Journey to The National Jewish Hospital

 My name is Amanda Turner. In 2017 my life changed forever when I was walking up my stairs, felt a pressure on my chest, and began to cough. This led to me having a severe chronic cough and stridor (a harsh vibrating noise when breathing, caused by obstruction of the windpipe or larynx) for an entire year. I was not able to talk and any exertion would make my cough worse. I would eventually get a tracheostomy done in 2018 in an attempt to keep my airway open in the event my vocal folds (chords) decided to close and block my airway completely. My diagnosis—Spasmodic dysphonia which seems like a simple condition is anything but, for some reason my brain is not talking to my muscles correctly in my voice box. I have had a multitude Botox injections (a common treatment), but none have helped. I see a pulmonologist, neurologist, and an otolaryngologist. I have seen many specialists in Michigan, and because of the rarity and complications that have developed from my Spasmodic Dysphonia (SD), they have determined that I need to go to the Mayo Clinic in Rochester, Minnesota to see each of these three types of specialists. My specialists, whom have been beyond helpful, can no longer manage my medical complications. I am an odd duck, as 1 in 100,000 people are diagnosed with SD, and there is very little known about it even among specialists, because my form of Spasmodic Dysphonia does not follow the typical manifestation. They do not even have a program for my type of dystonia at the National Institute of Health even though they have a dystonia program for more common forms. Recently, my doctors have told me that my trachea has partially collapsed, which is a complication from my Spasmodic Dysphonia. My Spasmodic Dysphonia manifest in coughing. It is nothing when I have an attack that I cough for several hours straight. Because of the cough , I develop what is called granulation tissue. It tightens around my stoma and is now growing in the middle of my trachea. Even though I have Priority Health Medicaid, Mayo does not take this insurance as they only accept it from North Dakota, Wisconsin and Iowa. Before I am able to be seen Mayo Clinic requires that I have a down payment before I can be seen. I will be seeing all three specialties at Mayo , to hopefully, find better management and a plan for my situation. Or a miracle, can not discount those! Mayo is very expensive; a billing representative suggested at minimum $20,000 with seeing one doctor for one hour is over $600. Can you say good gravy! I am 34 years old. My day to day life, which I am thankful for, is extremely difficult. I am not able to use the phone because it is difficult to hear me and I begin to cough. I am only able to talk 25% of the day. I cannot enjoy many of the things that I did before my diagnosis. I cannot drive, and everyday tasks can be difficult for me like helping my mum pump gas, enjoy bonfires, go for long nature walks, or sing. When I do go out I have to go slow. I'm pretty sure a turtle could beat me in a race. I use a walker and at times, depending on how far I have to go I need to use a wheelchair. I used to work at the Rockford Public Childcare, which was very hard for me to stop because I found so much joy with those little ones. But, despite the bad, I am blessed with a great community of friends, family, and church family. I appreciate your time reading and watching my video. If you are able to help me, I would like you to know how humbled I am—thankful for your generosity, and your help in saving my life.