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Jay has systemic sclerosis (scleroderma) with lung involvement. First diagnosed in 2013, he can trace the signs of breathlessness back to 2010 and is now on oxygen support 24/7. He began transplant evaluation in 2013 and has been in the “on deck circle” since 2016, meaning he has cleared all the medical and non-medical prerequisites for a lung transplant, but has not been sick “enough” to be listed in the New York area. But the time for listing is getting close at hand.
We have set a goal of $10,000 in large part because we just don’t know all the expenses to come. Jay has good insurance, but that only lasts as long as he can work and nasty diseases have a habit of ruining folks’ ability to work. His disease already shapes our lives and our finances, but the really hard part will come after transplantation with increased doctors visits and medication costs.
In 2018 Jay and his family paid out nearly $2,000 in copays for doctors visits and prescriptions. Over the years his disease has led to other out-of-pocket expenses such as a wheelchair ($120), oxygen equipment ($100) and a portable oxygen concentrator ($3000) which enabled him to continue to work and travel the country in 2017.
After transplantation Jay will need to make weekly trips back to the hospital for a few months, then trips every other week and then every other month and so on. Each doctor visit costs over $35 in parking and bridge tolls; plus, co-pays ranging from $20 to $60 per trip (depending on how many tests). And that is the best-case scenario. There will be even more trips with every complication. Then there are the medications. Jay already takes many medications required after transplantation, but in addition to anti-rejection drugs there are drugs to help with the side effects of those drugs. His costs could easily double and blow through his insurance cap. There may also be costs for caregivers’ travel.
Does this cost breakdown seem a little too detailed? What else would you expect from an Economics Professor? Jay teaches at John Jay College in New York City and researches illegal and other “iffy” markets. He has a loving wife and three adult children. He hopes a transplant will enable him to enjoy nature again with lots of hiking, travel to see more of this country and to give him the opportunity to provide his family some financial stability. Donations can also cover end-of-life expenses. Any unused donations made in Jay’s name will be used to fund grants for the Help Hope Live campaigns of those with limited incomes.
Jay has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. There is nothing “iffy” about Help Hope Lives. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
It happened!!
So.... alot has happened since our last update!
Jay was officially put on the Lung Transplant List in late January.
We had to answer every phone call and be ready to go at any moment. He was approved for a right lung transplant, left lung transplant or double lung transplant.
He continued to see his doctors and keep his tests up to date but we didn't hear anything from/regarding the list for several months.
His first "organ offer" was May 8th.
An "offer" means a transplant coordinator calls us with preliminary information and asks if we want to accept it. Jay was the "single lung back up" for that offer. -that means the primary recipient HAS to have a double lung transplant. He did not end up getting a transplant that day; that's called a 'Dry run'.
Each dry run still requires going to the hospital, getting admitted to pre-op, getting a COVID test, drawing 15 vials of blood, a chest x-ray and many hours of waiting.
Jay had 3 more dry-runs from mid-June through early August.
But it all paid off !!!
Jay had a single lung transplant a little over a week ago!!
The surgeon described the surgery as having gone "very well". Jay is still in the hospital and making good progress.
There will be many concerns and challenges on the road ahead but right now things are looking very good.
Thank you so much for all of your positive thoughts and caring prayers.
-Christine
January 25, 2020
I am Listed!
It has been seven years since I was first told a Lung Transplant was in my future. Its been seven years of waiting -- for the REAL waiting to begin.
Thank you for your help on this journey and the rest of the adventure to come.
December 7, 2019 Update
I want to thank my family for getting word out about this campaign through social media before Giving Tuesday 2019. I have always found it difficult to ask for help and I completely abstain from social media, so their efforts are greatly appreciated.
I am humbled by the kindness and generosity of those who contributed to the fund and expressed their prayers and encouragement. I had a transplant evaluation on Wednesday and my physician agreed I should be listed. It will take a few weeks for all of the formal approvals, but I should be on “The List” by New Year. Christine and I are nervous about the future but the tremendous support of so many has given us an emotional lift at just the right time.
Help Hope Lives made this explanatory video!
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This has been such a long road already—hoping for a checkered flag soon, meaning it’s done, and you won!
Peter and Christina Fairweather
Get well soon! From your Putnam Valley neighbors Meg & Drew Brown
Andrew Brown
Sending love and prayers.
Anonymous
Good luck Jay! Thank you Christine for letting the broader Facebook family know of this wonderful way to support Jay and you.
Christine Turner
Pray for Jay Hamilton.
Mary Lou Castellano
Bless all of you for helping!!!
Jimmie Hamilton
Praying for your dad and family.
Sage Gallagher
We love you and your whole family, Jay!
Herb and Elizabeth Derby
You have a wonderful daughter. We are happy to wish you a better future.
Cherry Silver
We love you, Hamfam!
Shelley Bushman
I'm looking forward to hearing about Jay's recovery and his new adventures with his healthy transplant!
Tamia Wardle
Make checks payable to:
Help Hope Live
Note in memo:
In honor of Jay Hamilton
Mail to:
Help Hope Live
2 Radnor Corporate Center
Suite 100
100 Matsonford Road
Radnor, PA 19087
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