Organ donation saved Douglas resident Rhonda Hill’s life. She’s been an advocate for the Donor Alliance nonprofit since a kidney and pancreas donation in her thirties gave her a new lease on life. On New Year’s Day, Hill will represent the Donor Alliance and Wyoming in the Rose Parade hosted in Pasadena, California. Wyoming Public Radio’s Jeff Victor is no stranger to organ donation himself; he gave a kidney to his father five years ago.
While Victor gave a living donation — undergoing a transplant surgery to give up one of his organs — Hill received her new kidney and pancreas from a deceased donor. That means someone Hill never met added a little red heart to their driver’s license and when they died unexpectedly, their tragedy became someone else’s chance at a new life.
Whether living or deceased, Hill told Victor the gift of life is not an easy gift to receive.
Jeff Victor: Tell me how you came to need a kidney in the first place.
Rhonda Hill: Well, my story goes back quite a ways. I was diagnosed with juvenile type one diabetes in high school. I remember standing in the drugstore one day, and they had a list by the cash register and it said, ‘Do you have diabetes?’ and I was looking at a list, and I had every symptom list. And I was like, hmm, that doesn’t sound right.
I didn't know anything about juvenile diabetes back at that time. It was in the mid-70s. Of course, the technology wasn't anything close to what it is today. So I felt like I was against the wall from the beginning. It was very severe. I just felt like I had a two-by-four between my eyes, and spent the first year or so in shock and denial — which didn't help my physical state. It took me a long time to accept it, learn about it, take care of it. And unfortunately, it did take a toll on my body.
So by the time I was in my early 20s, I had already suffered from neuropathy and background retinopathy — my eyes weren't great. By my 30s, my kidneys went into early stage kidney failure.
JV: What was that like when dialysis had to become a part of your life?
RH: That was my biggest fear, I think, through this whole process. I was 37 or 38, and I had just heard horror stories about dialysis. I was just petrified to go on that machine. Dialysis was very painful. They had a hard time getting needles in. The needles are very large, they're very painful. They leave scars. You know, it kept me alive, but I have to say it was a miserable time. You never really feel great. It takes over your life. I went Mondays, Wednesdays and Fridays. So every other day, I ran for four or four-and-a-half hours. Oftentimes my blood pressure would bottom out and I would pass out.
So I was on dialysis for about a year and a half and had been really discouraged. The average wait, I was told at the time, was about three years, I think. And I was very lucky to get my call after only 18 months.
JV: Tell me about getting that call. What was that like?
RH: Oh, my gosh, I remember like it was yesterday. It was 23 years ago and I still remember it like it was yesterday.
I walked in my apartment and I looked over at the answering machine when I walked in and it’s blinking. And I thought, ‘It's 10:30 p.m. Whoever it is is probably in bed by now, I’ll call tomorrow, blah blah blah.’ And I remember standing at the foot of my bed, and I got to my pajamas, getting ready for bed. I had to get up in the morning at five to go to dialysis. And I just looked up and said, ‘God, I can't take this anymore. Just get me to the weekend.’ And I climbed in bed, and the phone rang. And it was Denver.
I got my life that night. That morning. That early morning of October 4 of 2000. And that call literally saved my life.
JV: What was your life like after that? How was it different?
RH: Well, the first year or so, I had so much energy I couldn't sleep. I had forgotten what it felt like to be normal. I was so sick for so long. I felt like I was 16 again. It was amazing. I can't even explain it. It was a miracle. It was like winning the lottery. Only better. I finally could plan for the future.
My goal had always been to see my son graduate from high school. He was 14, almost 15, when I got my transplant. And not only did I get to go to his high school graduation, I got to go to his college graduation, his wedding, the birth of his two sons. And now I live eight miles away from him, and I get to see him and my grandsons all the time.
The course of my life totally changed; it was totally unexpected. Something that I never counted on before and now I can say, ‘Oh, next year, we can do this,’ or, ‘I'm going to take this trip.’ I went back to school. I had a career that I never would have had. The list just is infinite.
JV: I hear a lot of my dad's own story in yours. So I got to see, you know, what life was like on dialysis. And also that change afterwards, where suddenly you can plan things, you've got energy to go do things. What do you know about your donor? Do you know anything?
RH: I don't. I know she was a woman. And I know she was 38 years old at the time. And I was 40. And at that time, that's all they could tell me for an anonymous donor. So I don't know anything about her family or anything. I kind of get jealous of you guys, because the ones that are the living donors and the families that get to meet — that must be amazing to be able to share that gift and look that person in the eye and they can thank you in person. And that's gotta be amazing. I wish I could do that. I wish I could shake her hand, give her a hug, give her a kiss, and say thank you for my life.
JV: How do you think about the weird fact that someone else's death was able to give you life?
RH: I had a lot of survivor's guilt, and I sometimes still do because she was so young. And I don't know if she had kids who have grown up without their mom; what if she had a spouse that still misses her? I think about those things.
I had a transplant coordinator back then who put it to me very well, put it to me in a very kind way — you have to think of the bigger picture, the bigger plan. She said that person was called home, for whatever reason, and would have gone anyway — regardless of whether you got those gifts or not. So if it was that person's time, and they made the decision to be a donor, then just accept that gift with all your heart and be grateful. And I truly have to believe that. She sacrificed everything to allow myself and her other recipients to go on. So I'm going to take care of that gift the best way I can for the rest of my life. And then if there's stuff left over — I don't want to be morbid, but — if there's stuff left over when I'm gone, I'm going to be a donor too.
For me, and what you've done with your dad, that's an incredible gift. I hope you know how much he probably feels indebted to you and grateful to you for the rest of his life. It's not an easy gift to accept either. You're so blessed, both of you. It's a very selfless thing to do.
JV: Well, thanks. I don't know, it just struck me as the right thing to do. Tell me about how you have gone on after that. Tell me about the advocacy work that you've engaged in.
RH: Well, I've been a little out of the loop for the last couple of years. I've had some health issues of my own. And then I lost my husband in June of 22. So that's been rough. But prior to that, I used to love to travel to some of the other towns in Wyoming. And I've mostly been visiting with people at the donor designation booths, at those events, at health fairs and such. I was also able to participate in some transplant science classes — which I would love to go back to doing that. To me, it's fascinating to see the kids and how they're really into it, the middle school kids and the high school kids. I really enjoyed doing those classes and being able to share my experience. I think that’s really cool.
JV: That is really cool. I've asked you about some grim things today but finishing up, I wanted to ask you about what you'll be doing on New Year's Day.
RH: Oh, wow. I always wanted to be famous but I didn’t think it was gonna be like this! All kidding aside though, I have the honor of riding on the “One Legacy Donate Life” Rose Parade float. I will be honored to be riding on the float with, I think, 17 or 18 other recipients. So I’ll be going to Pasadena with a staff from Donor Alliance, and my bestie — I get to bring somebody with me. And we'll be celebrating New Year's at the Rose Parade. So I think it's going to be fantastic and I would encourage everybody to tune in and see this beautiful float. I can't wait.
