Friday, November 21, 2014

Life With...RRP

It is my pleasure to introduce you to my friend and colleague Laura!  I've known Laura for a few years now, and met her when she convinced me to join the union at our company.  And it paid off--our union was able to secure free healthcare that year for all the employees at our job! Crazy, right?!  Some things have changed since then (we have premiums now; whomp,whomp) but Laura is still one of the few people at my company who actually understands what life is like as a working sick person!  Enjoy getting to know Laura!

Who are you and what are you passionate about?

I'm Laura, a 34-year-old lawyer, journalist, and union activist. I am passionate about fighting for fairness, equality, and civil rights for everyone. Oh, and there's a special place in my heart for all things Disney.

Tell the readers a little about your disease, and how you reacted when you were diagnosed.

I have recurrent respiratory papillomatosis, or RRP for short. A lot of people have heard about the human papiloma virus (HPV). RRP is a rare type of HPV that grows mainly on the vocal cords, but also can grow in the trachea, bronchial tubes, and lungs. The wart-like growths have to be removed surgically, usually with a laser, and—here's the recurrent part—they keep coming back. However, it isn't contagious and is definitely NOT an STD.

I was diagnosed with RRP when I was 11 months, so don't remember how I reacted. I'll bet my parents were a bit freaked out, though.

People with a chronic illness face a lot of challenges (A LOT)!  --What’s one challenge that you’ve faced so far in this journey and how have you dealt with it?

The biggest challenge with RRP is the repeated surgery. Like full-out general anesthesia surgery several times a year. I lost count a while ago, but I'm guessing my total lifetime surgery count is somewhere in the neighborhood of 300. 

It's not easy having to go to the hospital all the time, getting poked and prodded with needles and feeling like crap for several days afterward. I'm going to be honest--I've cried over it on several occasions.

But I'm a people person, so I usually crack jokes with the nurses and other staff while I'm there. I hate to admit it, but I like the high of the general anesthesia before it knocks me out and whatever drug combo they give me before that to calm me down. And throat surgery is a great excuse for eating ice cream.

Who or what helps you make decisions about your health?

My parents helped me at first, and my husband has been with me on this for the past 9 years. But the biggest help was actually the RRP Support Group I found on Facebook, a group specifically for patients with RRP and their friends and family. Everyone shares their experiences and different types of treatment their going through so that we're all up to date on the latest research. It's what made me decide in 2010 to start going to Johns Hopkins University Hospital, one of the best hospitals in the country (and only 45 minutes away!). That was one of the best decisions of my life.

I have a ton of funny and memorable hospital stories. Can you share one of yours?

My surgeon had me and my parents come in for surgery early in the morning because there was a chance he would have time around 8:30 to squeeze me in instead of the 3:30 time slot I was originally given (which really sucks when you can't eat or drink all day). Well, that didn't work out, but he insisted we stick around the whole freaking day just in case (I actually went for surgery at 3:40).

By mid-afternoon we were all tired and getting very slap-happy, when this doctor started walking back and forth in front of the waiting area and he seriously looked just like a pirate in scrubs. Of course my dad started making all these "arrrr" noises every time the guy walked by. In between standing on one foot on some wooden block that had come out of the wall.

What advice do you have for other people, young or old, who are living with your disease?

First of all, know that there are others out there like you, who share your experiences and your raspy voice. We may have a rare disease, but we're not alone!

But more importantly, don't ever settle for disease maintenance. There is no cure for RRP, but doctors and researchers are making breakthroughs in treatment all the time, and the latest one could make a big difference for you and your quality of life. Insist that your doctor pursue these treatments, and if he or she won't, get a new doctor.
And finally, what brings you joy?

My family, my friends, my union brothers and sisters, and good food!

If you want more information about RRP, Laura recommends visiting the website for the Recurrent Respiratory Papillomatosis Foundation.