita. How you doing today?
Sarita Scarbrough:I'm doing well. And you miss Barclay? In fact, I'm doing absolutely fabulous.
Cindy Barclay:You drink it to read it wasn't that great. I saw glass what you're drinking.
Sarita Scarbrough:I don't have a glass right now. But if it was, I'd be rehydrated from the weekend.
Cindy Barclay:Oh, all right. You know, in order to plan for the future, we need a budget. Would you agree with that?
Sarita Scarbrough:Yes, I will.
Cindy Barclay:Okay, so can we discuss some of the expenses? Okay, um, the cost of living, you know, the average reimbursement from Medicare, the group health care plans, we need to discuss we need to have a budget because you have expenses, okay. And then you have a lot of folk on your payroll. So let's let's start with that. What do these patients have to look forward to, if you can call it back after being diagnosed with this illness?
Sarita Scarbrough:Woman sparkly. If you don't mind, I'd like to take it back to some simple basics first, because I want to make sure that our individuals are understanding exactly what's going on here. And as a preface to that, I think, nurse Maria, you mentioned a lady that was on dialysis. That was potentially expecting?
Maria Hemenez:Yes, absolutely.
Sarita Scarbrough:Okay, I just want to give you a note, and let you know that our president has just passed the top Child Care Act. And so starting July 15, each child under the age of five years old, will get $300 a month. And if they're between six and 17, they'll get $250 per month, starting July 15. And that includes children born in 2021. So that goes back to kind of the end of our compensation for last week, have more sex, but
Cindy Barclay:right Uncle Joe,
Maria Hemenez:from the side, or that you get an addition, that's just, I mean, no, no requirements on that money. If you have a child, you get that money monthly.
Sarita Scarbrough:Anyway, get that money monthly. And we won't cover bank accounts today. But if you have a bank account, it'll be automatically deposited in your bank account. So so I want to get into what Ms. Barclay asked, which is, what is a budget. And it's really interesting, because of its simplest form, it's a estimate of income and expenditure was for a period of time. In most cases, whether you're in business or as your personal, you do a budget for 12 months. So consider income is money received on a regular basis for work or through investments. Now, I need to put a little caveat here for our listeners.
Cindy Barclay:Yeah, because you're talking about investments. You know, most of us don't have no investments, but I'm gonna let you run with that.
Sarita Scarbrough:Okay. He is I want to let your listeners know Miss Barkley that lottery tickets, horses and dog races are not considered investments. Okay. Let's be crystal clear.
BJ Simone:Okay, so Sarita, it does have a return.
Sarita Scarbrough:It does. But it does not fall into that category. We're going to get to that in just a second. All the time, but we're gonna talk about return. Okay. Okay, so now we want to talk a little bit about expenses. And the costs, or expenses of costs required for something, the money spent on something. But what I like to do is break it down into three categories. And while your listeners are listening, they're gonna have a little homework at the end of this. So grab a pen and a piece of paper, because I'm going to need them to do some things. So that when we get back next week, we can go into it further. So the first is a fixed expenses. And basically, fixed expenses are payments that we have very little control over. They represent our legal obligations, such as your rent, and your mortgage, and your car. Note, these are things that are typically predictable on a monthly basis, then we move on to our periodic expenses, they are a little more challenging, because they're similar to fixed expenses, but over a period of time. So to give you a good example about it, I kind of call it a it's an oxymoron. But I call it an expected surprise. Now, it's expected. But when the bill gets there, it's a surprise. So these are things that you may have, for example, like my property insurance, it's due every other month. But if I don't fix that across the board for 12 months, when the bill comes, I'm not prepared to pay for it. So what I'd like to advise people to do is to take the total amount and fix that as a fixed expense and not a periodic expense. That way, it becomes no surprise. Okay. And the last which is the best partners really the part I like best. It's the variable expense. Now, um, I think it was small who asked about what those lottery tickets go. This is also known as your discretionary expense. It's, it's challenging for your budget, but it's my favorite category because this is what we have all the control. These are expenses that we can influence with our behaviors. Um, this
Cindy Barclay:Is that that does that influence that $2 trillion dollars a year that minority spend a put into the economy?
Sarita Scarbrough:Absolutely. This is your this is your fold. This is your clothing. This is your entertainment. And I think the casino lottery tickets, we're gonna call that entertainment. Okay? The challenge with it is that it's never consistent. And so the, the way that I want to look at this for just a second is how do we learn about our spending habits and are variable expenses. We do that by where we track our activity. So I'd like your listeners for one month to track all the expenses and categorize them, according to the expenses and the sub categorization. And those being again, the fix the periodic and the variable. So what we first want to do is get people to take control of their budget by by understanding where they're spending money, because that still has not gone into the cost of living adjustments and increases, and it is not prepared an individual for the cost that they may experience with their medical services once they get on dialysis. And I think you asked me that at the onset Miss Barclay. But, you know, what we know is that those expenses can be $1,041 per treatment for commercial insurance, and $240 per treatment for Medicare insurance. And that's
Cindy Barclay:And that's where I'm talking about basically what Medicare has to pay out for dialysis services and what the group health care plans payout for dialysis services. That's just an average, right?
Sarita Scarbrough:That's just an average. Yes. Okay. So
Cindy Barclay:that doesn't include that 20% that they have to pay and pocket and all that.
Sarita Scarbrough:That's correct.
Cindy Barclay:Okay. So when you're talking about the variable, I think you went into three categories. So the variable expenses are usually where a lot of us live, because that's entertainment. That's the Gucci. And what was some other name brands Gucci and who has Gucci? Fendi? Okay. Well, so that kind of interferes, go ahead on Sarita?
Sarita Scarbrough:Well, in my neighborhood, we do the knock offs. So that may be the flea market version. But we're not doing we're not doing the real thing over here. But it still comes at cost.
Cindy Barclay:Well, I mean, it does. And the bottom line is, you know, unless you've had a look at those designer handbags, and you know, and dress attire, you won't know what's what. Okay, so but you've as you said, That's still a variable expense, correct? Correct. All right. So now, if we spend money on our bed now, we already know, based on last week's episode, you said that it was about $2,000 coming into a household, those a lot of those that went on disability because of dialysis. Okay, they went on disability, but you I think you said was about a little over $2,000 a month income that's coming into our home, right? That is correct. So if you got mortgage, average mortgage, you're talking about, I guess it depends on rent, or whatever, but you're paying anywhere from 1500 to 1000 to$2,000 a month just for the mortgage. Okay, and then you got two utilities. And then you have your food. And then you have your light bill, did I say the light bill? No. Okay. All right, but I'm already at a deficit.
Sarita Scarbrough:Yes, you are. And that's why I wanted to start off with going back to rebuild the budget, and how people need to build their budget, because we'll talk a little bit about spreadsheets, maybe in the next episode or so. But you have to absolutely start trying to budget. And I think that's why you find individuals in minority communities going and getting assistance with their light bill, their gas bill and a water bill, because it hasn't been properly planned out, yet alone planning for an illness, you know, and you know, we hear a lot about people eating healthy and living healthy. But those come out, of course, we don't, we don't necessarily have the same level of income, to be able to go to the whole foods and places like that, where you know, you're getting organic products and things of that nature. So we find ourselves at the local grocery stores, buying food that is not organic, so to speak, and all of those factors into the cost. So we are individuals that we're talking to have to begin to shift their budget and plan a little bit differently. And, you know, hopefully in previous steps, I mean, additional episodes, we'll get to talk more about savings investments and things Like that, but right now just dealing with the basics, we need to teach them how to plan and budget properly.
Cindy Barclay:Okay, well, that's gonna be a little challenging. So what we're gonna do is we're gonna Maria, let me ask you a few questions. Okay, so I've been told that I need to, I want you to discuss three of the most common concerns dialysis patients verbalize when starting, I mean, I don't know nothing, I am scared to death, I am scared shit,
Maria Hemenez:Like you said, you know your steps. As you go your PCP, they refer you to your for ologists, because your numbers don't look quite right. This is the time period where we need to be more conscious of our health and, and think of reverting the disease process backwards. You know, once you you know, unfortunately, once you're declared, a lot of things that I hear from patients, their concerns are the limitations that they have, they now have this machine that's a part of their life that they have to squeeze in whether they like it or not, you know, three times a week. So limitations with work, their work schedule, being able to vacation, leisure activities that they like to do, usually, you know, you have to realize, on average, you've got four hours three times a week, 12 hours a week that you have to dedicate to this machine, that's on average, there are some patients that do three hours, and there's some five hour patients just telling you, you know, on average, and the next thing I would say is their restrictions on food. So it seems like everything is being taken away, you know, from them. So I think as a nurse, it's really important. Once we get that patient, in center, Home program, PD, whatever the modality is that as a nurse, we're the first person that that patient meets, once they finally started. These people are on all different types of mindsets. Some people believe that Okay, my kidneys are, you know, this, the doctors telling me this, but I believe in a higher power, who's gonna say my kidneys are coming back, I've seen it happen. That's called acute renal failure. The most patients that I see are chronic or on it, you know, for a long time. So as a nurse, we have to be welcoming, letting them know that it's okay that they do have that support system, the nurse needs to also tailor their listening to being an active listener to that patient to see what their needs are, and educate them on all modalities. Again, as you talk to patients, you get to know what they you know, like, what they don't like, what they need, what they don't need. And you can help them with different treatment options that they might not have been told about in the beginning, you're starting here, but there are other treatment options that may you know, best fit your lifestyle. So basically, the number one top things that I hear from patients are basically their limitations and restrictions. Everybody's telling them what they can't do. So we need to get together with them and tell them that it's okay. And there are some things that you can do.
Cindy Barclay:Okay, so Rita, what are the three most common areas of you know, by the time the patient gets to you, okay, what are they concerned about?
Rita Williams:Kind of some of the reoccurring themes so that Maria talked about, they talk about work, they talk about transportation and insurance, that's the top three for me, you know, am I going to be able to continue to work? Yeah, lots of people on dialysis continue to work, some of them decide to work part time. And that's okay to some decide they don't want to work anymore, that it's not going to fit into their schedule. But like Sarita says, they have to consider those budgets as well. If I'm going to not work anymore and go on disability,will that check cover all my expenses?
Cindy Barclay:Let me ask you something, sometimes patients want to continue to work, but they are unable to let me get into this about employment and employers. Okay, okay. They want to continue the work, but maybe the employer feels like they're taking too much time off, okay, that the productivity is not there. I don't care if you've been there for 40 years. You got to remember, we're in corporate America. So, you know, so the deal is here, if you can't perform, what happens with this was that song hit the road, jack? I mean, it's just that simple. Why? Well, keeping it real,
Rita Williams:You're right! Well, I'm there are laws that protect our patients. There's the Civil Rights Act, there's the Rehabilitation Act, the Americans with Disability Act, that I'll protect you and your job. I mean, some employers may have to go ahead and, you know, allow for you to have special accommodations made for you. So that's part of the Americans with Disabilities Act. So they may have to make what's called reasonable accommodations for you to be able to work. So and you talk you need to talk to your employer and you if you are working at a specific job and it requires a lot of lifting and you can't lift a lot. You need to talk to them so they can make those accommodations.
Cindy Barclay:I like what you're saying. But you know, y'all I know. I'm folks go to work. Yeah. You know, they wouldn't do no work before. Right? You know how that goes. Now come on, we can we can stop this now Don't act like everybody goes to work is basically loyal and excited to be there. Okay. Now the bottom line is that if you were acting up before, how many employees do y'all expect for people just to stand by and say, Okay, I'm going to stand out, you're sad?
Rita Williams:Well, I mean, and they need to go ahead and evaluate you if they see your productivity coming down, because you don't have to go in there and tell them, Hey, I'm on dialysis. I mean, you don't have to now once it starts affecting your job performance, they may ask, Hey, what's going on? You know, is there something wrong with you, or, you know,
Maria Hemenez:it affects that overtime, like the patient says, you know, his treatment time, he's been blessed enough to have a time where he can still work and get that overtime, that helps contribute financially to the household. And there's some patients that don't tell their employers at all, that they're a dialysis. Because they're afraid to lose their job, or based off of those accommodations, you might have to take a pay cut, you can't be out in the street, like you used to, right, still give you a job. But
Cindy Barclay:what did you say a pay cut?
Maria Hemenez:It's a pay cut.
Cindy Barclay:Sarita? You know, I have a problem with that. I mean, you play with my money, and you in my pockets, nurse Maria. So I know, we can't do pay cuts over here. That's just not even an option. Okay.
Rita Williams:And then we'll then like Maria said, then we need to follow, you know, going and doing our treatments completely following our diet so we can perform at our best, you know, that's a motivation, money is a motivation for all of us.
Cindy Barclay:So BJ, in your opinion, what are the three social areas most affected by individuals with chronic illness? Okay, and how can that be managed? they're overwhelmed, you know, with everything coming at them? What is your recommendation? Because I mean, it's difficult at that point, it's even difficult later on, because you don't have any concrete. I mean, you don't you don't you know, when you're working, you're sure it's like, oh, well, I know, I got $50 coming in this week, but you don't know when you got to be laid off. You're just there, you know ,just living in fear
BJ Simone:Absolutely. But I have to, I'm gonna have to take a page from Sarita. And mentioned something because I'll forget it. Sarina, I want her very early on. speaker said, if your output is more than your income, then your upkeep will be your downfall. So all right, I like answering this question. Okay, so let's do a recap. Real quick, Maria, what is the The key word that all of us have mentioned on some level, and it really does affect you socially, is change. All chronic illness involves some type of change. Even in the best of circumstances change can be stressful because of the part that you don't know. It's the the uncertainty which you mentioned, Cindy, there's nothing that you're really certain about, and for dialysis patients early on, it's like dialysis patients I've been diagnosed my doctor, what Maria says, they don't know. And people are afraid of what they don't know. So the stress, the depression, the anxiety, that really comes from people not having information and not knowing what to expect or having unrealistic expectations. So the first suggestion is to get as much information as you can, as early as you can from as many sources as you can, talking to other dialysis patients, talking to your team providers will go a long way to alleviating any of these negative feelings. The second thing is what's significant for dialysis patients is making a schedule of their social activities around their treatment schedule. And as we've heard from our people on the street that involves employment, travel, recreation, anything that has a time commitment is going to be affected, you know, as Maria said, three times a week, three to four hours per session. But I think what is important for dialysis patients to remember is that because this is a constant, that it really can be a benefit by providing some structure and discipline in other areas of Their life, then maybe they never had to deal with before changes in social relationships. And that kind of talks, hits a little bit what we talked about in our last session. Managing a chronic illness can be overwhelming at times. And that can also be a difficulty in our social relationships. And one reason is because any illness is going to divert attention from your usual activities. And so that's something that people have to plan for. So you plan for the change. That's, that's another tip. And the final thing is social roles tend to change. When people are managing a chronic illness, people may need more assistance, we heard about the one of our previous people on the street who said, "yo know, I need more assistanc with transportation now". F r example, the person in t e family who was always the go o person, they were always t e independent one, everybody we t to them, well, now they're in a situation where, after a dialysis treatment, they mig t be tired, they might not be ab e to cook the meal for that da. And every dialysis patie t situation is different. So t e key part here, in managing the e changes in the social role s communicating having o r patients talk to their fami y members, and tell them what th y individually need and also tel them about the condition so tha people, when you're going out t the restaurant, or you're goin out to a party, your friend understand, okay, you have som limitations, you have som restrictions, but like Mari says, that it doesn't have t mean that you you don't hav fun, or you don't have positiv things to happen in your life maintaining those activities a much as possible in those thos connections to things you use to do. That's important. Bu also, the last thing is to ope up your the possibilities of ne experiences and be open to ne relationships, you know, som things are going to change an it doesn't have to be bad happens from that he tells me where to go, what do I get an appointment, tell me how that's supposed to happen?
Maria Hemenez:Once it's time to start dialysis, you should have been referred to a clinic, or whatever modality it is, when you show up there, you are initially greeted by a registered nurse, okay, let's go through their initial assessment on you. They review your medications, they review your lab work with you and what your treatment plan is. At that time, when you go into that first initial visit, you need to be prepared, you need to be on time, everything with dialysis is time. Now, you have to you know, make time for this. So time is going to be a big word in your life. Be prepared mentally and physically as well. But during that time period, that's the best time to get all your questions answered. Come in there with a with a notepad. This is
Cindy Barclay:what if everybody's too busy, you know, I get to the place. They gave me a time they told what I should not be. Okay, so I can tell you
Maria Hemenez:Now what I do as a nurse at quality dialysis and what should be done universally for dialysis.
Cindy Barclay:Now on your payroll, because you're paying them for good customer service is what you should expect, right?
Maria Hemenez:You should expect that. So with that initial meeting, you should have all your questions answered. They should tell you about all your modalities. It should be an open dialogue with that nurse in the very beginning, then you meet your treatment team, which includes your social worker, your dietician, and of course, your nephrologist, is always there at the top. They're the ones that, you know, given the orders for your care,
Cindy Barclay:Okay, Rita, transportation, education, I'm having problems. I mean, am I gonna be able to pay for all this? Are you gonna tell me if it costs now, I'm concerned, I might be working actively, and I may not be working. Can you tell me the difference of my benefits? And what I'm expected? What did you kind of tell me about because all of these things are on my mind. But I may forget you as a social worker, what is your obligation? What is your responsibility as far as bringing me up to speed? Sure,
Rita Williams:Sure, I give you the options, what are available to you, as Maria says, You are an individual to me. So I look and see what your support system looks like if you are able to work still and you're able to drive so you drive yourself to the dialysis unit. If you're not able or medically not able. You look into your social support network, which is your family and your friends, your church members. Can they give you a ride?
Cindy Barclay:Roll up everybody.
Rita Williams:Everybody's working. They're there. We're going to go to the insurance. See if you're the insurance that All right, well, then we're going to go to the bus system. Is there a bus system that provides a ride to the dialysis unit, we're gonna look into some of the suburban areas, some of the dialysis centers, you know, we're not just talking about our area, all there is some of the dialysis units may have transportation, you may need to look into your rural communities, you may look through their county services. And then you may go to the charitable donations areas and your churches and see if they provide. So we're gonna look at your eco system where your map or whatever you want to call it, whatever services you have, we're going to try to make sure you're able to come to and from dialysis three times a week. So we're gonna find some transportation for you.
Maria Hemenez:And a lot of times poor Rita, the social worker, when they get to the social worker, they think that money grows on trees. And Rita is gonna go to the back of the facility, I wish money off of the tree and bring it to them. They have to realize that you this is qualification for certain things. No budget, like Sarita was saying it's very important initially, because you don't know what you're going to qualify for. Your social worker can help you with that. But you have to be financially cognizant, you know, when you're starting with dialysis. And like Maria said,
Rita Williams:And like Maria said, not everything, nothing is free in this world. We know that. That's why it is important, like Serena says, and sometimes I have to sit down with a patient and do a budget, because they've never had a budget before. They're like, What do you mean, I have to pay for the bus? I thought I got it free. Well, some people may qualify for that. But you don't. Individually, you don't. It's going to be $1.25 for each, right. So you need to have $2.50 every day,
Cindy Barclay:depending on what state you're in. It's right. It's
Rita Williams:Yeah, of course differently state to state. But Serena is very right, that budget is critical. It is something our patients need to learn about.
Cindy Barclay:Sarita, I mean, what is your recommendations? I don't, I didn't have no money before I started dialysis. And I, my mother used to say it was no saying well, I used to sleep sometime when I was younger and mother didn't like laziness. She's coming there. Sometimes it hit me. She says, Oh, well, you didn't have a damn thing when you went to sleep and you ain't got nothing when you're waking up. So. Okay. So how do I handle that threat? I mean, I didn't have a lot to begin with. Now, I don't have much of anything.
Sarita Scarbrough:I think that what you have to look at are requirements, especially if you're a Medicare primary, you're gonna have to look at the requirements as to how much additional income you may can make number one to stay within the requirements so that you don't mess up your benefits. And then still, you're going to have to look at all of the things that you can do. That you can do from home. There are a lot of, especially because of COVID. There are a lot of work from home things. So if a person is fluent and typing, or they can do some answering phone calls in a quiet environment and things of that nature, they can pull in a little extra income, as long as they stay underneath what will affect their Medicare or their social security or what have you.
Cindy Barclay:Okay, so Okay, hmm, how am I gonna prepare for this? Do I just make up my mind? I mean, it's new, how am I gonna get into this? How am I gonna decide mentally? How am I going to cope with this? What what are some of the steps that I need to do?
BJ Simone:Okay, well, quite simply, Cindy, you got to plan for those changes. And the panelists have really given a road map on how to plan for these changes financially, socially, physically. Keep listening to Kicking it with Kidneys.
Cindy Barclay:Okay. All right. So we have our segment questions here today, ladies. Now, I'm not sure what Adam meant by this, but maybe you guys can help me out. Adam says how long can you miss taking your blood pressure medicine? before it starts affecting your sex life? I guess this has something to do with our show last week. How long? Can you miss taking your blood pressure medicine before it starts affecting your sex life? Maria, did you understand that? Because I was just opposite.
Maria Hemenez:I don't know about missing, right. So it's usually when you're taking your blood pressure medicine. Remember, with erectile dysfunction, it's all about blood flow to the genitals genital area. So blood pressure medications can kind of you know, decrease that that's when you have the issues. When you start taking blood pressure meds. You have the issues with erectile dysfunction.
Cindy Barclay:Right and you need to take that medicine because if you continue as you are, you kind of get calcification down there. And I've seen a couple of those.
Rita Williams:Now Cindy, what is this calcification,
Cindy Barclay:You're embarrassed me, but I'm gonna have to say it anyway, moving on what is calcification Okay, what it's basically where you get these calcium deposits in places that shouldn't be, and they take over and an interface interferes with the flow as well. And you're going to have problems with where let's move on to the next question. Actually, I actually got embarrassed. I can't believe it. Sorry.
Sarita Scarbrough:Luckily, I didn't quite understand that. Can you repeat that, please? You
Cindy Barclay:You know what Sarita? You know what, I'm going to send you a map of a penis and the effects of calcification, and then we can talk about it.
Rita Williams:Oh, I got the picture. Now I got it. Yeah, yeah. And
Intro/Outro:it's not a good one. Is it? Alright, so this is from Adam. Adam, no, no, no. The next one is from Ali Hunter. This is for your reader. She says My mom is a legal resident, but my dad is not. He purchased his insurance from his job. Most recently, he lost his job as my mother gonna be able to get her dialysis.
Rita Williams:Well, we are 100 we're going to look for a place to take you because your mom's not going to be without a dialysis. So we're gonna find out if she qualifies for Medicaid, Medicare, we're gonna see, you know, our county hospital will definitely take her, but she's not leaving our unit without having anything. I am going to work as hard any other social worker would do that, like Maria says. Yeah, so we're gonna find there are units that can take you there are, you know, programs that they're out there? You know, Medicare, Medicaid.
Maria Hemenez:Mother is legal. Father is illegal. Right? Well, the mother being on dialysis. She's entitled to Medicare as a legal citizen. So you should not have any interruptions in her service, not on what modality of dialysis she was on. Yeah, the modality may change.
Cindy Barclay:She said here, she has never worked to put hours into the system.
Rita Williams:So she may not qualify for the SSI or SSID. But she will qualify for the Medicare.
Cindy Barclay:Okay, okay. Oh, and this one is for me, it says three types of love I euros I got paid. And Philo, I think you forgot to agape. Well, thank you for reminding me of agape. Because I think that's the love that comes from up above. I don't have that kind of love when you're talking about relationships. If he's not right, then he needs to go.
Maria Hemenez:What did you say love Don't keep the lights on?
Cindy Barclay:Where? Well, it was saying the song It takes a fool to learn that love. Don't love nobody. Who does that? Yeah, you remember this? Okay, well, we're gonna sum everything up. BJ, what are your final responses?
BJ Simone:Wow, this has been a great show. Um, future progress depends on present planning.
Cindy Barclay:Okay, we got to save Sarina for last Maria.
Maria Hemenez:I'm gonna add to that if you plan the future, you don't end up starting dialysis in the hospital on the healthcare professionals terms. If you start early, it can be on your terms how you want it, you won't be crashing, remember that you dialyze to live, you do not live to dialyze.
Cindy Barclay:Like that, Rita.
Rita Williams:I say I encourage our patients to keep talking to the care team. We are all on the same team. We're going to continue to give out information as it comes up. There's no need for surprises. If something's coming up, talk to us. That way we could, you know, face it ahead. And we don't have to worry about this surprises. We're going to try to get those resources that you need. So keep open communication with your team members.
Cindy Barclay:That's great. And last but not least Sarita.
Sarita Scarbrough:Well, you know, Ms. Barclay always come rom a different perspective. nd I want to let you know that oday. I'm really immensely rateful for your listening udience. I think you have such wonderful audience. I went hrough and looked at some of he recommendations, I could nly take two because of the ime constraints. So the first erson I will recognize as reole69 who said the way to a an's heart is through his tomach. So we're gonna let reole69 know that I have some ed beans and rice cooking. As oon as you let me off the line.'m okay with that hot water ornbread. So I'll give y'all an pdate next week. But last eek's winner I have to give a ig shout out to her. Now I'm earing this hat in tribute to er.
Cindy Barclay:Because no, no, no, no, you wear that hat because you didn't want to get your hair done. Okay.
Sarita Scarbrough:Oh no ma'am. I've messed up on density, but I had to go all the way to the Caribbean paradise. Let me give a big shout out to Mamajuana. And I found the fountain of youth. And I went over there and I picked up the product. I can't name it because we don't recommend products and some vitamin D. And so to Mamajuana I want to say THANK YA!.
Cindy Barclay:All right, well, we hope you've enjoyed our show today. And we look forward to seeing you next week on kicking it with kidneys.
Intro/Outro:Well, that's it for today. Thank you for listening to kicking it with kidneys with your host, Cindy Barclay. See you next week. The views expressed on this podcast are educational and opinion based. These are not medical doctors. Be sure to catch us on social media on our website, kickin it with kidneys calm also on Instagram, Facebook and YouTube.