Near Death. Determined. Type 1 Diabetic.

Posted on September 9, 2011

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Meet Tony Cervati – Type 1 Rider.  Mountain bike rider extraordinaire (even though he would not call himself extraordinary – I could not refrain).   

Tony is an amazing guy.  Humble, yet dedicated.  Driven, but realistic. And diabetic. 

I had the pleasure of interviewing Toni yesterday and wanted to share his story, his mission, his passion.  All focusing back on diabetes. 

Not matter what happens, he wants type 1 diabetics to know:  THEY CAN DO ANYTHING. 

Michele:  Tell us about when you were diagnosed with type 1 diabetes.  How did it affect you and your family?

Tony:  I was diagnosed with diabetes 35 years ago at the age of 8.  I actually remember a lot pertaining to that day.  I had been sick.  Wetting the bed, drinking lots of water- the normal symptoms of diabetes.  My mom thought I had a kidney infection.  This went on for about 6 or 7 days,  and then my mom took me to the pediatrician.

Somehow the pediatrician tested my glucose level.  It probably was not even a blood draw.  I don’t recall.  Maybe a urine test?  This was many years ago, and the technology was not like it is today. 

My glucose was high, and the pediatrician said, “you have diabetes.”

I was sent to the hospital.  My mom cried.  I had never even heard of that word before.  Wasn’t this something old people got?  Why me?

My parents had been divorced a year, and my dad lived a few hours a way so it took him a day or two to get there (to the hospital). 

From the moment I was diagnosed, my mom was hands off.  She never gave me a shot.  To this day, she still does not know about diabetes.  I had to take care of myself. 

I spent two weeks in the hospital and learned to inject insulin into an orange and then into myself.  Left the hospital and started school. 

I don’t recall the actual diagnosis date – just August.  And I remember I was going into the fourth grade at school. 

Luckily, my classroom had a bathroom so I could test my urine (remember – no blood testing back then).  I imagine my A1c was not good.  No way to measure it.  I took short acting Regular beef insulin and long acting NPH insulin.  I don’t even remember changing doses that often.  Used standard doses. 

But you know what?  This was helpful (having to take care of myself with no help from my parents).  It actually molded me into who I am today – a very independent, long distance, endurance, and solo mountain biker.  I think this was the beginning of my train of thought that is with me every time I start a bike race.  Especially a race like Tour Divide. 

And having a pediatrician vs. an endocrinologist was a plus too.  He was very “loose”.  He understood diabetes, but  he was not hard core.  My mom was freaking out.  But the pediatrician was calm.  “Let Tony eat cake if he is at a birthday party.”  I remember him saying that. And to this day, if I take my own sons out for ice cream, I have ice cream too.  Fear was not instilled into me about diabetes, what to eat, etc. 

At 18, my pediatrician told me I had to start seeing an endocrinologist.  He could no longer treat me.  That was the first time I had heard the word “endocrinologist”.  So I found one and started seeing him. 

Michele:  It’s amazing how your approach to diabetes 35 years ago (and not necessarily by choice) impacted your whole life (in a good way).  And how the treatment for diabetes was so different back in the 70’s and even the 80’s vs. what we have today.  Given that you are an athlete (professional solo mountain biker for Trek), I want to talk a bit about taking shots and using the insulin pump.  I believe readers would want to know what works for you and why? 

Tony:  About 7 years ago a friend called me and asked if I would support him during a 24 hour solo mountain bike race.  This is a rule during solo races.  You need to have a support person.   The support person keeps an eye on the racer who is up all night biking, making sure they have water bottles, etc.  After this experience, I decided I want to try a two person team.  You switch off riders every three hours.  Objective is to cover as much ground as possible during your time. 

Keep in mind, this is the first time I had done this.  Split my Lantus dose and used Humalog.  Race was a failure.  Night before the race (Friday), took my usual dose of Lantus.  Took a smaller Lantus dose Saturday morning (day of race).  Regardless, I ran hypoglycemic for hours.  30s, 40s, and 50s. 

It was lack of education.  I even took my typical dose of Lantus Saturday night too.  I did not know better.  It was a mess.  Struggled through. 

After the race, I just sat in the car.  Silent.  Bummed.  I was going to figure out how to do a solo. 

I found an endo at UNC’s Diabetes Care Center who was a Type 1 bike rider himself.  Saw him speak at an event and went up to him and said, “I want to be your patient.  I want to do a 24 hour solo.”  At this time, no diabetic had ever done a solo 24 hour mountain bike race. First thing endo said was “go on the pump”.  I did not want to go on the pump.  We had a huge argument.  The endo said, “fine”, and walked away. 

One week later, I went on the pump.

Michele:  Why were you so opposed to the pump? 

Tony:  Medically, I did not need it.  I did not want something attached to me 24/7.  And the whole world did not need to know I was a diabetic.  It would be like dragging a boat anchor around. 

But 36 hours later I liked it.  By day 2, I got used to it.  Why I had fought getting the insulin pump? 

I started off on the Deltec Cozmo insulin pump and was happy with it.  No issues.  However, there were too many supplies with the Cozmo.   Remember, I have to pack conservatively when travelling for bike races.  Space is limited.  Which is why I switched to the OmniPod.  I started using the OmniPod one week before Tour Divide.  

 OmniPod supplies come in one package.  No tubing.  Cut my supplies I had to carry by 1/3.  And remember, with Tour Divide,  you have to carry everything on your back while biking.

Michele:  That makes sense.  Since we are on the subject of Tour Divide, let’s talk a bit about biking.  How did biking start for you?

Tony:  I started racing BMX when I was about 6, 7, 8 years old.  And continued until I got my drivers liscence.  Stayed off bikes in high school.  Was busy with other varsity sports and had a car. 

When I got to college, there were no organized sports(went to a real small college).  I put on weight and felt horrible.  Was tired of running since I had run so much in high school during varsity sports.  Tried rollerblading. 

Was in my car one day and drove by a new bike shop that was opening.  They had a mountain bike in the window.  This was the first bike shop in our town.  Next day, I bought a mountain bike.  Worked at the shop building bikes to pay for the one I had bought. 

Biking became an obsession for me.  Can’t explain it.  Like breathing.  I started training all the time and riding every spare second I could find.  Between classes I would bike even if it was only for an hour.  I would go to classes all muddy and sweaty. 

After college, I got out of biking again.  Was busy with working. 

Until I moved to Chapel Hill.

Michele:  What happened in Chapel Hill?  Was this a turning point in your biking career?

Tony:  Chapel Hill has a huge cycling community.  And I started biking again.  I really watched what I ate and focused on my diabetes care.  There was no separating my diabetes and endurance cycling. 

And this is when I decided to be the first type 1 diabetic to try a 24 hour solo biking.  No diabetic athlete had ever done this.  But I would. 

Michele:  Speak to the preparation for doing a 24 hour solo biking event?

Tony:  We (my endo) and I started from scratch.  Since no diabetic had ever done a 24 hour solo bike race, we had no frame of reference. We started out on 2 hour rides, then 4 hour rides, and longer.  Even the pump reps and folks at UNC got involved.  Every single day I would email my endo with everything I was doing.

Michele:  Your endo was very involved.  You all were determined to make this work.  Speak more about the training and preparation, and how it came to serve other diabetics too.

Tony:  Yes.  I got nominated for an Athlete Achievement Award by LifeScan and even though I placed 4th, I still got to attend their annual conference.  I had the opportunity to interface with lots of diabetic athletes at this meeting.  Heard the winners speak.  And it was then that I realized they were all giving back to the community.  I was not.  What could I do? 

At 2am the next morning, I registered the domain type1rider.  Started putting all my training notes out there.  Directed my own endo to go there so I did not have to email him every day. 

First email I got was from a gentleman in Italy.  He wanted to do an Ironman race.  I responded.  1 or 2 weeks later, I started getting hundreds of emails a week.  There was a need.  I was giving back. 

And now I get 200-300 emails a day.  20,000 during the month of Tour Divide.  There is a need. 

People, especially the mom’s of type 1 diabetic children, have questions and concerns.  I see a trend and commonality in the mom’s emails:

1.  Fear of hypoglycemia in their children and wanting to know if their children will be able to get a grasp over diabetes.

2.  Will their kids be okay?  Normal? 

Yes. and yes.  I do endurance, solo mountain biking.  I went to my high school prom, have a full time job, have 2 little boys, pay my bills.  You can do it all. 

And I post it all on my blog.  The good, the bad, and the ugly.  My bloodsugars, basals, and more.  My bloodsugar may run above 200 if I have the flu.  Can’t freak out.  I am not an endo telling people what to do.  Just a pro mountain biker trying to help people.

Michele:  There is a need and people obviously turn to you for motivation and insight.  You are now giving back to the community.  All while still racing.  Which brings me to Tour Divide?  You entered this grueling event in June 2011.  How did it go?   

Tony:  Well, let me first say, I have done about 380 hours of solo racing and won a 12 hour race series which helped me get picked  up by Trek (they are amazing – don’t care how I place – just want me out there).  So I have lots of experience and have trained hard.  All needed to do Tour Divide.  It is a serious race.  The longest bike ride on Earth.  2745 miles.  Bikers carry everything – tent, water purification, pump supplies.  Cell service is only available about 10% of the ride.  80-90% of the race you are above 6000 feet.  As remote as it gets.  Banff, AB to Antelope Wells, NM.  Self supported the whole ride.

I wanted to prove that it is possible for a type 1 to do it.  Banff to New Mexico.

Michele:  I can’t imagine doing such a race.  Amazing.  How did it go?

Tony:  Well, I was approached by Tap Root Films to capture this race.  And we had found funding to help us.  Such a great way to educate and inspire diabetics (and non diabetics).  The day I was getting on the plane for Banff, the funding fell through.  But we continued.  There was a race to be had.  Not for me.  For diabetics.  Unfortunately, it did not go as hoped.

I almost died in the river during Tour Divide.  We had to put the movie on the shelf.  I encountered a grizzly bear, stepped back to get away from the bear, lost my footing (ground was wet) and fell 10 feet into some rapids.  The frigid water was about 44 degrees.  I knew I wasn’t coming back.  I kept calling my boys’ names.  A miracle and angel saved me.  I got to shore and back to my bike.  Had to go 25 miles for help.  Had to find my way back to town. 

Michele:  I am so sorry.  How scary.  And disappointing (after two years of training). But I am so glad you are here to tell your story.  That takes a lot of courage, and you should be proud.

Tony:  It is not about me.  It is about diabetes.  Proving diabetics can do anything.  I was forced to retire from the race.  I felt like I let down the diabetes online community (DOC).  Weighed on me a ton.  Got thousands of DOC messages.  I had to regroup.  Took  me a long time.  I was pretty beat up physically too – collapsed lung, fractured ribs. 

Michele:  Wow.  And here you are today, able to talk about it.  That says a lot about you as a person.  What next for your healing?

Tony:  You have to keep trying.  No choice.  Have to do it.  Tony is irrelevant.  I am in a good place finally.  And I will do Tour Divide in 2012.  Tap Root Films is going to capture it on film (training and preparation too), and someone has volunteered to write a book about the experience and my diabetes. 

It is a journey.  My goal is to finish it in 28 days (record is 17 days).  And along the Tour Divide there are 3 large diabetes centers.  I would like to get off the course and go to those centers.  Talk to the newly diagnosed diabetics.  Create awareness and education.  Tell them “you can do it.”

Michele:  I love your passion for diabetes.  It is wonderful.  What message would you tell these and all diabetics?

Tony:  Keep choppin’.  A football coach at Rutgers used to say that.  Not about sprinting or grasping it today, tomorrow, or in a month.  Tree is gonna gall some day.  Keep working at it.  Some days you will have a big axe and other days not.  All diabetics can chop.  They all have it in them.

Michele:  We sure do.  Without it in us, we would not survive.  We have to keep choppin’ every single day.

Michele:  Based on what happened, how do you deal with the fear and stay so positive?

Tony:  I fear failure more than I fear something bad happening.  I don’t want to fail.  Dwell on the positives.  Will I freak out when I have to say good bye to my kids in June 2012 to go do Tour Divide?  Yes.  Can’t guarantee success, but I can keep trying.  I have to go back.

Michele:  So well put.  We cannot guarantee success, but we have to keep trying.  This is true in all aspects of our lives – including diabetes.

Michele:  Thank you so much Tony.  You are an inspiration.  I invite readers to check out your blog  www.type1rider.blogspot.com and to watch this video about  your mission to ride in Tour Divide 2012:

www.type1riderthefilm.com

Let’s all be like Tony and remember “TYPE 1 DIABETICS CAN DO ANYTHING”. 

Take care everyone….

 

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