Local woman prepares for lung transplant
FERRISBURGH — The Newell family has a lot riding on an upcoming spaghetti dinner later this month.
Joanne Newell, 62, was diagnosed 12 years ago with pulmonary Langerhans cell histiocytosis, a rare lung disease that causes organ deterioration. Now the damage is so extensive that a double lung transplant is necessary.
The Ferrisburgh resident is about to complete yet another battery of tests to put her in line for double lung transplant surgery at Boston’s Massachusetts General Hospital.
Newell and her family also have another task ahead of them: Fundraising.
That’s where the spaghetti dinner comes in. The Oct. 22 meal at the Bristol American Legion will be a fundraiser through which Newell and longtime partner Steve Shores have hope to take a chunk out of the funds needed for the transplant.
They set a modest goal of $3,000 for this spaghetti dinner. But over Newell’s lifetime — so long as she lives to fight the disease and keep her body in sync with her donated organs — the family will need to raise by modest estimates tens of thousands of dollars, possibly more.
This situation is not unique to the Newells, said Emily Webb, spokesperson for HelpHOPELive, a nonprofit that provides fundraising assistance to those needing organ transplants or living with catastrophic injuries or illnesses.
Asked how much individuals facing transplants across America might typically need to raise, Webb said, “The need is massive. It’s massive.
“When somebody needs something like a lung transplant the out-of-pocket expenses can be completely debilitating. Often for families who assume things are covered by insurance or who already think they’re well insured, they’re blind-sided by these costs.”
The Newells said they were told by Mass General that they were required to raise $30,000 or otherwise demonstrate they had the ability to live in Boston for a month, in order to qualify for surgery.
This kind of requirement, said Webb, is typical, as so many of the costs associated with transplants aren’t covered by insurance and hospitals need to guarantee that donated organs can be cared for successfully.
“So while patients and their families are in this tumultuous time — being on the waiting list is extremely stressful — on top of that we can be talking about hundreds of thousands in some cases of dollars out of pocket just to keep somebody healthy until the transplant.
After the transplant, patients need to take medication so their own bodies don’t reject a donated organ, which can cost $6,000 a month out of pocket — for life.
“That goes for all transplants: it’s lungs, it’s heart, it’s kidney,” Webb said. “No matter what kind of transplant you need, insurance will not cover the whole thing. Sometimes insurance will also cut you off with transplant-related expenses at a certain point after the transplant, sometimes six months, sometimes a year, sometimes longer.”
Newell’s $3,000 goal for the spaghetti dinner is intended to cover costs associated with care needed immediately after surgery: transportation, a caregiver, temporary relocation.
The hospital has told her she’ll need to remain in Boston for a month after surgery, she said, and will then need to return to Boston two to three times a week after that for about six weeks. Following that, she’ll need to return to Boston once a month for a year.
Newell and Shores turned to HelpHOPELive for help raising money, so that donations would be handled in a straightforward and transparent way.
HelpHOPELive first vets prospective donor patients with their doctors. Then donations can be made to HelpHOPELive in that individual patient’s name. The nonprofit then pays medical bills directly or reimburses expenses for things like travel, food or lodging, after receiving receipts.
The organization counsels organ transplant patients on how to begin fundraising and suggests fundraising approaches that are likeliest to work best in their communities.
LEARNING TO BREATHE
Since being diagnosed in 2004, Newell has had to adjust to a whole new way of living in which just taking a walk can be a huge challenge. She recently completed eight weeks of pulmonary rehab with the UVM Medical Center, for example, at which she had to train herself to breathe through the nose only.
Newell said what’s been hardest for her is “giving up what I could do before.”
She worked for 20 years in the Goodrich plant kitchen in Vergennes, but had to leave because of her illness.
Shores farms hay and raises replacement heifers and beef cattle, and Newell misses pitching in on farm chores.
“She used to help us hay,” said Shores. “Feeding the calves, scraping down the gutters, shoveling silage — you name it, she did it. She’s a farm girl.”
Newell says she hates to have to stand around and watch while others work.
“It’s rough. It’s not easy,” Shores agreed.
Still Newell said it’s really important to keep a positive attitude.
“You’ve got to live with it. I don’t let things get me down. I try to keep my spirits up,” she said.
Number one brightener of Newell’s day is her nine-year-old grandson, Damian.
“He is a joy,” said Newell, her eyes brightening. “He’s a joy to have around. He’s right nearby in Bristol. He keeps my spirits up.”
Family and friends are rallying to help with the fundraiser, said Newell, doing everything from cooking spaghetti to providing music.
The HelpHOPELive spaghetti dinner fundraiser for Joanne Newell will take place Oct. 22, 5-10 p.m., at the American Legion Post 19, at 56 Airport Drive in Bristol. Tickets are $12 per person; children under five eat free. Tickets can be purchased at the Vergennes Redemption Center, at Cubbers Restaurant in Bristol, or at the door.
The benefit will include a 50/50 raffle, a silent auction, and dancing.
All proceeds will be donated to HelpHOPELive and earmarked for Joanne Newell to help with uninsured transplant-related expenses.
For more information, go to Newell’s Facebook page at www.facebook.com/joanne.newell, call Joanne at 802-343-9663, or call her daughter Tina Booska at 802-373-8431.
To make an online donation to Joanne’s fund at HelpHOPELive go to https://helphopelive.org/campaign/6030.
Reporter Gaen Murphree is reached at [email protected]