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Discussion in 'Announcements and Such' started by Boik14, Apr 13, 2013.
Get well brother
Get well wharf. sorry it took me so long got caught up in life.
Get well soon Jon!
prayers & positive thought
My thoughts and prayers are with you Wharf!!!!! Get well soon so you can enjoy this awesome season we are starting...
Update in case anyone is interested: https://fundrazr.com/campaigns/ahfYd/ab/f2sZhe?psid=2a6470f04b984e15a3597a2d5ba61687
I hope you can overcome this Jon.You are young enough to do it.My prayers will go out to you bro.The job you did so well is still open for you .God bless.
Jon and I are truly grateful for all the positive energy and support we have received from our friends and "family by design", those near and far. We made it to New Mexico in October, where Jon receives infusions every 7-10 days. I doubt we could have survived the weather conditions on the east coast this past winter, given Jon ended up with nine (yep - NINE) vertebral compression fractures that ultimately left him six inches shorter than his former self. I don't think the transplant team in Philly liked me very well by the time we left, Jon's liver values were showing improvement with the Berkson treatment and every step we made put us further away from being the cash cow for transplant that they hoped we'd be. While this treatment is NOT a cure, the quality of Jon's life has improved significantly as a result of it. He's managed to stay out of the hospital for a year now, better than when in 2012, he was hospitalized nearly a dozen times, and each time, sent home in worse condition than when he arrived. The whole process really made me re-think my industry, I can tell you all that!
I have a few business ventures that are becoming more and more sustainable (I was fired from Virtua Hospital in NJ last February, which turned out to be both a blessing and a curse). Jon helps a great deal with them, he's well suited for this stuff since he can't function back at an 8 hour day in his industry, and he can take breaks as he needs them, a luxury the workplace would not support. I was fortunate enough to transfer with Pier1, and will (hopefully, if the plan works as they tell me) be starting a new management position with them sometime in May. We've been very fortunate the most of the plans we made to radically change our lifestyle to support Jon's (and my) good health have been falling into place.
Here are the links to some of what we do here:
Lastly, we're asking for help with getting us to that point...and I'm shamelessly promoting this thread. Please, please, feel free to ask us any questions you might have about our decisions, the treatment, the plan - and lastly, thank you ALL. https://fundrazr.com/campaigns/ahfYd/ab/22sRW3?psid=4f98ff4706cc40d8855e36acc3d5dfe1&fb_ref=share__22sRW3
I'll be praying for you each day.
Thinking of you and wishing you a speedy recovery.
-Sent from my TMO Samsung Galaxy Note 3 using Tapatalk
So, starts a NEW odyssey.
Jon was seen last Thursday in the ER for hepatic encephalopathy, a symptom of liver failure. His Liver functions are garbage, his liver is failing, again, worse than last time, which is normal disease progression. We can manage the symptom, and hopefully, cure the disease, by combining a new therapy that Jon was approved for yesterday as well. We also were approved for a grant to cover the co-pays of this nearly $100,000 protocol. (I thought it was about $22,000/month, but the billing invoice in the package for a 28 day supply was $32, 319.00) The idea is to combine Berkson's therapy - the ALA infusions with the Harvoni treatment - a new antiviral that is ABSENT of the interferon that nearly killed Jon, and nearly absent of side effects at all. Dr. Berkson, and Dr. Okoli, the Infectious Disease Doc who cleared Jon for treatment, tout excellent results with people whose disease is more advanced than Jon's.
Because our healthcare insurance changed a total of 4 times in the last calendar year, we got slammed with out of pocket costs and deductibles worse than ever. Much of our resources for ALA treatments were shifted to prescriptions, labs, Ultrasounds, and supplements, and I'm certain this contributed to the instability of his disease process. Trust me, I'm really resourceful at containing his costs, and finding ways to legally generate income.
So, the Harvoni arrives today. Jon has labs again due, and two out of pocket office visits as follow up to yesterday's ER visit, and the Harvoni protocol. We'd like to get the suggested weekly ALA infusion for the next 12 weeks when the Harvoni treatment starts. We are advised the ALA will facilitate the Harvoni. We figure this last round will probably blow up about 3,000 to 4,000 dollars in out of pocket expenses, and we're opening up Jon's fundraiser again. I'm open to any ideas ANYONE has to promote it, to do something different, to make it happen.
Thanks, as always, for your kind thoughts, loving words, your actions, your support. We are grateful for every day he has that's a good day. Love, blessings and namaste.
BTW, Jon is still at firstname.lastname@example.org and would probably love to hear from any of you.
And thank you Bryan, for everything! Jon got your email, thinks it's outside his scope right now, but may revisit the idea as we move through treatment.