What's the Deal with Dialysis?
A conversation about the kidneys and what happens when they fail.
What's the Deal with Dialysis?
Episode 8: Valerie Sauccelli’s Triumph Over End-Stage Renal Disease
What happens when a simple medical consultation turns into a life-altering diagnosis? Discover Valerie Sauccelli’s incredible tale of resilience as she navigates the tumultuous waters of end-stage renal disease, a condition she bravely manages despite the odds. Initially misdiagnosed, Valerie faced the shocking reality of her kidney health when one of her organs completely stopped functioning, and the other was barely hanging on. Her journey highlights the crucial importance of accurate medical diagnoses and the power of perseverance. Listen as Valerie recounts how a personal twist—her then-boyfriend offering his kidney—transformed not only her health journey but her entire life, culminating in their marriage and access to improved healthcare.
Join us as we explore advanced dialysis treatments that offer a beacon of hope for those with precarious kidney health. Hear firsthand accounts from patients, including Valerie, who share their experiences with cutting-edge temporary dialysis procedures, like a revolutionary 24-hour treatment that had a life-saving impact. Learn about the surprising dietary changes, such as embracing a vegetarian lifestyle, that can ease the strain on compromised kidneys. Through these stories, the episode underscores the profound impacts of medical innovation, the necessity of robust support systems, and the relentless spirit required to tackle such formidable health challenges.
With hosts Maurice Carlisle and Ira McAliley
Music.
Speaker 2:My name is Valerie Sauccelli. I am age 51. I live currently in Los Angeles County, california, have end-stage renal disease due to complications from juvenile diabetes at age 11 and what else.
Speaker 3:Okay, so you have end-stage renal disease. When did you find out that you had end-stage and when did you start having kidney issues?
Speaker 2:Oh, kidney. I was diagnosed with kidney complications 10, maybe 15 years ago. I had a what they thought was kidney failure. What they thought was kidney failure, and because people with kidney problems cannot have the dye that that they put in you that's able to see all your organs, because it will further kill your kidney, so they had to do other tests besides that, which aren't very well, you know they don't see very well. So they did not know that one of my kidneys completely stopped working until I moved out here 10, 15 years later and found a kidney doctor who said oh, you know, you don't have any blood flow in your left kidney and your right kidney, you know, is very bad but it's still functioning. And the way he says it's still functioning is you're able to urinate. So I can't imagine not being able to urinate Anyway.
Speaker 2:So so far, not being able to urinate Anyway, so far I'm still able to urinate and due to the dialysis I'm on, which is the peritoneal dialysis and it's on the machine, there's a manual and then there's a machine. I do manual in between the machine and the machine's done at bedtime, while I sleep, and currently I'm on 12 hours of that a day, which does cut into my part-time job. You know, when I get up in the morning, I have to be there at 9, so I get off at 2.30. So I'll miss a few hours every day. So on the weekend I make up for it by doing the full-on dialysis on the weekend got it.
Speaker 3:I'm gonna stop and go back just a little bit. Tell me what it is that you do for a living. And actually before you do that you were talking about you know your doctors and that whole process. What was it like when you first found out? I mean, what were the symptoms? You said that you went in and they found out that one of your kidneys was really down.
Speaker 2:What led?
Speaker 3:up to that.
Speaker 2:Funny story about the doctor that diagnosed me. Um, I had insurance, it was a, it had gone down to hmo but it was on a cobra, and so I had a professional kidney doctor that I was seeing and he would just call me in for a blood and urine test every couple months. And then, when I was not able to afford medicine because my cobra took all the medicine off, so I went to a clinic to get medicine, they said, well, we have to treat you, to give you medicine. So I said fine, so they took a urine and blood. And then I came back the next week and they said Please sit down, we have some bad news for you and I'm like what they said You're at end stage renal disease and you need to have a kidney transplant. And you know, whoa, whoa and I'm like what you know. So, um, that's when I dropped the doctor I had and found another doctor who what did I mean?
Speaker 3:what did the first doctor say?
Speaker 2:He was just like oh, you know your numbers are, you know they're slowly getting worse, but he wasn't showing any importance, or you or where, end stage renal disease. He wasn't very informative at all, you know, and I like an informative doctor, and so at that time I didn't need him anymore and I needed someone who was going to give me more information. So then moving forward.
Speaker 3:You were at the clinic and they told you you're end stage. What happened from there?
Speaker 2:Well, at that point I had moved away from my then boyfriend. We weren't getting along so well and I went and I told you know, I was really wondering if he really loved me. So I went and I told him what the doctors told me at the clinic and he said if you need my kidney, I'll give you one of my kidneys. So that was like the answer to my prayers. We got married, I got his SAG insurance, so I had real good insurance, and so it was amazing because my kidney diagnosis saved my life.
Speaker 2:And here's how because when you go to have a the workup done for a transplant, they need all these tests. They need your heart, they need your, your colon, your mammograms, all kinds of x-rays, and. And so I started doing the checkoff list of getting all these tests done, and the last one was the heart. So I finally went to the heart and they said oh, you know, we see, we see something, but we can't really tell unless we put that dye in you and do an angiogram. And I know about the dye, that it you know, and I already knew I had one functioning kidney and one not functioning kidney doctor.
Speaker 2:The kidney doctor that told me I had one functioning kidney, offered to do a temporary dialysis, which is a hemodialysis in the neck, right after they put the dye in me and do the test, then I'll go back up in my room and they'll do 24 hours of dialysis to get the toxins out of me. And so I shook his hand. He goes you know, this has never been done before and I said you're kidding me. So I'm like how many people didn't know about? Don't know about this? So anyway, I felt five times better because all the toxins you know, times better because I, all the talks you know, and I had since become vegetarian to prolong be going on dialysis, because I know the creatinine from, from protein, can you know, harm the kidney more and more. So I postponed the dialysis but in the meanwhile I saved my life by they found a 90% block.