Marty has his med change next week and the nerves are starting to set in. Not that I don’t trust the doctors or modern medicine, I just remember what happened when he first started the Kineret and then didn’t have it for two days. The next 3 days were spent in the ICU.
A little history: When Marty first got sick, his primary symptoms were persistent fever (over 2 weeks), migrating joint pain with inflammation, and severe fatigue. We were just starting to get those symptoms under control when his heart problems started. At first it was chest pain, then shortness of breath. A week later it was full-blown pleural and pericardial effusion–fluid in the lining around his heart and lungs. He had systemic onset juvenile idiopathic arthritis.
He was admitted to the local children’s hospital and given IV steroids to control the inflammation. That didn’t work so the rheumatologist decided to try Kineret. It was a miracle drug. Perfect, except that the insurance didn’t want to cover it, I couldn’t afford it, the pharmacy wouldn’t order it, and it burned like hell going in. Pardon my French, but that’s how bad it apparently hurts.
They discharged him, not knowing I wouldn’t be able to give him the medicine and he would be back in the ER in two days in worse shape than ever. The next 3 days were a blur in ICU as they started the Kineret and the heart and lung symptoms started to clear up. Again.
The doctors then refused to discharge him until I had Kineret in-hand, which was easier said than done. The Kineret Foundation is available to help the uninsured, which technically didn’t include Marty. Thankfully the social worker at the hospital helped me navigate the maze of applying for and documenting the need for a waiver because of being underinsured. We were approved.
After 3 long weeks, I finally had the Kineret, and the insurance ended up paying more for that hospital stay than they would have had they just covered the medicine in the first place. For a few years.
Fast forward two years. Two long years of painful, burning daily injections, sometimes twice a day, and thousands of pills. He got dozens of infections and illnesses because of his compromised immune system, and missed almost a full year of school between December 2009 and June 2011. He still kept up in school, was able to get back on the baseball diamond, and all 3 of us started speaking at fundraisers and congressional lobbying meetings. The only thing he hasn’t done is grow.
Yes, his younger sister is now 4 inches taller than him. Thanks to 2 1/2 years of chronic uncontrolled inflammation, in spite of constant anti-inflammatory medicines, steroids, cancer medicine, and biologic medicines that suppress his overactive immune system.
Absolutely no growth. Which brings us back to next week. The doctors hope that changing to Enbrel will control the inflammation and still keep the heart and lung issues in check. I am praying it works because I don’t want to go back to 8 shots a week, or to the ICU.
Giving my firstborn injections aren’t what I want to do, but if that’s what it takes to let him be semi-normal, I will. What I want is a healthy son, but that won’t happen until a cure is found for juvenile arthritis. Until then we cope the best we can and continue to speak out to raise awareness and research funding.