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Edmonton Protocol Participants Speak

Pioneers Discuss Life After Diabetes


Dec 1, 2001

Islet.

After 40 years on insulin, Bob Teskey, 56, could no longer keep his blood-glucose levels under control. As his condition worsened, his hypoglycemic (low blood-glucose) episodes became more and more intrusive on his life. Teskey talked to his doctors, but there was nothing they could do except tweak his insulin regimen, which did not solve the problem. He continued to collapse unexpectedly, as his blood-glucose levels dropped without warning.

Then, a little over two years ago, his endocrinologist told him about a research study being conducted at the University of Alberta, in Edmonton, Canada, called the Edmonton Protocol. There, they were transplanting human pancreatic cells into the livers of type 1s. A requirement for taking part in the study was that participants had tried—and failed—to control their diabetes using conventional methods. Teskey was accepted. He and 22 other type 1s underwent the Edmonton Protocol.

Today, 70 percent of these patients no longer take insulin. Teskey, one of the first Edmonton Protocol recipients, has been off insulin for 28 months.

"It is remarkable beyond belief," says Teskey, "because [I was going] through life with insulin-dependent diabetes, simply accepting that the problems were going to multiply. So to find yourself in a very short period of time with normal glucose levels is quite remarkable."

A Simple Procedure

The operation itself is relatively painless, and takes about 20 minutes.

"You're awake," says Laurie MacDonald, a 41-year-old who was type 1 from age 11 until her transplant 15 months ago. "They give you a drug through an IV that is supposed to make you a little dopey. Then they give you a local anesthetic—on your right side—and they make a little incision. They put a catheter in there—about the width of your forefinger—and they feed it through your liver."

Using x-ray technology to navigate, a radiologist sends the catheter into the hepatic portal vein—the main vein in the liver.

"Once they are into the spot they are happy with, then the surgeon comes in and has the honor of pushing the plunger," says MacDonald. "He's got all the cells in a huge syringe. It looks like a horse syringe. They slowly push that stuff into the vein, and then the cells are housed in your liver. And then when they are done, they finally take that thing out, and they just roll you on your side."

After the islets are injected, patients are instructed to stay on their right side for four hours.

"Within 12 hours, you are out, assuming everything is okay," says MacDonald. "They do an ultrasound to make sure there is no internal bleeding. Then you are as good as gold! The following day, I went to work out."

This operation is done two and sometimes three times over the course of several months. For three months after the transplants, participants take anti-viral drugs to prevent infection and pneumonia along with very powerful anti-rejection drugs. After three months, the anti-virals are eliminated, but participants must take a cocktail of two anti-rejection drugs for the rest of their lives.

It is because of these drugs and the risks they create, that researchers say this is not a "cure," but an "exchange." The drugs have minimal side effects in the short term, including mouth sores and thinning fingernails, which go away after a few months. Some participants also reported increased blood pressure, for which they also have to take medication. The long-term effects of anti-rejection drugs are largely unknown. However, they are known to raise the risk for cancer.

All of the participants interviewed believed the potential threats of the anti-rejection drugs were balanced against the dangers of living with out-of-control diabetes.

Bryon Best, who was diagnosed with type 1 diabetes when he was in his first year of college in 1962, had what is commonly termed "brittle diabetes," and was completely unable to control his blood-glucose levels. Like Teskey, the skyrocketing highs followed by the abysmal lows were more than inconvenient for him.

"My life was helter-skelter," says Best. "[I] couldn't live life from day to day because [I] couldn't predict from day to day what was going to happen. [I] couldn't predict an hour in advance."

What the Procedure Has Done for Me

For some, there were other concerns that went into the decision to undergo the experimental Edmonton Protocol procedure.

Gilles Collins, who was diagnosed in 1962 at the age of four, wanted to escape hypoglycemic unawareness, but he also was concerned about standard diabetes complications.

"I thought to myself that being on an [anti-rejection drug] might increase the chances of developing cancer slightly, but the detrimental effects of diabetes, and the deterioration of organs, are a far greater [concern] to me than the chances of developing cancer."

It seemed obvious to Collins that the operation was worth the risks.

"I thought I should start cleansing my body from the effects of diabetes immediately, and then, if they come up with something that doesn't require the need of taking anti-rejection drugs, I'll be one step ahead of the game."

Twenty months later, Collins is already feeling the effects of being "diabetes free."

"I feel great. I've toned up. I used to have ‘love handles.’ I've just trimmed up. I just can't believe how good I feel. The only thing it hasn't done is brought any follicle regeneration on my scalp. Otherwise, I am physically fit. I have the body of a younger man."

Other participants said they, too, had experienced great physical benefits, even beyond the freedom from the highs and the lows.

"When I was on insulin, if I skinned my lower shin it typically took a year to heal," says Teskey. "I noticed this summer that I skinned my shin a couple of times, and it was about three weeks to heal up. That's a kind of a dramatic change in how well your body is functioning."

Mary Anna Pokerznik, a 31-year-old who was diagnosed with type 1 diabetes at age 11, says the biggest effect the Edmonton Protocol has had on her life is the emotional liberation after decades of living with a disease that became impossible to control.

"Freedom is the only word that I can use to get some kind of idea across on what the difference is," says Pokerznik. "Before, it was a real captivity, and now it is a real freedom to be alive."

On several occasions, MacDonald says, she had talked to her son about her death.

"[Just] to prepare him," she says. "I never thought I'd see him graduate from school."

Collins says he has been given a "second lease on life."

"The quality of life has just increased tremendously. Having gone through almost two years without having had a reaction, it's hard to express in words—it's just fantastic! I think the greatest rewards are not having any highs and lows."

Old Habits Are Hard to Change

Some of the new-found freedoms that the participants marvel over are much less dramatic, the kinds of things that only other people with diabetes can appreciate. Most of the participants didn't even mention freedom from needles as particularly important, and none of them have any interest in sweets. Instead, they appreciate the smaller, day-to-day freedoms of non-diabetic life.

MacDonald says, "I'm not afraid to go to sleep. I can take a nap if I want to."

Pokerznik says it took her several months to actually start to relax and say: "Oh, it's five o'clock. I don't have to eat. I can actually wait until seven o'clock when everyone else eats."

"I always had to know what time it was—either to do my blood test or make sure I was eating on time or exercising on time," she says. "I found diabetes very confining and restricting—so many rules to follow. Before, it seemed like so much effort, and even that didn't work. I really, really tried, and I still had all these awful blood sugars. That was the worst part of it. I always felt like I was doing something wrong. [Now] I no longer have that guilt."

It Hasn't All Been Perfect

Let's not be mistaken, though. The Edmonton Protocol is not a cure for diabetes.

About two years after her second transplant, Pokerznik noticed that her blood glucose was going up again. The cells were not functioning as well as they had for the first two years. When this happens, participants return to Edmonton for another transplant. Pokerznik went in for a third transplant and was the first—and so far only—participant to suffer from serious complications.

A blood clot developed and, in treating the clot, some internal bleeding occurred. Her liver was then operated on to stop the bleeding. She spent three weeks in the hospital, and the extensive liver surgery she went through has put her out of commission for at least six months. She has had to go back on some insulin—though much less than she was on prior to the transplants.

"I get tired really easily," she says. "I can't do too much physical activity, and there is a huge incision across my abdomen that is healing."

Pokerznik maintains a positive attitude toward her entire experience. "That's just one of the risks that goes with it. I was aware going into this that something could go wrong. That's one of the things with research—if you are gonna go for it, you have to take on those risks. I'm still glad I did it."

Pokerznik adds that, even from the last complication, the doctors came away with information on how to better improve the procedure.

"As long as something is being learned and something good came from it, that was my goal going into it," she says. "I am just hoping that some day every little bit of data they can collect will lead to a complete cure."

An Important Step in the Evolution of Diabetes Treatment

All participants interviewed voiced strong feelings that this type of research is very important for themselves and for all people with diabetes.

"This whole project is clear evidence of the importance and effectiveness of research," says Teskey. "I think we often tend to discount the importance of [being for] research. We tend to assume that these major discoveries just happen out of the blue. In fact, they are the result of many years of small building blocks. I need to remind myself, and I need to remind others, of the importance of [being for] research—being there with our dollars, being there with our government and being there to take part as participants in research studies. It is only with all of that that these kinds of advances can happen."


Categories: Blood Glucose, Blood Sugar, Diabetes, Diabetes, Insulin, Islet & Pancreas Transplant, Syringes, Type 1 Issues, Type 1 Issues



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