Islet transplant gives Killam woman a future
Diane Gordon, of Killam, recently underwent her second islet cell transplant, a step of what could be a three-part process, one that she feels has potentially saved her life and given her a future to look forward to.
Gordon, who is a private person, wanted to share her experience because she’s very well aware of how many people’s lives are affected by Type 1 Diabetes, and she knows many are genuinely interested in the progress currently being made in diabetes research.
“This research, and the amazing team of doctors and nurses at the University of Alberta Hospital and Islet Transplant Clinic have not only changed my quality of life, but my outlook on life,” she says.
Gordon has been a Type 1 diabetic for over 40 years. For more than four decades, she’s endured insulin and sugar highs and lows, daily monitoring, and multiple injections, up to five in one day, along with strict monitoring of what and when she eats.
Outings had to be planned around injections and meals, and any physical exertion would affect her sugar levels.
Early in 2014, Gordon lost her husband, Jerry, and says, “After his death, I realized I had not only lost my best friend and partner, but my life support.”
What she keenly realized when adjusting to living alone, was that she had lost the ability to sense when her blood sugars were low, something Jerry could just look at her and know.
“It made me mad that he was always right, when I thought I felt just fine!
“It was the nighttime lows, when he spent many sleepless hours reviving me, which scared us both the most.”
When she experiences dangerously low blood sugar, Gordon says, her brain stops working, and she feels dazed, and sleepy, unfortunately, all relatively normal feelings in the middle of the night, too. Most people would also have a physical reaction, she says, but for her, she did not.
Gordon said at that time, she became positive that it was only a matter of time before she just slipped away in the night, and would be found dead in bed.
“When your blood sugar is low, it can dip to a very dangerous level in a short amount of time.
“This thought frightened my kids. I tried to reassure them, by saying that I would be going the way many people would want to, in my sleep, not feeling anything.”
Naturally, they didn’t accept her outlook, and starting calling her daily, multiple times each day, to check up on her.
She came up with the idea of drinking a lot of water before bedtime, forcing herself to wake up numerous times in the night, and by doing that, caught a few low blood sugars. “But it was hard on sleep!”
Seeing no hope for any change in the foreseeable future, Gordon actually came to a point where she started to focus on getting her affairs in order.
Even her driver’s licence was threatened, she said, at that point.
“I did some purging of stuff in the house and shop, and in general, lived with a ‘my days are numbered’ attitude,” she says.
Family members suggested to Diane that she look into alternate forms of insulin delivery, like an insulin pump, which would replace manual injections, but she says the idea didn’t appeal to her, “I didn’t see it as a solution, just an additional headache, because it still wouldn’t take care of the issue of monitoring my blood sugar levels.”
Finally, Gordon’s sister Linda suggested she visit the Wetaskiwin Diabetic Nephropathy Prevention Clinic. “I initially agreed to go just thinking it would at least get her off my back,” Gordon says.
“Boy, was I wrong! They not only helped me get on top of my diabetes control, they also felt I would be a good islet cell transplant recipient.
“This option gave me real hope; I decided I had nothing to lose, and everything to gain.”
Gordon immediately got to work on getting accepted into the transplant program.
She remembered hearing about the U of A research, but her inquiries at that time led her to discover that only people with no other options were being accepted into trials at that time, over a decade ago.
She completed the application forms, found on the islet.ca website, and heard back from them in July 2014 to start the screening process.
“I went through every test imaginable, which all reflected good results.”
Gordon says the extensive testing ensures all potential medical issues are dealt with before the transplant.
Just before Christmas 2014 she got the news she had been approved to go on the transplant list, and got the call on Boxing Day 2014 that the transplant team had islet cells from a donor, and that she was a good match.
Islet cells are currently only harvested from cadavers.
The first step in her transplant was to weaken her immune system, so that her body would not reject the donor cells. “That was a nasty process. I remember thinking, ‘What the hell did I agree to here?’’’
Then on Dec. 28. 2014, Gordon received 692,000 donor islet cells which were put through a tube into her liver.
“Not my pancreas, because this is a dead organ in Type 1 diabetics,” Gordon says.
She says the entire process took only 15 to 20 minutes, during which time she was awake, “albeit groggy.”
Another sister, Shirley, stayed with Gordon for a couple of weeks after the transplant during her recovery, “and boy did I need her!”
Two weeks after the transplant, Gordon was taken off of insulin, and has not needed it since.
“Now I don’t have to eat when I’m not hungry,” she says. “That may sound silly to some people, but to a diabetic, it is a reality!”
Gordon is also now taking anti-rejection drugs to ensure her immune system doesn’t attack the new islet cells, and will be for the rest of her life. “I have had very few side effects [from the anti-rejection drugs],” she says, “and I’m lucky, because that’s not always the case.”
She has a number of fail-safes in place to make sure she always takes her pills, as she knows she may be putting her islet cells in danger by missing even one day’s meds, or by not trying to keep the levels of the drug consistent.
Gordon also has to stay away from people with colds or the flu, and washes her hands frequently. “I’m much more susceptible to germs now, with a lower immune system.”
In August, Gordon’s blood sugar levels started to climb a bit, and the U of A team decided to give her a second transplant. She waited a month for a match, then received a call Sept. 8, and had the procedure repeated on Sept. 10, this time receiving 410,000 additional islet cells.
“It takes about three weeks for the islets to ‘nestle in’ but the blood work shows things are working well,” Gordon says.
Gordon counts herself very lucky. She’s learned that only about 50 per cent of islet cell recipients are able to completely go off insulin.
She’s participating in a number of research projects at the same time, and says the process of transplantation is continually undergoing refinement to make the treatment more effective.
“An islet cell transplant isn’t for everyone, it is a huge commitment.”
Gordon says that some people may think that she got into the program because her son-in-law is a doctor, but says he really played devil’s advocate with her regarding her choice to go ahead with the transplant.
“He said it’s such new technology, it’s not even being taught in medical school.
“For me, it was a life-changer. I now know I can plan for a future, whatever that may be.”
Gordon says that even if her diabetes returns, she expects that it will not be as severe, and even if it does, she will have regained the physical signs and symptoms that would make her aware of having of low or high blood sugars; something she can live with.
“This has given me a future that I did not feel like I was going to have.”
Finally, Gordon recommends that everyone sign their organ donor card. “You could change someone’s life.”
Leslie Cholowsky
Editor
