This is a recent speech I gave about my City of Hope Pancreatic Islet Transplant at the five year mark, and how I now live my life without Type-1 Diabetes.
My name is Roger Sparks, and I’ve been City of Hope patient for the last 5 years. One of the true joys in my life is talking about what it’s like to be a patient at City of Hope, and how they’ve changed my life in ways I could have never imagined.
I’m in a Clinical Trial for Type-1 Diabetes under the direction of Dr. Fouad Kandeel at City of Hope. In my trial pancreatic islets have been transplanted from a donor pancreas – in my case, two donor pancreases – into my liver where they now live and work just like they were part of a healthy pancreas. This trial required almost completely suppressing my immune system before and during the transplant, destroying my T-Cells, in order to allow the transplanted islets to survive and graft in my liver. It’s a remarkable City of Hope Clinical Trial, and I’m just another very typical example of a City of Hope patient, where hope is being delivered to people like me every day.
The Type-1 Journey
This is my Type-1 diabetes and transplant story. But as I share this story with you, I’d like you to see it as just one example of how lives are changed at City of Hope. So while this is very much my personal story, each City of Hope patient has their own, and we all have very common experiences.
I developed Type-1 Diabetes in my early thirties. Like most Type-1’s, I worked hard to manage it properly, and I did very well for the first 15 years or so. I saw the right doctors and endocrinologists. I was diligent in counting carbs before that was common. I moved from syringes, to insulin pens, and eventually to an insulin pump. In the later years, I used a continuous glucose monitor to monitor my blood sugar levels as technology improved.
For the last 15 years, diabetes gradually started taking more control of my life. The essential quandary of Type-1 – avoiding high blood sugar (hyperglycemia) and Diabetic Ketoacidosis (DKA) on one side and low blood sugar (hypoglycemia) on the other, were becoming more difficult to control. First, I became what we call “brittle”, which means my blood sugar could quickly elevate to severe hyperglycemia, or drop suddenly into severe hypoglycemia, with little warning. I also gradually developed insulin resistance, so I started needing more and more insulin each month to try and maintain control, which also caused me to slowly gain a few pounds every year Then, as happens with many of us, I lost all awareness of low blood sugars, so a dangerous low could hit me before I had any sense that it was happening.
I know lots of Type-1’s won’t have all the same sort of issues I had, since T1 is so different for every one of us. But I also know that low blood sugars are very serious for all of us – much more so than usually gets talked about.
For me, things quickly got quickly worse. I could be driving a car, walking down the street, or just sitting in a chair, and suddenly have a plummeting blood sugar with no warning. Low blood sugars are insidious, and here’s how it worked for me. With a slightly low blood sugar, I would get no obvious symptoms, but would begin to lose my ability to think and function normally – if you asked me a simple question, I just wouldn’t be able to answer. As it dropped lower, I’d lose any understanding of what was happening around me and often lose my ability to speak at all. I’d forget who I was or where I was. Sitting in a chair, or watching TV, I would pass out before anyone noticed. When I passed out, I’d sometimes get convulsions. In more than one instance that meant being found by a friend or family member, unconscious on the floor, at 3AM in the morning, splattered in blood after thrashing and throwing myself against a wall or headboard.
My Critical Condition
These episodes started happening more often. By mid-2015, I was having 2-3 serious hypoglycemia events a week, no matter how carefully I worked to control my blood sugar. I got to know all the local paramedics in our town on a first-name basis as they were called to my house when I couldn’t be brought around. And I had 2 serious car accidents, once totaling my car, but luckily not involving anyone else.
My co-workers also had to cope with my condition, and I had lots of rather dramatic episodes while traveling for business. I would stop talking in the middle of a presentation or a speech. Every person who worked with me felt like they had to watch over me, and they started carrying orange juice in their briefcases or purses in case I needed some quick sugar. My friends and family members were feeling more and more helpless. And my doctors were seriously concerned.
Remember again that my situation was unique to me, after having Type-1 more than 35 years. Many diabetics never have to deal with these more severe issues, and younger, or more newly diagnosed, diabetics will hopefully take advantage of technology to avoid many of them. But no matter what, we know Type-1 diabetes is a serious health issue, and we all deal with serious situations. After so many years with the disease, mine were now out of control, no matter what I did to deal with them.
Time Running Out
I knew time was running out for me. It was becoming clear that it was only a matter of time before one of my severe lows was going to leave my brain permanently damaged, or worse that I would die. I decided I needed to do something, anything, if nothing more than to try and be part of someone’s diabetes research so they could perhaps help someone else using me.
So, I began to do some internet research and found City of Hope’s website. I found a video with Dr. Kandeel, who said he was hoping – planning – to find a cure at City of Hope in his lifetime, which really got my attention. But most of all I felt his conviction, and fed on the confidence in his voice. Knowing City of Hope’s reputation, I decided I wanted to try to get into this clinical trial.
Finding Hope with City of Hope
And so, the City of Hope part of my life began. I made a phone call and spoke to a clinical research coordinator. She was my first exposure to City of Hope, and her voice and manner set a tone for the entire organization. She asked me some qualifying questions, explained the current trial phase, and outlined the requirements for me to participate. She was positive, informative, and knowledgeable, but most all, she was caring and hopeful. She planted what I call the “City of Hope seed” in me, which slowly began to grow with each person I met.
That first phone call was followed quickly by a group meeting with Dr. Kandeel, Dr. El-Shahawy, who would become my City of Hope doctor, and several other doctors and administrators. Each one of them treated me with the same care and concern, but most of all each communicated hope. It’s a basic part of literally every single person I’ve met at City of Hope – at the time we patients so desperately need help, each one of them gives hope to lift us up.
Waiting list, last hypoglycemia, and Transplant
In December 2015, right before Christmas, after a few months of tests, any many more low blood sugar episodes, I was accepted into the trial and went on the organ donation waiting list. Like so many people, I didn’t really understand the role that organ donors often play in clinical trials. These extraordinary people at the end of their lives give the gift of their organs to research so that other people, like me, can live better lives. I’m one of the very lucky recipients.
I received a phone call on December 31st and was told to report for surgery on New Year’s Day at 5:30 AM. I had my Islet transplant a few hours later. January 1st, 2016 turned out to be quite a day for me – not only the start of a new year, but also the start of a new life.
My First Transplant
During my first transplant, as I was on the operating table getting donor islets transplanted into my liver, my insulin requirements immediately began to reduce. I spent some significant time in isolation after the operation, since the transplant required drastically reducing my immune system to allow the implanted islets to survive, so I was very vulnerable to any minor infection. The next few weeks and months were a bit of a blur, as my insulin requirements went from 55 units a day pre-transplant to less than 15, and my immune system was re-building.
I was cared for every day by a remarkable team of doctors and nurses, and I was fortunate to have very few problems with the drugs I now required to keep rejection at bay. I steadily felt my health improve. Six months later, after many discussions with Dr. Kandeel and Dr. El-Shahawy, I had a second transplant on June 16th, 2016. We all waited to see the result.
My condition today
So where am I today? Since my second transplant almost 5 years ago, I haven’t required a drop of external insulin and I haven’t had a single low or high blood sugar. That’s always quite an emotional thing for me to say. I need no insulin pumps, no syringes, and no CGM. My fasting blood sugars are between 90 and 100 each morning, and my last A1C was 5.4. While still a Type-1, I’m basically living my life as a non-diabetic.
Thanks go to a lot of people
Believe me, I know how very fortunate I’ve been. My life has restarted. I am once again happily working full time. I am doing a lot of charity work. I play tennis 3-4 times a week, and I’m in better shape than I’ve ever been. And I now often speak to many other Type-1’s about my City of Hope transplant, what it has done for my life, and what the implications may be for theirs. Life changing is a bit too mild a term to describe what’s happened to me.
But the promise that this and other clinical trials at City of Hope offer to every Type-1 Diabetic is the most important part of this story.
So, how did this all happen? Let me give you a few examples of what healthcare is like at City of Hope.
- First, there are the organ donors and their families. The two people who tragically lost their lives are now making mine and countless others, better. They are now forever a part of me.
- Then there’s Dr. Kandeel, who inspires us with every word he says, and who’s vision and commitment make this all possible.
- Then there’s my City of Hope trial doctor, Dr. El-Shahawy, who keeps a close eye on me through every stage of my treatment.
- Then there’s the research coordinator who first welcomed me over 6 years ago and started me on this path. She’s been with me for every transplant, every checkup, every test, every difficulty, and every breakthrough moment. When I see her as I walk into the clinic, I know that everything is under control, and I am safe.
- And of course, the surgeons who injected those two lives into my body.
- Then there was my lead nurse. When I was most frightened on the morning of my first transplant, she welcomed me at the door at 5:30 am. She put her arms around me and said “We’re going to change your life today“. She was still there at 11:30 that night outside my ICU room.
- And also the ICU nurses, who, in my most difficult moments, kept me positive and safe, and comforted me when I was sick.
- And the team of nurses who now care for me through every follow-up treatment and test. They wrap me in a warm cocoon of care and make me feel like nothing bad can happen to me that they can’t resolve.
- And the receptionists who welcome me at every visit. We patients see them more often than anyone else. They always make us feel like we’re special as they check us in for our treatments.
- Yes, and even the phlebotomists who’ve taken literally gallons of my blood. They do their work and send me on my way with a joke and a smile.
You see, nothing happens at City of Hope without everyone being involved. And all these people are led by visionaries like Dr. Kandeel. If it weren’t for them, I certainly wouldn’t be here, and we wouldn’t be seeing a cure coming.
So, with the inevitable tears I always get when telling this story, and from the depths of my heart, I thank these extraordinary City of Hope men and women. Just like they bring hope to cancer patients every day, they now bring hope for a life without diabetes to millions of people with Type-1, and our families, and our children, and for parents everywhere who are caring for a newly diagnosed son or daughter.
I hope I’ve captured for you a little about how these City of Hope crusaders are working every day to try and make these medical miracles happen. They need every one of us, right now, to step up and help them. I thank you so much for listening to my small part of this City of Hope story, and I hope it has inspired you to help.
Roger Sparks, Newport Beach, CA
How You Can Help Find A Cure
I urge you to be an Organ Donor. You can help other people’s lives at the end of yours, save lives, and help find cures for life-threatening diseases. It’s a gift worth giving, and it costs you nothing.
Donate to City of Hope and help cure diabetes. When you give to City of Hope, you are giving hope, second chances and the power to heal.
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 still looking for participants. Be part of the search for a cure, and at the same time make your life better.
Email them at: email@example.com and find out what you need to do to get in.