WNY/Family, friends, community rally to support Wyoming woman in need of double lung transplant

Provided photo

Chicken barbecue set for June 22 in Batavia

By Mike Pettinella
Special to Video News Service

Michelle Rhodes says she’s looking forward to a day when she can chase her grandchildren around her yard on Transit Road in Wyoming.

Born with an incurable and underdiagnosed disease known as Alpha-1 Antitrypsin Deficiency, the 49-year-old wife, mother of four and grandmother of two is on a quest to receive a double lung transplant – her only option to regain a normal life after years of struggling to breathe.

“I’m hoping to be able to run a marathon,” the Oakfield native said with a laugh from a hospital bed at Wyoming County Community Hospital on Sunday afternoon. “At the very least, to be able to run around with my grandbabies.”

Little 7-year-old Teegan and 4-year-old Nova surely would love to have their grandma free from the constant need of an oxygen tank.

Their mother, Brittany, along with other family members, friends and the community are rallying around Michelle and her husband, Chris, who are looking to raise the $20,000 or so required to pay for the transplants and related expenses at the University of Pittsburgh Medical Center.

Already, a GoFundMe page (Fundraiser by Hailey Rhodes : Support Michelle’s Double Lung Transplant Journey (gofundme.com ) has raised more than $5,500 and a chicken barbecue and basket raffle fundraiser scheduled for 1-4 p.m. June 22 at Polish Falcons Nest 493 at 123 Swan St., Batavia, is expected to raise several thousand more.

Michelle said she checked into the Warsaw hospital because she came down with the flu but expects to go home in a few days. From there, she will resume what has been a series of hospital visits and appointments, all geared to putting her in position to receive the transplants.

She said the disease is hereditary; both of her parents, Dave and Carol Coughlin, have the gene. Her children – Hailey, Brittany, Ryan and Michael – all are healthy but are at an elevated risk.

Twelve years ago, Michelle was diagnosed with having Alpha-1 by Dr. Robert M. Kottman, a renowned pulmonologist affiliated with Strong Memorial Hospital in Rochester. Today, she is in the end stages of the disease.

“I’ve been in and out of hospitals (with pneumonia and respiratory failure), been Mercy Flighted and put on ventilator after ventilator,” she said.

According to information posted by Hailey, Michelle’s lung function has steadily decreased over the past decade and currently is at 32 percent. Even the simplest tasks take major effort.

“We all want to see her enjoy life again,” Hailey said during a fundraising committee meeting at Cinquino’s Pizzeria. “Just to be able to go to the grocery store and go shopping.”

Fortunately, Michelle has been deemed a good candidate to be placed on UPMC’s transplant list. Prior to the operations, however, she is required to coordinate a care team of friends and family that will support her before, during and after the surgery. (Provided photo)

“She’ll have to stay in Pittsburgh for three to four months following the transplants, and someone from the care team will have to provide 24-hour care as she must stay within 30 minutes of the Pittsburgh hospital,” Hailey said. “Then she will have to visit UPMC every three to four months for an evaluation.”

While she has insurance, it doesn’t cover everything. Out-of-pocket expenses are estimated at $8,500 for 90 continuous days of lodging near the hospital. Food, transportation, medication, supplies and copays will cost approximately $12,000 in the first year.

Hailey said Michelle is set to return to Pittsburgh July 15-17 and that’s when she officially will be put on the transplant list. Within a matter of days after arrival, she will receive one lung and — after making sure there are no complications — then she will receive the second lung.

“Our mom is the glue that holds are family together – one of the most selfless, kindhearted and genuine people, always going above and beyond for those around her,” Hailey wrote on the GoFundMe page. “Our family can’t thank you enough for all of your support.”

She also thanked Gerry Barber for organizing the fundraiser and Dale Gress, who has pledged $1,000 toward the cost of the chicken barbecue.

Tickets for the chicken barbecue fundraiser at the Polish Falcons can be purchased for $15 by calling Gerry Barber at 595-737-0079, Dave Coughlin at 585-297-8604, Amy Goodenow at 585-664-3714 or Karie Schmigel at 585-331-2254.

Pre-orders of chicken barbecue are preferred; a few will be available for purchase on June 22. Delivery is available for orders over six.

To donate a basket, call 585-297-8604. Baskets also can be dropped off at Kolb Automotive, 4003 West Main St.. Rd., Batavia.

The GoFundMe page is at https://gofund.me/4a8129ab and the Facebook event page is at https://facebook.com/events/s/support-michelles-double-lung-/803051525108441/