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I started this fund to help my friend Renee fight for her life. For those of you who don’t know us, Renee (Nea) and I have known each other since 4th grade. Through most of our lives, we have been friends – best friends. Throughout Nea’s illness and struggle for life, people have said she is fortunate to have me as her friend, but I will tell you, in all honesty, it is I who am blessed to have her as my friend – my best friend. I was struggling with words to describe what is wrong with Nea, why she needs the money, what will be done with the funds, and why time is so important. It turns out last week Renee unwittingly did that for me. Last week she joined a support group for her illness, and opened up to them about what she is going through (for those that know her, she is extremely private). She has been diagnosed with Silicone Toxicity/Poisoning – a condition that if untreated can be fatal. Simply put, genetically, silicone is toxic to Nea’s body, and her body is full of it. The following is an excerpt from Nea’s post to her Breast Implant Illness and Healing support group. It is her story in her own words. She never meant for or wanted it to be made public – it is humiliating to her; however, over the last four years, I feel like I've watched Nea die a long, slow death, and I need your help.
“Hi…I will keep it as short as possible, but I want to include some personal stuff. If anybody from the "outside" ever reads this, I want to give them a real glimpse of the struggles we've been through.
First of all, let me say I was a very healthy, extremely active, and loving mother of a 12 year old son (Josh) when this began. I am an R.N., and if I wasn't working or at one of Josh's activities, I was busy out working with our horses. I was truly loving life! That quickly changed. I got married in October 2010, found a lump in my breast in May 2011, and that same month had a bilateral mastectomy (non-nipple sparing) with reconstruction. Expanders were placed to prepared my body for reconstruction. I'm 5'6" and weighed 127 pounds the day of surgery. From day one, I was sick as a dog. I have an extremely high pain threshold, and they couldn’t get my pain under control in the hospital. My life/health began to quickly spiral downward. At that point, I knew I was cancer free, but nobody could explain my symptoms which were rapidly mounting. I had severe pain; I was dizzy all the time – falling several times a day, a few times down the stairs; I was horribly nauseous all the time and had trouble swallowing; I had daily migraines, numbness in my legs, and pain in my arms, shoulders, neck and back. I couldn't even tell you what day it was 10 minutes after I had just asked what day it was! The next two years included MRI's, CT scans, bloodwork, acupuncture, therapists, meds, meds, meds, and more meds. Since reconstruction, doctors diagnosed me with chronic fatigue, cognitive dysfunction, insomnia, rheumatoid arthritis, Raynaud syndrome, Sjogren’s syndrome, autoimmune disorder, thyroid & adrenal problems, leaky gut syndrome, fungus, yeast & mold, chronic migraines, heart palpitations, high blood pressure, fibromyalgia, liver & kidney dysfunction, tinnitus, anxiety, and depression. I repeatedly asked multiple doctors if it could be my implants, because that was the only thing that had changed. Each one, from my primary care physician to my plastic surgeon to my neurologist emphatically assured me implants could not make me sick. Additionally, during those 2 years, I required 8 additional surgeries for my shoulders. Out of the blue, I kept having frozen shoulder and then torn rotator cuffs – and I wasn't doing anything! I'm an R.N., and was unable to work. It got to the point I was unable to even get out of bed by myself, and if I walked alone, I fell. My arms were almost useless. I could not feed, bathe or even wipe myself after using the restroom. My husband decided to put me in a nursing home because he couldn't care for me. They had me see a pain specialist, and from that point on, I was drugged out of my mind. I had intense physical therapy in the nursing home, and after a few months, I was at least able to assist in caring for myself again. Throughout all of this, due to meds and the fact I was bed ridden most of the day, I gained 160lbs - I more than doubled my weight! I was eventually discharged from nursing home under the care of the pain specialist. I continued with physical therapy while beginning the disability certification process. Shortly after I moved home, my husband told me he wanted a divorce. Since Josh was only 14 and my mother had passed away from breast cancer a few years earlier, I had no one able to help, no way to work, and nowhere to go. After that, I lived in a homeless shelter for a while as well as living out of my car during the winter in Cincinnati. My best friend told me to come home to Florida, and she would help me. I had joint custody of Josh, and knew I could not turn his world upside down any more than I already had. He couldn’t stand the thought of his mom in a homeless shelter, so I had to leave him with his father. I moved home, beaten up, ready to give up...I lost my insurance when the divorce was finalized. I did not qualify for any "aide" because my income had been too high (his income, married) and I’m not eligible for Medicare until 2 years after my date of disability (I am now classified as 100% permanently disabled). I moved to Florida that sick, with no insurance and barely enough in disability payments to cover my bills. For the next four months, I weaned myself from all meds (true horror story), and once my head began to clear, tried to make sense of everything. I was looking online one day and, by the grace of God, found mention of Dr. Kolb. (Note: Dr. Kolb is one of three doctors in the country that specialize in the treatment of this illness)
A few ladies from my best friend’s work and her family pulled their monies together to pay for my consultation fee with Dr. Kolb. We finally collected enough money for travel expenses, and my consult was a couple of weeks ago. WHAT A RELIEF to have somebody understand and validate what I have been going through! Of course, I don't have money for the explant and recovery program, but my friend actually works for hospice as a fundraiser. The plan is to make a GoFundMe page along with her other contacts and try to raise the money. Dr. Kolb said I'm not healthy enough for surgery right now, so she started me on a program to strengthen my body so that I can have the surgery. She also didn’t believe I could make it until September 2016 (when I qualify for Medicare). My prayers are that we can raise the money so I can explant at least by January...just don't know how much more I can take. As you know, after the explant, up to two more years of meds, treatment and physician’s care are required. In addition to all the previous symptoms, my gums are now bleeding; I have sores in my mouth; my hair is falling out; and my body is covered in sores with little "balls" coming out of every sore. Dr. Kolb said it is silica (silicone broken down as far as my body can). Also, I am coughing up literal chunks of silicone. A recent chest x-ray showed a 4.2 cm spot in my left lung. I panicked because of the cancer history but Dr. Kolb is sure it's silicone. Between the nausea and the fact I have trouble keeping any food down, I have lost 100lbs in a year. I guess that's about it…I'm sorry for this being so long, I only have the strength to do it once…”
In addition to what Renee just said, I have a few points to add:
-En bloc explantation is a highly specialized and complex surgery. It is currently performed by only a few doctors in the country, including Dr. Kolb.
-Dr. Kolb says Renee's organs are being compromised daily, so time is of the essence.
-Renee doesn't have insurance, so all costs related to getting strong enough for surgery, the surgeries themselves, and the two year recovery program come out of her pocket.
As Renee continues on this journey, she encourages anyone who has implants and is experiencing unexplained illnesses to PLEASE do their research. We will be adding links to relevant information in updates.
Thank you for helping my best friend. Thank you for helping Josh’s mom. Thank you for helping Renee.
“Hi…I will keep it as short as possible, but I want to include some personal stuff. If anybody from the "outside" ever reads this, I want to give them a real glimpse of the struggles we've been through.
First of all, let me say I was a very healthy, extremely active, and loving mother of a 12 year old son (Josh) when this began. I am an R.N., and if I wasn't working or at one of Josh's activities, I was busy out working with our horses. I was truly loving life! That quickly changed. I got married in October 2010, found a lump in my breast in May 2011, and that same month had a bilateral mastectomy (non-nipple sparing) with reconstruction. Expanders were placed to prepared my body for reconstruction. I'm 5'6" and weighed 127 pounds the day of surgery. From day one, I was sick as a dog. I have an extremely high pain threshold, and they couldn’t get my pain under control in the hospital. My life/health began to quickly spiral downward. At that point, I knew I was cancer free, but nobody could explain my symptoms which were rapidly mounting. I had severe pain; I was dizzy all the time – falling several times a day, a few times down the stairs; I was horribly nauseous all the time and had trouble swallowing; I had daily migraines, numbness in my legs, and pain in my arms, shoulders, neck and back. I couldn't even tell you what day it was 10 minutes after I had just asked what day it was! The next two years included MRI's, CT scans, bloodwork, acupuncture, therapists, meds, meds, meds, and more meds. Since reconstruction, doctors diagnosed me with chronic fatigue, cognitive dysfunction, insomnia, rheumatoid arthritis, Raynaud syndrome, Sjogren’s syndrome, autoimmune disorder, thyroid & adrenal problems, leaky gut syndrome, fungus, yeast & mold, chronic migraines, heart palpitations, high blood pressure, fibromyalgia, liver & kidney dysfunction, tinnitus, anxiety, and depression. I repeatedly asked multiple doctors if it could be my implants, because that was the only thing that had changed. Each one, from my primary care physician to my plastic surgeon to my neurologist emphatically assured me implants could not make me sick. Additionally, during those 2 years, I required 8 additional surgeries for my shoulders. Out of the blue, I kept having frozen shoulder and then torn rotator cuffs – and I wasn't doing anything! I'm an R.N., and was unable to work. It got to the point I was unable to even get out of bed by myself, and if I walked alone, I fell. My arms were almost useless. I could not feed, bathe or even wipe myself after using the restroom. My husband decided to put me in a nursing home because he couldn't care for me. They had me see a pain specialist, and from that point on, I was drugged out of my mind. I had intense physical therapy in the nursing home, and after a few months, I was at least able to assist in caring for myself again. Throughout all of this, due to meds and the fact I was bed ridden most of the day, I gained 160lbs - I more than doubled my weight! I was eventually discharged from nursing home under the care of the pain specialist. I continued with physical therapy while beginning the disability certification process. Shortly after I moved home, my husband told me he wanted a divorce. Since Josh was only 14 and my mother had passed away from breast cancer a few years earlier, I had no one able to help, no way to work, and nowhere to go. After that, I lived in a homeless shelter for a while as well as living out of my car during the winter in Cincinnati. My best friend told me to come home to Florida, and she would help me. I had joint custody of Josh, and knew I could not turn his world upside down any more than I already had. He couldn’t stand the thought of his mom in a homeless shelter, so I had to leave him with his father. I moved home, beaten up, ready to give up...I lost my insurance when the divorce was finalized. I did not qualify for any "aide" because my income had been too high (his income, married) and I’m not eligible for Medicare until 2 years after my date of disability (I am now classified as 100% permanently disabled). I moved to Florida that sick, with no insurance and barely enough in disability payments to cover my bills. For the next four months, I weaned myself from all meds (true horror story), and once my head began to clear, tried to make sense of everything. I was looking online one day and, by the grace of God, found mention of Dr. Kolb. (Note: Dr. Kolb is one of three doctors in the country that specialize in the treatment of this illness)
A few ladies from my best friend’s work and her family pulled their monies together to pay for my consultation fee with Dr. Kolb. We finally collected enough money for travel expenses, and my consult was a couple of weeks ago. WHAT A RELIEF to have somebody understand and validate what I have been going through! Of course, I don't have money for the explant and recovery program, but my friend actually works for hospice as a fundraiser. The plan is to make a GoFundMe page along with her other contacts and try to raise the money. Dr. Kolb said I'm not healthy enough for surgery right now, so she started me on a program to strengthen my body so that I can have the surgery. She also didn’t believe I could make it until September 2016 (when I qualify for Medicare). My prayers are that we can raise the money so I can explant at least by January...just don't know how much more I can take. As you know, after the explant, up to two more years of meds, treatment and physician’s care are required. In addition to all the previous symptoms, my gums are now bleeding; I have sores in my mouth; my hair is falling out; and my body is covered in sores with little "balls" coming out of every sore. Dr. Kolb said it is silica (silicone broken down as far as my body can). Also, I am coughing up literal chunks of silicone. A recent chest x-ray showed a 4.2 cm spot in my left lung. I panicked because of the cancer history but Dr. Kolb is sure it's silicone. Between the nausea and the fact I have trouble keeping any food down, I have lost 100lbs in a year. I guess that's about it…I'm sorry for this being so long, I only have the strength to do it once…”
In addition to what Renee just said, I have a few points to add:
-En bloc explantation is a highly specialized and complex surgery. It is currently performed by only a few doctors in the country, including Dr. Kolb.
-Dr. Kolb says Renee's organs are being compromised daily, so time is of the essence.
-Renee doesn't have insurance, so all costs related to getting strong enough for surgery, the surgeries themselves, and the two year recovery program come out of her pocket.
As Renee continues on this journey, she encourages anyone who has implants and is experiencing unexplained illnesses to PLEASE do their research. We will be adding links to relevant information in updates.
Thank you for helping my best friend. Thank you for helping Josh’s mom. Thank you for helping Renee.
Organiser
Michele Brantley
Organiser
Monticello, FL