Interview - March 10, 2007

If you like riding motorcycles, then come Spring, there’s no better place to be than Daytona Beach, Florida during Bike Week.  The same’s true, if your thing’s building, or wrenching bikes – and I’m talking harleys here.  All over town, you could easily find every flavor of mechanic.  Whether it be stock, S & S custom engines, or Bush-tec bike trailers, you can find it at Bike Week.  There’s also no shortage of Harley experts to be found – some relatively new – but plenty of old school wrenches, too.  But you know you have the best of the best when the other wrenches have him on speed dial.

This is how Hep C Straightup hooked up with Skeeter Todd in Daytona this year. 

Had to tape our interview – ya know, brain fog & all - and I gotta tell ya ... as I listened to the interview again I realized what an honor it is to be in the presence of individuals such as this.  His attitude and outlook on life burns brighter than a lot of folks who aren’t “sick” (o.k. ... well ... non-hep C people...).  He’s a Survivor: Vietnam vet, old-school biker, trucker, ... not to mention, a 10-year liver transplant survivor. 

Fortunately (for me), a very articulate one.  So, in the interest of not screwing up what he had to say, I’m not gonna jack with the transcript of the interview too much.  His message is a good one for all of us living with this disease.

Hep C Journey

“My hep C came from being in the wrong place at the wrong time.  I got shot when I was in Nam.  The best we could tell, I got it from tainted blood.  So, I figure I’ve had hepatitis C since the late 60’s, early 70’s. 

"My body would fight it, and it would go dormant.  Then active again, dormant, and so on. 

“In about ’95, it went into terminal mode.  I fell over on my side and couldn’t function ... most embarrassing.  I went to the hospital and they told me: ‘you’ve got heartburn.  Here’s some Mylanta.  Go home & call us in the morning.’  This wasn’t even the V.A. – this was a real-deal hospital.  But I kind of felt better, so I went to work the next week. 

“The next weekend was the fourth of July weekend, and my feet are blown up, my hands are getting big; I’m not functioning, I don’t feel good, and I’m miserable.  My wife, Marie - who’s the main reason I’m alive - took me to the hospital.  I went, but they didn’t do a fuckin’ thing the week before.  I didn't know what they were gonna do different this week, so I went to a different hospital." 

Good News, Bad News

“I go into the hospital, in the emergency room.  You know, the whole routine that everybody hates.  They put me in a room, and a male nurse comes in.  He takes one look at me and says, ‘oh ... I know what’s wrong with you.  You’ve got hepatitis.’  Cuz at this point, I’m about the color of oak. 

"So, then the doctor comes in & says, ‘we’ve gotta run tests.’  Ya know, just what you wanna hear.  Then he tells me they’re gonna put me in the hospital for a few days.  I says, ‘just give me some medicine & let me go home.’  They says, ‘no ... you’re going in.’  I’m not feeling good – I felt like shit.  So I go.

“Next thing I know, I’m in ICU, they’ve got me plugged in all over the place.  I’m thinking, ‘what is going on here?!  I’m way too busy for this.’  The gastroenterologist – who I hadn’t met yet – comes by and says, ‘I got good news & I got bad news.’  I says, ‘o.k., what’s the bad news?’  He says, ‘you’re very sick & you’ve got hepatitis.’  I says, ‘I coulda told you that.’  Then he says, ‘the good news is that we can get ya healthy enough to try & get ya to a transplant.’ 

"O.K. .... ”

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The Big T

  Preparing for Battle

“The impact on your head when you have a terminal disease is intense.  You’re barely functioning, & we might be able to make ya live long enough to risk your life.  I’m like, ‘holy shit – I’m not in Vegas! Get the roulette tables away from me!'  Now, that’s a reality check.

“So we spent a summer doing uncooked vegetables.  If we didn’t cook it, I didn’t eat it, unless it was raw.  The purpose was to cut out the sodium to try & stop the swelling.  Did diuretics, to get rid of the liquid.  They did a couple of different taps on me.  It was not a real good thing.  But I started to feel better, so I went back to work." 

  Wanted: Respectful Liver Transplant Surgeon.

“The doctor comes back and says, ‘here’s what we’re gonna do ... we're gonna get you’re your transplant done.’  I say, ‘fine ... where do I go?’  But they won’t tell you where to go. They give you the information so you can make your own decisions – they won’t make the decision for ya.  Ya know, hind sight is a good thing.  But foresight ... it sucks because you don’t know what to base your decisions on.  Luckily, I had a physician that would stand up and say, ‘hey – I know this, I know this (etc).’  So what I did was an R & D deal (research).  I start looking at clinics, and decided I wanted a relatively young clinic, with good numbers, that wanted to be successful.  I interviewed them like I was buying healthcare ...  cuz that’s what I was doing." 

Wanted: committed transplant recipient.

“Luckily, the clinic I chose in New York - Strong Memorial – picks their patients cuz they want to be successful.  They look for someone who’s committed and relatively healthy since they want to transport you the day before you die, because there’s a shortage of organs.  They want someone who has a caregiver & partner – because there’s times when you can’t really make rational decisions.  Under those stress-like circumstances, there’s more times when you can’t, than when you can.

“When you’re getting accepted into transplant programs, they interview you.  You talk to the surgeons, you talk to the anesthesiologist, you talk to the coordinators, you talk to all these people.  So my wife & I are finally in a room, we’re sitting there, it’s late in the day, and I’m tired.  Cuz when you have hepatitis C, you get tired real easy.  Now, I’m not the mellowest person in the world, and the surgeon’s sitting there talking & I’m a little fuzzy.  My wife looks at him & says, ‘if you can install it correctly, I can make it live.’  He looked at me & says, ‘ya know what? ... I think you’re dedicated enough that we can make a success of this.’ 

“That led me to believe that attitude is a large portion of surviving; not just the transplant, but with the hepatitis C." 

  Hurry Up & Wait

“Then the good news is: you’re up on the transplant list – the bad news is that you don’t know when you’re gonna get transplanted, cuz you don’t know when they’re gonna get an organ.  That went on for about a year. 

"About halfway into it, I got a call: ‘we got an organ.’  I asked a couple of questions, including what the match was.  It really wasn’t a wonderful thing, but it was close.  I looked at my wife.  She looked at me.  I covered the mouthpiece of the phone, & said, ‘whaddya think?’  She said, ‘do whatever we need to do correctly.’  I told the surgeon on the other end of the phone, ‘dinner’s ready – I won’t be able to make it this time. I decline.’ 

“Thinking about it now, I’m surprised I had the balls.  But at that point, I was too young not to have the quality of life. 

"So about four months later they call me.  This time they didn’t offer me an organ.  They told me to come to the hospital, which made me wonder....  

“I was out of the hospital in 9 days. Being the month of December, I went in on the 9th, I hadn’t done my Christmas shopping for my wife, I came out on the 20th.  On the 24th I coerced a friend to drive me to a shopping mall, as well as to the office so I could check on the mice to make sure they were working.” 

Skeeter winked, as a Rolling Thunder co-worker was right there listening to that last comment.

“So anyway ... you gotta envision this: it’s the holiday season, the mall is filled with people, I got a good friend who’s takin’ the person that’s a good friend of his to the mall and knows he’s not the person to be out in public wandering around post-surgery – ya know – stapled up the middle, just to go xmas shopping for my wife.”

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The Road Back

“I was transplanted on the 9th & 10th of December – and the 1st week of March I was riding around Daytona Beach on a Harley.  When I went back to the clinic, the doctor says, ‘got any pain?’  I says, ‘I have a little upper body pain.’  He says, ‘when’s that?’  I says, ‘when I put the front wheel back down on the motorcycle.’  He says, ‘I didn’t say you could ride a motorcycle!’  I says, ‘you didn’t say I couldn’t.’  He’s says, ‘well, where were you doin’ it?.’ ‘Daytona.’  ‘What were you doin’ there?’  ‘I told you I was going on vacation.’  ‘oh.’"

Since hepatitis C reoccurs after ya get a liver transplant, the Straightup asked Skeeter how long it took for his hep C to come back. 

“It never left ... I just didn’t show an increasing load.  It was just kinda there.  ... and that may be because of how hard my body fights infections.  There’s just so much they don’t know about hepatitis.  There’s actually more they don’t know than they do know ... and if you get an honest doctor, and an honest clinic, they’ll tell you that.  Then about four years ago, it started spiking, it was back to the interferon." 

Interferon ... again

"The hepatitis specialist & I talked it over.  I was really fighting it, because of the memories of Intron-a.  The Intron-a was hell.  The pegylated – if you plan it right – is not too awfully bad.  The pegylated interferon I was on (Pegasys), you do a shot once a week, then you do the ribavirin on a daily basis, twice a day.

“Because I felt I deserved the quality of life more than work did, I did the shot on Sunday night, took a little bit of one of the over-the-counter cold remedies, half of that, and a couple of tylenol and I’d go to bed.  That way, when the worst of it hit, I’d be sleeping.  Then I’d get up the next day and start my routine. 

“Mondays were a little tough ... but everybody has a shit Monday, so ya blend right in.  Tuesday’s better.  Wednesday you’re startin’ to hit your strut.  Thursday & Friday, when everyone else is fading, you’re doin’ good, and then you’re healthy for the weekend.  That was the payoff.   That was the carrot out on the stick for me to do the shit. 

“See ... originally I did the Intron-a ... the every other day shot (groan).  The second time I did the pegylated interferon & ribavirin for about 11 months.  That was a long, long year.  When I got done with the interferon, my viral load went right down to almost undetectable.  The surgeon that I’m dealing with – the hepatitis specialist at the clinic that I go to – had seen a study where they continued to use the ribavirin afterward.  So now he’s had me on that, and just after Sturgis last year – in August – it showed no virus. 

“I think it’s a roll of the dice.  Ya know how some people take aspirin, some people take tylenol, and other people have to have something different.  I think it has to do with your body’s way of functioning.”

Riding & Interferon

Since riding & true bikers are inextricably linked, we asked Skeeter if hep C treatment interfered with his ability to ride.

“I rode everywhere!  I went to Daytona.  I rode out to Sturgis.  Carried everything in the ice box.  I’d tug a little trailer behind the bike.  Ya know the ice box on the tongue?  That’s where all my meds were. 

“Frank (a photographer friend of Skeeter’s who’d just joined us) would see me – when I was eating just fruits & veggies – he’d see me just have a banquet of just raw veggies at night.  But that’s what I was doing.  Yea, I’d travel doing that and I’d work doing that.  I think it was my way of controlling the impact of it on my psyche.  I’d keep so busy and so committed, that I didn’t have time to wimp.”

We wondered if his doc ever planned to take him off of the ribavirin. 

“It’s working.  We’re not messing with it.  I’m almost superstitious about it, and for a change I have a specialist who believes that.  He’s not gonna mess with something that’s semi-functional.  Right now we’re doing a hep panel every 3 months, and do my regular stuff.  See, what people also have to realize, is that when you’re transplant you have to have anti-rejection drugs.  So, you have other issues that have to be monitored. 

“Luckily, my body likes the anti-rejection drugs.  My body loves steroids.  Everything has really strange, strange effects.  The interaction of drugs is another big problem, and they don’t always know what interaction does ugly things & what interaction does good things.“

With liver transplants, if complications come up, then they typically do in the first twelve months.  So we asked Skeeter to tell us how he fared that first year.

“I had a bile duct failure.  I had a bile infection, which was probably one of the most painful things in my life.  I mean, I’ve been beaten, abused & busted up, and that was the worst thing I’ve ever suffered through. 

“We had some issues with nerve bundles.  With post-surgery things ... ya know, like where they’d gone through, and had either perforated or agitated nerve bundles.  But other than that ....  The bile duct infection was the worse deal. 

“What they did was repaired it from the outside.  They went through here (Skeeter points to his liver).  I came out of the anesthesia about ¾ of the way through it.  The surgeon looks over at me & says, ‘how long you been with us.’  I says, ‘too long.’  He says, ‘we’ll get this done now.’  But, that’s the price of living.”

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The Transplant Decision - not always easy

Just as going on hep C treatment is YOUR decision, so is getting a transplant.  If we come to that point with our hep C, we may have no choice but to need a new liver, but going through the transplant is your choice to make. 

"Look at my quality of life.  You’ve seen me when I’m beat up; it shows.  A long, hot day at the end of the week is my worst nightmare ... like when you met me at Sturgis.  We finished taking off that day & went to dinner.  I went to bed, got up & functioned the next morning.  I know the way you are when you’re in the middle of hepatitis C killing you; especially after transplant. If you can get through the ugliness of the treatments – and make it work for you - it's well worth it. 

“The only thing bad about the transplant system, is that they want to transplant you the day before you die ... not when you’re healthy ... because they don’t have enough organs. 

“Once the virus is gone, and your liver regenerates, your life gets better.  The morning I woke up after surgery when they transplanted me, I knew I was healthy.  You can feel the difference.”

Rolling Thunder Frames & Skeeter

Rolling Thunder ... where they “do it all, because they can.”  Nestled in Chateauguay, Quebec, Canada, they’re the leading frame manufacturer in North America, whose reputation is built on their high-quality custom motorcycle frames.  They consistently exceed the expectations of expert, novice & first-time bike builders.  I know this, because I read it in their pamphlet.  ‘Sides ... they got Skeeter.  So I asked him about his relationship with Rolling Thunder Frames.

“We get along well.  This is one of the first things I’ve worked with, where I didn’t have to jump start the person I’m working with doing the shows every morning.  Sammy’s up & ready to go.

“My life is a little eclectic.  I know & associate with people from just about every segment of the circle ... all 360° ... and I enjoy that.  I play with a lot of different toys. 

“I don’t know why, but mechanical things & I communicate well ... always have.  I grew up around motorcycles ... and diesel trucks, race cars,    My ol’ man was an on-the-road trucker & a biker.  I did a stretch of road construction & bridges – heavy industrial construction – where I either ran the deal or owned it, or whatever ... to make money.  Got sick of that because it was boring – all it was, was money – it wasn’t people.  ... and this is people.”

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Message to People Living With Hep C

When you’re in this man’s presence, it doesn’t take long to see why this old school biker is so well respected.  You feel it.   We’re talking about a man who came out from under anesthesia (during surgery from the 1st-year complications) with a response of “but, that’s the price of living.” 

“Hepatitis C’s not a joke ... the cure’s worse than the disease.  But the alternatives are a lot worse.” 

“But, what people who are suffering with hepatitis C need to realize is that it is very, very bad ... but it’s not a death sentence.  It isn’t.  It’s a tough stretch of road, but hell, you can get that just by getting out of the parker bushes.  It’s not a big deal.”

“If I was diagnosed with a thoroughly new incidence of hepatitis C, I would run – not walk – to whatever practitioner that I could find, and had faith in their ability to give me the proper treatment.   If I wasn’t happy with their answers, I'd ask the question again - get another opinion.  Even if I had to spend every waking moment, I'd fight the disease. 

“Everybody has to do it different.  There’s no sure-fire tune up.  If it’s not working the way it should work, find another way to do it.  Ask more questions. 

Dealing with the docs

Skeeter's got a real healthy view of the patient/doc relationship (in our humble opinion).  So we asked him what he thought was important about picking out a doctor.

"You have to be able to communicate.  They have to realize your threshold for pain.  They have to realize your commitment."

“The more questions you ask of your healthcare people, the smarter you’re going to be.  They owe you the answers.  They are employees.  Most of them will forget that.  But the higher quality of healthcare people you have, the better off you’re going to be, because the high quality ones realize they’re hired guns. 

“By the same token, the better you take care of yourself, the better they’re gonna treat you.  Ya know ... if it’s a program of ‘1, 2, 3, 4,’ then you do it ‘1, 2, 3, 4,’ everytime.  Ya gotta be a good subject.  If you’re a bad subject, they’re not gonna put any more effort into it than you do.  You get back from it, what you put into it from the people you’re working with.  So, if you’re doing it half-assed and you’re not paying attention, the only person that’s gonna lose is you.  If you’re doing it with a lot of intelligence, a lot of enthusiasm, your healthcare professional will respond to that. 

“You treat them with respect.  You do what they tell ya because it’s the right thing to do.  You ask questions.  You raise your chances of success everytime you do something like that. 

“Then once you win, you can go back to your life.”

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Got Hep C? 

      Don't Know?   

                     So ...

Get Tested, Knucklehead!

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