Tiffani’s Story: The Cost of Not Taking My Insulin
Tiffani Martin was diagnosed with type 1 diabetes at 5 years old, in 1993. At the age of 27, she was diagnosed with diabetic retinopathy. Left undiagnosed and untreated, retinopathy can lead to vision loss and blindness. With routine eye exams and prompt treatment, blindness caused by diabetes is largely preventable.
Today, more than 800,000 Black Americans have diabetic retinopathy. Tiffani’s message is clear: “Do not go down my route—take your insulin every day.”
In this interview—on behalf of the American Diabetes Association and Focus on Diabetes—Tiffani discusses her life as the recipient of both a kidney and pancreas transplant, losing her eyesight and why taking your insulin is so important.
This interview has been edited for length and clarity.
Ginger Vieira: Welcome. My name is Ginger Vieira. I’m the senior content manager at Beyond Type 1. I’ve lived with type 1 diabetes for 24 years and have the pleasure today of interviewing Tiffani Martin, who has also lived with type 1 diabetes for almost 30 years. Thank you for joining me, Tiffani. I want to dig right into your story. You were diagnosed at a very young age.
Tiffani Martin: Yes, ma’am, at 5 years old. I’m 33 years old today. I’ve had diabetes for some time now.
Today you are the recipient of a dual pancreas and kidney transplant. You are also legally blind, and you’re on dialysis?
Yes. On June 17th, I got a dual pancreas and kidney transplant. Even though I was still blind, I felt instantly rejuvenated after the transplants. I no longer had to do dialysis or take insulin shots.
I immediately changed my lifestyle, too. I was already pretty active, relative to being on dialysis, but I went vegan and kept working out. During that time, I got married in January of 2019, and two months later we thought we were pregnant. We thought it was morning sickness and kind of worried because we had just gotten married. But we quickly learned that I wasn’t pregnant—I was in the early stages of rejecting the new kidney. I’d gotten a cold earlier that turned into pneumonia, and eventually, that led to my immune system rejecting the kidney.
It was just kind of devastating—like what happened? We did everything but I ended up back on dialysis. However, the pancreas still works, my diabetes is regulated, and I still don’t have to do insulin shots.
Now that I’m back on dialysis, I’m still very conscious about what I put in my body. I try to stay active even though it’s very taxing when you’re on dialysis because you’re tired. But I want to be as healthy as possible for when I do get another kidney.
Are you on the list to get another kidney?
I am on the list, but there is a possibility for a living donor, but we are waiting.
Let’s go back to life as a teenager with type 1 diabetes, what was your relationship with diabetes management and taking your insulin?
I just wasn’t doing it. By the time I was in college, I was acting like a normal college kid—the late-night studying, all-nighters, drinking energy drinks, alcohol, not checking my blood sugar and not eating regularly. When I felt sick and like I needed to take some insulin, I would take it and keep going. I was just winging it and just kind of like, “Oh, I’ve had it this long. I know my body.” That’s not how it works. You never should allow yourself to get complacent by relying on how you think you feel. Don’t do that.
It’s so hard to convince young people that they are vulnerable, right? That’s really the challenge, when you’re young you don’t realize just how vulnerable your body is.
I often think about this. How do I persuade others? I walk around without my glasses so you can actually see the physical results of what happened. A lot of people will ask me, “Can you speak? I need to scare my kid into that,” and I want to tell them, “It’s not about the fear. It is an actual reality.”
Take the five to 10 minutes to work on the management portion of diabetes. Your life does not have to stop. It’s the same as being conscious of what you eat and working out regularly. If you do not do the due diligence, it is not a swift death. No, it is gradual. You will feel and experience the wear and tear of what you did not do, the neglect. It’s not just you, either, because your family will get the burden of that, too.
You’ve had eight surgeries on your eyes. Can you tell us about your eye journey?
It was 2015, and I had been traveling a lot that year. I was actually planning on moving and had a lot of job opportunities. I came home and just started noticing flutters in my left eye, and I thought it was stress.
When you say “flutters” was it like you felt like your eye was twitching? Or were you seeing floaters?
It was more so like a spec—a floater—like a little hair, just kind of flutter. And I’m like, “Okay, is anybody else seeing this? Maybe I just need to get some rest.”
They kept popping up and one day I woke up, and there was an entire red filter over my left eye. I panicked. I’m screaming, and thinking, “What’s going on? I can’t see.” And at that time the vessel had burst, and what I was actually seeing was just the blood from that burst cell. So I immediately started doing the anti-VEGF injections. I know this makes people queasy, I really want to be real with honest with you: it’s injections into your eye, and it doesn’t really hurt but it’s scary to see that needle coming towards your eye.
Then I had to do laser treatments to try and salvage the nerves that had been damaged from all the years of high blood sugars. But my retinopathy had progressed too much, so these treatments didn’t work. That’s when I had to do surgery on both eyes. I had about seven or eight surgeries between both eyes.
And the last one, there was just so much pressure from the surgeries that I was in a lot of pain. It came down to a choice of relieving the pressure and the pain but potentially losing my sight permanently. And at that time the pain was just so immense that I can’t even really explain it. There were days where I’m blowing my nose and, I’m sorry to get graphic, but there’s just blood tissue coming out. And it’s just the natural fluid from surgeries built up. I mean, I could not take it. And once they relieved that pressure it was almost like a relief of being blind because I don’t have to go through the pain anymore.
Right. And you had to choose. The physical pain was far worse than the loss of sight.
Okay. And I don’t want to deter people from getting those eye injections because they’re one of the most modern treatments that can save your sight, stop the progression of retinopathy and heal what’s going on. But you have to get treatment before things have progressed too far. It sounds like your eyes were really working against you.
They were. And yes, by all means, get the treatment. A moment of discomfort is way better than a lifetime of being blind. I was just at the point that it had progressed too much. But there are so many success stories of the injections and laser treatments happening and saving people’s vision. I had prolonged it and just let it advance to a point where they couldn’t save my sight.
That’s a great reminder of how important annual eye exams are, because the sooner they catch the signs of retinopathy, the sooner they can treat it and prevent vision loss. I have to remind myself of this, too, because it doesn’t matter how long you’ve lived with diabetes and how long you’ve gone without any signs of complications in your eyes.
Mmmmhmmmm. As a kid, you get sick, you bounce back. Nothing really happened. As a kid, I’d have a little scare or a little diabetes-related stint in the hospital but then go home like it’s no big deal. But there comes a point where that bounce back doesn’t come. And eventually, the signs of complications start. And when I say it came all at once, it really did feel like just somebody flicked a light switch. It was back to back. My kidneys starting to fail, not being able to walk because of exhaustion. Starting dialysis. Then my eyes. I’m thinking, “Where did all this come from?” It’s just a snowball effect.
Right. And like your eyes, the early stages of kidney disease have no symptoms. The only way we can detect kidney disease early on is through testing for protein in a urine sample. And the diet for someone with kidney disease sounds even more tedious than nutrition for type 1 diabetes!
Yes, you are concerned about things like potassium and phosphorous. Things that people overlook and never think about. And all the things that I enjoy are high potassium. So you become a nutritionist overnight. You can’t eat too many bananas, not too many potatoes or tomatoes. And these are all the healthy foods!
Right, it’s a very strict diet. And really it all comes down to years ago, your message for those watching: take your insulin every day and check your blood sugar.
Take your insulin every day. Just normalize it. Do you brush your teeth every day? Check your blood sugar every day. I really want to shake people and say, “Just don’t go down my route.”
Just do what you need to do to live a great long lifestyle, healthy, wonderful lifestyle with families. You don’t have to undergo anything I went through.
That takes a lot of courage and strength to say. I appreciate that message. I really appreciate your time and sharing your story so honestly and openly.
Thank you, Tiffani, for sharing your story.
Eye Health content is created through the ADA x BT1 Collab, with support from Focus on Diabetes™.