A million more miles to cover: staying hopeful while managing kidney failure

Editor’s Note: Since the publication of this story, Steve Floyd was able to secure an anonymous kidney donor. He underwent a successful kidney transplant at the University of Minnesota Hospital on Oct. 16.

Floyd is currently recovering from his surgery and will be out of work for a couple of months. If you’d like to contribute to his fundraising efforts, visit this link.

Steve Floyd has lived a storied life with many chapters. When we sat down with him last fall, he reflected on his community outreach work as a gang and youth outreach worker, advocate for families of homicide victims, youth basketball coach, and world traveling photographer.

Recently, the MSR caught up with Floyd again to discuss a lesser known part of his story: that of kidney failure. In the excerpt below, he opens up about what it’s like to live with the condition, how it has shaped his outlook on life, and how, after so many years of helping others, he’s now looking for help himself in the form of a donor.

MSR: Roughly a year ago, you sat down with the MSR for a two-part story about your journey from gang outreach worker to photographer and your travels to Africa. The story covered a lot of chapters in your life, yet you did not disclose at that time that you had been living with kidney failure. Why?

Steve Floyd: Well, it seems that when people feel…something is wrong with you, they treat you differently. And to me, sometimes it can feel like a lot of negative energy.

There is power in receiving people’s thoughts [about you] as if you’re sick or on the way out. So, I just kept it to myself until the appropriate time when people had to know — like right about now.

MSR: So that negative energy feels contagious, so to speak? Do you begin to see yourself how they see you — as a sick person — as opposed to someone living with and managing a medical condition?

 SF: Yeah, that’s it. Exactly.

MSR: Ok, so let’s start from the beginning. How long have you had kidney failure?

SF: I had a biopsy in 1996. It was a random checkup… and that’s when they told me that I was having kidney failure. [Learning of the kidney damage] wasn’t shocking at the time because my kidneys weren’t that bad. But eventually, over time, they got worse.

MSR: Did you have any symptoms prior? Certain things you couldn’t explain?

SF: No, you don’t really get any symptoms, other than hypertension. High blood pressure is something that can cause or lead to kidney failure. And in my case, it was also influenced by ibuprofen.

I was working out with NBA training camps [with a friend who played for San Antonio at the time], and before and after extensive, hard workouts you take an ibuprofen so you don’t feel the pain. Also, I started using it for headaches and hangovers.

So since 1996, I started taking care of myself. No more ibuprofen, but hypertension was still leading towards the damage.

I got to the point where I didn’t eat anything out of a can or a box, nothing processed. And that [delayed the onset] of kidney damage up until I started feeling symptoms of being abnormally tired about two and a half years ago.

MSR: Had you heard anything about the dangers of overusing ibuprofen?

SF: None at all. I was just popping them like candy.

MSR: Has it been a humbling experience?

SF: Oh, it’s really humbling… You’re put in situations where you’re dealing with life and death. Most of us living don’t know how we’re gonna die, so basically, the kidney thing makes you aware of what you could die of. But there are a million more things you could die of every day. [Laughs] I’ve become more conscious of myself and the things that go on around me.

MSR: What gives you comfort or peace in this situation?

SF: Well, as long as I know that I’m taking care of myself. And I know the things I’ve done with my life, the things I’ve seen. I think when you challenge life, do things with your life, you don’t have regrets. I get satisfaction from that, knowing that I gave what I could and took advantage of life, whether I’m traveling, meeting people, learning cultures.

When I worked at the county attorney’s office [as an advocate for families of homicide victims] and I saw so many deaths from people being killed, I developed this thing that every morning I got up, I’d tell myself, “I could die today.” And I’d tell people, well, one day I’m going to be right! But it’s a preparation.

If you had 24 hours to live, what would you do? In saying that, that’s what you should do every day.

Related stories:

• From pain to purpose: Chronicling one man’s call to serve
• Common medications like ibuprofen can damage your kidneys

MSR: So you’ve become more intentional and purposeful now?

SF: Yeah, it gives a purpose for that day and you value your time. Like today, I went out and sat in the sun. I listened to birds, trees…

It gives me insight for that day and how I take care of myself. A lot of people don’t take care of themselves. If they can’t see [a health concern], they don’t think it’s there. And the thing about kidney disease and hypertension, you can’t feel it, but it’s there.

It can hit you. It may not hit you so you die, but it can create complications of how you live your life in terms of things you can do…or things you no longer have a desire to do.

MSR: On a bad day, what don’t you have a desire to do anymore?

SF: Get up and walk. When I’m not doing dialysis, and the kidney stuff is really affecting me, I don’t feel like walking. You don’t eat. You don’t have any taste in your mouth. There’s no appetite. You’re tired all the time and just want to lay there.

That’s what you really deal with. And after experiencing that for a little bit…those aren’t good feelings. It’s like, wow, the body is a very special thing. And to have toxins filtered out of your body [via the kidney] is very important. You start to do the things you’re supposed to do and things you should’ve been doing anyway. And that’s what helped me in the beginning.

MSR: Let’s talk about where things stand now. What happened that’s caused you to open up more about your kidney failure?

SF: Well, I was put on dialysis [two years ago]. So that takes up a lot of my time. But I do PD [peritoneal dialysis, a self-administered procedure] because it gives me a little freedom to do things at home.

They give you a machine, teach you how to use the machine and hook it up. The solution, which is actually sugar water, you put in your abdomen, the peritoneal, which is the space between abdomen walls and muscles. The water solution dwells in your abdomen and flushes out toxins.

MSR: You do this every day?

SF: Yeah, as my kidney function failed more, I had to do more. Now I’m doing it nine hours when I sleep. When I go to bed, I hook up [to the PD machine], and then I go to sleep. And it’s doing its work while I’m sleeping. When I wake up, I just unhook it… I do that every night.

I’m glad PD was an option. I wanted a lifestyle; I wanted to keep my life because of the energy and the type of person that I am. I like to keep moving, keep going.

And that keeps me at my normal way…along with my blood pressure pills. I take about 12 or 13 different pills each day right now that deals with different things my kidneys can’t deal with. But once I’m done with the regimen, I’m out and about for that day.

MSR: Can you talk about the most recent health scare?

SF: Well, my potassium was high and I didn’t know what was going on. My legs gave out, just totally gave out, and I broke my foot. I was walking in the living room one time, and it happened another time while I was in the shower.

I was thinking, “This is it. I’m dying. This is what it’s going to be like.” But I said, let me gather myself. That was always important — not to panic. Then the phone rang and I had no way of getting to the phone. I had to crawl from the tub and eventually called my son who called the ambulance.

It was scary and kinda funny because while on the floor I thought of every commercial where they say, “I’ve fallen and I can’t get up!” [Laughs]

MSR: So you were placed on a donor list four years ago. Do they check your family first for a match?

SF: Yeah, my sister and other family members have been tested [and were unable to donate for one reason or another]. A couple people in my family drink [heavily] and that didn’t allow them to be good candidates. My sons are being tested now. My daughter got tested once… and is going to get tested again.

The thing about being a donor, there’s a mental aspect to it. Mentally, you have to be prepared. They take you through tests to see if you’re able to handle it.

MSR: So you’re hoping for a live donor as opposed to a deceased donor?

SF: Yes, a live donor would be more beneficial for me right now. There’s a better chance of the kidney lasting longer with a live donor… Long-term use of dialysis wears your body down, and the only way to get off dialysis is to get a donor.

MSR: So if a person wanted to get tested, how would one go about it? What’s the first step?

SF: There’s a number to the University of Minnesota donors and you would call them and let them know that you want to be a live donor. And they would ask you specifically who you wanted to donate to and then they would start that process.

They’d call you in to take tests, take you through an extensive checkup, an exam, and then they’d just go from there to see how it matches. I always say that even if you’re not a match, just going through it and getting that examination of your body is well worth it.

Also, people who donate are put on a priority list in case something happens to their kidney; they’re given priority to receive another kidney.

MSR: Does the person donating need to have insurance?

SF:  Nope, my insurance will cover it [the tests and surgery].

MSR: So what’s been the most surprising thing about this process?

SF: Learning about the body and its functions, what the kidney actually does. Technically, I mean. Seeing that, wow, if this doesn’t work, this will happen. And you think about how many people who walk around and have no clue what’s going on with their body.

Also, I have to say, some of the reaction from people, once they know of your kidney failure, has been surprising. It’s all this, “Oh, you’re sick!” I’m like, man, as long as I’m taking care of myself, I feel fine.

Don’t treat me differently because you think I may not be here in a while like you can see my death coming. I get up and go… Even under these conditions, I’ve been to Africa twice; I’ve been to the West Indies, Jamaica, you know, I travel with it. I always say I’ve got a million more miles to cover.

MSR: OK, so what would be most helpful? How would you like people to approach you?

SF: It’s OK for people to ask how I’m doing because they know the situation. But just treat me regular. We can still laugh and joke and have a typical conversation. I like to say, life is a process. You’ve got to keep moving. Just keep moving.

For more info on kidney failure, go to bit.ly/UofMKidneycare. To learn more about becoming a kidney donor, call the University of Minnesota at 612-625-7010.