Learning to Advocate for Yourself

Web Development Blog

By Katie Gazzola

On July 7th, 2017 I woke up to find out that a surgeon had removed my right leg above the knee after a boating accident. One of my first thoughts was “How much is this going to impact my life?” I’m a mother. I was working in the fast-paced emergency department at a local hospital while also in school full-time as a nursing student. Despite having years of medical experience, I had little knowledge of prosthetics and what I needed to get back to my life.

After spending a few weeks in two hospitals for medical treatment, my medical team sent me to a local inpatient rehabilitation hospital. At this point, I needed to do my research on the process of obtaining a prosthetic leg. The rehab hospital had a prosthetic office on site. That’s where my struggles began. At this time, I thought this place was my only option. My medical team told me, incorrectly, that “this is where insurance wants you to go,” and they gave a laundry list of all these different things I needed to do to obtain the microprocessor knee that I needed to continue my medical career. This included performing a K-level test to determine which type of prosthetic leg I would qualify for. (This is a physical test that helps the insurance company determine which types of prosthetic will meet the patient’s current and future mobility needs, or whether it’s “worth it” for an insurance company to purchase a certain prosthetic for a patient) At this point, given my injuries, being put through a test didn’t seem fair or accurate. I had seven broken ribs, a horizontally-cracked sternum and a badly sprained ankle. So now my option was to take the K-level test in this condition or wait until the rest of my body healed despite me being ready for a leg. My employer gave me six months of leave from work and I knew that I had to get this leg as soon as possible to be back in that short time frame. As difficult as this was for me, I worked through the pain and was able to score sufficiently to receive the microprocessor knee that I wanted. The prosthetist told me that I should be in a prosthetic 8-10 weeks after my amputation date.

I went back to the original prosthetic office where the team casted and fitted me for a lanyard socket. I knew that this type of socket was not going to work for my lifestyle but the prosthetists told me that this is what I “had to have.” I felt like I had to argue to get them to turn in the notes and codes for insurance to approve the equipment I needed. Once this happened, the doctor turned in the notes to the insurance company, but was missing information. Trying to get ahold of this doctor (who, of course, vacationed half of the year) turned out to be a huge challenge. Hunting down detailed notes was making the already-drawn-out process take much longer than expected. I was almost halfway through my medical leave and still without a prosthetic knee. The socket and foot were approved, but yet the insurance did not approve a knee! At this point, I am frustrated beyond belief. The lack of communication between the doctor and the prosthetic company cost me valuable time. I needed that leg and that’s when I knew that it was my job to get this done. It was time for me to stop relying on this company and this doctor. It was time to get this done myself.

I started to think about what I am going to do and what resources I have to make this happen. That’s when I learned that most insurance companies would provide you a case manager. I’m not sure why it took 10 weeks for me to find out about this, but I was glad I did. I was on the phone daily with her to get the information I needed to get this knee approved. She was able to help me by communicating with my doctor, prosthetic company and the insurance company. When she had a hard time communicating with them, I wheeled myself into that office to have a little talk with them in person. I will be honest by saying that I had some “choice” words with this doctor. Maybe an outraged patient was what he needed to motivate him to do his job. Three weeks later I was approved for my knee!

Now, I finally have my knee approved but what about that horrible-fitting socket? This is when I started to educate myself. I went to online support groups and researched different socket options. At this stage of my research, I realized that this prosthetist is not who makes my decisions: This is my leg, and I have a say in what equipment I use! After speaking with the insurance case manager, she let me know that despite what the hospital staff and prosthetist told me, I do not have to stay with the assigned prosthetic clinic. I knew which type of socket I needed to fit my needs.  Now I had to figure out where and how to get this socket.

I reached out to friends and family to see if they can help me out. My sister connected me to someone she met through her church and I was invited to dinner with another amputee and his family. I sat down with an amputee who had been successful with “finding the right fit” when it comes to a prosthetist. He not only gave me his information but personally texted him to tell him my situation.

Soon after, I met my new “leg man” and he was exactly what I needed! Not only was his location only 25 minutes from home, but also he is the expert when it comes to the type of socket I needed. Meeting him changed my outcome entirely. He made sure that I had the equipment I needed to reach my goals. He help me get what I wanted and educated me on the many different options I had including telling me that my primary doctor can write prescriptions for my prosthetic needs. I dumped the other doctor.

It has now been just over 1-½ years after my accident, and my success has been outstanding. Because I didn’t accept what was handed to me, I was able to go back to work and nursing school just six months after my accident. I learned throughout this process that it is essential to educate yourself and never stop pushing for what you deserve. Learning to advocate for myself has been one of the most important lessons of my amputee journey. Never sell yourself short by letting others determine your outcome. Incredible change happens in life when you decide to take control.