Renee's medical expense fundraiser

I have RRP ( Recurrent Respiratory Papillomatosis ) I have had this disease all my life. My first surgery was when I was 8 (1978). All through my childhood I have been teased because my voice was different from others. It didn't break me it made me a stronger person as I became an adult. I have been asked many times are you sick? Or sounds like you have laryngitis you should go see a doctor ... I did and because of the lack of knowledge I was sent home and was told you have bronchial infection take these meds... With my lack of knowledge I did what the doctor said.... In August of 2013 I had totally lost my voice and had difficulty breathing. Unfortunately it changed my whole journey of life. I had been terminated from full-time 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...I now had to find a doctor who could treat this....It took several calls to find one. Finally I did. I had 2 surgeries in Oct & Dec 2013 that corrected this & actually improved my voice quality. 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 not had any success finding a job. And pray daily for someone to say yes we would love to give you an opportunity.. When asked why I left my last position. I let them know ... Is this the reason they won't give me the opportunity ??? ... 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. February 2014 I was told I now have the cancerous form of this disease. This will be monitored. My next surgery date has been scheduled August 22nd 2014 to remove more tumors that have grown back. Will this ever end ?? While I breathe I HOPE ......
I have now educated myself more on this disease. My journey is now is spreading Awareness. This what I know.....
There is no cure for RRP.
Surgery is the primary method for removing tumors from the larynx or airway. Because traditional surgery can result in problems due to scarring of the larynx tissue, many surgeons are now using laser surgery, which uses an intense laser light as the surgical tool. Carbon dioxide lasers—which pass electricity through a tube containing carbon dioxide and other gases to generate light—are currently the most popular type used for this purpose. In the past 10 years, surgeons have begun using a device called a microdebrider, which uses suction to hold the tumor while a small internal rotary blade removes the growth.
Once the tumors have been removed, they have a tendency to return unpredictably. It is common for patients to require repeat surgery. With some patients, surgery may be required every few weeks in order to keep the breathing passage open, while others may require surgery only once a year. In the most extreme cases where tumor growth is aggressive, a tracheotomy may be performed. A tracheotomy is a surgical procedure in which an incision is made in the front of the patient’s neck and a breathing tube (trach tube) is inserted through an opening, called a stoma, into the trachea (windpipe). Rather than breathing through the nose and mouth, the patient will now breathe through the trach tube. Although the trach tube keeps the breathing passage open, doctors try to remove it as soon as it is feasible.
Some patients may be required to keep a trach tube indefinitely in order to keep the breathing passage open. In addition, because the trach tube re-routes all or some of the exhaled air away from the vocal folds, the patient may find it difficult to speak. With the help of a voice specialist or speech-language pathologist who specializes in voice, the patient can learn how to use his or her voice.
Adjuvant therapies—therapies that are used in addition to surgery—have been used to treat more severe cases of RRP. Drug treatments may include antivirals such as interferon and cidofovir, which block the virus from making copies of itself, and indole-3-carbinol, a cancer-fighting compound found in cruciferous vegetables, such as broccoli and Brussels sprouts. To date, the results of these and other adjuvant therapies have been mixed or not yet fully proven.