Type-1 Diabetes – City of Hope – My Personal 3-Year Miracle
This is a presentation I recently made at a City of Hope event summarizing my 3 years in a Clinical Trial for Type-1 Diabetes. It’s my personal 3-year miracle.
I’m Roger Sparks, and I’m very happy to be speaking with you about my favorite topic: City of Hope, and what they mean to my life and to countless others.
As you may already know, the City of Hope is a world leader in the research and treatment of cancer, diabetes, and other serious diseases. I’ve had the very good fortune to be their patient for the last 3 years in a Clinical Trial for Type-1 diabetes.
I’ve been a Type-1 Diabetic for almost 40 years. Like many diabetics, after so many years the disease had pretty much taken over my life. To describe how the City of Hope changed my life, I’d like to spend a few short minutes explaining to you what life with Type-1 diabetes is like from the perspective of a diabetic, and then tell you about the City of Hope and how they are working on treatments for this disease for me and over a million other Type-1 diabetics. I’ll try to explain diabetes as simply as possible.
What is Diabetes?
There are two primary types of diabetes, called Type-1 and Type-2, and they are often confused. I’ll try to make it simple and explain the differences.
- Both are chronic diseases that affect the way your body regulates and uses blood sugar, or glucose.
- Glucose is the fuel that feeds your body’s cells.
- For glucose to be used by cells, insulin is required.
- Insulin is produced by your pancreas.
So, in very simplistic terms, the process affected by diabetes works like this:
- Your body converts the food you eat into glucose, which then circulates in your bloodstream.
- Your pancreas reacts to this glucose by producing an appropriate amount of insulin based on that glucose.
- Your cells then use the insulin to covert the glucose and feed themselves.
What is Type-2 Diabetes?
- If you have Type-2 diabetes, your pancreas and your body do not use insulin efficiently, and an imbalance occurs.
- This imbalance typically results in high blood sugar, which can cause a myriad of long term problems if left untreated.
- Type-2 is the most common type of diabetes and is caused by a combination of genetic and lifestyle factors.
- You can develop Type-2 diabetes at any age, even during childhood, but Type-2 occurs most often in middle-aged and older people.
- It typically can be controlled by a combination of drugs, exercise, diet, and lifestyle changes.
- In 2015, over 30 million Americans, or almost 10% of the population, had diabetes, and it is increasing today at an alarming rate.
What is Type-1 Diabetes?
- Type-1 diabetes is really an entirely different disease than Type-2.
- With Type-1 your pancreas stops making insulin completely.
- It starts with your immune system suddenly destroying all the insulin producing cells in your pancreas. No one is sure why this takes place.
- Type-1 is often referred to as juvenile diabetes, but in fact adults are as likely to develop it as children. Today more than 40% of Type-1 cases develop after the age of 30, as mine did.
- When insulin is not being produced by your pancreas, your body stops being able to convert glucose. We all need glucose to live.
- If untreated or undiagnosed, you typically die very quickly, as your body starts burning existing cells to survive and is unable to fuel itself. It doesn’t matter how much you eat or drink. The condition is called Hyperglycemia or high blood sugar – and it is the reason Type-1 diabetes, in the past, was often referred to as “Sugar Diabetes”.
- The disease is initially detected by an extreme amount of sugar in your blood, which causes you to urinate constantly, as your body tries to purge itself of excess sugar and excessive thirst. Your body is demanding more glucose to live.
- Diabetic Ketoacidosis (DKA) is a common acute complication that is associated with extremely high blood sugar. It can result in death quickly if untreated and unfortunately occurs in large numbers of children with newly developing diabetes, since it is often misdiagnosed and not caught early enough. It remains today the most common cause of death for young type 1 diabetes sufferers.
- Since we don’t produce insulin at all, our only solution is to regularly inject our bodies with external insulin. We use a syringe, typically several times per day. For the past few years, some of us also use insulin pumps, which inject the insulin through a small tube that we attach to our abdomen.
- Type-1 diabetics need external insulin every day, with every meal, to stay alive.
- There is no cure for Type-1 today! Once you’ve got it, you’ve got it for life.
The Statistics for Type-1 Diabetes
- 1.25 million Americans are living with Type-1, including about 200,000 under 20 years old and more than 1 million adults.
- 5 million people in the U.S. are expected to have Type-1 by 2050, including nearly 600,000 children, if no cure is found.
- In the U.S., there are currently over $14 billion in Type-1 associated healthcare costs, including lost income, annually.
- The average Type-1 diabetic spends over $1000 a month on their diabetes or diabetes care, not including insurance cost. The current list price of insulin in the U.S. is $275 for a 10 ml bottle. The same bottle of insulin – from the same manufacturer – costs about $35 in Canada and the rest of the world. Most diabetics need more than one bottle per month.
- Health insurance will usually pay a portion of this expense, but the uninsured must pay it themselves.
- Diabetes is the “ultimate” pre-existing condition. I wouldn’t expect any Type-1 diabetic to support any insurance proposal eliminating protections for pre-existing conditions, since their life depends on being able to afford their medication and treatment.
- In every state in America, because of high deductibles, or lack of insurance, more and more diabetics are “rationing” insulin, resulting in more complications and often death.
Due to these and other circumstances less than one-third of people with Type-1 in the U.S. are consistently achieving target blood-glucose control levels or “good control”.
What’s Daily Living with Diabetes Like?
All Type-1 diabetics – including, unfortunately, diabetic children – live in a continual state of ‘imbalance’. We count carbs when we eat, trying to estimate what is going into our body, and then adjust the insulin dose we inject to properly metabolize the food. As we all find out, our bodies don’t really cooperate very well with this balancing act, so we often must deal with highly fluctuating blood sugar levels. Every diabetic’s life is consumed with preventing two conditions:
- High blood sugar and potentially fatal Diabetic Ketoacidosis. Even slightly elevated blood sugar over time has devastating effects. Our vision can be permanently affected, and blindness often results. Blood circulation to our extremities becomes impaired, and often limbs are lost. In fact, almost every organ in our body is negatively affected by high blood sugar. The longer one has Type-1 diabetes, the more damage takes place.
- Low blood sugar. For most diabetics, low blood sugar is the most acute risk, since it has an immediate and insidious effect. With a slightly low blood sugar, your brain begins to lose its ability to function normally, and you lose judgement. As it gets lower, this quickly escalates into a lack of understanding of what is happening around you, you lose the ability to communicate, and often you become unaware of who you are or where you are. Things further degrade as your sugar level plummets, and you become unable to talk and eventually lose consciousness. Extremely low blood sugar can cause permanent brain damage or death. As many as 1 in 25 patients with Type-1 diabetes will eventually die of a low blood sugar complication.
So, having diabetes is not for the faint of heart, and sadly, it affects children more than adults. The parents of a child with Type-1 live with this every single day as they watch their child cope with the disease, take injections with every meal, and attempt to live a normal life. Can we all remember what it was like for anyone who was “different” in grade school?
My Personal History
- I’ve had diabetes for almost 40 years.
- I had my first serious diabetic complication 3 years after my initial diagnosis – an extremely high blood sugar after I experienced food poisoning. I was on vacation, and it escalated quickly into diabetic ketoacidosis. I remember to this day my hospital doctor saying: “We almost lost you”. I understood then, for the first time, how serious this disease really is.
Over the years, even though I was dedicated and tightly controlled my diabetes, I began to develop the serious complications that many diabetics eventually face:
- I required more insulin each day as my body became resistant to external insulin, a standard diabetic problem.
- I lost all awareness of developing lows and highs.
- I became “brittle”, which means my blood sugar would escalate or plummet over a hundred points without warning in just a few minutes.
- I began developing eye and circulation problems.
During the past few years, it became a rare week when I didn’t have a serious issue with low blood sugars.
- I would pass out and have seizures at my friend’s houses.
- My job was affected – I was an officer of an international financial services firm and I’d often find myself at 3 AM in the halls of a foreign hotel with no idea where I was or what I was doing there because of a low.
- My degrading diabetic condition took an increasing toll on my family, my marriage, and all aspects of my life.
- However, there was one good side: I got to know every paramedic in Newport Beach on a first name basis as they were called to treat me each week.
Although many of these things happened frequently over the years, they became a regular occurrence, no matter what I did to try and prevent them. If you know a diabetic, or have a diabetic in your family, all of this will probably sound somewhat familiar to you – a lot of us deal with it.
- During the year before I found the City of Hope, I found myself several times on my bedroom floor at 3AM, covered in blood from convulsions and seizures due to low blood sugar, and not knowing who I was, or where I was.
- And during all of this, I was doing exactly what I should be doing, under the strict guidance of my doctor, to try and control my diabetes.
- So, after 35 years with the disease, it was becoming clear to me that I probably wasn’t going to survive much longer.
I made a fundamental decision. Like many diabetics, I’d been following many of the clinical trials taking place in diabetes research and I decided I wanted to try to be part of one of these trials. I decided that if this disease was going to kill me, I at least wanted to try and contribute my body to the goal of “finding a cure”.
City of Hope
I started doing some detailed research and found City of Hope. I knew about their extraordinary reputation with cancer treatment, but I didn’t know about their work with diabetes. After looking at their website, I decided to call them. From the very first moment I spoke to them, I began to learn about what the word “hope” really means at City of Hope.
- It started with my first telephone conversation with a Research Coordinator, who answered my call. She made me feel welcome, excited, and she gave me an overview of their clinical trial. After a few qualification questions, she asked me to come in and talk with their Clinical Trial team.
- I met with their entire team of dedicated doctors, the people who spend their lives trying to find or develop a cure, or better treatments, for diabetes. They made sure I understood the Clinical Trial, which involved a procedure called Pancreatic Islet Transplantation, the commitment I needed to make, and my chances of success.
- Because Islet Transplantation is an experimental therapy, they take great care to protect their Clinical Trial patients from undue risk. They put me through a few months of physical tests, making sure there were no hidden situations in my body that could cause potential complications, like a developing cancer, or a liver problem, or a kidney issue, and confirming that my heart was strong and healthy enough to withstand the surgery and follow-up treatment.
- They also had me talk with City of Hope psychologists to make sure I was emotionally prepared for all outcomes, whether positive or negative.
- During this time, I was continually guided by the City of Hope nurses who helped me navigate through this journey. These nurses became my guardians, counseling me through difficult times, and letting me know that they were 100% committed to making this work for me.
What Is an “Islet Transplant” Operation?
- They take mature insulin producing pancreatic islets cells and transplant them into my liver from a human donor pancreas.
- They give me very powerful drugs to almost completely deplete my immune system, thus allowing the islet cells time to graft in my liver without being destroyed. Like magic, they begin functioning as if they were still part of a healthy pancreas.
- My immune system is then gradually rebuilt over subsequent months.
- I am required to take immunosuppression drugs for the rest of my life to protect the transplanted islets. This, by the way, will change as they develop new ways to protect the implanted cells.
On January 1, 2016, I received my first islet transplant in a 2 1/2-hour operation.
- My results were immediate – my insulin requirements were reduced more than two thirds – from 55 Units a day down to 15.
- I was in intensive care for a week, in isolation, and had to be very careful about any infection – even a cold – for several months afterward.
- To potentially eliminate insulin completely, and at my option, on June 16, 2016, I had a second transplant, this time for almost 4 hours, from a second donor pancreas.
So, what were the results and where I am now?
For the past 2 ½ years:
- I’ve required no external insulin.
- I’ve had no low blood sugars.
- I’ve had no high blood sugars.
- My body is recovering from 35 years of diabetes, and my eyes and circulation have returned to almost normal.
- I work a full-time job – really 2 full time jobs – requiring long hours and with no diabetic issues.
- I play tennis 4-5 times a week.
- I’ve never felt better or healthier.
In other words, I am functioning completely as a non-diabetic.
As you listen to me describe this miracle, look at me not only as a lucky recipient of a life changing event, but as a very small part of a very big plan at the City of Hope. They are focused on finding a cure for Type-1 diabetes, and they are using me, and people like me, to figure out how to do this safely for every diabetic.
Also look at me as many other diabetics now look at me – as a symbol of hope for their lives, allowing them to see a future when no one will take daily injections, or suffer from low blood sugars, or pay thousands of dollars each month to stay alive, or die because of a diabetic complication.
So, who are the heroes in this story?
- First, no clinical trial can function without organ donors. Organs are essential for almost all clinical trials, and little clinical trial research would be possible without them. My two donors are now a “forever” part of my body and life, and there isn’t a single day when I don’t think about what they gave me after their lives ended.
- Then there are the City of Hope doctors who develop the protocols and manage my care. These dedicated doctors spend their lives trying to find or develop a cure, find better treatments, and keep their patients healthy. The doctors at the City of Hope work continually on improving their patients’ lives.
- Then there are the City of Hope surgeons who do the transplants. They use their skills to ensure the new treatments being developed are administered with the highest level of skill and safety possible.
- Then there are the City of Hope nurses who guide and support us, medically and emotionally, though these journeys. They cared for me before and after my surgeries. They protected me in intensive care, when I was most vulnerable. And they make sure I get the care and attention I need to stay as healthy as I can. For my last transplant, my primary care nurse met me outside the City of Hope at 5:30 am, was with me continually until my operation at 3 PM, and was still working with my intensive care nurse outside my room at midnight, watching over my every move. This nurse, and others, became as close and important to me as anyone I have ever known. There is nothing more important to a patient than confidence in our caregivers, and my confidence in her, and them, plus their dedication and skill, made this process work for me.
- Then there are the City of Hope Research Coordinators who help patients start on this path and continue to keep them moving forward. I’ve been lucky enough to have the same research coordinator for the entire time I’ve been here – through every blood test, each operation, and every follow-up test, making sure things are working smoothly and properly. She was critical in making this all work for me, and I wouldn’t have gotten through it without her.
- Then there are all the City of Hope supporting staff. When I walk through the City of Hope front door, the care begins. The people at the front desk greet me with smiles and efficiency. When a phlebotomist draws my blood, which they often do, they do it with compassion, care, and a smile. My time there is always filled with hope, and my time with them makes me understand how much they care about all of us.
I have never felt more secure, and more cared for, than I have at the City of Hope.
So, while it’s me talking to you right now, it’s these wonderful and dedicated people at the City of Hope who are the important ones. I wouldn’t be here today without every one of them. And diabetes won’t get cured without them.
Some final thoughts I have for you:
- If you aren’t already an organ donor, sign up now on-line and leave something very meaningful as a legacy after you are gone. It will change lives forever.
- You can help the City of Hope find a cure for diabetes and continue their fight against all types of cancer. We don’t often have an opportunity to be a part of something so big and so important, and there is no organization better able to make these things happen than the City of Hope. You can make a difference and you can help right now:
- Interested in the City of Hope Islet Transplant Program for you or someone you know? You can get more information here:
- Interested in reading the details about my personal story? You can follow my blog here:
or just Google: Roger Islets
Thank you for your interest in my story. Helping you understand this effort, helping other diabetics deal with their current condition, and supporting the City of Hope, are all very important parts of my life. They can be a part of yours too.