As we officially observe Veteran’s Day today, honoring all those who’ve served our country in the military past and present, we’re grateful to share the story of fellow PWD (person with diabetes) Mr. Tom Goffe in North Carolina. He served in the U.S. Army for more than a decade, but a type 1 diagnosis at age 30 quickly and unfortunately ended his 14-year-military career.
We’ve heard similar stories before and always find them heartbreaking, but also important to share for educational purposes — and in this case to express our appreciation for Tom’s service and continued advocacy on bettering Veterans Affairs care for PWDs. We talked with Tom by phone recently about his time in the Army, his T1D diagnosis, the diabetes-related complications that have factored into his life post-military, and how he’s navigated the VA healthcare system.
DM) First off, Tom, can you share your story of being in the military and how T1D changed everything?
TG) I was diagnosed at age 30 in 1994. At that point, I’d had about 14 years of service with the U.S. Army. I was responsible for providing advice, coordination and technical assistance in the planning and execution of training and operational activities of a variety of military organizations. Also, I held leadership positions as a Team Leader for four men, Squad Leader of nine men), Platoon Sergeant of 39 men, and acting First Sergeant for 243 officers and men.
At the time of my diagnosis, I was in Washington D.C. as a staff sergeant, which is a mid-level non-commissioned officer). Anytime you turn on the TV and there’s a press conference with someone in a dress uniform, that’s the unit I served in.
My diagnosis came in January of that year, and by September I was out on the street after being discharged. So in the space of a year, I went from being in an official CBRN (weapons specialsit) escort to the press office in the United States to where soldiers from the South Bronx go to die.
Wow, that happened quickly…. what’s the standard protocol for those diagnosed with diabetes serving in the military?
You’re not getting into the military if you already have type 1. Once you are insulin-dependent, you’re pretty much not able to remain in active military service. The way the Department of Defense handles it, you’re immediately categorized as “non-deployable” because it requires additional resources to care for a person who may not be able to contribute more than someone without diabetes. Some type 1s can stay in, if they’re in a role behind a desk or something that doesn’t require going overseas. But the short answer is: Once you get (diabetes), you’re gone. That’s what happened with me.
What exactly happened when you were diagnosed?
About two months prior, I had been stationed in Korea and got transferred to D.C., where I started having symptoms – excessive thirst, urination, those common symptoms — with water stashed everywhere. Part of military culture is you just keep doing your best and plugging along, because if you are pulled because of illness, someone else has to carry your load. There’s a culture to suck it up and deal with it.
But one day I just couldn’t hack it anymore. I went to a regimental aid station and one of the medics went through my symptoms, and sent me to a clinic because he thought I had diabetes. At the time, I didn’t know what that was at all. I went and got a blood test and went back to work. About an hour later, a phone call came in that told me, “You have type 1 diabetes, the Endocrine Department at Walter Reed Am Hospital is waiting for you, go there immediately.” That was about a 30-minute drive. So the knucklehead GI that I am, I stopped and grabbed a couple slices of pizza on the way and a big fat Coke because it’d be the last time I could enjoy this guilt-free. And the care I got at Walter Reed was top-notch, given the endocrinologist that I had there had treated George H.W. and Barbara Bush for thyroid disease.
At the time, I wasn’t married and was living alone and this brand new diagnosis taught me how to do a shot, check blood glucose with a drip and wipe meter and compare the number to the test strip canister. The next day, I was back at work – it was a lot to absorb all at once. But at the time I had 48 people working for me and still had to do my job, regardless of diabetes.
What I didn’t realized is that as soon as I was diagnosed, I was flagged for a medical review to see if I could stay in the military. The very obvious answer was no, though I was given an option to change my job so I could cook or clerk to stay in the States to finish my 20 years. For me, that wasn’t an attractive option because if the Army was doing something overseas, I wanted to be there. They eventually got around to discharging me in September ’94.
What did you do after the Army?
I went home for a little bit. But available jobs for a nuclear biological chemical specialist in the civilian world are few and far between, so I was able to get the VA to put me through college on a vocational rehabilitation program. That was at Fordham in New York City, and I majored in management with a minor in economics.
After being in the military and being somewhat poor there, and being a very poor college student, I decided to make some money. I got a job on Wall Street working for a brokerage firm and did that for about two years, until about the time the stock market started crashing. I could see that coming and figured I needed to find something more stable. So I got a job at the Treasury Department in D.C. and stayed there for five years. Working as a bureaucrat is soul-destroying, so I took up woodworking to keep my sanity. Next thing you knew, I was editor of a magazine called Fine Woodworking up in Connecticut… where my wife is from. I moved up there and met her and lived there for a little bit.
Quite the career trajectory change. What came next?
That’s when I had a massive heart attack and couldn’t work after that for a while. My wife got an opportunity here in North Carolina, so we moved down here, on the south side of Raleigh. That was about eight years ago. After that, to recover my health, I spent some time as a farm laborer at a local winery where I maintained and harvested 11 varieties of wine grapes and assisted in the production and bottling of wines and inventory management — before moving into the political arena as part of the staff for a Congressional candidate and legislative assistant in the North Carolina General Assembly.
Do you ever look back and feel badly about having to leave the military as a result of diabetes?
It happens, but one of the things about using Veterans Affairs Health System is that it gives you perspective. You can see others there who are mangled up and in much worse shape than you are. So every time I started feeling down on myself, I go there and think, “OK, I’m doing alright. I’m not so bad off.”
Can you talk about the diabetes care you get at the VA?
It’s essentially no different than any other healthcare system, with a tiered system of urgent care, emergency, and a hospital. The only difference is that the topic of money never comes up, ever. If you’re sick, you get screened and they handle it. You never worry about medication or treatment there. Veterans Affairs is the largest integrated health system in the United States, which makes it different and more bureaucratic, but they try to follow something of the same kind of model (of other clinics).
However, a lot of the care and cost is predicated on the level of disability that a veteran has. To get into the system, you submit paperwork that says “I have this problem from when I was in the service.” And someone evaluates that and determines how much of your health condition is due to military service, and how much isn’t. You are assigned a disability rating from 0-100% based on that. If you have something that’s connected to your service – like me, I was on active duty and was diagnosed with T1 – they will cover type 1 and everything that goes along with it. If something else crops up, like for me it’s kidney failure, neuropathy, heart issues… you can go back and take another bite at the apple and they’ll increase your rating. Initially, I was given a 30% rating (from just my T1D diagnosis) which is just enough to cover diabetes. But when I started developing complications, I was bumped up to 100% so they will cover anything and everything including inpatient, outpatient, medications, and durable medical equipment.
Wow, that’s quite the coverage! Which tools do you personally use to manage your diabetes?
Initially, I started off with syringes and vials in ’94. Even then, my endocrinologist introduced me to a guy who had an insulin pump, which was a big deal but not something I was ready for then. When I worked for the Treasury I had private insurance and went on insulin pens. Then in Connecticut, I changed doctors and had a CDE who was also type 1 was one of the first 20 people to ever use an insulin pump, so she got me on a pump. I was also one of the very first to use a Dexcom CGM when it first came out. I’ve also used Medtronic stuff, and right now am using a Minimed 670G, but am considering a change due to the diabetes complications that I have. Right now, I also have about 22% kidney function and that screws up how insulin gets metabolized. You add in gastroparesis, and I don’t think there’s an insulin pump machine out there that can handle that.
OK, let’s talk about the complications. First, can you share more about living with gastroparesis?
In a nutshell, that’s when the stomach is unable to function properly – it’s a paralyzed stomach, as a rough translation. There are two mechanisms involved: One is a nerve issue from neuropathy, the other is at a cellular level. As gastro makes glycemic control more and more impossible, the problem is that I can sit and have a ham sandwich for lunch and it doesn’t get digested and turned into carbs for glucose until many hours later. My stomach might function just fine today, but tomorrow that same ham sandwich could sit there for 12 hours. So while I’ve just shot up insulin to deal with that, there’s no glucose in there if my stomach isn’t converting that food as it’s supposed to. So I might go low and treat that and then afterward the meal could finally kick in and hours later I’m over 400 mg/dL.
It’s kind of like driving your car with a 30-second lag on the gas pedal in commuter traffic. Typical symptoms are unexplained swings in glucose, nausea, vomiting, and being bloated just from tiny meals where it feels like you’ve eaten a Thanksgiving dinner. Those are the main ones, and oddly it hits women more than it does men.
Something else that can come up is “diabetic diarrhea” where the nerves are completely shot in controlling the digestive process. You can get nasty GI problems, and these are two of the diabetes complications that they never told me about. Trying to manage diabetes with both of those is quite a challenge, to put it lightly. I’ve been on pretty much every medication, and that has problems all by itself. That’s the fun of GI complications and diabetes.
What’s the treatment?
Working with my world-class endo, I’ve gone through gastro surgery. My first one was in February and I just had another one in late October. I went outside the VA for that to Wake Forest Baptist Hospital in North Carolina. The three treatments for gastro are: medications which generally don’t work well, “gastric pacemakers” that are like heart pacemakers but work for the stomach, or gastroplasty that involves running an endoscope into your stomach to expand the valve, hold it open and add in toxin injections to keep it open. The procedure takes about 30-45 minutes and 4-6 weeks afterward, you know if it worked or not. I had it done in February and it didn’t do a thing for me, and I just recently had another one. There’s a 50% chance it will work the first time, and there’s a 40% chance the second might work. It’s not a permanent solution even if it does, you have to go back every 6-9 months to have it done. We’ll see how this one goes.
Ugh. What about the kidney failure you mentioned?
For the last couple years, I’ve been going through a slow decline in kidney function. As I mentioned, I’m at a 22-23% kidney function rate at this point and they put you on the transplant list at 20% and put you on dialysis when you get to 10%. My kidney doctor wanted to get ahead of the curve, so when I reached that point, I could get popped onto the list while still relatively healthy. My endo also said with the gastro and everything else, “The boy needs a pancreas” so we should try to do both.
In the past couple months, I’ve had some hypoglycemia-related hospitalizations and we started off at square zero. They have already started screening me for transplants, with psychological exams and social workups, chest X-rays and a whole host of blood tests. But the VA only does a simultaneous kidney-pancreas transplant at one place in the country, which is in Iowa City, Iowa – and I’m in North Carolina. Being a researcher type, I started looking at transplant data at that VA hospital and they’ve done three since 1984. But they looked at me, with a heart attack and two stents, and said I’m ineligible because my heart isn’t good enough and doesn’t meet screening criteria. Also, my kidney function is OK (at 22% instead of 20%) so I don’t need a new kidney apparently. That’s not helpful.
That’s horrible! What happens now?
I figured that was off and kicked it out of my mind, but in August I had a couple lows that I was hospitalized for, and my doctor said I needed a transplant or I’m going to die. She started the ball rolling again and now my heart is OK and was good to go. But the transplant coordinator is working through the specifics to determine if it’s possible, and what can be done in Iowa. My wife and I would be going back and forth to Iowa, and that’s preposterous if you think about it. I have no clue what kind of timeline it could be on, if allowed after it’s resubmitted. It’s interesting to think about what a pancreas transplant would be like, but I will believe it when I see it.
Wow… how much diabetes care do you expect is given at the VA?
Without knowing the exact numbers, I’m guessing that less than 1% — probably one-half of 1% — of the people at the VA have type 1. Most have type 2 diabetes. The reason is you’re not getting in to the military in the first place if you have type 1, and most of the clientele are older men who have gotten diabetes. So every time I go in, I’m like a little novelty in the clinic. You’ll also notice that a lot of VA hospitals are co-located with teaching hospitals, so you have doctors and medical students who get a huge population of patients to treat. There is no shortage of patients to deal with. It’s a relationship that works great for both. So the care is actually very good because you’re getting some of the best, cutting-edge doctors in bigger areas. But access can be a challenge sometimes, especially with some specialties (like T1D) being short-staffed where you need to be sent to other parts of the country for care.
What else can you share overall about VA diabetes care?
Two things that really depress the hell out of me are about private care and access to medications and tools.
First, when I go to a VA hospital on a Monday, I can see my endo’s notes on a Wednesday and read about every test and plan entered into the medical record. Whenever I’ve gone to a regular (private) hospital or clinic I never see that stuff even through patient portals. The VA may complain about the networks and computers they have, but from a patient perspective I can access my file and message my doctors, refill prescriptions with a click of a mouse and get them quickly, and see my notes and appointments. It may not be as pretty, but it’s much more useful.
The other thing is that if a given device isn’t on a list for approval, it takes an appeal to D.C. to get it — though that’s just a different version of what people with private insurance go through all the time. Although, bless her heart my endo can make the bureaucrats scream in agony and can bend them to her will. If she ever quits the VA, I don’t care if I have to pick up pop bottles on the side of the road to keep seeing her. I’m doing it.
Thanks for sharing your story with us, Tom. And of course, thank you for your service — even though it was derailed by diabetes. We send our appreciation to you and all who’ve served our country!