Perky, energetic, and alert, Julie Hotz-Siville doesn't look as if her health is in danger. Her cheerful demeanor betrays no sign of worry or fatigue. It's hard to believe that at 45 she has already had three kidney transplants and is on the waiting list for a pancreas.
"You only need one kidney to live. I had my first one for three years, the next one ten years, and then I had to go on dialysis. I was told then that I would have to wait three to six years before I'd get another one, but I was lucky and got one in nine months -- a perfect match. It was like a miracle."
Hotz-Siville's first kidney transplant came when she was 32. "I had my first two with the Mendez brothers [renowned transplant surgeons] up in Los Angeles. When I came down here it was scary. You see, I'm a nurse, and it was all unknown doctors. I've been really lucky at Scripps with a new doctor, Dr. Assad Hassoun, who's starting the pancreas-transplant program, and he's wonderful.
"I hate the term 'diabetic.' I've been a person with diabetes since I was ten. Because diabetes is a chronic illness, it's kind of like a slow death. It affects all of your organs, so it really needs to be dealt with.
"This pancreas surgery is about ten years old, but it's newer for me because I never really felt like I needed it. I felt like I was doing pretty good as I was, except for my kidneys, but now as I get older, I start feeling weaker, and there's other things that go on. I've been so lucky with kidneys that I'm open to this. But it is scary to me, because it's the unknown.
"The pancreas is kind of a new thing. My doctor at Scripps has been doing it for a long time, and some center back in Minnesota has been doing them for a long time, so it's not new to them, but it's not as well known as kidneys, heart, and liver transplants. And a lot of people get a pancreas-kidney together thing. In fact, that's really where their focus is -- pancreas and kidneys together, and that's a concern because I'm just waiting for a pancreas, and they usually get them both together."
The pancreas is an organ that secretes insulin for controlling blood-sugar levels and enzymes necessary for digestion. A malfunctioning pancreas causes diabetes, which in turn slowly damages the eyes, kidneys, nerves, and arteries.
Hotz-Siville seems aware of every possible obstacle to getting a pancreas. "People get organs when they're desperate, and this isn't necessarily a desperate situation. A lot of times, when you're getting sicker and sicker, you'll say, 'Well, I look okay, so I'm not, like, deathly,' like somebody waiting for a heart. Some doctors will say to me, 'You should be happy you have a kidney. Why do you want this?' Because I want it out! I want to feel normal like anybody else."
Chronic illness seems to be a constant of Hotz-Siville's life. "I had the classic symptoms of diabetes when I was ten. I was kind of a chubby kid, and I had flu-like symptoms during flu season. I was losing weight, drinking lots of fluids, and urinating a lot. But because it was flu season, I was told at school that I had the flu and sent home -- I almost ended up in a coma. But my mom pushed. Parents know their kids, and she told them, 'Something's wrong.' So they paid attention to me and found out that I had diabetes.
"You know your kidneys are going bad by your bloodwork. I've always been watched by my doctors, and I had a good relationship with my nurse, and they kept me from getting really sick. A lot of times you can get really sick, end up on dialysis, and all that. I just kept going because I had a good doctor and he kept watching me. He made me get on dialysis. I didn't want to, but they made me so I would keep doing okay. I had to do it three times a week. It becomes real hard to work, because you don't feel good. You have to spend three to four hours at a time every time you go. It's more of a dependent thing, being on that machine. I was on the peritoneal dialysis, which gives you a little more independence.
"When I was on dialysis, I had an insulin reaction. Dialysis caused a lot of that -- it was the first time in 10 or 15 years. I had never had those problems that I do now. When your kidneys are not working, you don't need as much insulin, and when you take it, it drops your sugar. They were almost going to take my driver's license away, and that would have done me in, mentally, because that takes away your independence. It would have been hard for me. Then I got my first kidney transplant. I had a great doctor who told me that any treatment or modality had its good and bad. A lot of people just want that kidney or heart or whatever, and they don't really hear that there's still side-effects. And the medications are hard on some people, but it's better than not having the transplant!
"A lot of people are afraid of the medications you have to be on when you have a kidney transplant, but I was lucky and didn't have a lot of problems with them. Now they're starting to affect me."
Living with diabetes and as both a transplant candidate and recipient has sharpened Hotz-Siville's sense of limitation. "I'm a person who works a lot, and I forget I have things I need to be careful about. I've never smoked or drank, but I push myself at work. I don't have children -- I decided not to have children because of my diabetes. I love kids and I love people and I love nursing. When I was little, my mom was strict with me about the diabetes. She used to yell at me, 'You're going to go blind!' And now, as a nurse, I think you push a lot of that back. You see a lot of things -- people with amputations and things like that. I could start crying at that point, because it is scary. Nobody likes to feel different, and there's this unknown that we're all afraid of. You don't know how long your kidneys are going to last. Yes, you can live on dialysis, but as you get older, you have the risk of so many other things.