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30Apr/13Off

The Truth About Hemophilia

A better title for this article might have been, Hemophilia is a Pain in the Butt!

Or even, Allow Myself to Explain -- Myself.

However, I stuck with this one. Basically, I thought I would introduce you clotting readers to the easy bleeding community through a story.

I'm currently dealing with a bleed in my left thigh (hamstring) and knee. It is a fairly bad bleed and required seven days of factor to stop the bleeding! Let's step back in time two weeks to where this all began. Okay, I was in Las Vegas for an executive meeting. After a very nice dinner, I went with a group to Coyote Ugly and did some dancing. I was on my second split (you know when you spread your legs until your rear hits the ground - that) ... Yes I'm 46 years old, yes I'm a hemophiliac, yes I'm a man, yes I did the splits — Twice.

I've done the splits plenty of times before, but this was different. I think it was a combination of beer spilled on the floor, and me sliding on the stick horse (yes, there was a stick horse involved too. Hemophiliacs are strange), but I managed to drop deeper and faster into this split. Then it happened ... I felt my femur pop out of my hip and then it slammed back in.

During this mishap, I felt something along the lines of a big muscle tearing. Actually, it was ... My hamstring managed to get seriously damaged during this stupid, freak accident that I brought upon myself by showing off to ladies (and guys) half my age. Regardless, I now had the tough job of standing and stepping back without appearing like I was in excruciating pain. This part was kind of easy, because I'm a hemophiliac, and I deal with pain for a living (don't worry folks, trained professional here).

Somehow I managed to casually saunter back to my group of guys with a smile on my face. The crowd was cheering and they quickly forgot about the old man who just did a killer split while riding a stick horse. Nice visual, right?!

After a moment, I turned to one of the fellas with me, leaned in, and whispered, "I think I just tore my hamstring."

He laughed and slapped me on the back. Then he said, "You are hilarious, dude!"

He obviously thought I was joking. I wasn't joking.

Deciding to get back to my room, I tucked my tail between my legs and snuck out of Coyote Ugly. One of the painful truths about Vegas is that no matter where you're staying, you will have a mile-long walk through smoke-filled rooms that are chiming with slot machines ... Well, I limped like a champ, wincing with each step as I found my way back to my hotel room.

The next morning I woke to a very stiff leg and a slight headache (I managed to drink a martini or two during the previous night's activities). I now had a five-and-a-half hour long flight home to Maryland. That was an adventure in and of itself!

Once home, I iced and elevated my leg. By this time, my thigh was clearly swollen and the pain was off the hook (in a bad way). The next day I went to the Emergency Room to receive my first dose of Factor VIII. My visit was tumultuous to say the least, and I ended-up sitting in the ER room for ten hours! That may sound like a lot of time to clotters, but it is par for the course for me (the mild bleeder). The ER told me I would do three doses and be done.

Comic Relief: Before my first dose of medicine, the nurse confided in me, "I have to make you aware that you have a 1 in 100,000 chance of contracting HIV or Hepatitis from this medicine."

No shit, Sherlock! Perhaps you should read my friggin' chart...

Editor's Note: As far as I know, Factor recombinant is virus free and safe for usage. The nurse's statement may have been a mistake. I just found it funny, so I included it in my story...

Ego digresso ... Well, after three doses and a day, the bleeding was still going strong and my thigh was bigger than ever. Now a brilliant bruise was popping out on the backside of my thigh.

I went in to see my hematologist and he added four more days of factor to tackle this major bleed.

Because I do not keep my own Factor, and only need it once in a while, I am stuck at the mercy of the hospital, and go there for my daily dosage. These trips almost always ends up being in the Emergency Room. So, I spent seven days in the ER ... Fortunately, the remaining visits got more-and-more efficient. By the time I was finishing up my week of Factor VIII adventures the ER was managing to get me in and out in under three hours!

Did I mention that my insurance has a $200 co-pay on EACH Emergency Room visit? Whelp ... It does!!! As if this bleed induced-pain wasn't enough, the dent in my wallet was enough to give sticker shock to Donald Trump!

I'm now two weeks after the injury, and fairly certain that the bleeding has stopped. But, my doctor has ordered an MRI visit to make sure, and to determine the amount of damage to my muscles. I just want to get back to my workouts ... ARGH!!!

Welcome to my world ... Limping around like a crippled animal, in pain most of the day, and humbled by my silly accident. That is the "truth about hemophilia."

I sincerely hope you enjoyed my lavish tale of pain, torture, and survival.

Signed,
the Easy Bleeder

p.s. I will heal over the next couple of months, I will go back on to the dance floor, and I probably will do the splits again ... Probably.

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Posted by Vaughn Ripley

Comments (5) Trackbacks (0)
  1. Love this guy! Totally nuts, amazing, funny, dangerous, heart of gold, inspirational … There should be more people out there like him! Read his book Survivor for more of this!

  2. Vaughn — I always knew you had a sense of humor–now I am convinced you are funny and at least a bubble off plumb. I do crazy stuff like hang glide but only once a year. I couldn’t do a split in my best days. Really I do admire you for living for the moment — tomorrow will come — or not. BUt for today it is happy time. Good luck on your next split or tumble or life challenge.

  3. Hi Vaughn, My husband pointed your blog out to me and I’m so glad he did. I try and take in as many first-person accounts of haemophilia experiences as possible, as my husband is a severe A type haemophilia with Hep B and ex-C. It’s so important to get the message about the chronic agony of the white pain haemophiliacs experience in addition to the loss of quality of life. Not trying to be negative, I want to read your book as the title implies you have been a fighter since, of course, the day you were born. I’m 45 and met my husband (47) four years ago. I knew little or nothing about the genetic disorder until I met him and he got me to read Bryce Courtney’s April Fool’s Day straight away. I’m glad I did. Damon Courtney was born three months before my husband and much of his childhood treatments and VERY lengthy hospital stays were actually in the same Sydney hospital. I haven’t grown up with the disorder, I’ve come to know it later in life. I laughed and nodded at your account and agree that understandably, haemophiliacs have a real tendency to just go off the hook for a challenge or danger. People tut-tut, but I say “well naturally a bleeder would want to do something wild and fun, they hate being cocooned!” On one of many visits to the ER, the doctor actually said to my husband, “how long have you had haemophilia?” Yup, I got a taste of the ignorance of the disorder by the medical community and boy did it make my blood boil! Anyway, I’ll go, you don’t want to hear my rantings, I just wanted to say thank you for sharing tales of your fight with HIV and your daily challenges. I won’t tell you to go easy coz I know that’s just waving a red flag to a bull;). Take care, Desiree xo

  4. So nice to hear from all of you! I love to read the comments and hear how people react to my articles. I’ll keep being my silly self.

    Desiree – Sounds like you have your hands full with a middle aged adrenaline junkie bleeder. HA! If you want to sift through my posts, you can select “categories” on the right and choose “Hemophilia” to narrow down the list to my other posts about this fun disorder! Hugs and love sent your way! Tell your hubby to keep fighting the good fight!

    XO to all

    -V

  5. LOL – too funny – Wish I could print this in our newsletter, but I’m not sure some of our younger families would find it so amusing! I’ll forward it to my brothers.


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