The following story is in Amy’s first person voice as told to Jothy.
I was burned on June 9th, 2014 with 750℉ super heated water. I was burned on 25% of my body (left lower leg, left foot and ankle, right ankle, inner left thigh, upper left arm and my entire torso). My burns were deep second degree and third degree. My clothes fused to my body instantly.
I reached for the counter with my left arm to help break my fall and blacked out. The next thing I remember was that I was standing and felt an unbearable burning pain in my left leg. I took off immediately yelling “I have to take it off” over and over until I reached the break room and I pulled my shoe and sock off, and as I yanked my sock off all of my skin ripped off with it because my sock had fused to my body. I finally realized I was wet and that it was water that had caused this unbearable pain
The next thing I know I had two buckets of cold water dumped on me while standing in my underwear. They cut my pants off and layered the burned areas with wet white towels. The paramedics got there and they put me on the stretcher and I asked for my phone so someone could call my mom.
When we arrived at Brigham’s I was wheeled into what looked like an O.R. room. I heard numbers as they took the blanket off and started to examine my body 18, 20, nope 25%, they were also pumping me full of fluids and meds but the pain wouldn’t cease. They debrided the burned areas of my body as much as they could, bandaged me, put a catheter in, started oxygen, gave me more pain meds, covered me with a warm blanket, and transferred me to the ICU.
I never could have imagined the road through hell I was going to have to travel to get my life back.
Every day I had to have what is called a debridement, which is where they had to take off my bandages and remove the skin that is slowly peeling off by cutting the skin that had been burned. I would have two of these debridements a day.
My burn was atypical because it was a burn through water much like a sun burn so your skin continues to burn for awhile after the initial injury. It is surreal to know that you are technically continuing to burn waiting on the final verdict of the damage that was done and what would lie ahead.
I was burned on a Monday and they decided on Friday that they had to graft my left foot and ankle and possibly my left leg. The following Monday I had surgery on my left leg, foot and ankle. After that they grafted my left foot and ankle using skin from my left thigh. I was extremely lucky that I had a 100% adherence rate with my grafts.
When I was released to the out-patient burn unit I was suffering at first from Acute Stress Disorder which progressed into PTSD, anxiety and depression.
Six months after my graft surgery I was discharged from the out-patient burn unit, I had progressed from crutches to a cane, and was able to start serious out-patient physical therapy. I tried eight months of physical therapy and was discharged because I could not progress and was in constant pain. It is called Complex Regional Pain Syndrome or CRPS.
I was hospitalized for back spasms so bad I couldn’t walk and had to wear a back brace 24/7. I had to use a walker and wheelchair for over a year, and I had to wear a knee brace on my right knee due to over compensating right up until my amputation.
About a year into my injury I was already contemplating amputation. I knew it wouldn’t be easy but I knew it would be a heck of a lot better than being in chronic pain and housebound. I was on over 10 medications taking over 25 pills a day up until my amputation. That is not a quality life. I was barely surviving, holding on and hoping for a better day.
My orthopedic surgeon did not feel comfortable doing the amputation because of my CRPS. Over a period of more than a year he had me see a multitude of orthopedic, vascular and plastic surgeons, one was even an ex-military doctor who had seen burn injuries like mine and no one wanted to amputate He just couldn’t come to grips with amputating my leg and he couldn’t do any limb salvage surgeries because of the CRPS, so we were in quite a predicament.
My orthopedic surgeon referred me to one last doctor, a plastic surgeon named Dr. Matthew J. Carty to vet me for an amputation and my world changed.
There was still a huge battle ahead of me, this time with workers comp insurance.
It was September 2015 and Dr. Carty read all of my medical records since my June 2014 accident which, printed, stood as high as eight reams of copier paper.
Dr. Carty had me see my pain doctor one more time who continued to tell me that unfortunately I was one of those patients that he could not help. Then Dr. Carty met and spoke with all of my doctors that had been treating me one last time to discuss my case and if there was anything that they could possibly do.
I had to see a psychiatrist to make sure that I could handle an amputation mentally and emotionally. I obtained a letter from my psychiatrist stating that I was mentally stable enough to handle an amputation. In December Dr. Carty told me he still needed more time before he could say yes to amputating my lower left leg. On Christmas Eve 2015 he called to say “Amy I know how important this is to you so I wanted to call and let you know that I have decided to go ahead with the amputation”. I thanked him and told him that this is the best Christmas present ever!
Dr. Carty was so hesitant because of my CRPS and how severe it was that there was a chance I could never wear a prosthetic, would be wheelchair bound the rest of my life, and in the same pain I’m in now. I was already wheelchair and housebound, so it was worth the chance. Dr. Carty offered me the opportunity to be a part of a study that he and Hugh Herr from MIT were working on. If I went with the study the “new” amputation I would have to wait until June. I had to loose my leg for a chance at a better quality of life.
The “new” amputation required that my ankle muscles be removed from my ankle and moved to my residual limb and attached to my tibia bone in an intricate manner with my ligaments attached to my ankle muscles, a nerve remapping done on my nerves at the end of my residual limb as well as wrapping my muscle slightly differently than a standard amputation. These changes should allow the subject to control a robotic foot developed by MIT and be able to move it like a real ankle and foot as they walk. In theory it also gets rid of phantom limb pain, among other things.
My amputation was scheduled for June 2016. But my workers comp insurance was pushing back refusing to authorize it. Rescheduled to August and still, insurance refused to authorize the surgery. Now it was November and I just wanted to be out of pain and move forward. But it was canceled again due to a final denial from the insurance company. This now meant that my attorney and I would have to go to court to fight for my right to have an amputation.
I persisted because my life mattered, I mattered and the quality of my life after the burn injury mattered. It’s a very odd thing to have to fight for your right to the medical care you so rightly deserve, to have to prove that you are more than just a number or a dollar sign but a human being deserving of a quality life. A life that had been taken from me when I was burned through negligence. I wouldn’t have needed the medical and psychological treatments if I had not been burned through their negligence, yet I had to prove my life was worth it. I think it is important to note that I only received workers compensation benefits and nothing more.
The process for every claim filed took about 6-8 weeks in between each one for the upside and 3-6 months on the downside. We battled insurance from December 2016 until they were ordered by the judge to pay for the amputation in November 2017.
By now there were 6 people who had the “new” amputation which was now named the Ewing amputation. For the fourth time mentally preparing for the amputation of my lower left leg and I get hit with another blow from insurance who said they wouldn’t authorize or pay for the amputation unless I saw the court doctor one more time. I saw the court doctor one more time and once again he found for me. I thought I was home free, there was nothing else the insurance company could do to me.
The insurance company was actually thinking about going against the judges order for them to pay for the amputation and take a fine that they would have received and tried to continue to battle it in court. Thankfully through the work of my attorney and my doctors office speaking several times with the insurance company they finally agreed to authorize and pay for the amputation. It was February 2018 four years of battling insurance all the while with debilitating pain. In that time I had been hospitalized several times, for back issues due to my poor gait because of my injuries from the burn, to being hospitalized for massive cellulitis and lymphedema and almost having an emergency amputation.
I had my amputation at Brigham and Women’s Faulkner and became the 7th in the world to have the Ewing amputation. I was pain free, working hard and ready to take my life back! Those dreams would have to put on hold because I had fall three days after my stitches had been taken out. I forgot I didn’t have a leg and had a very serious impact wound. I went to the ER to have my residual limb cleaned and sutured back up. It just delayed me getting on my prosthetic for a little over 3 months.
I got up on my prosthetic in August 2018 and continued in my training since my amputation to get back into shape. I was doing great working out, obstacle course training, rock climbing, surfing without my leg, walking miles, horseback riding, hiking and ATV riding. It felt so AMAZING to be taking my life back!
I even weened off my oxycodone six months after my surgery that I had been on for over 4 years. My doctors were extremely impressed!
Everything was grand, but once again my luck turned against me and I had another serious fall where I broke my tibia clean through in my residual limb. Dr. Carty told me that if they had to do surgery he would have to deconstruct my limb and I would revert to a standard amputation because of all the metal hardware the orthopedic surgeons would have to put in and it wouldn’t be able to be reconstructed. I would rather be an above knee and have them move my constructs to my femur than go back to being imprisoned by my leg.
Fortunately they did not have to do surgery, but I had to go to Spaulding Rehab and was there until December. It was February 2019 before I was healed and could weight bare again.
I was granted a running foot by the Challenged Athletes Foundation and a running socket by the Who Says I Can’t Foundation. With them I would be able to start training for and running Marathons throughout the country and world as well as train to compete in Track & Field for the Paralympics!
I have competed in five 5K’s using only a walking prosthetic foot, so I can participate which is great but I can’t compete competitively without a running blade. I am so blessed and honored to have been granted my running foot and socket from CAF and Who Says I Can’t Foundations so I can full fill my dream of running competitively again!! I wouldn’t be able to do this without their generosity and show the world that since day one of my accident I have been saying Who Says I Can’t! And now I have finally arrived!!