“The gathering of experts from all horizons, sharing their knowledge and data, with total confidence and trust, all aiming at the same target, is a quite unique situation in modern biological science. ”
Patrick Salmon, PharmD PhD, Lentivector Lab, Dept of Neurosciences, University of Geneva
Here you can read the stories of the patient's who are living injection free thanks to groundbreaking treatment from the Chicago Diabetes Project. With your help, we can fill this page with success story after success story while working to our ultimate goal, a functional cure for diabetes.
How My Life Was Changes by Transplantation
By Dr. Dana Webb
The generous gift of the tiniest cells changed my entire world.
Diagnosed at age 13 with insulin-dependent diabetes, I grew up with all of its baggage. It was a big inconvenience about which I cursed and yet around which I adapted. This included chores like 10 finger pricks and 3 insulin injections each day, in attempts to anticipate my changing blood sugar levels. I remember the incessant carbohydrate counting, dietary restrictions, and the nagging fears of the inevitable dreaded complications which affect so many diabetics: blindness, nerve damage, and amputation of the feet. In fact, my diabetes is the primary reason I became a podiatric surgeon, with an emphasis on helping the diabetic patient in any way I could.
However, all of these issues pale in comparison to a complication I developed about 25 years later, known as hypersensitivity to hypoglycemia (low blood sugar). Most diabetics are alerted to low blood sugar when they become sweaty, shaky, disorientated or confused by even simple tasks. Diabetics know that when confronted by these warning signs we should get some juice or something to eat. Not only had I lost these warning signs but I denied them when my staff or family intervened. I would refuse their help because “I feel fine” until I would pass out, require emergency care, get pulled over for “drunk driving,” or even go into a seizure.
I had countless seizures, usually at night. The hypoglycemic events cost me two auto accidents, the loss of two employees, and the suspension of my hospital privileges. This created constant tension and resentment at work and home. It was a harsh strain on my marriage and discouraged me from joining social and family gatherings. No matter how hard I tried, I could not prevent another incident. I hated each and began to hate myself even more for causing such anxiety to those who I loved and yet, needed so much. It wasn’t fair to me; it especially wasn’t fair to them. At times, I even considered their lives without me.
Once I was diagnosed and learned I was not alone in this nightmare, my endocrinologist prescribed the latest in diabetic gadgets, the insulin pump and a real-time glucometer. They offered hope but in the end, were of no help.
Call it chance, fate, or serendipity, but one day I stumbled across a book at a public library that was about to be discarded. In Showdown With Diabetes, the author Deb Butterfield, recounted her very similar plight. Motivated by her successful pancreas transplant, I realized that there was only one hope for me: a cure. She listed research centers in the book which I desperatlely pursued until I was accepted into an experimental research program at the University of Illinois at Chicago.
Led by a passionate and pioneering transplant surgeon, José Oberholzer, MD, and his dedicated staff; they have been transforming lives like mine and hoping to bring this elusive cure to all Type I diabetics. He heads one of the few centers performing an exciting advancement towards this goal, known as islet cell transplantation.
These microscopic cells, responsible for insulin production, are enzymatically removed from the donor pancreas and injected into my liver where they now reside and keep me insulin independent.
Since the transplant in March 2009, my blood sugar has remained normal and most importantly, I have not had a single low blood sugar event since. This incredible team and these very precious, donated cells, have taken me off the diabetic see-saw and restored the life I had 37 years ago. I can now work, sleep, drive safely, and enjoy my family again without this burdensome gorilla on my back. I have stability, and I have happiness.
Words alone cannot convey my profound appreciation for all this talented surgeon and staff have done for me and my family. So I will do all I can to provide them with data for their ongoing research in hopes that others will be cured like I was. This is the least thing I can do to thank an anonymous donor for a tiny tube of priceless cells that have transformed my life.
“I was diagnosed with Type I Diabetes just a few months after my 37th birthday and have battled the disease for 15 years. My blood sugar levels would elevate past 600 mg/dl and then drop below 17 mg/dl several times a day. The severe blood sugar swings left me physically and emotionally drained. During the past few years my disease progressed to a degree where I was no longer experiencing the physical changes that warn a person that his or her blood sugar is dropping to a dangerous level. The lows caused me to become so weak that I was incapable of helping myself at times. Without help from someone, I would eventually lose consciousness.
“The danger of being alone when the drops could occur became a worry to me and my family, and the public episodes caused great embarrassment. My life had become a roller coaster that was out of control. However, it was restored to order when I had the good fortune to learn about the Chicago Diabetes Project. I made an appointment with Dr. Oberholzer, met the Islet Cell Transplant Team and on November 13, 2007, I received an islet cell transplant. Three weeks later I was insulin free with normal blood sugars, and they have remained so for over a year.
“I now live life free from restrictions from my diabetes. I go hiking, horseback riding, traveling and participate in events that used to seem daunting because of my disease. The dedication of Dr. Oberholzer, the Islet Cell Transplant Team and the donor families have given Type 1 Diabetic patients a chance at health, independence and a future cure.”
Suzi Johnson, April 2009
I was diagnosed with Type 1 juvenile diabetes in 1972 at the young age of 13 years old. Becoming diabetic at that age had a negative psychological effect on me. When I look back, I am so appreciative and thankful to my parents for being able to deal not only with the rebel teen years, but also with trying to help me with diabetes management.
My quality of life continued to deteriorate throughout the years. Diabetes is both mentally and physically challenging. As a child, I remember that any time my blood glucose levels would be too high or low, I would have extreme feelings of guilt, truly believing these swings in glucose levels were 100 percent my fault and that I was completely to blame. My doctors in those years, reinforced my guilty feelings by saying things such as, “You need to eat better and exercise more to better control your diabetes.” Despite following my doctor’s orders I would still be out of control. I learned that diabetes management is a constant physical and psychological struggle for both the diabetic and his or her family, and it never got easier for me throughout the years.
Over the past 10 years before my transplant my body no longer recognized low blood-glucose symptoms. I suffered ongoing episodes of hypoglycemia unawareness. I felt like I was playing Russian roulette with my life, despite my best efforts. My family saved my life over and over during those years.
I was accepted for islet transplant by Dr. Oberholzer and his team but during the eight months I was waiting for the transplant I had some close calls. But, on September 14, 2005, my life changed when I received an islet cell transplant by Dr. José Oberholzer and his excellent transplant team at the University of Illinois Medical Center.
Eight days post-transplant, I became completely insulin independent for the first time in 33 years. My quality of life improved and I no longer have to be concerned about passing out due to severe hyperglycemic unawareness, because my glucose results are the same as a non-diabetic. Cuts and scratches now heal within days when it used to take months. My feet and hands are no longer cold all the time due to poor circulation. I feel 100 percent better and have boundless energy. My family can now relax because of my non-diabetic normal blood glucose results. For the first time in my life with my family I was able to take a family vacation, hiking in the Rockies!
I am very hopeful this transplant will last for the rest of my life. If it does, I know that many risks to my long-term health will be eliminated. I won’t have to worry about kidney failure, heart disease, amputation, blindness, strokes, pneumonia, nervous system disease and all manner of other problems that I know diabetics deal with everyday of their lives.
This transplant has enable me to try and fulfill one of my primary life’s goals—helping to find a cure for the millions of people suffering from Type 1 diabetes. I know that we can do it if everyone helps just a little. I hope you will do what you can.
One summer in July, about a year after finishing high school, I began losing weight, drinking a couple gallons of liquid a day and I was so tired it was a huge effort to work.
I went to see our family doctor and explained my symptoms with the hope that he would tell me I was wrong. That’s what I wanted to hear. I wanted to hear that I could stop by and see the pharmacist for a short term prescription and would soon feel better. That isn’t the way it turned out. After a quick exam I was sent to our hospital for a blood test that confirmed a dangerously high blood sugar level.
I was admitted to the hospital and stayed for nearly two weeks lying in bed. There I had blood drawn daily and was taught how to give myself shots. It was explained to me that this was necessary to stay alive and serious complications, such as blindness, loss of limbs or other serious health problems, could result if I did not take care of myself.
Since that time there have been some major improvements in learning to control diabetes. We have come from going to hospital labs once a month for two glucose checks to using a personal home monitor (nearly twenty years after my onset); from injecting u-80, suspension type insulin made from cows and pigs taken once a day, to a more modern humalog, or lantus in convenient dispensers.
In September of 2004, I had episodes of very low blood sugar causing me to become unconscious. My wife called the paramedics to help me regain consciousness. From there it became obvious to her that we were going to have to find a better way to approach my disease. Not long after asking questions and taking information from our local doctor, she found Dr. Oberholzer and his staff at University of Illinois at Chicago (UIC).
An initial consultation appointment was scheduled in which the program was explained to me. I was informed that only 8 percent of subjects tested would be able to have the procedure. But soon, a second appointment was made to further explain islet cell transplantation and to determine if I could be a candidate for this procedure. Step-by-step visits to the research center at the University of Illinois at Chicago Medical Center confirmed that my health would allow me to become part of this amazing study.
A couple weeks went by and I received a call from Dr. Oberholzer. He was calling to tell me I had been chosen for the study. I had looked forward to the call that I thought would change my life but this was almost unbelievable. Then, another couple weeks later I had another call from Dr. Oberholzer. This time he said that they had received an organ that matched my blood type, and that the islet cells looked good after they had been prepared. My wife and daughter quickly returned from an out-of-town shopping trip and we drove to Chicago. That was February 12th, 2005. The infusion went well and the procedure was simple enough that I was able to go home the next day. Tests would continue throughout the program until my second call came on March 26th to receive my next infusion of donor cells, which was just as successful as the first. The cells were working very well and my insulin usage began to steadily decline. To be safe and conservative, I took smaller amounts of insulin on a monitored schedule and then I completely stopped taking any insulin. It is hard to believe and surely something I never thought I would see in my lifetime.
I realize I am very lucky to be a part of this successful program, and continue to do very well. I enjoy the easy way of life without continuous insulin scheduling and low blood sugar episodes. New developments could help millions of diabetics like me. I continue to hear promising news from the doctors and staff at the UIC Clinical Research Center that help me, and I thank them all. I hope that my part in this research has been as helpful to the study as it has been for me. I hope they continue the good work and maybe someday a 4-year-old child can start school without the burden of unstable blood sugar and medications, leading to a normal life free of complications.
When diagnosed with Type 1 diabetes at the age of 17, I was living on my own and working to finish my senior year of high school. I thought that I had been condemned to repeat the life of my mother who had suffered for years from a liver disease that took her life at the young age of 41. Just weeks ago I myself turned 41 and I am eternally grateful for finding The Chicago Project and its group of people with the intelligence and drive to help me change my destiny. In September of 2005 I received an islet transplant and within 5 weeks I was totally off of insulin for the first time in 22 years.
The islet transplant has made such a huge impact on my life. Some of the most normal things that someone without diabetes takes for granted have now become normal to me. I can now get into a car and drive, knowing that my blood sugar will not drop dangerously low and cause me to have an accident. This also allows me to go places by myself without my family worrying that I may pass out somewhere without them there to help me. When I was pregnant with my daughter, my son was 7 years old at the time. I had just gotten out of the shower and felt very tired. I went to lie down on the bed next to my son who was watching television. My next memory was waking up to find several paramedics surrounding me. I had passed out from low blood sugar and when my son realized what was happening he ran to the neighbor’s house to tell them and they called 911. Another way that my life has changed is that I can eat a meal without taking a shot of insulin hoping that it is sufficient for the amount that I have eaten and the activity that I have done that day. Before my transplant, I was constantly working to figure out what would keep my blood sugars at a normal level and I would always feel guilty that I could not control it. I can now look forward to seeing my children grow up because my diabetes is not causing damage to my eyes and other vital organs.
My experience with The Chicago Project has been wonderful! The doctors, nurses and support staff are the greatest and I could not have wished for any better. They are available any time, day or night, and have gone out of their way to help with any of my needs. I could not have gotten to where I am now with out the caring support of any of these people and I thank them all from the bottom of my heart!
Thank you,
Kim Carlson
Your contribution will help doctors and scientists all over the world to bring an end to diabetes of all types. Together we can brighten the lives of people across the globe.
