This is the update I have been putting off for a long time and sorry to say also been putting off an update on GoFundMe, however, I am planning on posting an update soon and surely before the amputation date on August 18th 2022.
For those of you whom don't know, I'm undergoing a guillotine amputation of my left leg, above the knee on August 18th 2022. I'll be at UCHealth in Denver. The change of providers is a welcome change considering all of the surgeries and all of the mistakes that has ultimately lead to the gradual death of my left leg, due to persistent/chronic periprosthetic joint infection (PJI) of my endoprosthesis. While I have had the endoprosthesis for the past 17 years and it has served me well (albeit, never pain free/comfortable), it did offer me a return to normalcy coming out of my year of cancer treatment in 2005.
Now, I'm forced to face life without a limb and just how different that will be. I know logically and emotionally, this will be such a hard thing for me to accept. Wheelchair (and more crutch) life, at least through the end of this year. Three more surgeries. August 18th is the amputation, where they will keep my leg open for 4 days before returning to the operating room on August 22nd, placing an antibiotic nail, undergoing TMR (where they re-route my nerves) and finally 6-weeks later, a final outpatient surgery to remove the nail. In addition to all of this, they have had me discontinue my antibiotic to allow this infection to flare, in the hopes they will accurately identify the margins, to which they must cut, along with a six week course of IV antibiotics (the fourth 6 week course, since all of this had started). This amputation makes it surgery number 8, since all of this started in February of 2021 and with the two additional surgeries, I will have undergone a total of 10 surgeries to cure this (hopefully!).
I'm really sick and tired of being sick and tired. The pain in my leg is increasing since discontinuing the antibiotics starting on August 4th. My inguinal lymph nodes on my left leg are popping. Even an inguinal lymph node on the right leg is extremely sore. Then undergoing this amputation and leaving a wound open for 4 days is no cake walk. I truly hope they have some inkling, or understanding of what is necessary to keep on top of my pain. I will stay in the hospital for the second surgery, another deep bone biopsy, TMR and to close me up. I would expect I will be in the hospital for a rather long stretch of time. It is hard to imagine given what I'm about to go through, nothing short of 10-14 days and possibly longer, pain, complication and healing permitting.
Of course, during my stay, this is one time I intend to keep all of you updated. While my previous surgeries were not minor operations and major surgeries in their own right, this amputation is a major surgery with major risks associated with it. Furthermore, I can tell you, people in my position with a chronic PJI of this duration confers with a high five-year morbidity/mortality rate. I won't share the details here because I don't want to come across grim, but let's just say it is partially up to chance and partially up to my willingness to keep fighting and believe I can make it through this. I just know that the first three months, psychologically speaking are going to be some of the hardest. My goal, aside from putting out regular updates on the blog, and writing articles for the blog, is to keep the expectations low for myself. I'll probably spend a considerable amount of time playing games and if I'm permitted, to start PT. Furthermore, while some of my ambulation will by way of crutches, I plan on making things easier on myself and succumbing to the acceptance of being wheelchair bound, at least temporarily.
Finally, I wanted to share my biggest fear: a post-amputation infection. Given this is a legitimate concern and worry, not only of mine, but also of my Mom, I have already requested that they send replicate cultures from the surgery, during the infection flare-up (when the infection is prime), to the IPATH program at the University of California San Diego. We have been in touch with their team and while it may be unnecessary, in the event that I do experience a post-surgical infection that cannot be eradicated with antibiotic therapy alone, this will get a jump on the six weeks it takes to phage hunt (track down a phage, in its lytic cycle that is susceptible to the isolates taken from my leg. That way, along with the help antibiotics, we can finally rid my leg of this thing. Again, it may not be necessary since we are resorting to amputation. And for anyone wondering why we're not willing to try phage therapy to cure the infection of my implant, it's unfortunately a case of too little, too late. My leg is extremely atrophied. I haven't had a knee, or used my knee muscles (since my leg was fused and subsequently re-infected) ever since last November. That is seven months of de-conditioning. Moreover, we did end up meeting with another limb specialist at UCHealth that works on endoprostheses and he told us the same. He didn't recommend it, he believed further surgery and treatment wouldn't cure me of this and moreover the more revision surgeries for endoprotheses, the less available/remaining bone stock there is left to work with. Furthermore, since the metal in my leg is behind why we cannot rid me of this staph epidermidis (possibly poly-microbial) infection, the only true way to cure it is to remove the metal and unfortunately that currently means amputation. Even if we had brought in help, or bacteriophage therapy sooner into the course of treatment, there is no guarantee that it would have cured me of this infection. It turns out, what happened in December/January, where I was trying to explain to my old providers, at that point that I had another infection, I was denied and told it wasn't possible. It turns out, when you have breakthrough (and untreated fully for 7-8 weeks poly-microbial infection, the chances of eliminating the infection drop considerably off and it's practically impossible to cure this infection with antibiotics and surgery alone. That's even with the "gold-standard" of the two-stage revision: removing the implant, fusing the leg with an antibiotic spacer, and then reimplanting an endoprosthesis anew.
Anyways, I just wanted to thank everyone and apologize to those that have donated whom I haven't had the chance to to thank yet, and also for those of you that keep revisiting my GoFundMe, only to find no new updates have been posted. I am surely going to put out at least one more vLog / combined thank you video before the surgery. I hope you can imagine the physical and emotional turmoil I have been dealing with. I truly appreciate the support and thank you again for all of the peace and love.
Since I am also posting this as an update on GoFundMe (which is located, here: https://www.gofundme.com/manage/amputation-beyond-help-to-reclaim-my-footing/update/all), Conversely, I'll go ahead and link up my blog (for the GoFundMe page update). It's located at: https://dev.aetheryl.net If you want to reach out/get in touch, you are welcome to reach out to me directly, or sign up for an account on the forums and post a new thread to say "hello!" or share your words for support or inspiration with me.
Much love and peace to all of you~! Until next time, be well!
