Serving as Inspiration After a Life of Good Management, Good FortuneFriday, March 07, 2014
Richard Vaughn is a Joslin Medalist who is active within the diabetes community. He shares his experiences managing the disease with the masses and inspires young families that they can also enjoy a good quality of life.
By: John Parkinson, Clinical Content Coordinator, DiabetesCare.net
The young boy is languishing as his parents take him from doctor to doctor. He is losing weight, has no appetite, and his parents know something is wrong. They keep going to different doctors to try and find an answer. Finally after going to their fourth doctor, they come up with a diagnosis: type 1 diabetes.
This little boy was Richard Vaughn in rural Virginia in 1945.
After spending some time in the hospital where he began a regimen of animal insulin, he began to eat, gain weight, and felt better.
After being discharged from the hospital, Vaughn was given pretty simple instructions. He was only to test his glucose once daily and gave himself one insulin injection a day. And he was only cautioned to stay away from eating sugary foods. He says it would be another 40 years before he began using technology like meters and understanding the role that carbs play.
As an adult, he was told on more than one occasion that he would not live past his 40s. While Vaughn says that some of those things were what was perceived by the medical community as fact at that time, he didn’t dwell on it, rather he lived his life day-to-day with his diabetes. Today, he is grateful for both his longevity and not having any major complications. And his career as a college professor prepared him to continue educating the diabetes masses. Now retired, Vaughn is active in the diabetes online community, often answering questions, posting diabetes research stories, and serving as living proof that a life with diabetes can be associated with longevity.
Four years ago he wrote a book, Beating The Odds: 64 Years of Diabetes Health, which as the title suggests goes into detail about his life starting with his initial diagnosis.
He acknowledges that family support, starting with his mother and then his wife has helped him tremendously to manage the disease. He also believes there is an innate physiological factor that’s been beneficial to his health. He points to the theory by researchers who have tested Type 1s and found through insulin c-peptide tests that some type 1s produce insulin.
While he had qualified in 1995 for it, in 2009, Vaughn was given a Joslin Medal for having diabetes for 50 years. In fact, next year he will have had the disease for 70 years.
DiabetesCare.net recently spoke to Vaughn about his diabetes experience, the evolution of diabetes care, and what it means to become a Joslin medalist.
DiabetesCare.net: Can you talk about how you were first diagnosed, and what your daily diabetes regimen was like back then?
Vaughn: I was diagnosed in 1945. I had chicken pox and mumps before my birthday that year. My parents took me to three doctors, none of whom recognized the symptoms. I was born and living near Roanoke, Va. My parents were persistent and took me to a fourth doctor who diagnosed me. It was days after my sixth birthday. They put me in the hospital and had me on animal insulin. I was all skin and bones and could barely walk. I lost my appetite and wasn’t eating much. With insulin, I flourished. I gained my weight back, and I looked much better by the time they released me from the hospital. (Below left: Vaughn just a few months after his diagnosis.)
DiabetesCare.net: What was your diabetes management like back when you were first diagnosed?
Vaughn: There was one insulin injection per day. It was before breakfast in the morning. And there was this very crude way of testing my urine for my glucose. It was a test tube in which you poured benedict’s solution. You put 8-10 drops in a container which had water in it and you put it on the stove. You boiled it, and if it was still blue, there was no sugar in the urine. If it was green, there was some sugar. If it was dark red, it was extremely high. Urine was a poor estimate of blood sugar.
I have met other Joslin medalists online who say in this same period of time, their doctors were more knowledgeable. For example, they had them testing their urine before each meal. Although they were taking just the one shot per day, they knew better how and what to eat on the meals throughout the day.
We were only following the doctor’s orders and the only thing we were told was to not eat sugar. My mother never served anything with sugar, and I never cheated. However, my mother did make me cakes and pies and they were filled with carbohydrates, but we didn’t even know about them back then. As you can imagine, I ate so many carbs many of them fast acting. I’m sure I was running high blood sugar all the time, but I felt like I was doing the right thing because I wasn’t eating sugar.
DiabetesCare.net: Can you talk about what types of providers you have seen through the years?
Vaughn: I didn’t know about the need to see specialists. We had never been told to see a podiatrist or at least watch my feet. I didn’t know about the fact I could potentially have something wrong with my kidneys, and I never had them checked. The first time I went to an eye doctor was in the 8th grade to get glasses.
It was much later in life that I started going to specialists. In the 1990s I was seeing an ophthalmologist, yet I still didn’t have my kidneys tested.
DiabetesCare.net: Can you talk about your wife’s role in supporting you and keeping you healthy through the years?
Vaughn: My wife took up where my mother left off. My wife has been wonderful in my care even though she started off with limited knowledge when we first got married. For example, she would notice by how I would behave after I ate if I was running low or high. She decided based upon these reactions that there were foods that she should not be serving me. She also limited my portions.
There were times when I would have a hypo in the middle of the night—I didn’t have that much of a problem in the middle of the day—and sometimes while sleeping I would thrash about. My wife would notice something was wrong. She would have water with sugar in it. She would stir up the glass and raise me up and give me a little of that. My parents had done the same thing when I was growing up.
Today, she cooks my meals and tells me how many carbs are in what she is serving me. She watches me very closely, and there are certain things she is better about my control than I am myself. She will ask me if I have tested if it has been quite a few hours, and it wasn’t even on my mind. Sometimes when I do test at her request, I have a low or high that I should take care of. I couldn’t ask for a better caregiver.
DiabetesCare.net: Along with a supportive wife, what other specific management strategies have you done that have aided in your success?
Vaughn: In the beginning and for many years, there weren’t any strategies except to not eat sugar. It was much simpler back then [he laughs.] You weren’t even frightened that something could go wrong because you didn’t know about the potential complications.
Some people say I must have good genes, and there might be something to that. I not only survived but came out of it without any complications.
I was almost 31 years old and living in Richmond, Va., and I went to a doctor who was specialist for the first time. I don’t believe he was an endocrinologist, but he had a lot of diabetic patients who went to see him. He gave me a book and he told me to pay particular attention to a chart on a certain page. I went out to the car and I opened it up to the page he was referring to and it was a life expectancy table. In one column it had the year you were diagnosed and in another column it had how long you could be expected to live. According to this table, I would not make it past my 40s.
When I moved to New York, there was another doctor who gave me the same kind of information. Of course, I’m now 74 and I’m very healthy. They just didn’t know much then.
DiabetesCare.net: Can you talk about the experience of when you received the Joslin Medal?
Vaughn: Since I was diagnosed in 1945, I was eligible for the medal in 1995. However, I didn’t hear about it at that time. I knew there was a Joslin, and I’m only a four drive to Boston. I found out about the Joslin medals in 2006. I looked up the website for the medal and they wanted documentation of when I was diagnosed. I thought they wanted something from a hospital or doctor. My doctor had died and the hospital only had to keep records for 10 years. So, I just gave up.
Another Joslin Medalist read of my dilemma and she let me know she was in the same situation. She called Joslin and asked them what she could do. She had two friends who knew her back when she was diagnosed and they were able to write letters documenting things they remembered, and that was accepted as proof. I had a sister and a first cousin write letters, and that was accepted by Joslin. I then received my medal in 2009.
DiabetesCare.net: The idea of longevity and thriving with diabetes really resonates with people. Can you explain what it feels like to have been recognized as a 50 year Joslin Medalist?
Vaughn: At the beginning, I thought it was nice that people could get these medals, but I was just so grateful that I have been able to live so long without complications. I wasn’t particularly enthused at the idea of getting a medal, but I found out from another medalist friend that if I did get the medal, I could go to their meetings and meet other medalists. I also found out there was a Joslin Medalist study, and I wanted to take part in that study.
DiabetesCare.net: Are you involved in the 50 year medalist study? If so, what is required for you to participate?
Vaughn: I participated in the study in 2009. Before I went to Joslin, they had me fill out numerous pages about my past, starting with my diagnosis and condition at the time. They asked if there were any other type 1s in my family tree. They think my type 1 might have been caused by my chicken pox and mumps. My symptoms started appearing when I was recovering from those diseases. My frail, young body and my pancreas had seen some damage. Many of my friends with diabetes have said that they didn’t have it in their families and that they suffered some kind of disease, trauma, or it may have been exposed to something in the environment in which they lived.
It was interesting filling in the paperwork and then going up to Boston for the testing. They took so many tubes of blood; they gave me a glucose tolerance test; and they examined my eyes. Of course I was fasting. I was supposed to take my basal insulin that morning, but not eat anything. When I drank the glucose solution, my blood sugar went sky high. They tested me every half hour to see what was going. It kept going up into the 300s, and I felt very sick.
I was told by the person who was in charge of the testing that there were some people who were tested and after about an hour and a half, their blood sugar went down; mine kept going up. For those whose blood sugar went down, they still produce some of their own insulin. My c-peptide test was less than 0.1, which meant I was not producing any insulin.
The Medalist study has found some amazing things. For example, many medalists still do have some insulin production. They were very surprised, and didn’t expect that to be true. And since so many of us still produce c-peptide, it protects us against complications. So many of these medalists have produced enough insulin that researchers think that may have a major role playing in them being healthy after so long a time with diabetes.
When I was being tested at Joslin, I was told some very interesting information. Of the people who had been examined, some of them freely admitted they didn’t take care of themselves, and they didn’t have any complications. And on the other hand, there were people who were taking care of themselves and still had complications. These are the two extremes, and a very small group of each; however, it’s amazing to think about, and I don’t know if they will every find out the mystery of why that happens. So there has got to be some kind of inner protection, maybe it’s the C-peptide, maybe it’s something else.
I got up and spoke at the 2011 meeting, and I talked about the fact that so many of us medalists do produce insulin, but there must be something else that is protecting a smaller group of us, who are in good shape and don’t produce the insulin.
Joslin Medalists gathered together in 2011. Vaughn is in the center at the back of the room. He is
the tallest person in the back row.
Vaughn: In the 1990s, I stopped using the animal insulins and I started taking modern-day insulins. And these insulins don’t contain c-peptide. When I was no longer receiving c-peptide, I started developing complications. Now I don’t know if that is the reason for sure, but there are a number of medalists who go with my theory that the c-peptide in the animal insulins protected us during those early years, and that is what got us through. Now that we are not getting that c-peptide, many of us medalists are getting complications.
During this time when I switched insulins, I was diagnosed with some retinopathy spots in my eyes. And I developed some neuropathy in my feet.
A few years ago, I read an article in the magazine, Diabetes Health, that said even if your A1c is good that doesn’t mean you won’t get complications. There is more to it than that. To give yourself added protection, you need to have a good A1c, and a stable number without many highs or lows. If your blood sugar is going from high to low throughout the day on a day-to-day basis, that is a shock to the system, and that roller-coaster-type-of-control can cause complications.
When I was on synthetic insulin, I was having too many highs and lows. That combined with not having the c-peptide is around the time I started developing complications.
In 2007, I switched over to pumping. When I started pumping I had a much more stable control. The retinopathy disappeared by the end of 2007, and it has never come back. And with the neuropathy, I rarely ever feel twinges from it.
DiabetesCare.net: Do you like to talk to younger people to help them get through some of their own challenges?
Vaughn: In July of last year, I went to the Friends for Life meeting in Orlando. The meeting is for kids with diabetes and their families. I was surprised to see many of them around me and some of them called me their hero. They took pictures with me. They had gotten to know me on Facebook. There are many groups on Facebook for parents of type 1 children. I joined some of those groups to let them know how I have been successful, give them some optimism for the health of their children, and let them know their kids can do anything they want.
Jeff Hitchcock [founder of the Friends For Life meeting] asked if I could be down there every year. I am going through knee replacement surgeries now, but starting next year, I want to be down there every year.
DiabetesCare.net: What diabetes innovations have impressed you the most, and anecdotally, what do you think have had the most success in helping people with diabetes?
Vaughn: The glucometer has been the most miraculous thing as far as I am concerned. I purchased my first one in the mid 80s. I didn’t have a meter until 40 years after my diagnosis. The pump has been wonderful, and it helps regulate more stable blood sugar control, but being able to know what my blood sugar is and therefore knowing what to do for my dosages--that is by far the most innovative thing to help people with diabetes—in my opinion.
DiabetesCare.net: How do you characterize diabetes in your life?