Mica's reconstructive surgery
Donation protected
Hi! I'm Mica, and this is my story.
It all started in November of 2005. I had been sick for weeks and my mom had taken me to the doctor multiple times and they kept saying it was a sinus infection. I had sensitivity to light, was extremely lethargic, had migraine headaches, bloody noses and was extremely congested.
On November 5, my dad was killed in a car accident. While devastated over the loss of my dad, I continued to get sicker.
My mom fought with the pediatrician to get me a referral to an ENT since the antibiotics didn’t help at all. He took one look and said this was not just a sinus infection. He began running tests. They spent months trying to figure out what was wrong and I had a biopsy on my sinuses which lead to my diagnosis in April of 2006.
I had Wegener’s Granulomatosis also known as Granulomatosis with Polyangitis (GPA). “Wegener’s is systemic, meaning that the effect of inflammation can be present in the entire body. It affects the upper (sinuses and nose), and lower (lungs), respiratory system and frequently involves the kidneys, lungs, eyes, ears, throat, skin and other body organs.” You can read more about it here: http://www.vasculitisfoundation.org/education/forms/granulomatosis-with-polyangiitis-gpa-wegeners/?gclid=COyOjcfNq88CFQwKaQod5ioLMw
While they spent time trying to figure out exactly what I had, I lost the hearing in my left ear. I had severe pain in my sinuses and my face got extremely swollen. It stayed that way for a few days and when the swelling went down, the cartilage in my nose had been deteriorated/dissolved by the disease and I was left with just the tip of my nose. This was incredibly painful.
It also greatly affected my trachea and my lungs. The attack on my lungs was severe. I’m now left with less than 50% lung capacity and am limited in what I can do. Three of the five lobes are nonfunctioning and according to my thoracic surgeon, my trachea is about the size of a cocktail straw. This makes breathing and exerting myself incredibly difficult.
I spent the better part of three years fighting for my life. There were many hospital stays, two of which they told my mom I might not make it and to prepare for the worst. I have been in three comas, one of which I was not supposed to wake up from. The worst coma I was in, which I call “the big one” took months to recover from. I woke up with the breathing machine still down my throat and remained that way for days. When it was finally taken out, I had lost the ability to speak or move and was left with moderate memory loss. I spent months in intensive rehabilitation learning how to talk, form sentences, and move. I still continued to fight even after feeling like there was no fight left in me. After numerous medications -chemo, Prednisone, and Rituxan – I beat the odds and my disease is now in remission.
After finally starting to feel human again, my mom was unfortunately diagnosed with breast cancer. She spent a year and half fighting it and was considered clear. Three years later, it came back and with a vengeance. She was diagnosed in July 2013. The cancer had metastasized and she lost her battle on April 8, 2014.
I have had to continue my life without my mom and dad which has been hard and scary. My younger brother was only 11 when our dad died and 20 when our mom died and I feel a sense of responsibility for him. We are all we have. I have been put in a unique position of becoming a parent for someone who lost their childhood due to my illness and my mother’s cancer.
I still see my rheumatologist every three months for follow up and have routine bronchoscopies every four months to monitor my trachea and lungs. I will need surgery to repair my trachea at some point in the future.
The thing that bothers me the most is looking in the mirror and seeing the constant reminder of the toll this disease has taken. I desperately want to repair my nose and look like I used to; I would like to see the image of myself I have looking back at me in the mirror. I get bullied still to this day about my nose. People feel free to make comments on a daily basis. This isn’t something I just deal with occasionally, it is constant and very taxing on my mental health. They point, they whisper, they ask what the hell happened to my face, they offer referrals to their plastic surgeons, they ask if I was in a car accident, the list goes on. I have been called a freak many times and been called ugly even more. Although I have come to terms with what happened to my nose, strangers are quick to remind me that I do look different, and not always in a nice way.
After 11 years of fighting to be able to have this surgery, I’ve finally become stable enough and have found a doctor who can help me. This surgery has only been performed about 50 times on patients with Wegener’s in the entire world and the doctor who wants to help me has successfully done 3. The only catch is he is retiring in December which doesn’t leave me a lot of time to save for the surgery. His fee alone is normally around $25K, but he has offered me a discount of $10k, so my cost is $15K. That doesn’t cover the hospital cost for the nearly 6-hour surgery and recovery time. As life would have it, I don’t have $15K and have been encouraged by friends to set up the GoFundMe account so I can get this surgery done before he retires. This surgery would be life changing for me. It will not only help me with my confidence, but it will allow me the opportunity to close the chapter on my past.
My goal is to make the $15k doctors fee so I can be able to afford the hospital fees. it is not easy for me to ask for help, especially when it involves asking for money, so any help is greatly appreciated. You will be helping me change my life and for that, I thank you from the bottom of my heart.
It all started in November of 2005. I had been sick for weeks and my mom had taken me to the doctor multiple times and they kept saying it was a sinus infection. I had sensitivity to light, was extremely lethargic, had migraine headaches, bloody noses and was extremely congested.
On November 5, my dad was killed in a car accident. While devastated over the loss of my dad, I continued to get sicker.
My mom fought with the pediatrician to get me a referral to an ENT since the antibiotics didn’t help at all. He took one look and said this was not just a sinus infection. He began running tests. They spent months trying to figure out what was wrong and I had a biopsy on my sinuses which lead to my diagnosis in April of 2006.
I had Wegener’s Granulomatosis also known as Granulomatosis with Polyangitis (GPA). “Wegener’s is systemic, meaning that the effect of inflammation can be present in the entire body. It affects the upper (sinuses and nose), and lower (lungs), respiratory system and frequently involves the kidneys, lungs, eyes, ears, throat, skin and other body organs.” You can read more about it here: http://www.vasculitisfoundation.org/education/forms/granulomatosis-with-polyangiitis-gpa-wegeners/?gclid=COyOjcfNq88CFQwKaQod5ioLMw
While they spent time trying to figure out exactly what I had, I lost the hearing in my left ear. I had severe pain in my sinuses and my face got extremely swollen. It stayed that way for a few days and when the swelling went down, the cartilage in my nose had been deteriorated/dissolved by the disease and I was left with just the tip of my nose. This was incredibly painful.
It also greatly affected my trachea and my lungs. The attack on my lungs was severe. I’m now left with less than 50% lung capacity and am limited in what I can do. Three of the five lobes are nonfunctioning and according to my thoracic surgeon, my trachea is about the size of a cocktail straw. This makes breathing and exerting myself incredibly difficult.
I spent the better part of three years fighting for my life. There were many hospital stays, two of which they told my mom I might not make it and to prepare for the worst. I have been in three comas, one of which I was not supposed to wake up from. The worst coma I was in, which I call “the big one” took months to recover from. I woke up with the breathing machine still down my throat and remained that way for days. When it was finally taken out, I had lost the ability to speak or move and was left with moderate memory loss. I spent months in intensive rehabilitation learning how to talk, form sentences, and move. I still continued to fight even after feeling like there was no fight left in me. After numerous medications -chemo, Prednisone, and Rituxan – I beat the odds and my disease is now in remission.
After finally starting to feel human again, my mom was unfortunately diagnosed with breast cancer. She spent a year and half fighting it and was considered clear. Three years later, it came back and with a vengeance. She was diagnosed in July 2013. The cancer had metastasized and she lost her battle on April 8, 2014.
I have had to continue my life without my mom and dad which has been hard and scary. My younger brother was only 11 when our dad died and 20 when our mom died and I feel a sense of responsibility for him. We are all we have. I have been put in a unique position of becoming a parent for someone who lost their childhood due to my illness and my mother’s cancer.
I still see my rheumatologist every three months for follow up and have routine bronchoscopies every four months to monitor my trachea and lungs. I will need surgery to repair my trachea at some point in the future.
The thing that bothers me the most is looking in the mirror and seeing the constant reminder of the toll this disease has taken. I desperately want to repair my nose and look like I used to; I would like to see the image of myself I have looking back at me in the mirror. I get bullied still to this day about my nose. People feel free to make comments on a daily basis. This isn’t something I just deal with occasionally, it is constant and very taxing on my mental health. They point, they whisper, they ask what the hell happened to my face, they offer referrals to their plastic surgeons, they ask if I was in a car accident, the list goes on. I have been called a freak many times and been called ugly even more. Although I have come to terms with what happened to my nose, strangers are quick to remind me that I do look different, and not always in a nice way.
After 11 years of fighting to be able to have this surgery, I’ve finally become stable enough and have found a doctor who can help me. This surgery has only been performed about 50 times on patients with Wegener’s in the entire world and the doctor who wants to help me has successfully done 3. The only catch is he is retiring in December which doesn’t leave me a lot of time to save for the surgery. His fee alone is normally around $25K, but he has offered me a discount of $10k, so my cost is $15K. That doesn’t cover the hospital cost for the nearly 6-hour surgery and recovery time. As life would have it, I don’t have $15K and have been encouraged by friends to set up the GoFundMe account so I can get this surgery done before he retires. This surgery would be life changing for me. It will not only help me with my confidence, but it will allow me the opportunity to close the chapter on my past.
My goal is to make the $15k doctors fee so I can be able to afford the hospital fees. it is not easy for me to ask for help, especially when it involves asking for money, so any help is greatly appreciated. You will be helping me change my life and for that, I thank you from the bottom of my heart.
Organizer
Mica Myerscough
Organizer
Irvine, CA