Over the last decade, we have learned that RSD isn’t a disease that can be fought by only the patient and immediate family. RSD is a disease that requires the support of many. As we started opening up about Justin’s tragic battle with RSD, we have been touched by the number of people willing to help and we have learned to accept that asking for help is ok. We have also learned that sharing Justin’s story is part of the healing process.
The doctors tell us that Justin’s physical deterioration is nearing the point that he may never regain proper function of his extremities. Below is a very detailed account of Justin’s battle with RSD, detailing the severity of the situation. We have learned that speaking more openly about Justin’s battle with RSD does make us vulnerable but is also an important part of the healing process. To those of you new to this journey with us, we thank you for your support. To those of you that have been by our side during the past decade, Justin continues to fight and remains hopeful because of your support.
Justin was a gifted athlete, Honors student and a kind sole that was dedicated to his family and friends. In 2005, the sports, time spent with friends and Justin’s bright future were replaced with 60 pounds of weight loss, countless doctor visits, lengthy hospital stays and the surgical insertion of a feeding tube that was supposed to stop the rapid weight loss and his cachectic state as described by his doctors. Justin’s surgery went terribly wrong. Now at 6’2 and 126 pounds with skin dangling from his body, Justin awoke from the surgery with a new and horrific pain throughout his body that was dismissed by his doctors and a feeding tube that was rejected by his body and failing to provide nutrition. Desperate for help, Justin was rushed to the Mayo Clinic, MN where they discovered bad bacteria in his body that was causing his feeding tube to fail. With this diagnosis, Justin’s doctor at the Mayo Clinic shared that Justin would have never experienced dramatic weight loss and would have never had the feeding tube if a simple fecal study had been conducted. Justin was put on antibiotics and quickly regained the weight but the pain only got worse. He was now spending his days at home in bed from the pain and a sensitivity to light that forced Justin to lie in his bed with the window shades down all day. Two years later, he was diagnosed with a disease called RSD/CRPS. RSD causes pain so excruciating that it is rated by the McGill Pain Scale as the most severe form of pain, worse than child birth or having a limb amputated.
Justin’s pain was throughout his entire body, even his face. He was told by his doctors that his only chance for recovery was to go to Monterrey, Mexico and participate in an experimental treatment that required a five day medically induced coma. Justin bravely traveled to Mexico. Before entering the ICU for the coma, he looked at my mom and said “I am going to put my head down and score a touchdown”. When Justin woke up from the coma, he began to slowly recover and his spirits were lifted. Justin’s slow recovery didn’t last long. After a few weeks of progress, Justin began to regress again. He was diagnosed with the swine flu and lost all of the good that came from the Ketamine coma. Six months later, Justin was sent home from Mexico with the same bone crushing pain he was experiencing before the coma. Since 2006, in addition to the feeding tube surgery and swine flu that took away any progress from the Ketamine coma, Justin had his Gall Bladder removed, has experienced oozing from his stomach at the site of his feeding tube, had a surgery to remove a piece of his feeding tube that had been negligently left inside of him, was rushed to the hospital unable to breathe after being prescribed the wrong dosage for a medication, has collapsed in our driveway with his knee skin burning away on the blacktop, battled pneumonia as a result of improper dental surgery procedures, has lost most of his hair on his head and legs, experiences swelling and a purple tint in his feet, is sensitive to the slightest touch and he suffers from post-traumatic stress disorder that causes terrible nightmares and screaming in his sleep on a nightly basis.
Justin said he first realized his life was being taken away when he was lying in the hospital on the cusp of starvation and barely able to move instead of being with his friends. Fast forward to 2014, my parents have spent $600,000 in medical bills (their retirement is wiped away) and Justin’s situation has become dire. One of the moments that really summed up this tragic condition was when my girlfriend said to me, “when Justin has tears run down his face from pain or wakes up screaming from a nightmare, I can’t even give him a hug to show him how much he is loved“. His pain is so bad that he can’t hug anyone or lift his arm to touch his face. He lives in a hospital bed in our house, he is mentally sharp, but is unable to move due to the horrific pain.
We would love for each of you to join Justin’s RSD Brave Army of Caring Supporters. We thank each of you for your donations and kind words of encouragement. The donations we receive will be used to help fund Justin’s medical bills and in support of my parents. Their expenses are immense but together we can help ease the pain of this disease.
I love my brother and truly appreciate your love and support for Justin and my family. If you have already contributed, we ask that you not feel obligated to donate again.