Last spring, my younger daughter had surgery to relieve nerve pain in her back. The surgery took about five hours. My husband and I supported her emotionally before surgery and afterwards. Though our daughter’s pain abated, it didn’t go away.
She walked like a person in pain, leaning to one side, and progressing slowly. Her physician recommended injections to relieve her pain and she had a series of them. When we learned of the fungal menningitis outbreak we were worried. Thankfully, her doctor’s office called our daughter and said the injections she received weren’t contaminated.
But last Friday the doctor’s office called again. There had been a mistake. Our daughter did receive contaminated injections made by the New England Compounding Center. She was told to go to the hospital emergency department immediately and have a spinal tap.
After two tries, the third tap was successful. Unfortunately, the tap gave my daughter a horrendous headache and her neck also ached. So it was back to the emergency department for pain medication. The pain persisted, and our daughter returned to the hospital for a “blood patch,” a procedure that involves taking blood from one part of the body and injecting it into the spinal tap site. The procedure worked, thank goodness.
Results of the spinal tap showed no evidence of fungal meningitis. As encouraging as this news was, we weren’t out of the woods yet because it can take weeks for meningitis to develop. As my daughter’s story developed my anticipatory grief developed.
I recognized it because I had studied anticipatory grief and even wrote a book about it. Anticipatory grief is a feeling of loss before a dreaded event or death occurrs. We had already lost our elder daughter and I worried about losing our remaining one. I have many symptoms of anticipatory grief: nervousness, anger (I am really mad at the compounding company), poor concentration, feeling of vulnerability, interrupted sleep, lack of sleep, fatigue, and feeling alone.
How does fungal meningitis get into a prescription drug? So far, 214 people in the nation have become ill, and 15 have died. The Food and Drug Administration has asked doctors to check patients who had eye surgery and heart surgery. My husband and I won’t relax until several weeks have passed and we are sure, really sure, our daughter doesn’t have meningitis.
Yet our story is one of hope. I posted the news of our daughter’s scare on Facebook and many friends said they were praying for us and “the daughter you love so much.” I am grateful for caring friends. I am also grateful for the health care professionals who helped my daughter. And I am grateful for you, the members of the Open to Hope community, for understanding my feelings. I’m sending virtual hugs to you all.