Fantastic Friday-Renee’s Story

Today’s Fantastic Friday RRP feature is by Renee Sawn.  Renee lives in Florida (ok, jealous of that factoid) and has been a very active member of the RRP community.  Read her story and notice that she does have specific financial needs that maybe someone out there can help with. The financial toll, even with insurance, is enormous and I cannot imagine the stress Renee feels on a daily basis.  Her faith in God is strong and she is always the first one to encourage a fellow RRP family member.  

Renee

Renee

I have RRP ( Recurrent Respiratory Papillomatosis )

I have had this disease all my life. I don’t have much of a memory just bits and pieces from my childhood dealing with this disease.  My first surgery was when I was a 8 (1978). Before my surgery I had been seen by many doctors … Trying to find out why I didn’t have much of a voice when I talked it was very hoarse. I remember going to speech therapist and being told after many sessions that I was not improving. I remember we took a long trip to a hospital.( All children’s hospital )  And finally my mom got answers and a diagnosis. Next memory was surgery day. I remember lots of ice cream and Popsicles and was told I needed to rest my voice for 2 weeks. I do remember after that people saying oh your voice sounds much better and telling them I had surgery to fix it… Time passed my voice started getting hoarse again.  Back then this disease was very rare to most doctors and they themselves did not know much information. So my parents didn’t know much either. They were told to have it checked every few years. When I did I was told it was scar tissue they were seeing and that is the reason for hoarseness…(now knowing it was tumors they were seeing) so at this point surgeries where never recommended. (I believe I dodged many in my life knowing what I know now).. some of the bad memories of having RRP .. All through my childhood I was teased because my voice was different from others. Called me names like froggy ..  Spent many times behind closed doors crying because I didn’t want people to know it bothered me. I had difficultly feeling confident about myself. I didn’t want to meet new people because I didn’t want them to hear my voice. I have been asked many times are you sick? Or sounds like you have laryngitis you should go see a doctor .Over the years I also had coughing fits.  Would go see a doctor and because of the lack of knowledge I was sent home and was told you have bronchial infection take these meds… With lack of knowledge  this is what I did …I never got better just dealt with it and ignored my my coughing fits and my hoarse voice thinking it was my normal….going forward to 1993 I started with a company cleaning houses ( didn’t have to do much talking for this ) within time I was promoted to training then sales then to working in the office. This required me to use my voice. Oh boy now I had to speak to strangers .. There wasn’t a day that went by I wouldn’t hear something about my voice…I would just say I’m healthy I have RRP and doc says I’m fine it’s scar tissue that makes me hoarse (at that time that’s all I knew) this was my normal ..   Skipping forward…     In August of 2013 I had totally lost my voice and had difficulty breathing. It started with having a hard time talking.  I found myself straining to get anything to come out … and then going to a whisper thinking I had laryngitis… Unfortunately it changed my whole journey of life…. Over the years I had accepted what I thought was my normal I had a hoarse voice and it had a name RRP… so at this time thinking this something different I was dealing with… Because of where my voice was I had been terminated from my job of 20 years. Because I could no longer perform my duties (I was an office manager and required me to have a voice)  I was at a loss..here I was out of work .. No insurance …I didn’t really know where to start … I was out of my comfort zone..  I knew had to find a doctor that could tell me what was going on. I ended up going to the ER … I was scared and breathing was difficult .. I didn’t have a voice .. I didn’t know what was going on … Well I was sent home with no diagnosis and told to go see ENT … I saw one the following day. I did let the ENT know as a child I was told I had RRP …lucky for me this ENT knew what the disease was. First thing he did was looked and said you need surgery … And stated he was not able to perform because he was not trained in this and the equipment to perform is not available in my area so I needed to make phone calls to find a doctor who did. I would like to mention he knew that I had just lost my job and had no insurance and my emotions showed when I was told what was going on. He walked me out to the front to pay for my visit and told the nurse no charge for today…my words where “thank you God Bless you there are kind people”…well onto my next journey…. That was a challenge … my voice was at a whisper and had to use the phone to call and explain to whom had answered the phone what I had and what I needed. I had made many calls and kept hearing no we don’t do that surgery. I was at my last wits thinking is anyone out there do this ? I called my ENT crying and let them know I couldn’t find one and it’s been very difficult to keep going because the more I used my voice the more difficult it was for me to get any noise to come out. They were a big help and the next day the office called back and found someone that just came into my area that could see me and was specialized in this disease. The office is an hour away from me. This is where my frustration comes in I HAD NO INSURANCE …NO JOB how am I going to pay for this. I reached out to find solutions,  had doors shut on me because my husband worked and made too much $$ for help ?? Not sure how this works for a family of 4 ( I have 3 children one living on her own 26 and two 13 & 8 ) with one income how this doesn’t qualify for NO help ..that’s when my ex- sister In-law started a fundraiser to help raise money. I was blessed by many to donate to help with getting me to my first visit for my scope. This is where it was confirmed I needed surgery. That was my first hoop .. Now off to the hospital to find out cost … Yikes $50-60k … Now what! I did lots of praying … Well this is where we qualified for medically needy ..so my surgeries where covered …   I had 2 surgeries in Oct & Dec 2013 that corrected this & actually improved my voice quality. I now go every 6 weeks for a scope to keep the disease monitored. It’s been a long struggle. I have had to find ways to pay my bills and medical expenses (if medical is under a certain amount it’s on ME) With yard sales , fundraisers , churches and family & friends I have gotten through …  I can say I do look at life in a different way. The small things in life have now become the big things in life… I have been searching over a year to find work with no luck of getting hired. I lost count of how many applications I filled out …

Many times I pointed my fingers at me and took blame for our troubles. I had anger and said the Why Me ..but had to keep positive on the outside… I am a believer of God and continue to keep my faith … It’s more stronger now than it was because each time I was ready to give up I said a prayer and my prayers and they were answered… I am blessed with a beautiful family. My 3 children & husband … They have taken the burden of my disease & have been so supportive.  I truly am blessed. My family & friends have been a blessing… Strangers that I now call my family have been my blessings .. an extended family the RRP family …

In February 2014 I was told I now have the cancerous form of this disease.   This will be monitored and also told more growth has formed.  My next surgery date had been scheduled August 22nd 2014 to remove more tumors that have grown back this time we were going to do what they call in office visit … No going to sleep , less time , and cost was not as high verses in hospital … I was all in ….  Well couldn’t do it … 3 Valiums later ( I get anxiety when I get scoped) and numbing several times my gag reflex just wouldn’t allow. So have to stick with going to sleep. .. We are going to give it more time to let growth grow more unless I see my a change on my vocals or breathing … So next visit Nov 2014 … I started a Facebook page to help me through this and for awareness … https://m.facebook.com/Sunshineswfl .. Keeps my mind on the positive ..

For now keeping my faith for that cure…

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