A Type-1 Diabetic for 35 years, I no longer take insulin and my life has abruptly and dramatically changed – all because of a City of Hope Clinical Trial.
90 days after my second pancreatic islet transplant, I need no insulin, my blood sugars are normal, and I’m starting to experience a new life.
I am remarkably lucky. I’ve had two transplants – on January 1, 2016 and June 16, 2016. I’m now totally “external insulin” free since my second transplant. Transplanted islets – over 1 Million in total now, from two donors – reside in my liver and produce insulin as if they were a natural part of my body. I’m having no serious reactions from any of the many drugs I am given to prevent rejection. I’ve not been sick, nor had any other serious complications.
What I am having are lots of really incredible, life changing, moments.
My Life – Before and Now
My life has suddenly been divided into “before” and “now”. “Before” includes over 35 years of living with Type-1 Diabetes. “Now” covers the last 90 days, the short time since my 2nd transplant. The differences couldn’t be more surprising.
I wear an Insulin Pump 24 hours a day, attached to my belt or to the waist band of my trousers or shorts. The pump is attached to my body via a small flexible plastic tube that ends with a needle inserted just under the skin of my abdomen. I change the insertion point every 3-4 days. I manually calculate the carbohydrates in each meal I eat. I enter this count into my pump, which then injects an estimated required insulin dose into my body.
No Pump. No Attachments. No site changes. No Carbohydrate Counting. No Insulin Injections.
- I’m having 1 to 2 serious low blood sugar (hypoglycemia) episodes every week. These are due to emotions, exercise, insulin resistance, and a variety of other unknown and uncontrollable factors that every Type-1 experiences. Living alone, I worry every night at bedtime about a serious reaction when sleeping, from which I may not recover. I have several serious episodes every few months requiring paramedics, or where friends have to step in and help me.
- No hypoglycemia, ever.
- I’m about 30 pounds overweight. Insulin resistance, which most long term diabetics experience, has resulted in me requiring more insulin every day. I’m now up to almost 60 units per day. I have a healthy diet, play tennis 4-5 times per week, but, at least for me, more insulin results in gradual weight gain, no matter what I eat or try to do about it. More insulin also means more potential long term complications.
- I’ve lost 35 pounds, with no change in diet or exercise, and I’m no longer worrying about long-term complications.
- For years I’ve spent an incredible proportion of my income on Diabetes care. This cost includes pump supplies, infusion sets, insulin, and blood testing supplies. Insulin is almost $275 per vial, and I typically use 3 per month. Insurance covers part of the cost, but I often find co-pays and basic insurance approaching $2000 per month, which savages my finances. Medicare has relieved some of this cost – all insulin and infusion sets are now covered – but I am still required to get the most expensive Medicare supplement plan to cover other issues.
- No pump supplies and no insulin. After one year, however, anti-rejection drug cost will become my responsibility. This cost, which will be partially covered by insurance, remains unknown.
- My blood sugar levels fluctuate badly. I have lows of 30 or less, and highs in excess of 300, no matter how carefully I control what I eat and how much insulin I take. My A1C’s, a measure of blood sugar control – lower is better – are often higher than 7. Low blood sugar means hypoglycemia. High blood sugar means damage being done to my eyes, circulation, and internal organs.
- My most recent A1C is 5.2. This is better than my endocrinologist’s, a non-diabetic, who has an A1C of 5.4. Truly amazing.
Other Unexpected Surprises
- I know the pleasure of being around friends who no longer have to watch me every moment to see if a low blood sugar is imminent.
- I feel healthier than I have in 30 years, and am starting to believe I might be around for a few more.
- I’ve had the joy of talking with many, many other diabetics, and seeing them respond with hope for themselves, or their loved ones, when they hear what is happening to me.
- I’ve had the amazing experience of working with some of the most gifted and caring doctors and nurses, and seeing the excitement in their eyes as they make miracles happen in my body.
- I’ve developed a reverence for organ donors, as two people who donated parts of themselves live on in me, and make my life better.
- I’ve received support from friends who I’ve never appreciated enough, and made new friends who have expanded my knowledge about this disease, and how it has affected their, and often their children’s lives.
So What Happens Now?
The transplant appears to be working, so now the objective changes. City of Hope continually monitors my progress, and adapts the drugs I am taking to determine how to make my results last as long as possible. They are using my body to learn how to make this work for all diabetics, and hopefully for a lasting cure.
There are certainly no guarantees – I may get another month, another year, or maybe another 10 years. Of course I’m hoping for more, but, no matter what, I’ve had an experience that has forever changed my life, and I feel incredibly blessed.
You may be personally interested in being part of the effort to combat diabetes. Here’s a few ways to participate.
If you are a Type-1 Diabetic, living in Southern California, I seriously encourage you to consider participating in the City of Hope clinical trial, which is ongoing. Be part of the search for a cure, and at the same time make your life better.
If you are a Type-1 Diabetic, I encourage you to consider participating in one of the many other clinical trials currently taking place.
For everyone, I urge you to consider being an Organ Donor. You can help other people’s lives at the end of yours, save lives, and help find cures for diseases. It’s a gift worth giving, and costs you nothing.
If you want to help spread the word about clinical trials, here’s how to help with an important documentary in process. The Human Trial is a feature length documentary that is currently following the first ever human trial of a stem cell derived treatment to find a cure for diabetes. The award winning co-director and co-producer, Lisa Hepner, is also a Type-1 diabetic. They are dedicated to the objective we all share: finding a cure.
God bless you all, and a grateful “thank you” for being so supportive over the past many months.