bigbird 60,512 Posted July 23, 2020 Share Posted July 23, 2020 This was the field I was going into before James was diagnosed so I'm intrigued/excited on multiple levels. Hope on the horizon Obviously, for me it's more than worth it, but even without my bias, the cost is dwarfed by the cost of prophylactic and emergent treatments, not to mention the hospitalizations. Link to comment Share on other sites More sharing options...
Brad_ATX 13,654 Posted July 23, 2020 Share Posted July 23, 2020 2 hours ago, bigbird said: This was the field I was going into before James was diagnosed so I'm intrigued/excited on multiple levels. Hope on the horizon Obviously, for me it's more than worth it, but even without my bias, the cost is dwarfed by the cost of prophylactic and emergent treatments, not to mention the hospitalizations. And I thought my wife's bills were insane for her condition. My goodness that's a breathtaking number. But man, I hope for your sake this treatment is approved and works. Would be a huge life changer. Link to comment Share on other sites More sharing options...
McLoofus 35,182 Posted July 23, 2020 Share Posted July 23, 2020 3 hours ago, bigbird said: This was the field I was going into before James was diagnosed so I'm intrigued/excited on multiple levels. Hope on the horizon Obviously, for me it's more than worth it, but even without my bias, the cost is dwarfed by the cost of prophylactic and emergent treatments, not to mention the hospitalizations. Man, I hope this comes to fruition for you guys and others in your shoes. Costs... sigh... better is better, as you said. Link to comment Share on other sites More sharing options...
bigbird 60,512 Posted July 23, 2020 Author Share Posted July 23, 2020 25 minutes ago, Brad_ATX said: And I thought my wife's bills were insane for her condition. My goodness that's a breathtaking number. But man, I hope for your sake this treatment is approved and works. Would be a huge life changer. Yeah, we routinely spend 1-2 mill a month on his meds and his hospitalizations have averaged 2-3...and he has averaged one hospitalization a year. Now multiply that by 14 years. 16 minutes ago, McLoofus said: Man, I hope this comes to fruition for you guys and others in your shoes. Costs... sigh... better is better, as you said. It's coming. From my research and work with a couple of the hematologist I'm thinking within the next 10 years there should be a cure. What's also great is since sickle cell is similar, in that it's a blood disorder, it is also on the same trajectory. Link to comment Share on other sites More sharing options...
aubiefifty 16,766 Posted July 23, 2020 Share Posted July 23, 2020 1 hour ago, bigbird said: Yeah, we routinely spend 1-2 mill a month on his meds and his hospitalizations have averaged 2-3...and he has averaged one hospitalization a year. Now multiply that by 14 years. It's coming. From my research and work with a couple of the hematologist I'm thinking within the next 10 years there should be a cure. What's also great is since sickle cell is similar, in that it's a blood disorder, it is also on the same trajectory. i know little...well actually nothing about this disease. is your son able to ride a bike or play sports? again pardon me for my ignorance. i saw prayers for you and your fam pretty much ever time i see you name on here. anyway my offer still stands and i will be hoping for the best. Link to comment Share on other sites More sharing options...
bigbird 60,512 Posted July 23, 2020 Author Share Posted July 23, 2020 1 hour ago, aubiefifty said: i know little...well actually nothing about this disease. is your son able to ride a bike or play sports? again pardon me for my ignorance. i saw prayers for you and your fam pretty much ever time i see you name on here. anyway my offer still stands and i will be hoping for the best. He can bike, but has to be padded up. He can't play any sports, which sucks because he's super athletic. He can swim, and is part of a USA swim team in North Houston. He is very good at it. His coach is a former UT all-american that used to swim against Rowdy. Link to comment Share on other sites More sharing options...
homersapien 11,367 Posted July 23, 2020 Share Posted July 23, 2020 6 hours ago, bigbird said: This was the field I was going into before James was diagnosed so I'm intrigued/excited on multiple levels. Hope on the horizon Obviously, for me it's more than worth it, but even without my bias, the cost is dwarfed by the cost of prophylactic and emergent treatments, not to mention the hospitalizations. Any chance of getting your son into a clinical trial? Link to comment Share on other sites More sharing options...
bigbird 60,512 Posted July 23, 2020 Author Share Posted July 23, 2020 17 minutes ago, homersapien said: Any chance of getting your son into a clinical trial? Not at his age and he has inhibitors so that limits a lot of his options. Link to comment Share on other sites More sharing options...
aubiefifty 16,766 Posted July 23, 2020 Share Posted July 23, 2020 1 hour ago, bigbird said: Not at his age and he has inhibitors so that limits a lot of his options. what is he lacking bird? would a go fund me help? not a knock on you at all as i saw how much your bills are. i would certainly give and be glad to do so. hell i worry about him not having all the kid things every boy should have because i can only imagine all the money that goes out the door. and to be a stinker what about a subscription to playboy? he might share maybe .lol jokes aside i am serious. everyone on here knows your qualities and fairness. Link to comment Share on other sites More sharing options...
bigbird 60,512 Posted July 23, 2020 Author Share Posted July 23, 2020 3 hours ago, aubiefifty said: what is he lacking bird? In what way? Link to comment Share on other sites More sharing options...
aubiefifty 16,766 Posted July 23, 2020 Share Posted July 23, 2020 11 minutes ago, bigbird said: In what way? anything lol boy stuff. i cannot imagine how tight money would be with those kind of bills. from something he wants that is out of reach maybe? Link to comment Share on other sites More sharing options...
bigbird 60,512 Posted July 23, 2020 Author Share Posted July 23, 2020 31 minutes ago, aubiefifty said: anything lol boy stuff. i cannot imagine how tight money would be with those kind of bills. from something he wants that is out of reach maybe? I took the job as a coach and teacher in order to keep him on Medicaid/CHIPS. We're good. Much better than a lot of others, but thank you. Link to comment Share on other sites More sharing options...
wdefromtx 3,159 Posted July 23, 2020 Share Posted July 23, 2020 20 minutes ago, bigbird said: I took the job as a coach and teacher in order to keep him on Medicaid/CHIPS. We're good. Much better than a lot of others, but thank you. This just highlights the problems with our healthcare system. You get penalized for being successful and making more. UGH. Link to comment Share on other sites More sharing options...
alexava 6,973 Posted July 26, 2020 Share Posted July 26, 2020 On 7/23/2020 at 6:20 PM, bigbird said: I took the job as a coach and teacher in order to keep him on Medicaid/CHIPS. We're good. Much better than a lot of others, but thank you. I thought about you when he was hospitalized. It seems like that was in the fall. Middle of football season. Link to comment Share on other sites More sharing options...
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