Help John Garrett Fight H.S. Stage 3

John is my brother-in-law, Rusty's brother. To know him is to love him, he is always making you smile or laugh. Even with this extremely painful disease he is always happy and tries to be out going as much as he can. Between the hospital stays, medical cost, not being able to work, medical trials and fighting insurance, he stays positive. There is no cure for this disease, but he still fights. Please read his story below and help if you can. Hidradenitis Suppurativa Hurley Stage III In 2002, shortly after moving to Louisiana with my 2 young daughters, I went into the doctor's office with what I thought was a boil on my tailbone. After a surgical procedure to lance and drain it, the doctor's diagnosed it as a Pilonidal Cyst and sent me on my way. Within about 3 months, it was back, larger and deeper than previously. The doctor's, still feeling it was just a pilonidal cyst, went back a 2nd time to lance and drain it. Thinking it was completely done, doctor's released me with recommendation to come back if any problems arouse.  During the next 2 months, I started noticing I had lumps and boil like lesions under my armpits, and had a 3rd & even more severe cyst on my tailbone - went back at that time to see a dermatologist, who then diagnosed me with Severe Adult-Onset Body Acne.  At that point the Dermatologist felt best course of action was to put me on an oral medicine called Acutane and gave steroid injections every 3 weeks to attempt to clear up what at that point was being called Adult Body Acne. For about 6 months, we followed this course of action, with a steady downward spiral getting worse and worse. After the ones on armpits got drastically worse, the dermatologist performed another surgical procedure to lance and drain those "cysts" under my armpits.  When after above treatments and remedies failed, the dermatologist recommend/referred me to see a different Dermatological specialist in New Orleans, Louisiana where they gave me a new diagnosis of Hidradentis Suppurativa Stage 3, and they started a regimen of bleach baths, hyperbaric chamber treatment and included Remicade transfusions, which at that time were still in early FDA testing and were considered very dangerous and very expensive since not covered by insurance because was still in early testing phases for my diagnosis. As far as I know, even now, Remicade has not received FDA approval for the treatment of H.S. Less than 1 year after my first "Pilonidal Cyst", I couldn't move around, I was in severe pain nonstop, and unable to work regularly or enjoy daily activities that were once a part of my family and I's daily life. Knowing that the diagnosis had changed, from Severe Adult Body Acne to H.S., which is a skin condition, but is Auto-Immune related and is at this point, incurable didn't seem to help with the treatment options. There weren't, and still aren't, many adults who reach Hurley Stage III (the most severe), especially MEN, let alone, reach it so quickly.  Life went on, and I learned to deal with the pain and discomfort that it caused, including times when I couldn't put on a shirt, or move my arms around, and times that I couldn't put on underwear or pants, let alone get out of bed and get dressed. Despite the pain, I continued to do my best every day, to wake up, get dressed and go to work and enjoy life with my family. All the while, having the only treatment options available were in the form of narcotic pain meds that the doctors prescribed to help me keep the pain at bay, never really receiving any options to try to minimize the outbreaks or flare-ups caused by H.S.  Fast forward to July 2014 - my dermatologist at this point had heard about a new trial with a drug called Humira, an injection that was being tested for treatment to help H.S. patients who were at Hurley Stage 2 & 3 with more severe outbreaks. It wasn't a cure, but it was something I had waited 12 years to find - a chance to minimize the outbreaks and get a chance of a more normal quality of life - including finally getting off the pain meds that I had been forced to depend on for so long. I WAS THRILLED - August 2014, I started the first round of injections - and man - almost immediately started seeing less and less of the outbreaks - and when they did happen, it was more like acne - I didn't have the heavy flare-ups. I could start enjoying my day to day life - including things I enjoyed prior to the initial "cysts". I was able to start LIVING again - spending time with friends.   Due to a change in my insurance, and despite being part of the initial trials for Humira - with the trials being successful -- HUMIRA is OFFICIALLY APPROVED for the TREATMENT of H.S. -- in July 2015, I could no longer receive the injections on the previous FDA trial status at a very low cost - they were going to cost almost $8,000 per MONTH for me to pay out of pocket - so despite the fact that we knew I was seeing such an amazing IMPROVEMENT - I had to stop the treatment. (after exhausting all avenues for help, including appealing to the pharmaceutical company AbbeVie - was denied)  In January 2016, I started to have more and more severe outbreaks or flare-ups. I had to visit the emergency room on a few occasions - missing days and sometimes even a full week of work because of the severity of the flare-ups.  I continued to work a full-time position - traveling 45 minutes to work, working from 7:30 am until 6:00 pm, then traveling back home another 45 minutes 5 or 6 days a week. In November 2016, I decided it would be best for my health to quit working, at least until I could get healthier and not be in and out of doctors offices and hospitals, in an attempt to find treatment options to lessen my flare-ups of symptoms.  At this point, I was no longer working and in a fight with Wells Fargo to keep my home I had been in for 10 years. Despite my best efforts and continued calls and spending hours on the phone being shuffled from one agent to another after being promised a re-finance option to lower our payment substantially enough so that we could afford it - Wells Fargo proceeded with the process to foreclose on my home. I had no choice but to file for bankruptcy. With the bankruptcy filed, it stopped, temporarily, the foreclosure process on my home. Due to our financial situation, we could not afford an attorney and could not get legal aid help in an effort to fight what ended up being a losing battle to keep our home. Lost in the endless maze of paperwork, as well as my failing health, the bankruptcy was dismissed and the foreclosure process continued.  We continued to attempt to make contact with Wells Fargo, being promised call backs, but being placed on endless holds or constant transfers to people who weren't available or into yet another automated phone system - all in an attempt to somehow renegotiate our mortgage to allow us to at least stay in the home while making some type of good-faith effort to become current on our defaulted mortgage payments. After 10 years of paying almost $2,000 per month, on a $150,000 home mortgage, we were going to lose our home - I couldn't figure out how this was happening, and was at a loss on how to prevent it.  By February 2017 - I was hospitalized with severe secondary infections - directly due to the flare-ups. I spent almost a full 3 weeks in the hospital on very strong antibiotics - even though the doctor's weren't sure if it would actually help or not. We felt some improvement, enough for the staff to send me home.  Within a few weeks, my wife realized all was not right - I wasn't able to get out of bed, even for short periods of time. She was having trouble waking me up, even just to sit up and eat. She would bring me trays of food and come back to them still uneaten. She would wake me up and kind of force me to eat. All the while, still taking the antibiotics the doctors had sent me home from hospital with.  She thought maybe the bed-rest was exactly what my body needed, and I'm sure in a lot of ways it was,  but after almost 2 months of this, she got me out bed and we made the painful drive back to the hospital. (end of April 2017) Within about 30 minutes, the doctors had started an I.V. with fluids after drawing blood that showed my White Blood Cell count at an all time high. They admitted me and that's when things really changed - I was septic and very out of it - I couldn't move around, I couldn't hold a lucid conversation. The following morning I was wheeled into surgery, where a doctor performed several procedures in an attempt to remove the diseased and dead tissue, hoping to clear out the central "hubs" that seemed to be at the base of flare-ups. These "Hubs" were all in my lower groin area, including my rear right thigh  (directly under my butt cheek) and right testicle. No real improvement immediately after the first surgery, 2 days later, they wheeled me in for a 2nd surgery - at that time taking out a large chunk of tissue on my left hip area, right at the waistline of my pants.  When I came to after the 2nd surgery, I was fully awake and finally after almost 3 months of barely eating anything, I had an appetite of a man , well, a man who hadn't been eating for 3 months.  Due to the severity of my wound care needs - and the lack of ability to find proper home health care - I stayed in the hospital, confined to a bed for almost 2 months. Finally, despite not having insurance coverage available for my specific needs - the hospital provided me with a home health nurse to come by 2 times a week to check my wounds. My wife learned during the hospital stay how to take care of the multiple daily dressing changes and wound care that I needed, and although she hated to see me in such pain - she knew I preferred being able to be home instead of at a hospital or nursing home to receive care. At this point, my wife and I had made the decision to return north with our family - to be closer to my mother, who's health wasn't in the best condition. In August 2017, after getting to Illinois with my family towards the end of July, I was hospitalized again and required a 3rd surgery. They had to go back and remove more diseased and dead tissue in the same areas as the 2 surgeries performed in May. After almost 3 weeks in hospital, and a port placement in my neck to provide a different and stronger antibiotic, I was released home. One of the specialist I am seeing here in Kankakee, Illinois, Dr. Phillips, helped to get me back on Humira injections and I was super hopeful to start seeing some improvement - I started the Humira again in November 2017. My wife and I both decided to go back to work at this point, feeling that my prior success would be a repeat. We were both thrilled to be going back to a "normal" life with our family! January 6, 2018 - after seeing no improvement, but actually a worsening of flare-ups, even with the Humira injections weekly since the beginning of November, I find myself back in the hospital with a flare-up in the same location as my original "Pilonidal Cyst" that started it all in 2002. Dr's find in my blood work that my White Blood Cell count is outrageously high again - and decided to perform surgery on my tailbone area to remove as much of the diseased and dead tissue they can. I am continuing my Humira treatment, but only because there aren't many other options, even just to help minimize my symptoms and outbreaks.  My wife, decided that it would be in our family's best interests if she took a leave of absence from her new job, because it would allow her to be home to care for me as well as our children that are still at home and in school. I am on medical leave for at least the next month, possibly longer - depending on what the doctor's decide when I go to see the new specialists they are going to send me to, since Humira doesn't seem to be working to help minimize my flare-ups. 

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Organizer and beneficiary

Victoria Garrett
Saint Anne, IL
John Garrett

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