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Words like “The Edmonton Protocol” and “islet cell transplants” are ones that people with type 1 diabetes have read with great enthusiasm over the years.  When news of the Edmonton Protocol was first released, many wondered when they would be able to sign up to be cured.  In the summer of 2007, I learned that this was a therapy and not a cure.

What is an islet cell transplant?

An islet cell transplant requires the isolation of islet cells from a donor pancreas.  Approximately 500,000 cells are isolated from one donor.  They are then transplanted into a waiting recipient. Each recipient requires at least 300,000 cells and will need a second transplant within a few months of the first to successfully reduce or remove the need for injected insulin.

One Step Up From a Lab Rat

I was recently given the opportunity to learn a lot more about the Edmonton Protocol and the people who have received islet cell transplants.  Donna Marcelissen asked me if I would be interested in reading her book “One Step Up From a Lab Rat”.  It was a self-published book about going through the transplant process, what led her there and what happened after. I jumped at the chance to learn more and was amazed by what I read.

The experience of an islet cell transplant recipient

Donna had had type 1 diabetes for over 20 years before getting her first islet cell transplant. In her book, she explains that her successful business had to be scaled back over time because of severe neuropathies of the stomach, chest, hands, and legs.  She was using injected Gravol daily simply to be able to function.  She also was going blind despite 23 eye surgeries and was hypoglycemic unaware.  Donna stated that “most people believe that insulin and diet are all that a diabetic needs to follow in order to live a healthy, complication-free life….however, this is a disease and how the body reacts to it is not predictable.” My heart broke.

Even though Donna was experiencing incredibly debilitating complications because of type 1 diabetes, she was cautious about subjecting herself to the Edmonton Protocol. She was one of the very first thirty-five people to receive this treatment.  She knew very little about the process and there was no one to ask if the challenges would be worth the results. As Donna filled out forms and subjected herself to further testing to see if she was an eligible candidate for the process she began to fear not being able to have the transplant.

 “This transplant would alleviate the guilt of feeling there should be something more I could do.  We could begin to make future plans.”

The financial burden of islet cell transplants

Donna Marcelissen lived in Ottawa and had to relocate to Edmonton for at least one year.  They had to pay out of pocket for a second home and all of its expenses in Alberta while continuing to maintain their family residence in Ontario. Donna and her husband were also responsible to cover the $3000 airfare to fly at a minute’s notice to Edmonton to have the first procedure done.  There were also drugs that would cost her over $35,000 per year that had to be covered. 

Between her income and her husband’s, the Marcelissens were able to cover the expenses associated with Donna’s transplant but in her book she brings up two very valid points… “Should money be the deciding factor as to whether someone should live or die?” and what were the cumulative costs of all of the complications she was experiencing? Surely the cost of procedures, medications as well as a significant reduction in her taxable income were all far greater than the cost of covering islet transplant therapy.  

Donna tells me that the procedure itself is no longer covered by provincial governments. “Capital Health covers their constituents.  The government of Ontario refuses to cover it.  It is only through applications and special access that the possibility transplantation exists for individuals.  The costs of medications, staying in Edmonton while waiting for the procedure, and traveling (by air) are not covered, however.”

Donna Marcelissen’s story is amazing

As you read Donna’s story you struck by many things.  First is her strength and courage.  The pain and suffering that she experienced both before and after her transplants will bring you to tears. 

As Donna writes, you are compelled to hang on every word. She describes her first breakfast reading after the procedure in exquisite detail. 

Her pre-breakfast reading was an incredible 5.2mmol (94mgdl) and she treated herself to a glass of cranberry juice.  This was a luxury she hadn’t afforded herself in 21 years because of the high fructose and glucose content. “It was sumptuous, with a fragrant, ripe sweetness that left a tangy aftertaste to linger on my tongue.  Flowers in my mouth…”

By Donna’s second transplant, she enjoyed a longer period of time completely insulin freedom.  In the book One Step Up From a Lab Rat, she also shared the incredibly emotional experience of having some of her vision restored as her blood glucose levels stabilize into a normal range.  Her descriptions made you part of the experience and you could feel her joy.

Despite the highs and lows, Donna states that transplant recipients feel an obligation to their donors to do the very best with what they have been given…a gift of life. With this book and through her subsequent work with groups like Diabetes Canada, the Juvenile Diabetes Research Foundation and  DRIFCAN, Donna has done amazing things with her gift of a new life. 

Life after the Edmonton Protocol

Donna Marcelissen has had three islet cell transplants to date.  The option for another “top-up” is still available to her but she told me that she isn’t certain that she is ready.  “I have had my immune system greatly suppressed (Leukopaenic ) for each of the three transplants – I’m not certain I want to undergo that again. But never say never.  However, being able to say that I feel like I have an option is a good indicator that I am doing so much better. I have had a reprieve three times from this horrid disease.   I do deal with some stressful complications from long term immune suppression medication use – but I try to put it into perspective.  Issues arise, I seek medical help, learn to cope and work on moving forward.”

Final Thoughts on One Step Up From A Lab Rat

One Step Up From a Lab Rat is an incredible read.  You will find yourself alternating between wanting to turn the page to see how she is doing and having to step away because of the sheer depth of emotions that you are feeling. Donna reminds us that “Insulin is not a cure. It does not even sustain some.  Complications are not just from neglect but they can be the nature of the disease.”

To purchase your copy of One Step Up from a Lab Rat, click on the button below. All proceeds from the sale of this book go to the DRIFCan to continue the work of the Edmonton Protocol.

For more great reads from people living with diabetes, check out our diabetes books page.

No one likes to get sick.  We take our vitamins, use proper handwashing techniques and get our flu shots all to avoid getting any of the colds and flu bugs lurking around.  Despite our best efforts, many of us will still find ourselves under the weather. That is why it is important to keep your sick day protocol nearby so that you know how to manage your type 1 diabetes when you are sick.

When you were first diagnosed with diabetes, your clinic or doctor probably gave you a huge packet of information.  Besides telling you about high and low symptoms and when to take your insulin, there was most likely also a detailed sheet on what to do when you get sick. 

Click below to get our sick day protocol ebooklet.

Here are some of the things that you need to remember if you are sick and have type 1 diabetes.

Below is general information regarding sick day management. It is not meant to replace the advice of your healthcare professional.  Should you require further information regarding your condition or treatment, PLEASE speak with your healthcare professional.

Take your insulin

If you are sick and even vomiting, it is important to continue to inject your insulin. As your body works to fight the bug, your blood glucose levels will often run higher than normal and insulin will be vital to keep your readings in check. If you are on an insulin pump, you may have to temporarily increase your basal rates.

If you are unsure of how much insulin to take or how much of an increase you need, remember to check the sick day protocol prescribed by your diabetes team or contact your doctor for specific instructions.

Try to stick to your meal plan or get some solid foods into your system

If you are on a specific meal plan, try to stick to you if you can.  If you are having trouble eating, try bland foods like unsweetened apple sauce, regular gelatin, toast, or crackers.  If you can’t stomach bland foods, try clear soup or bouillon that contain salt.

If vomiting continues for any amount of time, contact your doctor to see if he/she would advise the use of products such as Gravol or Zolfran. They may be able to reduce nausea.

Stay hydrated

Staying hydrated is a huge thing for anyone but especially for those living with diabetes. Try to drink 6-8 ounces of fluids every hour.  Switch back and forth between drinks that contain sugar and drinks that do not. For example, for one hour, drink regular fruit juice and soft drinks. The next hour, drink sugar-free soft drinks, tea, or water.

If you are unable to keep liquids down, contact your doctor or head to the nearest emergency rooms for IV fluids.

How to handle low blood glucose levels when you are nauseous

Rescue doses of glucagon can be used to help bring back up blood glucose levels when a person with diabetes is unable to consume or absorb carbohydrate because of nausea, vomiting or diarrhea and blood glucose below 4 mmol/L or 72mgdL. 

Contact your doctor or diabetes team to see if they recommend the use of rescue glucagon when ill.

How to use rescue doses of glucagon

According to the instructions from the ADA, you should draw up your mixed glucagon in a standard U-100 insulin syringe.  

Children under 2 years of age should receive 2 units of glucagon. Children 2-15 years should receive one unit per year of age up to 15 units. Those over 15 years old should receive a maximum of 15 units.  Always check with your diabetes team before implementing this protocol.

Blood glucose levels should then be monitored every 30 minutes for the first hour and then hourly after that.  If the blood glucose levels have not raised over 5.5 mmol/L (100 mgdL), you can repeat the process. Discard any glucagon not used within a 24 hour period.  If blood glucose levels are still not responding, seek medical attention immediately.

When should you check for ketones

Be sure to keep a close eye on blood glucose levels when you are sick either on your Continuous Glucose Monitor or through regular finger pokes. If you have had consecutive high blood glucose readings or are vomiting, you should check for ketones. This can be done through blood ketone strips or by using urine on keto strips. While the urine strips are less expensive, there is also a time lag in results. For quick and accurate ketone readings, it is advisable to use a blood ketone meter and test strips.

When to contact your medical team?

Contact your doctor or diabetes care team when any of the following occur:

• Your sick-day management protocol dictates that you should
• If your blood or urine tests positive for ketones or if you are vomiting repeatedly
• If you become short of breath, excessively sleepy, have chest pains, fruity smelling breath or dry lips
• You have had a fever for two days
• You have been throwing up or have had diarrhea for 6 hours
• You are unable to keep any fluids down
• Blood glucose levels are way over target even with additional insulin
• Blood glucose levels are under 3.9mmol/L (70 mg/dl) and are not responding with treatment
• You have moderate or large ketones
• You are not sure what to do

Sick days are manageable

Being sick with type 1 diabetes is a serious occurrence. It is vital that you carefully monitor blood glucose levels and watch for ketones. Stay hydrated and keep in contact with your diabetes team. When in doubt, go to your local emergency room for assistance. A person with type 1 diabetes who is sick can quickly become dehydrated and go into diabetic ketoacidosis.

Be prepared for your next sick day by downloading our sick day ebooklet.