Amputation & Beyond - Help to Reclaim My Footing

I am typically not the "kind of person" who freely asks for help, even when I probably need it. It has taken a lot of prayers to get to this point. I have a peace/love kind of philsophy and I think we're all deserving of a better life.

 

After months of contemplation and a heavy heart, I must inform you that after a 16-month-long battle with chronic infection (staph epidermidis, in the form of biofilm), I’m currently scheduled to have an above-the-knee (AKA) amputation of my left leg. To note: above-the-knee amputations are much more challenging than the below-the-knee (BKA) - functionally.

 

I realize this news may come as a shock to many, and for some, you are well aware not only of the difficulties I have endured over the course of the past sixteen months but moreover, are aware that I have been dealing with chronic health issues in general since June of 2015.

 

For those of you that aren’t aware (or don't know my full story), here is a bit of background:

• In 2005, at the age of 19, I was diagnosed with a rare form of cancer known as osteogenic sarcoma of my proximal tibia. After undergoing neo-adjuvant chemo, wide-bloc resection along with the placement of an endoprosthesis, followed by adjuvant-chemo, I entered remission later that year.

• During my cancer treatment, after surgery, I was only given a 15% chance of surviving my form of aggressive osteosarcoma, which at the time of diagnosis was staged III A/B. Nevertheless, I told myself that if I somehow survived this ordeal, I would dedicate my life to helping others.

• In 2007, amid losing my brother and dad to other diseases, I felt the only path forward was focusing on my future and schooling. So with that, I began studying pre-medicine first at Front Range Community College and, in 2010, was accepted as a transfer student into CU Boulder. Shortly after graduating, I started volunteering at Dr. Jerry Stitzel’s Molecular Neurogenetics Laboratory to obtain research experience.

• In June of 2015, I began dealing with chronic health issues in the form of mostly bone/muscle/joint pain and debilitating level of fatigue. While this has continued chiefly through today, 2019 was a better year symptom-wise (better managed and the physicality of working in the lab probably helped my health a bit).

• In early 2016, realizing the need for a change with my job and going against my gut instinct, which told me I should keep my focus on a more sedentary job, given my failing health, I grew up the courage and asked for a job. I was hired in June of 2016 for a one-year appointment. During the nine-month period that followed, I had difficulty supplementing two part-time jobs to satisfy the needs of a full-time work schedule. At the lab, I was kept on minimal part-time (4 hours per week); my hours at my tech job were reduced from part-time to less than a dozen (although I did receive a raise upon my return). Regardless, I somehow made it through between God taking care of me during these uncertain times and my resourcefulness. Fortunately, in April of 2018, I was finally notified that a 5-year grant had been funded at the lab. Moreover, I was finally getting a full-time appointment, and I was also going to be the newly appointed lab manager for this project. This was my first opportunity at a job that offered a living wage and covered me as a "whole person" with benefits. While, at first, I was scared at the prospect of keeping up with this responsibility amid/contrasting chronic health issues, it was an opportunity to help create a great culture in the workplace while adding to the project with my programming and tech prowess and ingenuity. In retrospect, it was an empowering and reaffirming opportunity for growth. So often, these are the times of our life we look back on with fond memories. To this day, I still love the independent, quota-based and "trusted to get the work done" nature of my job; come October (possibly sooner), I will genuinely miss it when it's time to move on.

• In February of 2021, I began to experience a new/sudden onset of stiffness and pain in my left leg. Unfortunately, my endoprosthesis was infected. I took only 3-4 weeks off of work and battled through worsening limping and pain for the remainder of this year while I finished up a six-month course of antibiotics. Finally, in November of 2021, shortly after my Mom’s return from California and subsequently after sharing a primary co-authorship of this publication: (https://www.frontiersin.org/articles/10.3389/fpsyt.2021.773400/full) , I decided now it was the right time to treat this issue head-on. The next seven months that followed were fraught with surgery after surgery (seven in total for this infection, fourteen in total) and seemingly complication after complication. While this whole debacle rendered me physically disabled, between having my knee fused and the constant onslaught of surgeries. At one point, I had to switch infectious disease providers because my concerns about an untreated infection while on IV antibiotics were largely ignored.

• From April 1st, onward, I had very little remote work left available to me and used the remainder of my PTO to get me to my final surgery, to reimplant my endoprosthesis on April 28th, 2022. Unfortunately, in mid-June, my infection was back – just as I was returning to work.

• My Mom asked me after the doctors warned me that this was it and my leg needed to be amputated if there was some other treatment available - that we had not yet, considered. Given my background in research and interest in bacteriophages as an undergraduate, I mentioned it might be an option – but it’s also a shot in the dark given its experimental nature and whether (or not) they can find a phage on hand for which my isolate is susceptible. Moreover, my providers are currently against it. Nevertheless, we are attempting to pursue it with remote possibility. I also want to take the time to obtain a second opinion, meet with prosthetists and ultimately decide if I want someone else handling the amputation (or not). Amputation is better suited to sooner rather than later, but I don't want to rush into it blindly and potentially with regret afterthefact.

 

Invariably, I am trying to keep up with doctors' appointments and keep up with my part-time lab commitment - so I can continue to receive my health benefit - all the while to prepare myself for the storm that lies ahead - either way. It's truly been hard dealing with the pain, this breakthrough infection (while on my previous antibiotic) which started in mid-June. The costs of my antibiotic alone this month is $2,000 - given the new plan year and until I satisfy my deductible and out-of-pocket maximum. Regardless, I am grateful to have the health insurance and hope I can keep up with my job into then next phases of treatment. I'll probably have to look into purchasing a wheel chair, if I have any hopes of remaining active.

 

While bacteriophage therapy has the remote possibility of saving my leg, I’m not sure how much of the treatment will be covered by insurance since it is experimental. Additionally, as I begin to meet with the prosthetists and plan for a life after amputation, the external prostheses are extremely expensive and obtain a functionally decent outcome, which means likely needing to invest in a more premium prosthesis that my insurance likely will not cover to permit me to continue working past all of this. While a goal of $100,000 might seem high, given all that's about to happen, it's probably fairly conservative underestimate given the full breadth of the recovery window.

 

Regardless, if you decide/or are able to donate to my GoFundMe, just know that your thoughts and prayers mean the world to me and my Mom during this difficult time. While I do want to hold off on amputation temporarily to offer me some time to digest what is happening and explore bacteriophage therapy is a viable treatment for my chronic periprosthetic joint infection (PJI), ultimately, I seek to have this cured and not to remain on life-long chronic antibiotic suppression therapy (SAT) for the rest of my life - eitherway. I already have kidney disease from undergoing high-dose chemo, which ultimately saved my life, but I have to be careful with my kidney disease and the chronic anemia. I hope and pray that if it does come down to amputation that - with time - things will improve, that is: my current limb pain will improve, be able to work past phantom limb sensations and achieve a desired outcome – even if that means going forward without my leg.

 

Whatever the case, I’ll be sure to update all of you on this journey, either through the GoFundMe page, Facebook and/or my recovery blog (or all three). Since I have the expants of my fusion and original tibial endoprosthesis on hand, if there is interest from people, I will consider putting out a video sharing not only what these parts look like, but also sharing about the biofilms (plaques) that can ultimately form on them and cause the sort of chronic issues I'm experiencing and where research one day will be headed to address such problems. Unfortunately, to-date, we're not there yet. Bacteriophage therapy is simply one tool in a long list of many that could eventually be used to eradicate these sort of infections and make this kind of suffering a thing of the past.

 

Thanks, in-advance for taking the time to read this, your thoughts and prayers, and in the event you are able to contribute to my cause. It is all very disheartening and confusing at the current moment with seemingly no end in sight. But I’ll try to keep my positive thoughts and attitude as best, as I’m able and realize through this darkness, there will be light and life on the other side of this. I will do my best to put out some videos in the future to update everyone with where I’m at in this process. I will also try to include more pictures and educational research material into the matter, for those who are dealing with similar situations and happen to stumble across this page during their research on Google.

 

Special thanks to my boss, Dr. Stitzel (for keeping my job viable - as long as he has), my Mom (for walking this difficult journey alongside me [yet again!]), my friends (especially Keith/Scott/others), my oncologist and my pain specialist for helping to keep things more manageable. Along with my lab peeps/friends (and their peeps) and any of those out there willing to listen and offer me encouragement and prayers during this difficult time :)

My previous posts from my recovery blog are located here: https://aetheryl.blogspot.com/