NECC survivors tell stories
One year after the New England Compounding Center shut down when it was linked to a meningitis outbreak that killed 64 people and sickened hundreds more, charges have yet to be filed against the company's owners. As prosecutors continue to investigate the case, survivors are speaking out about what they experienced after they were injected with tainted steroids. Here are some of their stories.
Angela Farthing
Abingdon, Md.
I received the tainted steroid injection from NECC on August 31, 2012 for severe sciatica. Since then, my life has dramatically changed. I suffered a stroke, severe fungal meningitis, an aneurysm, a fungal abscess and ultimately arachnoiditis. I was hospitalized for over two months and was out of work for six months. I had to take toxic antifungal medications for nine months, which caused a 25-pound weight loss and hair loss so bad I bought a wig. I can no longer sit or stand for too long without an increase in nerve pain and muscle cramping.
I no longer can enjoy running, jogging, dancing, traveling, festivals, yoga, teaching or intimacy. I do not know that I ever will enjoy those things again. Simple tasks have become difficult. I struggle making sense of this life-changing event and my hope is that one day I can look back with relief that it is over.
Danie Lindenberg
Evansville, Ind.
I decided to have steroid injections in my back to relieve chronic back pain due to three bulging disks, as surgery would require a neurosurgeon.
My symptoms started about three weeks after my first injection with lower body temperature, sweats, chills, headache and excruciating pain in my lower back and hip. I went to the emergency room and had a lumbar puncture that showed negative. One week later, I went back to the emergency room with same symptoms. About five days later, the lumbar puncture showed positive for meningitis and was started on anti-fungal treatment. I was in the hospital for 28 days and went home the day before Thanksgiving of 2012. I have had seizures and a mini-stroke. The doctors treating me have not really given me a prognosis, as I am still in treatment. The pain is very debilitating and I use a cane, walker or wheelchair. This has brought my life to an abrupt halt.
Dawn Elliot
Elkhart, Ind.
I was treated for lower back pain and received four tainted injections. I had surgery for a fungal para-spinal abscess resulting from tainted injections to scrape out the infection. Post-surgery, I developed excruciating pain in my entire back, as well as neck pain. At times, I cried out and begged for God to help me or take me.
I now exist with chronic back and neck pain, sweats, tremors, limb numbness and tingling, stomach pain and bowel problems, headaches, joint pain, blurred vision, depression, memory problems, confusion, explosion sounds in ears, burning, stiffness in neck, painful feet when I walk, balance issues and the list goes on.
I have little quality of life, no social life, unable to travel for pleasure, much less work. I no longer look forward to the next day. I have had to use my savings to help pay for medical care, and I'm dependent on others. Pain and uncertainty have become my future.
Deena Cawley-Hoyt
Ocala, Fla.
I initially became ill with severe nausea, dizziness, mental confusion, fever, severe head and neck pain 19 days after my second injection. I was in and out of the ER in October 2012 and hospitalized for a week in November 2012 for the same issues. To date, I still experience severe spells of the same symptoms.
I have not been able to be the same wife, mother and employee that I was before the injections. I have had a real hard time continuing to work but don’t have much choice, as I have bills to pay. The scariest part is that I have no idea what my future holds, as the medical community doesn't seem to know how long this can fester in the body of someone with a healthy immune system. It is very frustrating, since nobody (not even the doctors) really understands.
Doris Viola
Ann Arbor, Mich.
This year has been the biggest challenge of my life. My husband passed away several years ago, and my children live 6,000 miles away, so basically I had to deal with all of this by myself. The IV drugs caused frightening hallucinations. I developed atrial fibrillation and was moved to the cardiac ward and placed on appropriate medication.
Side effects from the Voroconazole were horrendous: loss of appetite, loss of hair, splitting nails, very poor balance, frequent falling, continued pain, extreme fatigue, loss of concentration, depression and difficulty sleeping. I have been off the drugs for about four months now, but some of the side effects remain.
My life has been changed. I can't do many of things I used to love doing. And there is a constant concern that the fungus infection lying dormant in my body will return. Some people have had relapses and say they are worse than the original illness, and that is always on my mind.
Kaye Hlusak
Minneapolis, Minn.
I am part of a large group of people who were injected with the contaminated steroid last year. I was lucky enough to not have meningitis, but the effects were immense and caused me a great deal of pain and mental stress.
I had my injection at a local pain clinic where I had several injections for pain in my back. The last injection was given three-and-a-half weeks prior to a night of horror, when my husband had to take me to a local hospital, where I stayed for over a week. Later, it was discovered I had a small brain stem stroke. I had many other symptoms, including slurred speech, confusion, memory problems, painful muscles, joint problems, vomiting and difficulty in word searching.
Many problems linger. I am still unable to enjoy the life I had prior to all this. It is still hard to find a clinic that understands fully what has happened.
Roseann J. Fusco
Ocala, Fla.
A year ago was a terrifying and painful ordeal that none of us victims should have had to face and endure. Many loved ones have been lost and continue to battle the “Fungal Meningitis Nightmare” all because of greed and negligence by several parties involved.
The shock of having your body thrown into emergency surgery and having to take some of the worst drugs to try and treat the fungal meningitis was so hard to endure. I think it made it even worse to know that no one knew how to treat the condition.
So many complications happened, it was terrible. I was in the hospital for three months but am now trying to get back to a normal. It will never be the same. I thank God every day for carrying me through this ordeal. My prayers go out to everyone. Keep fighting.
Traci Maccoux
Brooklyn Park, Minn.
(Account written by mother, Cathy Maccoux)
As Traci’s mother I had a front-row seat to her nightmare. She had six tainted injections in July and August of 2012. Then came horrible headaches and nausea. Many ER visits later, she heard from the Minnesota Department of Health that she had received tainted injections. She then was admitted to the hospital.
In the hospital, the hallucinations began from Voriconazole. She had to have spine surgery to remove a spacer she had because of the fungus. She was forced to drop out of college, could not drive for a year, spent 40 days in the hospital and nine months on Voriconazole. She was in constant pain, had vision issues, broke her ankle, underwent 10 MRIs, could not work and has medical bills almost up to a $500,000.
This is no way for a 23 year old woman to have to live. We have also suffered greatly as a family. We do our best to support her in every way. We now deal with the future.