Joanie Videen

Throughout her life, Joanie Videen has seen the devastating effects of diabetes.  Her uncle had it and lost a leg.  Her dad had it and she watched as slowly, toe by toe, he lost his life to the disease.  On the day before Halloween in 1991, she was diagnosed with diabetes.

At that time, Joanie was an active 35 year old woman with a busy life.  She was a school teacher, wife, and mother of two small children (ages 6 and 8).  She and her family enjoyed a variety of activities, such as water ski, snow ski, cross-country ski, and scuba dive.  She had just been certified for scuba diving and had gone on a diving trip with her husband.  When Joanie was on the trip, she noticed that her vision was quickly getting worse quickly – so, she went to an ophthalmologist to have her vision examined.  And, that’s how she found out she had diabetes.

It took about a year for her to adjust to the fact that she had diabetes.  It was hard to accept the fact that she was totally dependent on her ability to manage her blood sugar levels.  Her entire family soon became aware of the controlling and limiting effects of this disease.  As Joanie says, “the phrases – wait, I have to check my number; wait, I need to eat - became a daily occurrence.  Most people don’t have to think about the extreme effect blood sugar control has on people with diabetes and how millions of lives are directly affected by this devastating disease. “

As the years passed, Joanie’s thoughts and actions were consumed with checking her blood sugar levels.  She wanted to do all she could to keep her eyes, kidneys, nerves, heart, fingers and toes working normally.  She monitored her numbers eight routine times a day (every 2-3 hours, no matter where she was), as well as before she drove a car and with any change in her normal routine.  “The changes in routine can be as simple as working or playing more or less than expected, traveling, eating, sleeping, and illness.  They all affect your blood sugar level,” say Joanie.  She started to experience low blood sugar during the night, so she started setting her alarm once or twice a night so that she could check her blood sugar levels.  Because of her sleep deprivation, she had a harder time keeping up with her family’s activities.  “A few nights,” she said, “my husband needed to pour syrup down my throat until I woke up.”  She became afraid of falling asleep while she was driving.  So, she would check her blood sugar before driving and she would drink pop, eat snacks and have a list of things to think about whenever she drove.  Joanie says, “The only good thing about being diabetic was that I truly understood the disease and I could help my dad better understand it as well.”

When she learned about the Diabetes Institute for Immunology and Transplantation (DIIT), she started her journey to be on the transplant waiting list.  Her first rejection letter arrived in October 2000.  Then, in October 2003, she qualified for a clinical trial, so she underwent two days of intense medical testing.  The tests revealed that she had never had mononucleosis (mono).  Unfortunately, she could not receive a transplant unless she had those antibodies.  So, her family and friends helped her locate people with mono so she could try to contract the disease.  In late 2003, her father passed away from kidney failure caused by diabetes.  A few weeks later, after several attempts to contract it, Joanie was diagnosed with mono.  In March 2004, she was healthy and had the needed antibodies in her blood.  On her father’s birthday, October 14, 2004, she was notified that she was put on the islet transplant waiting list.

Joanie received an islet transplant on February 19, 2005 at the DIIT; however, not enough islets were procured from the donor pancreas to enable her to become insulin-free.  After the transplant, she remained on insulin for awhile to “baby” the cells as they settled in and learned to survive in their new home.  She didn’t have any fevers or illness with the new anti-rejection drugs and she felt great.  Joanie said that, even after her first transplant, she felt that her life had improved dramatically.  “I felt like I had a second chance at a normal lifestyle,” she said.

In August 2005, Joanie received a second islet transplant.  She has been insulin-free since November 4, 2005.  Her husband is still by her side and she is able to keep up with her kids, who are now in their early 20s.  Recently, she went on a hiking trip near Lake Superior.  And, she’s excited about an upcoming diving trip to Cozumel, Mexico.  One of Joanie’s favorite activities is downhill skiing – and she says that it is such a relief not to have to carry food and testing supplies with her.  She used to have to worry about her insulin freezing and watch the clock so that she could to move over to the side of the ski hill to check her blood sugar level every few hours.  Now, she has the freedom to ski all day with her family without thinking about these things.

She realizes that, at some point, the islet cells she has received may not work as well as they do now and she may need to take insulin again.  She said that she recommends that other people participate in the DIIT’s islet transplant clinical trials.  In her words, “I did it so that people can learn from it – why islets work, how they work.  The DIIT is one of the top islet transplant research institutes in the world and this is a great opportunity to help the medical community fight this disease.”   

Joanie credits organ donors and their families and the DIIT for dramatically improving her life.  In a letter to her donor’s family, she wrote, “There are no words that can truly express my appreciation for all that your loved one has done for my family, and for me.  Thanks to the little cells, we all have a second chance at a freedom that was stolen from us over 13 years ago!  I will always do my best to take care of your loved one’s cells, and I will always feel a connection to you.”  Joanie and her family are organ donors; some day, they hope to have the opportunity to richen someone else’s life by giving the ultimate gift.  In the meantime, they are busy living life to its fullest and enjoying their time together.