RRP-Recurrent……yuck.

Two cups of coffee in…..

Today’s story will be somewhat exposing as I honestly do all that I can to avoid the topic and avoid being “sick.”  Yet, something tells me I won’t be remotely credible down the road if I don’t open this door to expose this part of me that is so much of who I am, even if I choose to not let it define me. 

I have RRP.  Recurrent Respiratory Papilloma.  There. I said it.  I despise RRP.  I would say hate, but I strongly believe that we don’t comprehend the word hate here on earth. I pray that I never have such a hardened heart that I understand what hate truly is.  We use it so casually.  It’s not casual.  Ok…see…squirrel.  Back on the railroad track now….maybe hate can be a topic for another day. 

My journey with RRP started at the age of five after several doctor visits to find out what was wrong with my voice and my breathing.  I’m told that asthma was mentioned several times, but due to a series of events that I have no memory of, we learned that simply wasn’t the case.  Memphis, TN at Lebonheur Children’s Hospital is where my story begins.  ENT visit.  ENT diagnosis of laryngeal papilloma (the common name at the time).  Immediate surgery.  Surgery one down.  Over 250 more to go..and still counting.  I don’t remember a life without RRP, but I do remember so many of the procedures as a child.  I remember the oxygen tent.  I remember the bubble gum smell of the anesthesia.  I dreaded the mask, and still do.  I remember the pre-op shot they used to give that was so very painful and how dry it made my mouth.  I remember the sore throats and that somehow jello, popsicles and ice-cream made up for the fact I just had surgery.  I’ve had procedures in so many places.  As a child, Memphis, Houston, New Orleans….all the same to me. Cold OR.  Pain.  Another surgery.  I was the kid called “Donald Duck” in school due to the sound of my voice.  I was the kid who missed sometimes every two weeks for procedures.  For probably almost fifteen years, the story was the same.  Surgery. Home. Recover.  Live life. Repeat.  Then, it all began to change. 

After years of what started out as scalpel procedures then moved to CO2 procedures, my body began its rebellion.  Scar tissue.  Two words that took what had become just a routine part of my life and turned it upside down and around again.  Procedures became very frequent.  This time, the growths weren’t aggressive, the scar tissue was.  To maintain an airway, several trips to the OR to manage the webbing on my vocal cords took place over probably eighteen months.  I laugh now that I see the word manage and scar tissue even on the same page.  Scar tissue wins every single time.  Fast forward to around 1992 or so.  “Kim, we need to try a stent to see if we can keep your vocal cords open long enough for them not to web.”  “Temporary tracheostomy.” “Open procedure.”  I had grown so weary of procedures every two or three weeks, I said yes.  I had been married for about five or so years.  Seemingly way too soon to test that “in sickness and in health” part of the vows.  Yet, it was already in test mode and the test would continue far longer than anyone could have predicted at the time.  Methodist Hospital, Memphis.  I wasn’t nervous, probably more resigned to this procedure and too tired to even argue about it.  I woke up from the procedure with probably a five inch incision across my neck with two exterior “holders” in place to keep the stent suspended internally.  The trach.  This one was to be “temporary”, so hello Shiley plastic number 4.  I was taught how to care for the trach and sent on my way a couple of days later for the four-six week stent process.  What they don’t tell you is how to handle the public reaction to a very visible plastic tube sticking out from your neck and the secretions that don’t care if you are out in public-they are coming with or without your approval.  I retreated (something I still struggle with to this day).  I felt like a monster and sounded like one and had secretions that would rival those found in horror movies. Then it was time for the stent removal.  Two weeks later the trach was removed.  I had “my life” back.  It seemed to work, for a time.  Maybe eight weeks later, I noticed the change.  I probably ignored it for a couple more.  Surgery is hard folks.  It’s just hard.  The older you get, the harder the recovery, the more likely you will get sick…it’s just hard.  Regular procedure number…well…does it even matter?  This started again and carried on for maybe a couple of months when “the day” happened.  I couldn’t breathe.  The stridor was loud.  My husband came home and we made the drive to Memphis to the doctor’s office.  Emergency surgery.  “Kim, we can’t get a handle on this webbing.  We need to put a trach back in.”  Tears.  Nothing but tears.  To this day, I don’t know why my doctor at the time opted to place a metal trach this time, but I am forever grateful.  It was better. Not great, but better than the plastic.  My new normal began. 

It’s been twenty-one years since the trach was placed that was “to stay.”  Imagine a delicate tulip with a large piece of rock in between its petals.  That’s my larynx.  Imagine trying to get that rock removed without damaging the tulip-that’s been the fight of my doctors for years now.  The rock remains.  It can be moved, but it is just stronger than the tulip.  So, the choice in my life now is do I breathe or do I not breathe?  The papillomas still grow and have grown below my larynx.  I never get used to the well-meaning questions of strangers, but I don’t grow bitter over them either. 

I almost died because of surgery about twelve years ago.  I never feared surgery before then. Now, I do.  In a way that I cannot put into words.  I fear it.  I fear not waking up.  I fear the same thing happening again.  I know, I know…God says not to fear/worry, but I am human.  I fear.  I worry.  So, most days I put my head in the sand and try to ignore RRP and all it has brought to my life.  I don’t want to be “sick.”  I’ll never know what it’s like to sing.  Swimming, skiing, all those wonderful water activities are no longer part of my life.  I don’t have a “voice” like others.  It’s barely a whisper some days. This is my life.  For whatever the reason, this is my life.  Yet, and I cannot believe I say this when I say it…..I wouldn’t want another life.  Sure, I would love to be able to enjoy the water again, but this life has been pretty awesome.  I’ve had an experience where I know Christ was right beside me…..I’ve helped get others to treatment for RRP that may have saved their lives.  I’ve had two amazing kiddos and now I get to be a Mimi.  I’ve had the joy of this journey being with Lee.  To know that without any doubt, God sent me Lee is worth it in some odd way.  Lee has honored in sickness and in health to the very core of the meaning of that vow. 

Do I wish I didn’t have RRP?  Sure.  To say otherwise would be false.  Do I want a different life? No way. I think knowing that God did NOT give me this disease, the downfall of man did makes all the difference in the world.  I’m alive.  I’m breathing.  For that, I am thankful.  Are there days that I am just tired from the effort?  Of course.  That’s life.  So, if I don’t talk to you, please know I am not being rude.  I’m just tired on that given day/time. 

I’ve left so much out and I’m sorry for that, but this is a blog-not a book!   For more information see below.

RRP:  http://www.rrpf.org/whatisRRP.html

3 thoughts on “RRP-Recurrent……yuck.

  1. Thank you so much for sharing your story. I have a 28-year-old daughter who has undergone hundreds of surgeries since she was diagnosed with RRP at the age of 3. She has relied on the same wonderful surgeon up to now but, since she recently moved from Oklahoma City to a little town in rural Arkansas, she needs to find a new surgeon — with plenty of experience operating on patients with RRP — pretty soon. I stumbled upon this post because you mentioned that you had undergone surgery in the Memphis area. My daughter lives pretty close to that city, so I’m trying to help her find a new doctor there. Can you recommend any specialists in your area? She needs to find a new surgeon — with plenty of experience operating on RRP patients like herself — as soon as she can.

    Thank you!

    Melissa

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    • Thank you!!! I can only share what limited information that has been shared. Memphis ENT Group has good ratings and does operate out of Methodist. She would simply call and express what she is looking for and they could route her to best MD. Dr. Rande Lazar in Memphis has a good reputation, but I am uncertain as to how current his adjunct therapies and such is. Most people I know in the Memphis area travel over to Vanderbilt to their voice clinic. It’s top notch. Most in Arkansas travel to UAMS in Little Rock. So much of this is just a comfort fit and it may take consultations with several before she finds the one she trusts the most. I’ve had procedures at UAMS in the past, and I found them to be knowledgable. My doctor there has retired since I last used him.

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