What's the Deal with Dialysis?
A conversation about the kidneys and what happens when they fail.
What's the Deal with Dialysis?
Episode 8.2 Val: Navigating the Complexities of Home Dialysis: A Story of Resilience and Advocacy
With hosts Maurice Carlisle and Ira McAliley
And now I'm even more, because the time it takes, you know, for instance, when I go to bed and it's the time where you should be unwinding I'm winding up because I'm putting this over here and this over here and doing this and doing that, and I'm hooking up and then, finally, when I lay back down to sleep, you know, either I can't sleep or I'm completely tired, and when I wake up in the morning, either I haven't gotten enough sleep, because the dialysis does wake me up a lot. I'm a highly sensitive individual and so it'll cause discomfort or pains, I'll have to turn and sleep in another direct direction. But, um, so that's the the big thing. I've noticed that it does make me tired. And you know, and with everything I eat I have to take phosphorus, which is in meats and beans and seeds, and it took me months to get into the routine of you, of you know, taking that with everything I eat, and if I don't, I would suffer with these itches and these, these sores that don't heal, and so that slapped me into shape. But, um, yeah, that's, that's a risk there.
Speaker 1:And so, being itchy a lot, you know, late to work, but my boss, you know, he's like okay, val. What happened today? Well, I didn't sleep much and I tossed and turned and I had to do the rest of my fills in the morning from dialysis. That's why I'm late. Fills in the morning from dialysis, that's why I'm late. Or actually, when this huge truck delivers my boxes and boxes and boxes twice a month to me, they can't come here. Be before 9 am or after3 pm. When I'm home from work, they always come at 9, 30 or 10 or 11. So if my husband's not home I have to stay home. So that's another reason, um that I can't you know?
Speaker 1:and then, um, I used to be in the chorus and they, the chorus, would meet a buddhist chorus. They would meet every Saturday from 10 to 12. And it's the weekend that I do my full 12 hours of dialysis. So I'm really not up till you know 11 or 12. And then I eat, and then you know and do my stuff I can't do on the weekday, so I you know, that interfered with that and do my stuff I can't do on the weekday, so that interfered with that.
Speaker 2:But until my transplant, then things will change. So explain to me the process. I mean, we're going to go check it out, but just when you like you said that it's different during the week than it is on the weekend, you can just give me just like a quick breakdown and we'll get more in detail when you actually show us.
Speaker 1:Well, I'm not an early to bed, early to rise person, eh A. So I have my Buddhist activities and I get home at 9, 9.30. And sometimes I haven't eaten. So then I eat and to do dialysis on a full stomach, because it makes you fuller, you don't digest your food and so then I have this bad stomach ache. So I'll have to wait until I have an hour or more to digest and sometimes I'll fall asleep while I'm waiting and I'll wake up at three or four in the morning going oh no. So then I only get a couple of sessions in, you know, out of six sessions, and it's like two to two and a half hours each session. So it depends when I start. And, add you, I'm supposed to do 12 hours. So during the weekday I normally only do 8 to 10 hours, but mostly 8 hours. So then on the weekend is when I do my 12 hours and of course I will start it late at night. We have a little helicopter action here.
Speaker 2:We'll go through that a little bit again too. Let me just look here. Yeah, it sounds like he's just circling overhead or something and now it's gone. All right, just go to the end here. If you could change anything about your situation, your treatment, how the process has gone, what would you change?
Speaker 1:um, I would love for the equipment to be smaller and less heavy, but it's really good just go back say if I could change anything about. Oh okay, treatment and yeah if I could change anything about my treatment for dot for kidney disease, I would make the um sorry, can we do that one more time?
Speaker 2:there was some squeaking, oh yeah oh, that was me.
Speaker 1:If I could change anything about my treatment or the way I do it. I would like for the equipment to be less bulky and heavy. I mean, my bedroom is a warehouse and, thank goodness my husband and I each have our own bedroom. I can imagine, you know, if we do that to share it. That would be one. I would like for the dialysis people to deliver, you know, have more convenient hours for delivering said equipment. How?
Speaker 2:about your doctors? How do you feel about your doctor's care and the process that you've had to go through with your insurance and stuff like that?
Speaker 1:I feel blessed with my doctors, but only because I seek the doctors that really want to tell me as much as they can but I ask a lot of questions too, but they don't seem.
Speaker 1:They don't seem to mind. Um, and the dialysis center I'm with, I'm signed up with them because I'm, when you go on dialysis, the type I'm doing the home dialysis you immediately go on to Medicare Hemodialysis, which is the blood one. It takes three months to go on Medicare. So I'm currently on Medicare and it's like $300 every three months and the National Kidney Foundation is taking my bills and paying them and apparently my cost of health insurance they're going to also pay. So that's in the in the route of getting done, which is going to be a great break for my husband and I. A lot of these medicines cost a lot of money. You know, these phosphorus pills are, you know, $200 to $300 a month. Chem strips for diabetes $200 to $300 a month. So I pay a good share and I can't imagine if I get on lifelong immune suppressant drugs and apparently Medicare is only going to last three years from the time I have the transplant. They used to be able to cover all your medicine to the end of your life.
Speaker 2:So I don't know what's gonna happen then what advice would you give to those who are, you know, starting just finding out that they have issues? Let's start there. What would you, what advice would you give to those people who are just finding out and those people who are on, say, hemodialysis that might want to switch? You know what advice, advice you have for other folks that are dealing with kidney issues.
Speaker 1:Well, I would seek out a doctor that believes in peritoneal dialysis.
Speaker 2:That would be the first you go back in.
Speaker 1:If I were to give advice, if I would give advice to someone who is Dealing with kidney, but however you want to phrase that, but just include that is dealing with kidney, however you want to phrase that but just include that If someone wanted to change from hemodialysis to peritoneal dialysis, I would seek out a doctor that knows and does the peritoneal dialysis, or hooked up to a dialysis center, because I ran into a bunch of doctors. Or hooked up to a dialysis center, because I ran into a bunch of doctors that told me not to do peritoneal dialysis and I'm glad I didn't listen. I listened to myself.
Speaker 2:But yeah, Okay, how about somebody that, like I told you about my sister, she is someone who knows she has issues, knows she eventually needs to deal with it. What do you mean issues she? Her kidney function is down to like 15% and doctors have told her that she needs to address the situation. You know, have a stint put in so that she can eventually have dialysis, but she's kind of lagging. She's not really doing what the doctors have asked.
Speaker 1:And for someone who has issues with not wanting to go on dialysis, you know, and I was like that. I put it off as long as I could. I became a vegetarian. That's how much I wanted to stay off of diet, to become a vegetarian very strict. But the consequences I did not know is that there's levels of toxins in the body and that can affect the heart, that can affect the eyes, it can affect your joints, so you're taking a risk of agitating other parts of your body by not you know, and I didn't know. When I first started the peritoneal dialysis, april a year ago, april year and a half um, I had so much energy and color back in my face of people wow, you look so great. I mean I thought I have energy now, but I really had energy, you know, when I went from night to day type of deal. So yeah, for anybody I would say do research a little more.
Speaker 2:Okay, Any questions? You can think of Matt Mm-hmm that. What exactly is dialysis? Dialysis is a method of cleaning and you can look at me. Continue to look at me here so you can start.
Speaker 1:Dialysis is a method of cleaning toxins out of the body, whether it's via blood or via the peritoneal cavity. Or via the peritoneal cavity, the hemodialysis, which is the blood version. They put a stent in your arm takes three months I think I said that already and the peritoneal dialysis. You go in for a very minor surgery where they implant a tubing in your stomach and the tube sticks out about six inches to a foot and so that enables you to hook up to your you know the liquid that's going to go in in you and it takes the liquid out of you. You're not able to bathe, swim or take, you know, for six months to a year after this procedure because it but I have never been able to heal.
Speaker 1:It's never some people, probably cuz I'm diabetic, but some people they heal right over and it just looks like it's part of their skin. But so I don't, I don't take the risk of getting an infection from bathing or, you know, going to the beach or pool. Got it? Um, okay, I think that Got it. Okay, I think that you can go to the other part. I'd just like to proceed here. I did want to talk about.
Speaker 2:Okay, yeah, if there's anything that you yeah.
Speaker 1:I'd like to talk about diabetes and peritoneal dialysis. Okay, peritoneal dialysis is sugar water. Fartanel dialysis is sugar water and when I'm doing 12 hours at a time, the sugar water goes in me, fills me up. I do not get hungry because the sugar absorbs into my bloodstream, makes my blood sugar go up on top of it, so I'm running higher blood sugars. Now there's a way that they say you can put insulin into the bag, but then that the risk of getting in you know, an infection that way is is high, and they don't want me to have any risk of infection. So I just have to really, really watch my blood sugars because you know again that could high blood sugars can be as bad as the toxins for heart disease and I. And so how?
Speaker 2:do you monitor that?
Speaker 1:I don't know if you see my fingertips, but black holes everywhere. I just poke my finger and test it five to ten times a day.
Speaker 2:Can you say that in the full sentence? I did a procedure In order to check my blood sugar levels. I mean because you have to monitor yourself.
Speaker 1:Okay, In order to monitor my blood sugar levels, I poke my finger. There's a kit that you can test your blood sugars and I do that about five to ten times a day.
Speaker 2:Have you had any incidents in your treatment where you missed something or there's complications?
Speaker 1:Oh yeah, I have missed treatments by falling asleep because I was so tired that it was already for. I was even hooked up. I just didn't push start, so I've missed. You know, I've missed days, you know, not in a row, but here and there. I've missed days, not in a row, but here and there, and I've had very high blood sugars by just not realizing that two hours went by while I was holding a lot of sugar water in my peritoneal cavity sugar water in my peritoneal cavity and so it's resulted in this eye and a lot of people think it's what do you call that? A Cataract. But it's not a cataract, it's calcium growing in this eye and there's nothing they can do about it yet, but so that's a sugar level thing.