juliesdreamteam
New member
Want to talk about dilemmas? For 40 years, my Julie has battled CF. For 23 years of her life, we didn't know she had CF. For the past 17 years, she has not been an average CF patient. She's had more of her fair share of hospitalizations but she went from 0-60mph FAST on this last one. <div><br></div><div>What was to have been an IV Tune Up, has led to her hanging onto life, awaiting a set of lungs. </div><div><br></div><div>READY FOR THE KICKER????</div><div><br></div><div>I'm a UAW Worker. I'm guilty of having a fantastic healthcare policy without caps of any type. I wanted to leave Ford Motor Co. years ago but stayed for Julie's medical insurance. There simply is no better insurance in America than the one I currently have.</div><div><br></div><div>UK is a covered hospital for everything under the sun EXCEPT lung transplants. Bleeding has led to embolizations of the bronchial arteries....twice. A Trach is in place. Physically, it doesn't get much worse for my Julie. We need lungs and we need them yesterday.</div><div><br></div><div>In 2009 and 2010, UK's transplant facilities were closed down. They led the nation those years in NCAA Basketball and killing people at break neck pace. </div><div><br></div><div>In 2011, UK went out and brought in Doctor C. Hoopes. This guy is the BEST of the BEST. He literally wrote the book on thoracic transplants. He made Duke #1 in transplants and then headed off to San Fransico to make UCSF tops in the land. At UK, he and his team have successfully given a second chance to 10, high risk Cystics and those patients are THRIVING! BUT they've got to post 5 years of great progress to wipe out the 2 horrible ones before my insurance company will pick up the tab.</div><div><br></div><div>Of the 20 or so facilities that are approved, politics is playing into the equation. Julie is at risk of failure because of the bleeding and the underlying infection. My insurance will pay 100% of everything and I can't get her into one of these facilities because they won't accept her. Should it fail, it's hurt their success rates and they're wondering why Hoopes would send her away when he's the best of the best. They know he can do everything at UK that they can do in their states. Hell, my insurance company even pays to have her flown to a participating facility BUT the bleeding puts her at risk and Hoopes says a bleeding episode at 30,000 feet would be catastrophic. Besides, you shouldn't transfer her care for insurance reasons. You do so because a medical reason.</div><div><br></div><div>When I initially brought Julie to UK, I met a cystic that was in for his new lungs. Three weeks after that meeting I ran into the kid (30) in the cafeteria hallway. We talked briefly and he told me his first breath of air was "heaven". 98% O2 at room air. I couldn't have been more happier for this young man that appears pointed in the right direction with his second chance at life. Simply astonishing. Hoopes did this surgery.</div><div><br></div><div>The only transplant doctor in the country that has agreed to do one for my Julie is Hoopes. </div><div><br></div><div>I have made my decision. We will have her transplant, should we be fortunate to receive donor lungs, at the University of Kentucky. I like many other cystic families will have to do whatever it takes to give my Julie a second chance. Home will be sold, stocks will be sold, I'll start from scratch to save her life. It's the right thing to do. </div><div><br></div><div>The transplant team has told me that they will send someone in to talk with me about successful fundraising techniques to help pay for all of this. This is where I deliver my resounding LOL. Over the past year, Julie's Dream Team has successfully raised close to $100,000 for the Cystic Fibrosis Foundation and the Great Strides walk. Hell, If I can make a national agreement happen with Buffalo Wild Wings 750 stores (and it's a very good possibility) I will. It'll lead to millions for CF research and now I have to find a way..on top of that..and I will...to raise money for a way to save her now. </div><div><br></div><div>As bad as this situation stinks, I assure you my Julie has it far worse than I. Hell, 30,000 with CF have it far worse than I. I'll find a way to make this happen for her. Thanks for letting me voice my frustrations.</div><div><br></div><div>God Bless and CURECF!!!</div><div><br></div><div>Roy E. Ice</div><div>www.juliesdreamteam.com</div><div><br></div><div><br></div><div> </div>