On September 11, 1998, Jackie Warren Demijohn, 42, a domestic violence outreach counselor from Farwell, Michigan, took a monumental leap in controlling the diabetes she had suffered from for the last 37 years. Demijohn underwent the first-ever islet and bone marrow transplant at the Diabetes Research Institute (DRI) in Miami.
Demijohn was the first type 1 to receive transplanted islets without also having to receive an organ transplant at the same time. The islet and bone marrow cells, known as CD34+ stem cells, came from a deceased, unrelated human donor. The bone marrow cells were used in the hope that Demijohn’s immune system could be tricked into accepting foreign tissues.
One year later, although not entirely off insulin, Demijohn’s diabetes control is the best it has ever been. According to Gary Kleinman, executive director of the DRI, Demijohn’s procedure was “a good first step in the process of moving islet transplantation into an area where patients can benefit from it earlier in the course of diabetes.”
DIABETES HEALTH recently asked Demijohn about the life-changing experience.
DIABETES HEALTH: What was your life like before the transplant?
Demijohn: My diabetes had been at its worst the last three or four years prior to the transplant. I had retinopathy, painful neuropathy for 25 years and gastroparesis that made me nauseous 24 hours a day.
DI: What was your insulin regimen like?
Demijohn: I was taking 25 units of NPH in the morning and evening, and a sliding scale of zero to 15 units of Regular four times a day. I was extremely brittle.
DI: What was the transplant procedure like?
Demijohn: I had a probe placed through the bottom two ribs on the right-hand side into the liver. The probe was then put down near the portal vein [the entrance to the liver], and the islets were injected into the liver. It took all of 35 minutes, and I was administered a Band-Aid for my troubles. Five days later, I received the first CD34+ bone marrow infusion from an IV drip. The bone marrow came from the same donor. One week later, I received the second IV infusion of bone marrow. All told, I was in the hospital for 11 days.
DI: What is your insulin regimen like today?
Demijohn: Today, I am taking only 60 percent of the insulin I was taking prior to the procedure. I have been told that I should be off insulin entirely in a few months.
DI: Why are you not off insulin now?
Demijohn: I still take insulin because the antirejection medications cause my blood sugars to rise. My doctors are beginning to wean me off the antirejection medications and steroids, and when that is complete, I should be off insulin as well.
DI: What were your HbA1cs like before the transplant and what are they like today?
Demijohn: My most recent HbA1c was 6%. Before the transplant, my HbA1cs were always around 11%. Today, my blood sugars are between 85 to 113 mg/dl every morning, and my retinopathy is better. My neuropathy is also gone, and the gastroparesis has improved remarkably.
DI: What antirejection meds and steroids do you take?
Demijohn: I have to take Prinival [an ACE inhibitor] to control my blood pressure, but my kidneys have no trace of protein in them at all. Before the transplant, I was in the beginning stages of kidney disease.
DI: Are there any side effects from the antirejection meds or from the transplant?
Demijohn: My hands tend to shake, but other than that I have had no side effects. I was telling my husband that the worst side effect of the transplant procedure was having to go to Miami [the Diabetes Research Institute] every three months. Now, I only have to go down once a year.
DI: What is your life like today?
Demijohn: I feel as good today as I did in my late 20s. If I follow my diet and do what the doctors tell me to do, I am rewarded with good control. That’s been the best part of the transplant. Before the transplant, no matter what I did to control my diabetes, I was never rewarded.
DI: What has the media attention been like in the year since your transplant procedure?
Demijohn: It was covered by NBC, ABC and CBS. It was on the front page of The Detroit Free Press. I got calls from people all over the country saying that they read about me in their local paper.