YOU'VE GOT TO BE A GOOD EXAMPLE

by Marlene Hunn

My name is Marlene Hunn, from San Francisco. I've had diabetes 48-49 years, since I was five years old. The doctors think it was a few years before that I had it. Now I am legally blind.

My mother told me I was really sick, just before I was diagnosed. I had an older brother, and he was perfectly healthy. My mother remembers talking to a lot of people; nobody could figure out what was wrong with me. She couldn't reach the pediatrician there, to take care of me, so she called the local doctor, right up the street.

He said he would be there after office hours, and for some reason my mother blurted back: "I don't think my daughter is going to live that long." So he came right over, took one look at me, and called an ambulance. I was in a coma for ten days, and they were going to do an exploratory laparotomy on me, not knowing what was wrong, and one of the nurses in the operating room said, "This kid really smells bad." I guess it was the acidosis.

And so, before they could cut anything, they did the blood work, and sure enough, I had very high blood sugar. Then they started me on insulin IVs and all that stuff. This happened ten days after I had my tonsils and adenoids removed. So as they studied me longer, that came to the surface, and is why the doctors thought I'd had diabetes previously, maybe for more than a year before, and I was just living through the symptoms.

After ten days in a coma, they started me on IV insulin. I went through the typical stages: You know, my parents learning how to give me insulin injections ... actually, both my parents learned how to give it to me, and of course they were both freaking out. My mother became almost an authority on diabetes; she read everything. But she also had heard about diabetes from my grandparents, who had come over from Europe: "That was an old-person's disease, diabetics were blind and were amputees ..." they'd said. My mother kept saying to the doctor "There is nothing wrong with my daughter's legs."

She was right; it wasn't my legs. I was in and out of the hospital for at least a year, and I was held back in school, because I kept going in and out of comas and high blood sugars and couldn't quite get it stabilized. I guess back then they called it brittle diabetes ...

Syringes? You used the same needle until it rusted out. You could stick something through to make it sharper. Boy, did I hate those.

Both my mother and father tried to give me the insulin. My mother couldn't do it. She just couldn't; she would put the needle in, and then get sick to her stomach because she thought she was hurting me. From then on my father did it, God bless him, until I was about ten years old.

How did they get me to start doing it myself? They were very smart. They told me I could have a surprise pajama party one night, and I invited all my friends, because, you know, I just thought it was so cool, but my parents also said to me: "now tomorrow morning, when all you girls get up, we'll take you out for breakfast." but they said to me: "only if you give yourself your own shot for the first time, you learned how, we've practiced," so of course I couldn't let my girlfriends down!

I tested, not my blood sugar, back then, but my urine, five drops of urine in ten drops of water. I also learned how to cheat, back then. I didn't want my parents to know I had been sneaking food, but as I look back, I was probably normal. I thought it was terrible I couldn't have whatever everybody else had. Like even at Easter time (I come from a Catholic family), we all celebrated, and all my cousins got candy, but of course I couldn't have any, and I would cry, thinking "why not me?" So my parents always gave me a special treat, like a stuffed animal or something nice.

So that was good. On birthdays, they let me have a piece of cake with some ice cream just because it was my birthday. But I still always felt bad, because I saw everyone around me eating candy.

The good side was that my mother started cooking very healthy. She got rid of all the white sugar in the house. I mean, my brother is probably so healthy today because we ate so well. We ate fresh fruits, we ate vegetables, she was a fanatic about my diet. But at a certain age, probably as a teenager, I would go out and cheat. I wanted to be normal, to be like everyone else.

Through my high school years, school was ok. I didn't notice much, but every now and then my blood sugar would be really high. My doctor would kind of play, adjusting it. He was a very young guy, and we probably grew up together, learning about diabetes. He was my doctor up until my 30s, and with me through most of it. Every now and then he would say: "Well, let's try this," and "Let's try that."

In my late 30s (I had moved to California by then), I had an infection on my left foot, and an open sore. It was getting pretty bad, so they experimented with the hyperbaric chamber. You know how deep sea swimmers get the bends if they come up too fast and they have to be put in a big, high-pressure air tank?

They put me in a big tank like that, full of pure oxygen. Bacteria, like a green plant, does not grow on pure oxygen, so their experiment was to put somebody with an open wound into a hyperbaric chamber for a couple of hours a day and deprive the bacteria of carbon dioxide, to see if it would stop spreading -- while the extra oxygen encouraged my wound to heal faster. Now for me, it worked, but it was very experimental at the time. They make better machines now, but it's pure oxygen, so you have to be really careful.

At a certain point, my eye doctor asked the other doctors: "Is the wound finally healing?" and they said yes, because he said: "She is having eye problems now, she's going to lose an eye if you continue." But they said at that point: "We're going to take her out of the chamber now."

I think that treatment took three months. About a half a year later, my doctor told me my vision was being affected. We started laser treatments then, but I did lose my left eye. I still have a right eye. I am legally blind, but I get around. I use magnifying glasses, and I memorize all sorts of things.

I'm working with the Rose Resnick Lighthouse for the Blind here, and they are a fantastic, wonderful organization. They send me a reader, and I'm learning the computer through them. They have all sorts of wonderful things. We even have social events.

Anyhow, I lost my eye around 1980, and then, six years ago, my mother had a severe stroke, so my brother and I were taking care of her. We didn't want to put her in a home, and she lived for about another eight and a half years and got much better. She couldn't be left alone, so we shared taking care of her, but my doctor thought it was a lot of stress on me. He started noticing my blood chemistries changing and he said, "You're going to start having kidney problems."

I looked at him like he was crazy, because I felt great.

I was just taking two insulin shots a day at that point. I was testing my blood, and of course I hated that. Finally, a year after my mother died, I guess the stress was too much, after almost nine years, and my creatinine and blood chemistry were just crazy.

We went back to sell my mother's home, and I got terribly sick there. At one point I thought I was dying. I said to my brother: "You go get me on a plane; I want to go back to San Francisco." I really trusted my doctor at this point. He was a nephrologist.

I came home on Monday morning; Monday afternoon I was on dialysis. My doctor said two days, two treatments of dialysis, and I would feel 100 percent better, but it is a tough way to live, and he was right.

I started dialysis in '97, and got the transplant in '98. I was on dialysis for a year. Dialysis kept me alive, but I don't know if I could have taken it much longer psychologically. I was very depressed.

The one tube went in and the other one came out, that's dialysis, and your life changes. My brother got tested to donate a kidney. I had remembered years ago, as a kid, doctors would talk in front of me, and say dire things about the inevitability of serious complications. So, I was talking to this doctor and asked "Even if I get a new kidney, and my brother was willing to give me a kidney," I said "That kidney is going to become a diabetic kidney, if I don't reject it. This could happen again?" And he said yes, it could, and I said that is just insanity.

I told the doctors I wasn't going through this again, and asked them about a pancreas. They said I could put myself on the dual transplant list, told me a lot of insurance policies don't pay for it -- but suggested we worry about that when it comes. There was a group of surgeons that interviewed me, and I found out later, my doctor took a chance on me, as he thought I could handle it.

So there I was, on dialysis, and they told me I was on a transplant list. It was almost one year to the week after I started dialysis, and they didn't quite tell me I was on top of the list, but when I wanted to go home to visit my family, they suggested I stay around, instead.

So one weekend, about two weeks before I was going to go back home (I was setting up all my dialysis appointments in Cleveland), on Saturday morning, this nurse called and introduced herself. I had never talked to her before, and she asked what I was doing tonight, and I told her, "I have dialysis tonight."

She told me I needed to prepare to be admitted; that they had some organs that might be a match. So I went to dialysis that night, and later, around 10 (I was in the last group getting dialyzed on Saturday night), in walks this surgeon carrying his little freezer bag. He talks to me, and, because of my poor eyesight, they always have to get so close to me. He said: "Alright, Marlene, I'm going to go down to the airport now and pick-up your organs. We think we have a match, I'll see you tomorrow morning in surgery."

So the next day, I got the new pancreas and kidney. They said it was working immediately -- right on the operating table the kidney started working. They kept testing my blood sugars, from that day on, I have never run a high blood sugar since. I stay in the 80s and 90s.

Then I started on anti-rejection medications. I didn't realize how strong some of those were. They told me I had to come back in every few days for a blood test. About ten days into it, I started feeling weird, not sick, just weird. One night, something must have happened, I ended up on the floor sleeping; I knew where I was, I just was ... like I was crazy.

I remember the next morning I had a doctor's appointment. See, my mind was kinda' working, except nothing seemed, it was so surrealistic, the wall wasn't where it was supposed to be, I couldn't find the bathroom, I didn't realize this was the drugs interacting.

One of my neighbors took me to the doctor the next day. I got in there, I told them I couldn't walk to the doctors, and they got me a wheelchair. I went to the transplant clinic, and the head female doctor took one look at me, and started talking to me, and I must have sounded crazy. I mean my voice must have sounded like I was drunk or something. I was leaning over, I couldn't even sit up straight in the chair -- like I was falling out of the chair.

The next thing I know I was being admitted, I was being run down the hall on the gurney. The next two weeks were the weirdest weeks of my life. I remember hallucinating; they even called in a psychiatrist. They said it was one of the anti-rejection drugs, I couldn't even tell you the name of it, all it had that I remember was a number, and they said they couldn't stop giving it to me.

My brother came to visit me and he said I sounded like a crazy woman. The joke was I was having lunch with Hillary Rodham Clinton, and the whole hospital thought that was so funny. I mean I was hallucinating beyond belief. I thought all my toes grew back. I was making bets with my brother, just crazy stuff. Then paranoia set in. I wouldn't let them shut the lights off. I wouldn't let nurses come near me with a shot. I was having hallucinations of being in a wheelchair and drowning in a pool of water. About two weeks later I started coming out of it. I remember the psychiatrist coming to visit me and asking me questions: "What day is it? Do you know where you are?"

It may not happen to some people, so maybe you don't want to scare them, but it happened to me. It wasn't like a dream, because I still remember all of it. But then I started getting better and it was working and my blood chemistry was still working and I never had another episode, not for the past five years because that first year was a little iffy. I have felt wonderful.

I think it's worth going through that first year after surgery; there are maybe some bumpy spots, but like I said, I can't believe the wonderful feeling I have, sleeping through the night. I just feel so much healthier. Yes, too bad it's such a major surgery, I'm sure as things move along and as people get better at it, learn more about transplants and medication, it will be easier. But I would go through it again. I'd go through it in the blink of an eye.

My brother was willing to change his life for me. Anybody who is a donor, or anything like that ... even the family whose member gave me their pancreas and kidney, God bless them. That's all I can say, I hope they understand that, they took all seven organs from this person from what I understand, and he saved seven people.

I think education is the best thing. That's why I pass out the newspaper quarterly. I talk about it, I just talk to everybody who will listen. I try to be a good example. I would like to tell little kids it is worth taking multiple shots. When I was a kid, I thought I was invulnerable, like the rules didn't apply. How can you convince a little kid they are going to get sick in 30 years, or maybe go blind or something?

You've just got to be a good example. My parents were. Every year we went on a little vacation. I thought we were as normal as the Cleaver family. I didn't know I was different. Research and transplant and more education. There will be more and more diabetics as we get obese, that's kind of sad.

I think I had a good life with diabetes, not that I enjoyed the disease, but I think I have a full and wonderful life because I had a wonderful family. I learned as much as I could, and I learned from the diabetes, I think; but if anybody had ever given me the opportunity not to be a diabetic, I would recommend it. I would tell, up front, everything they have to go through. I took 50 pills a day at one point, and now I'm down to around four or five pills a day. If there was a way children wouldn't have to be diabetics that would be the greatest gift.