The Culprit is Gone

One month post-up, and I feel amazing. Recovery from this surgery has been so different when compared to my traumatizing previous surgery. With this one, there was no ICU and, most importantly, no trach. In recovery, as a nurse checked my vitals and dressing, she asked how I was feeling. I nonchalantly  responded with, " I am good, but the doctor didn't give me boobs." The nurse stopped what she was doing, pausing to ensure I was okay before laughing. I followed up by saying, "So if you were giving me a neurological test, I just passed it, right?" This time, she continued working on me and said, " Yes, yes, you did." 

By 8pm on 10/16/23, I was transported to my room. Unlike my previous surgery, I was cleared to consume clear liquids. After 20 hours of not eating, I wanted to put food in my stomach, but unfortunately, the cafeteria was closed. Thankfully, my friend Pachy, who had accompanied my parents in the waiting room during my surgery, offered to get us food. That evening, I had the most delicious wonton broth. After my friend left, I settled down ( as much as possible, given I was in a hospital bed) and attempted to sleep. I was surprised that I could sleep on and off throughout the night, only waking to readjust and when the nurses would check my vitals. 

Early the next morning, Tuesday, 10/17/2023, Dr. Tran walked into my room as I fell asleep and enthusiastically announced that I would be going home by the afternoon as long as I continued to progress. Challenge accepted! Since I had been tolerating water and broth, I was cleared for a regular diet; I ordered scrambled eggs, bacon, and tea for breakfast! Later that morning, after I had consumed my first real meal in 48 hours, my nurse came into my room for my morning exercise. I knew that if I did well on my loop around the nurses' station, I would get brownie points, and the chances of being released would increase, so I did two loops. I know I am an overachiever. 

Shortly after lunch, my nurse walked into my room with a huge smile and informed me that I would be released that day! Both my surgeons and Dr. Yasukawa ( with infectious disease) signed my discharge paperwork. I was only being held back by the hospital pharmacy for my medication; other than that, I was set to go. I made it home just in time for the evening news! 

For the last four weeks, whenever I have been asked how I am feeling, I have responded with, " I feel like me again." My family and friends who have seen me have shared my sentiment, adding that my entire face changed, including my facial expressions. Even though I still have facial paralysis and a skin graft that protrudes, for the first time in almost two years, I like the image that stares back at me in the mirror. 

Now that the mesh is gone and there are no open wounds, I can focus on other aspects of my life, such as renewing my Colombian passport to visit my family! I honestly do not know how I pulled myself together enough to pass my first semester of graduate school with two A's because the level of depression and anxiety that I was going through was severe.  I would like to think that I managed work, grad school, chronic infection/wounds, and my mental health because I have a whole lot more self-awareness than I did in my twenties and because I reached out to my people when I needed to talk. Whatever the reason that has gotten me through these last 20 months, I am grateful and thankful and pray for continued strength because I know this was a battle win, but there is much more to come. I am ready!

Removing the Culprit

 On October 16th, I walked into Moffitt for surgery number 24. The purpose of the surgery was to remove the titanium mesh. It's ironic how the mesh that was supposed to protect my brain and keep me safe and healthy caused havoc in my life. My body ultimately rejected the titanium mesh. Thankfully, despite the rejection, the skin flap remained healthy. 

I did not want another surgery. I was traumatized from the last surgery, and for the first time in my life, I was afraid of having surgery. However, after 40 sessions of hyperbaric treatment, MediHoney, collagen, and transplant of cellular tissue, the wounds not only remained open but had gotten bigger. The entire medical team at the wound care clinic did everything imaginable to help my body heal, but nothing worked. 

These past 18 months have been beyond difficult for me. My depression and anxiety were evident. I was not in a good place. My thoughts were dark. I was hopeless. I felt as if I was an intruder in my own body. I was angry that after everything I have been through, my body was failing me for the first time, and I did not understand why. I found it challenging to look in the mirror and see how surgery #23 drastically changed my face. Facial nerve paralysis, a bulging skin graft on the right side of my face, and a trach scar were the reasons I feared going back into the operating room. If those were the results of surgery #23, how would I look after another? My typical sunny disposition lessened as the wounds remained open and more prominent, and the infections remained. For well over a year, I was on two antibiotics; from July to October, I was taking two different antibiotics to kill and prevent the re-emergence of infections. I feared that I would have to take these antibiotics for the rest of my life and the adverse effects they would have on my liver and immune system. 

In mid-August, I spoke with Dr. Patel, head and neck surgeon, and agreed to surgery. His initial plan was to only remove the exposed mesh, leaving the majority intact. He spoke of using a wound vac and other grafts, such as cadaver skin. I left that appointment feeling defeated. When I got home that afternoon, I sat on the sofa and cried. I cried because I was afraid. I cried out of anger. I cried because I felt powerless. I cried because I missed being me. I cried because I was tired of having to be hypervigilant with the wounds. I was tired and wanted the mesh out of my body, but my doctor did not believe the entire mesh needed to be removed. 

In September, I spoke with Dr. Tran, the neurosurgeon. He proposed removing the entire mesh because that was the only way to prevent my skin from opening again. He explained that my body rejected the titanium and that having a persistent infection does not allow healing. I expressed that I agreed but that Dr.Patel only wanted to remove the exposed section because he did not want to lift the entire graft and risk the graft being compromised. Dr. Tran informed me that he would speak to Dr. Patel and recommended that the whole mesh be removed. I left that appointment feeling less defeated but filled with uncertainties. 

I sought a second opinion. I initially attempted to speak to Dr. Johnson, a surgeon at Shands Hospital in Gainsville, but that proved more difficult than I imagined. This surgeon's office is antiquated as they only accept referrals via fax. I spent the greater part of three days and over 50 attempts sending the required documents to two different fax numbers to Shands from my work fax to no avail. I finally sent the documents to Dr. Johnson's office from my PCP's office. I called Dr. Johnson's office the following Tuesday, and they confirmed they had received it; I was informed that I would receive a call within 72 hours telling me if my case would be taken. Two weeks passed before I heard from his office. 

While I waited to hear from Dr. Johnson, I was connected to Enzo. Enzo is a friend of my parents and a plastic surgeon that operates in Brasil and Colombia. He and I spoke about my previous surgery, the wounds, and my body rejecting the mesh. He explained that he did not have experience with a case such as mine but offered to speak to a fellow surgeon in Brasil that did. With my permission, he sent her a brief medical history with pictures. Within 48 hours, I talked to Dr. Cardim; she explained how she would handle a case like mine, stating that she would remove the entire foreign object and allow the body to heal before operating and, if needed, placing something else in the area. In my case, she explained, she would not operate again due to having a history of rejecting foreign objects. Dr. Cardim advised me not to pursue surgery with a new medical team; she explained that Dr. Patel and Dr. Tran know my case and body best and that a new surgeon could potentially be more damaging because they were not part of the medical team that did the skin flap and mesh. Deep down, I knew this, but hearing this from a surgeon eased my anxiety. 

Part 2 coming soon. 

My NF Life Update, First Half of 2023

My last post, Finding My Attractiveness...Again. It was written half-heartedly, an attempt to publish a post since I have not been as active on my blog this year. My friend Izzy mentioned my lack of blog posts during Cupid's Undie Run in February. I considered removing my latest post but opted not to because even if I am not a fan of what I have written, it helps at least one reader. 

Cupid's Team 

 I've been away because I'm uncomfortable in the body I am currently in. I have been in and out of depressive moods since I was released from the hospital last year. I do not identify with the reflection I see, which devastates me. I desperately yearn for my smile. I am exhausted mentally and physically. 

In December of last year, I was referred to a wound clinic for medical care for the two temporal wounds. Since January of this year, I have undergone 40 hyperbaric chamber treatments and various therapies, such as Medahoney and topical medications. Additionally, I am getting lymphedema massages through Moffitt to aid in the reduction of the lymphedema I developed after surgery last year. 

 Overall, there have been improvements to both the wounds and lymphedema, which is reliving. My medical team is doing everything possible to prevent me from undergoing another surgery, number 24 or 25... depending on who you ask! In order to tolerate the hyperbaric treatments, I had to have a tympanostomy tube, AKA ear tube, placed in my left ear. It was a five-minute procedure completed at my ENT's office, I do not consider this a surgery, but my mom disagrees. What do you think? 

So, this has been my 2023 thus far. It has been a challenging year, but nothing I cannot handle. I know better things are coming to me; I must first overcome this health hurdle.