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.
"You also live in this 'I'm grateful I got an organ' thing. It's psychological -- it's a whole gamut of things. For the first time, I really want a pancreas, and I'm afraid to want it because with the kidneys I kept living and felt pretty good, but I'm starting to not feel good. I know if I get a pancreas I won't have these problems. My husband wants to go out and do things and I don't feel good, so I feel guilty. On the other hand, you feel grateful that you've got organs. I mean, how many people get three transplants? So there's this ambivalent guilt, luck, happiness -- a lot of stuff. I believe in this, but it's hard to be on this end, where you want one.
"On the holidays, for the last couple of years, I've thought, 'Oh, it's Christmas, this is when everybody...you know [have accidents]. At the holidays, they get the organs of brain-dead people. But I'm a critical-care nurse. We used to have dead people that they were keeping alive. At that time I wasn't desperate for an organ, but it's hard to deal with that. You're aware that's how yours got to you.
"There's a lot of cultural things people don't understand about organs. I never thought of this as an organ recipient, but as a nurse I found out that people think if they are designated as organ donors, we won't take as good care of them. I was shocked. I had no idea that was a thought people had. I was really na�ve."
This jumble of feelings sometimes taints Hotz-Siville's hopes for the future. "I'm scared. I try to put it in God's hands, because I've probably lived beyond what I should have. I've been really lucky, but I hope it will make my life go longer and be better. That's why I keep active and try to do things to help others. Not just because I have an organ -- I enjoy doing it. I think it will make me feel better, and that's a selfish feeling, in a way.
"I look forward to feeling better. My eyes are getting really bad; at night it's harder to drive. There are things that remind you every day.
"Since my kidney transplants, I feel more normal. I don't have to go to dialysis, I can do what I want. When you're in dialysis, you can't drink anything, and there's so many foods you can't eat -- everyday food. And with diabetes, they require two opposite diets, and you itch all the time. It's miserable.
"This is the first time I had the [donor's] family contact me -- from my last organ. We are allowed to write them, and every time I start to write them I start crying. It's hard for me to write that letter. Then I got this letter from them, and the one-year anniversary was coming up, and they want to meet all of us -- their son evidently donated organs for a lot of people. So, I do want to meet them. In fact, I'm looking forward to it.
"I run around a lot in my frustration and anxiety and hurt -- I don't want to start crying -- I'll say to my husband, 'I'm not going to be around a long time.' He's 38 and healthy. He's focused on his work -- not on living day-to-day, you know, 'I've got to make money so I can retire later.' I think I have a fear of death in a way that I'm not in touch with yet, but I do throw it up a lot, which I'm sure is hard on my husband."
Through all the hopes and fears, the recurring notion of "luck" seems to haunt Hotz-Siville. "I was raised religious, but I got away from it for a long time. My best girlfriend was a nurse, like me; she had diabetes, like me, and was waiting for a kidney transplant. She got one and it lasted two days. I got two and she got none. She passed away about three years ago. That was one of the hardest things for me. We had the same exact thing and I feel guilty.
"I watched her get religious at the end. So I'm a little hesitant to get too religious because it seems like if I pray to God for an organ, then I'll get one. What I'm doing now is studying the Bible to learn about it. I ask myself, 'Why have I been this lucky?' I don't really see myself as someone who has had to go through a lot."
Perhaps Hotz-Siville's attitude is best illustrated in the way she faced her wedding last May. "I was going to have a catheter put in for this peritoneal dialysis, and I walked down the aisle with a big catheter in my neck and one in my stomach, and the doctor said to me, 'Julie, you probably want to wait [for a transplant] until after your wedding.' I said, 'I'd just like to keep going.'
"I believe that you have to just keep moving on, and things happen like they're supposed to. That's been my coping mechanism. It doesn't mean that I'm always positive, but I feel like I've been lucky, and that's why, with this pancreas, I have to take my chances. If it's meant to be, I'll get it."
In 2002, Hotz-Siville got a new pancreas in what appeared to be a successful surgery. “I was diabetic for so many years that it was actually hard to get used to not having diabetes!” After one year, how- ever, her body rejected the organ. “It was just about the time I got used to it. It was a slow rejection. I didn’t get really sick, it just kind of quit working. One day I woke up really thirsty, and I hadn’t been checking my blood sugar, because I didn’t need to. So I checked it and it was really high.” Her doctors tried to save the organ with intravenous medications, to no avail.
Undaunted, Hotz-Siville is waiting for an islet cell trans- plant, an experimental treatment that should soon be available locally. In islet cell transplants, insulin-producing beta cells are taken from the pancreas of a cadaver and injected into the liver of the recipient. In successful trans- plants, the recipients begin producing their own insulin as the cells reproduce. Hotz-Siville says that Scripps is ready to go with the procedure, the only obstacle being funding. Until then, Hotz-Siville is confident. “I’m doing great.