The Unseen Struggles of Chronic Illness and the Quest for Care

Imagine facing a life-altering illness with no insurance to cushion the fall. That is the stark reality our guest courageously navigates as they share their raw and stirring tale of kidney failure. This episode peels back the layers of emotion and hardship that come with a serious diagnosis, the immense pressure of balancing work, and the unforeseen impacts on family life. Listen as we unpack the critical turn of events, from dealing with a lung collapse to the power of self-advocacy amidst an often indifferent medical bureaucracy. Our discussion also shines a light on the surprising sources of support that can emerge in times of need, revealing the resilience and adaptability of the human spirit in the face of adversity.

Setting off on a journey with dialysis isn't just a logistical challenge; it's an odyssey that tests the limits of what we believe is possible. Our guest recounts their remarkable experiences of traversing the globe, managing dialysis, and the stark contrasts in healthcare experiences from one U.S. state to another. You'll be inspired by the determination to live life without bounds and the ingenuity required to plan travel with medical baggage in tow. As we explore the diverse healthcare landscapes from Pennsylvania to Florida, we uncover the broader implications for dialysis care and the urgent need for systemic change. Tune in to this compelling episode that not only raises awareness but also serves as a beacon of hope and guidance for anyone facing similar challenges.

A conversation about the kidneys and what happens when they fail.

Transcript

Speaker 1: 0:12

Some things are lost in translation or something, I don't know, but it's just been a little bit of a problem. I do have contact with the clinic, though. If they call me. They'll call and check in or ask me questions. Now the problem I'm really having is insurance. I have no insurance so I don't know. We're going to figure it out, they will figure it out.

Speaker 2: 0:45

They will.

Speaker 1: 0:46

Yeah.

Speaker 2: 0:47

Okay, and I just have one more question for you. When you were diagnosed with kidney failure, me and Ira spoke, and we were embarking on this process, and I called you, and so I want you to share with me how you were feeling at that moment, if you can just kind of sum that up, and why you didn't want to return my call.

Speaker 1: 1:12

Are you going to return your call?

Speaker 2: 1:14

No.

Speaker 1: 1:17

I wonder if I was just not happy. I wonder if that was when I was on e-mail.

Speaker 2: 1:20

Yeah, I'm not sure I think it was before. It was before.

Speaker 3: 1:26

I think we tried to get to before it happened because, remember, you were told that you were down to like 15% and we were starting to do starting to work on this documentary, and Maurice wanted to try to get you, to get you before you hit end stage.

Speaker 1: 1:40

Okay, Well, I was already in end stage right in the middle of it, and then when I went on the cruise, it was like I came off the cruise, like I went on the cruise on my birthday week, so I'm off to October 20th and I'm thinking, probably it was like probably about a week and a half later I was in the hospital. So I wasn't happy with anybody. And then, like, mind you, like my mindset at that time was not good, because I'm not even emotional, I don't like the soul of Fred, winner of my family, and I spent a lot of time in the dodging this whole situation because I needed to take care of my family. So just to think like within a day and I don't save money, I hate to say it, I don't. Thank God, I have a wonderful job. I had a wonderful job that saved money for me and took it out, even though I didn't want it to. We negotiated as a whole other discussion but I had no plan of what I was going to do, like if we just had to live off my husband's social security.

Speaker 1: 2:43

So it was very scary and I even tried to work my second job because I was a therapist. I was struggling, trying to just bring in some money. I have six children and I'm always trying to help out. I started to see a light at the end of the tunnel. I was sitting in the hospital room and I thought I was going to die. The first weekend that this all happened, I really thought my life was over. I thought that it was only a matter of days before I died. I didn't think that I could live with this, and then some nurse came in and was talking to me.

Speaker 1: 3:39

It was like oh yeah, you can work and do XYZ, and I was like you can. So once I realized that I could do stuff and have a life and be able to live with it, then I kind of felt a little bit better because I was like and then when I, when my local collapsed, that was kind of a sad situation because I think it collapsed like on a Wednesday I'm sorry. I went to the hospital on a Wednesday it was the week before and I remember going to the ER. The doctor called me and was like, go to ER now? And I was like what do you mean? Go to ER? Because it almost didn't even get diagnosed, because the doctor was going to send me home.

Speaker 1: 4:17

I asked him to do a chest X-ray and because I had I thought it was congestive heart failure again and he was like all right, we can do chest X-ray. So he did the chest X-ray and found out that my lung was collapsed. So I probably would have been dead if I didn't request it. Here I go, do my own thing, you know, controlling everything. So then I went to the hospital and I was like well, can we fix this by like Monday, because I don't have any more sick time at work and they were like oh yeah, all right, so you're going to see here and we'll talk to you later about all that.

Speaker 3: 4:51

And I was like I'm serious.

Speaker 1: 4:52

I need to go back to work on Monday because I just got off the work. I just came back to work, I have no sick time and they're looking at me like maybe you're going to be off for a little bit. But I didn't want to tell me Because once again it's a guy for Aflac and I had signed on and I got it twice in a year, which is odd Because I had two different circumstances. So that helped me keep my bills paid and prayer and paying everything ahead of time. I just really was trying to be creative on how to like keep everything afloat. I have wonderful adult children and I'm going to be honest with you my one adult child was actually 17 and my other one was 18 and they took this off and was actually helping me get stuff paid. It was amazing, like what they did for me.

Speaker 1: 5:42

Bye, eventually I just kind of said you know what I'm going to let it go and just figure out, like just take care of myself and see what happens. It was that you know, stuck out on faith, things that I'm not really good at doing. And then my husband. I actually listened to my husband for a long time. I did apply for Social Security. So I kept telling him like right, I'm not going to give me anything. I made too much money, like, just leave it alone. And I was like fine, I applied and they approved me right away. Which was like what.

Speaker 1: 6:08

Like I didn't think that because I know, like I'm a social worker, I know what they do They'll give me the run around. I've had clients that have been denied so I just knew they were going to deny me. They were like no, yeah, you're so that kind of told me I wasn't doing too well.

Speaker 1: 6:23

Yeah, well my mindset now is I know that there's, I can live with it. The way I was feeling back then was, I thought, end statement like I need to get a burrowed plot, and that's where my mind was to be honest with you.

Speaker 2: 6:43

Okay, thank you so much for sharing, because there are so many people out there that felt like you did and I know they do because I see them every day and that's why we're doing this and I just so appreciate you sharing with us like I really do, and it's been a blessing to talk to you today. It really has.

Speaker 2: 7:02

I'm sorry if I treated you a certain kind of way back in the day. So not at all. We just wanted to document that. I just wanted other people to know why people feel that way, and otherwise I wouldn't have asked you. That's right. That's right and as you should be. Yes, yes, I'm so glad you're doing better. It is such a pleasure to meet you and I'm glad you're doing better and you do a great job with PD, and that's good.

Speaker 3: 7:33

Thank you, thank you, yeah, and I love you and we're going to, as this develops I know we talked at a point maybe, if you're doing like a daily diary, like a video diary and you know, just document yourself and what you're up to and some of the things that come up for you, okay, well, yeah.

Speaker 1: 7:51

I could document, because you know I'm going away.

Speaker 3: 7:54

Yeah, yeah.

Speaker 1: 7:55

Oh Lord, I'm a little concerned about that. We're going to Europe for a month and I don't know how that's going to work out.

Speaker 2: 8:02

Yeah, I mean. Because we have to bring our own fluid? Yeah, you have to ship it over.

Speaker 1: 8:07

We're ship. We can only ship to one country.

Speaker 2: 8:10

Oh, wow.

Speaker 1: 8:10

So I'm only shipping it to Berlin, and we are my husband is carrying 36, uh, two liter bags in this big behind-the-scenes case and I'm going to pray that I can. They'll have enough fluid to get me through until. Berlin.

Speaker 2: 8:30

Okay, yeah.

Speaker 1: 8:30

It's just, it's ridiculous and that's the kind of stuff like especially because my company is international, uh-huh, and so you would think it would be easy for me just to have fluids sent, and actually the CEO, coo of my dialysis center said the same thing. It's like that doesn't make any sense. We have companies in the countries you're going to. Why can't we just get the fluid? So that's, it's red tape, that bureaucracy stuff. So I would, I would love to do a documentary, like a little video thing Over there and that whole process and also to help people understand that they can travel.

Speaker 1: 9:05

And I'm gonna tell you, I know I'm gonna be tired. I get tired quickly. That is an issue for me. I do get real tired. I still think I could do stuff Until I get half way down the beach and then I got to get back and then I'm like out of breath.

Speaker 1: 9:17

And it's really hard for me. I'm ready to pass out, so I have to remember, like I can't walk all over London like I did ten years ago, that's just, I'm not, and I'm not that young, so I can't do that anymore. So that I can definitely do that for you.

Speaker 3: 9:34

Yes, please, that'd be great because I think it'll be. I mean, this whole thing is unfolding. We just kind of started today, but it's unfolding nicely and I think that that will be a really intricate, integral part of this. Because you know, just that's part of what we're gonna do. We're gonna tour the country and then round to the world and just see how people are doing. Like the title is what's the deal with dialysis? And so Show us what your deal is, what you, how you're coping, how you're dealing, you know how you are, what you're finding out about the bureaucracies in the red tape, because we know it's out there and People need to be, and part of the issue for people is they're not aware, like nobody knows, like nobody's been given the information, and you said that earlier very nicely, that people aren't talking to each other. Right, and it seems like it should be simple, but it's not happening and we're trying to affect a change in those best practices.

Speaker 1: 10:35

So I think the biggest issue for me is since I've been here in Florida is and I'm not trying to get political, but it is a political situation I came from a Democratic State of Pennsylvania with a Democratic governor. I had good insurance, even through my job, but there was Medicaid expansion, which was part of the Affordable Care Act. So I was eligible as a dialysis patient for Medicaid there Moves, here it's a it's a Republican governor who did not sign on to Medicaid expansion so I am not eligible for a jack and the only people that can get like even like I'm on Medicare through Social Security but I have not eligible for any of the supplements because I don't have HIV, nor do I have diabetes. Those are the only two special Diagnosis that have a specialty Available insurance. I was like it's interesting.

Speaker 1: 11:36

So I'm not eligible for it. I'm not eligible for public assistance, I'm not eligible for anything.

Speaker 2: 11:41

Well, you know, in 1972 there was the Social Security Healthcare Act the Nixon signed for dialysis patients. So I am blown away that Florida is Not allowing that to happen, because within stage renal disease, 90 days after you're diagnosed, your primary insurance gets to walk away and Medicare and Medicaid Pick it up. And so it's interesting to see the Florida doesn't do that.

Speaker 1: 12:08

I haven't talked to a gentleman standing outside the public trying to sign Medicare page you.