Defying Odds Fighting for Dialysis Without Insurance

Faced with the stark reality of kidney failure without the safety net of insurance, our guest today shares a gripping tale of survival and resilience that cuts to the core of our healthcare system's shortcomings. The visceral accounts of financial strain, emotional turmoil, and the race against time will leave you astounded, but it's the unexpected lifeline from Social Security benefits and the crucial role of family support that provide a glimmer of hope in this deeply personal narrative.

As my husband and I embarked on a mission across Europe to document the lives of those tethered to dialysis machines, we uncovered not just the logistical nightmares of managing such a trip, but also the human spirit's incredible capacity to adapt and advocate for change. Our project, "What's the Deal with Dialysis?", sheds light on the stark contrasts in healthcare support from one country to the next, as well as the fight to bring about much-needed policy shifts. The stories we've gathered are harrowing yet inspiring, painting a portrait of the indomitable will to thrive against all odds.

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

Transcript

Speaker 1: 0:06

Something's lost in translation or something I don't know, but it's just a little annoying. But I do have contact with the clinic. 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. 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?

Speaker 2: 1:14

call no.

Speaker 1: 1:17

I wonder if I was just not happy. I wonder if that was when I was on email.

Speaker 2: 1:21

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

Speaker 3: 1:25

Was it right when it happened? 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 the week I was on the cruise.

Speaker 1: 1:46

I went on the cruise on my birthday week. I 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, my mindset at that time was not good because I'm having an emotional. I don't like the soul of Greg, winner of my family, and I spent a lot of time in an indigenous 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 had 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 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. So it was very scary and I even, like, tried to. I'm going to be honest with you. I was probably going to be shown somewhere.

Speaker 1: 2:54

I tried to work my second job when I was off to work for a month because I needed to work my second job, because I get good money. I was a therapist. I was struggling, trying to just bring in some money, and I have six children. I'm always trying to help out and then I think I started to kind of see a light at the end of the tunnel. I'm gonna be honest with you, sitting in the hospital room I thought I was gonna die. Like the first weekend that this all happened I really thought my life was over. I thought that it was like 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. It was like oh yeah, you can work and do X, y, z, and I was like you can. So once I realized that I could like do stuff and have like a life and be able to live with it, then I got a little bit better. So I was like and then when I when my local box that was kind of a sad situation Cause I think it collapsed I go on a Wednesday.

Speaker 1: 4:03

I'm sorry I went to the hospital on a Wednesday it was the week before and I remember going to the ER, like the doctor called me, was like go to the ER now? And I was like what do you mean go to the ER Cause it almost didn't even get diagnosed cause the doctor was going to send me home. I asked him to do a chest X right and because I had I thought it was congestive heart failure again. And he was like all right, we can do chest X right. So he did the chest X right and I found out that my lung was collapsed so I probably would have been dead if I didn't request it. Here I go do a mild thing. You know control and everything. So then I went to the hospital and I was like well, can we fix this by like Monday, cause I don't have any more sick time at work? And they were like, oh yeah, all right, so we're gonna sit here and we'll talk to you later about all that.

Speaker 2: 4:51

And I was like all right.

Speaker 1: 4:52

Well, I'm serious, like I need to go back to work on Monday Cause I just got off the work. I got this hang back to work, I have no sick time and they're looking at me like, lady, 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 gonna be honest with you, my one adult child was actually 17 and my other one was 18.

Speaker 1: 5:33

And they took this off and was actually helping me get stuff paid and it was amazing what they did for me. But 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 the feet thing that I'm not really good at doing. And then my husband. I actually listened to my husband for a long time and 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: 6:09

Like I didn't think that because I know I'm a social worker, I know what they do, they'll give me to 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 2: 6:23

Yeah, well.

Speaker 1: 6:24

My mindset now is I know that there's, I can live with it. The way I was feeling back then was, I thought, as they meant, like I need to get a burrowed up, and that's where my mind was to be honest with you.

Speaker 2: 6:42

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, cause 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.

Speaker 1: 6:58

And it's been a blessing to talk to you today. It really has. I'm sorry if I treated you a certain kind of way back in the after.

Speaker 2: 7:05

But I'm so sorry? No, 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. You know, be at the world, that's right, that's right and as you should be. Yeah, I don't know. Yes, yes, well, thank you, 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 do in like a daily diary, like a video diary, sure, and you know, just document yourself and what you're up to and some of the things that come up for you, and okay, well, yeah, well.

Speaker 1: 7:51

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

Speaker 3: 7:54

Yeah, yeah.

Speaker 1: 7:55

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

Speaker 2: 8:03

Yeah, Cause we have to bring our own food? Yeah, you have to ship it over.

Speaker 1: 8:07

We're ship. We can only ship to one country, oh wow. So I'm only shipping it to Berlin, and we are. My husband is carrying 36 two liter bags and this big behind-the-case and I'm gonna pray that, okay, it's ridiculous Over there.

Speaker 3: 9:32

So that would 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, yeah, and people need to be, and part of the issue for people is they're not aware like and 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 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.

Speaker 1: 11:34

It's interesting so 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 you.