Thoughts about hope and hemophilia...
Being a young parent isn’t an easy task, but being a young parent and having your child diagnosed with a severe bleeding disorder is something most people never imagine. This was the case for Jeff’s parents. At just 19 years old his mom gave birth to him, and having no family history his diagnosis came with quite the shock. But this didn’t determine his life. As Jeff says “it’s part of your life, not your whole life.”
Jeff was always very active, played competitive baseball, and unofficially played football. He remembers kind of doing his own “prophy” before that was really a thing. And because of this, his only real damage today is a left elbow target joint.
At around the age 15 years old, Jeff found a passion in stock car racing. Which as you can imagine, made his parents very nervous. Jeff said his moms favorite thing to always tell him was “you can do it if the hematologist says it's ok”. The reasoning behind this, is because his parents never wanted to be the reason he was limited in activities. This way the disappointment was left to the doctors and not them. Personally, as a mom of a young Hemophiliac I think this is great advice, and plan to use it in my future battles with out son.
When Jeff turned 18, he got involved with demolition derbies. His exact words were, “I was hooked after my first race! The adrenaline was unmatched!” Although this was not something his mom would have chose for him, she was on board and would bring his factor into the pit so he could infuse right before the race. Jeff also had his car painted to say “STOP! I’m a bleeder!” on the drivers door so anyone who saw it would know.
“I was an adrenaline junky, and hemophilia took a back seat.” Because of the addiction to this feeling, Jeff started only infusing when he absolutely had to. As a result, he was in a terrible ATV (alterraine vehicle) wreck that left him in the hospital for 42 days due to severe injuries and bleeding caused from his hemophilia. During this time, his pain was indescribable. He was on very high doses of IV (intravenous) pain medications. He says, “I remember just wanting out, I couldn’t wait to be able to leave the hospital.”
When it came time that he could be released, he was still in a lot of pain. This resulted in the staff discharging him with very high dose oral pain medications. Jeff says, “you go from doing the right thing, to completely out of control before you know it.” And just like that, he was hooked. Jeff was to a point in his drug use, that he was using just to “not get sick”. And as a result, started seeking these drugs elsewhere because the doctor was no longer prescribing them. Jeff explains that this happened because every time he would go for a follow up he would say “yeah I’m doing fine” just so there was no suspicion in what was going on.
Jeff says “I would not wish opioid withdraws on my biggest enemy”. Jeff unfortunately went down a bad road of buying, and selling drugs just to keep himself from experiencing this withdraw. It finally came to a point where he was offered a “free sample” of heroin. After an argument with his dealer, because in his mind he didn’t think what he was doing was wrong, and Heroin seemed extreme at the time, he went ahead and tried it. One tenth of a gram was all it took and he was hooked. “It gave me a high I hadn’t got in so long, it felt so good.” At this point, Jeff promised himself that he would never resort to using needles, he would only just snort it. And although it still wasn’t healthy, he kept to that promise.
This lifestyle led Jeff to some pretty dangerous situations. He remembers ending up in the emergency room many times after “looking down the business end of a gun and getting beat up pretty badly." Add being a hemophiliac on top of this, and it makes for a pretty bad time. Often times the ER staff would tell him that what he’s doing to himself is going to end very badly and they tried to help him.
Jeff remembers the exact moment that he realized how bad he was addicted to these drugs. In his words “I did heroin in the bathroom at my parents house. I looked up at myself in the mirror and for the first time I had a real “GOD” moment. I spilled everything to my parents, and although I thought no one knew, they did. They were very supportive.”
Jeff went to treatment, on November, 26th 2011 and has been sober ever since!! He has turned his experiences into something positive and is open about his journey. He is married with four kids, and his four year old daughter has mild hemophilia. “I have come so far”, Jeff said. Which I totally agree with. He now stay on top of his prophylaxis treatment, and really focuses on the future instead of instant gratification to help him continue on his successful path of sobriety.
Unfortunately pain is apart of his everyday life, but he doesn’t really know any other way. Jeff has learned that meditation works really well to help with this. He says, “it only takes a few minutes and I am able to refocus my mind away from the pain.” Jeff has told himself that if the day comes, and something terrible happens, he will allow himself to use pain meds again, but only under close supervision of his medical teams.
Jeff’s dream is to share his story with as many people as he can. He wants people to know that even if you are going through something like this there is help out there. He says “I love helping people and giving back to my community.” When asked if there was one thing he would say to encourage whomever may be reading this his response was, “no matter how bad things get, no matter how hopeless things may seem, this is a tight knit community and there are people that have been where you are. They’ve solved the riddle and can help you. You are stronger that you realize, DO NOT GIVE UP!!!