Need more testing on Bone & Tissue Grafts beyond HIV & Hepatitis
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In April, I went walking a couple of miles with a friend and experienced some discomfort in one of my legs. By October, I had had one of my legs amputated from knee down. I'd like to share with you how this surreal happening has now come to be a part of my life story.
After walking 1/2 mile on a beatific day last spring, my left foot was starting to bother me. I shook it off at the time. After a few days, my foot still hurt. My boyfriend suggested we go to the New Balance store and get some new shoes. The store actually scans your foot based on heat signature and was able to analyze what shoes and inserts would be best. I stand on the scanner and see my left foot looks completely different from my right one. I was shocked to find out my left arch collapsed! That is not something I would expect to see at this point
in my life.
I did not think a collapsed arch in my left foot would cause me so much trouble. After steroids, ibuprofen, and various injections over the next few months, surgery was now scheduled. Once the surgeon was able to open up the problem area, we learned that there was much more damage than either of us had anticipated. In particular, an extra bone in my foot tore through the tibial posterior tendon. This is the tendon that wraps around your ankle and holds up your arch. I ended up having the bone shaved down, a screw put in my heel, pins put in the top of my foot and the Achilles' heel lengthened.
The first week went fine, reasonable pain but tolerable. Around the second week, I started getting awful nerve pain across the top of my foot and running a low grade fever. Since post-operative infections are not uncommon, I wasn't overly concerned when I started to feel feverish and in extreme pain. I began a course of antibiotics the next morning. Back at my
home, however, the infection was becoming worse. My foot felt as if it was on fire and a purple blotch appeared on the top of my foot, a sign of blood poisoning. I was immediately rushed to the nearest hospital where a battery of tests commenced along with multiple courses of IV antibiotics. An official diagnosis was determined 28 days later: mycobacterium fortuitum.
It's a mouthful, isn't it? Mycobacterium fortuitum. However, M. fortuitum is an infection that can be found in soil, sewage and tap water and doesn't mess around. It is a very hardy bacterium that is very hard to kill, grows rapidly, and is very rare. Severe infections require IV treatment combined with oral antibiotics for a prolonged period, up to several months. The guideline recommends for serious skin, bone, and soft tissue M fortuitum disease, a minimum of four months of therapy with two antibiotics at least is necessary to provide a high
likelihood of a cure. Surgery is generally indicated with extensive disease, abscess formation, or where drug therapy is difficult.
Unfortunately, my M. fortuitum infection was a very severe case.
I spent the next four months in and out of hospitals, receiving various IV antibiotics that caused side effects such as losing part of my hearing, vision issues, and constant stomach issues. My condition remained unstable. After eight surgeries and still losing the battle against the infection, my options were becoming fewer by the day.
Amputation had always been on the list of treatment options, but it was the most final of all of them. I never thought I would be faced with making the call to remove a part of my body. There was still hope I wouldn't have to...
Right down the road in Tyler, Texas stands a hospital which houses one of the two leading research departments in country studying mycobacterium. I quickly got an appointment and travelled to Tyler on September 30 to visit with a doctor leading the battle against this nasty infection. Ultimately I learned that the infection was, in fact, going to win. While my heart sank with utter disbelief, I knew I needed to quickly get my head around this unfortunate event. I am still young, have a bright, young spunky daughter to care for, and a lot of living still left to do. I thought about all of the many inspiring people who are living each day without the use of one or more of their limbs. It is in them and their strength that I knew I could do it, too. I scheduled the amputation surgery soon after my return from Tyler.
Two amputation surgeries later, I awoke from anesthesia on October 6th, my left leg below the knee was gone. I'll never forget that day. Waking up and looking down the hospital bed at one leg far shorter than the other. It was a sad moment, but I still knew that I was going to be okay.
Returning home and learning to do basic tasks such as showering, getting in and out of bed, even putting your pants on was all new to me. However, after much physical therapy, trying out various prosthetics and a lot of will power, I am now up and walking again and easing back into the life I once knew prior to my foot surgery. I even recently walked my first mile using my prosthetic.
Along with getting my body back in shape and the goal of participating in a triathlon, I am also committed to spending a portion of my time to try to push for some much needed legislative change. It was determined in December that the cause of my infection was the result of a bone graft carrying the infection. In the USA, only HIV and hepatitis testing are required on all bone and tissue grafts and nothing more. All of this happened to me because Bone and Tissue banks are not required to sterilize or rule out additional diseases. There are also safeguards in place in Texas law that do not allow you to sue against a supplier of bone and tissue banks. Something needs to change. Prostheses need replacing every three to five years. There are ones for water, ones for high impact activity and exercise and one for every day activity. Insurance will only pay for one, putting the affordability well out of the hands of most of our fellow Texas neighbors. That's not right.
While we all experience setbacks in life, the important thing is to refuse to let the problem stop us. It is through problem solving, and the problem itself, that we evolve and persevere. A $5 test could have prevented this from happening. I do not have diabetes. I am in good health. It will cost me roughly $500,000 for the cost of medical expenses for the rest of my life because of this amputation. How can the government let this happen?
Sign the petition. We need more testing on Bone and Tissue grafts used in surgery. We test blood and plasma more thoroughly than bone and tissue. Why should we accept The FDA standards of only required to test for HIV and hepatitis?
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