Life on the list: an Oak Bluffs woman waits for a life-saving transplant

Gretchen Coleman-Thomas of Oak Bluffs is waiting for a kidney transplant. — Photo by Steve Myrick

At 4:28 pm on Tuesday, June 17, there were 100,799 people in the United States waiting for a kidney transplant, according to federal health officials. Gretchen Coleman-Thomas of Oak Bluffs is one of them.

Vibrant and otherwise fit and healthy at age 71, she has known since she was 28 that this might happen. Although she was diagnosed with hereditary polycystic kidney disease at a young age, the disease didn’t interfere with raising a family or a very successful career in human services.

Two years ago she was settling into retirement on the Island where her family has owned homes since before she was born. Following a checkup at Brigham and Women’s Hospital in Boston, she received some bad news. Down to 98 pounds and feeling awful, her doctor told her that her kidneys were failing. She would need dialysis three times a week, or she would die, her doctors said.

“I really freaked out when they told me,” Ms. Coleman-Thomas said.

She is an active woman with a busy schedule, which includes serving as chairman of the Oak Bluffs personnel committee. She was less concerned about living a long life than she was about the quality of it, with three days each week mostly occupied with dialysis, or recovering from it.

“I fell apart,” she said. “I went kicking and screaming. I was not happy. I asked why me? I didn’t say woe is me, but I asked why me.”

Life on a machine

After four consecutive days of dialysis at Brigham and Women’s Hospital in Boston, she returned to the Island. However, she was alarmed to learn that there were no treatment slots available in the small, three-machine dialysis unit at Martha’s Vineyard Hospital, which operated three days per week in the winter and six days a week in the summer months to accommodate seasonal demand.

With no on-Island option, she had to travel for treatment every Monday, Wednesday, and Friday to the Fresenius Medical Care dialysis center in Mashpee. The regimen took a physical and emotional toll.

Up at 5:15 am, drive to the Steamship Authority terminal in Vineyard Haven, cross on the ferry, get a medical van to Mashpee, spend four hours hooked up to a dialysis machine, then, usually exhausted from the travel and the treatment, take a van, a ferry, and drive back home.

“I passed the hospital going, and I passed it on the way back,” she said. “The treatment was brutal. I’d lay there in tears. I felt like I had no control over my life.”

Speaking up

Never one to go quietly into the night, Ms. Coleman-Thomas firmly made a case to Martha’s Vineyard Hospital executives that they expand their unit’s treatment capacity. The hospital agreed to double its capacity, by moving to its usual summer schedule.

In January of 2013, she and others who previously had to travel off Island were able to receive dialysis on the Island. Ms. Coleman-Thomas said the staff delivers top-notch medical care.

“I am so grateful I was able to be heard at the hospital, and that they responded,” Ms. Coleman-Thomas said. “You have to speak up. A lot of people just rely on the system. You can’t do that. Fight for what you need.”

Dialysis economics

Martha’s Vineyard Hospital has a state license to operate three dialysis machines, according to chief nurse executive Carol Bardwell. Previously, in winter months, the hospital operated three days per week, two shifts per day, to treat six dialysis patients. In summer months, the hospital doubled that capacity with extra staff and by operating six days per week, in order to accommodate both Island residents and summer visitors.

“Because of our year-round residents, those needing treatment, we switched to our summer schedule,” Ms. Bardwell said. “It took us a little while; we had to recruit new staff, that doubled our staffing pattern.”

Dialysis treatment is a money-losing proposition for a small community hospital in the complex world of health care economics, Ms. Bardwell said.

“We have to subsidize it significantly,” Ms. Bardwell said. “It doesn’t even come close to covering the basic cost of the program. For anybody to make a dialysis unit cost effective, you have to have volume, 20 chairs.”

As part of a recent overall examination of hospital costs, the board of trustees had to decide whether to continue operating the dialysis unit at a loss. The trustees voted to continue, based on the needs of the Island population. In the near future, the hospital will construct and move its operation to a temporary dialysis unit in the hospital complex, while it rebuilds and expands the size of the current facility. Hospital executives estimate it will cost $200,000 to set up a temporary location and an additional $470,000 to renovate the current space.

Waiting for life

Ms. Coleman-Thomas was placed on the waiting list for a kidney transplant in January of 2014. She has a travel bag packed, and a plan to get to the Beth Israel Deaconess Medical Center within 2.5 hours of the call telling her a donor kidney is available. Her first option is a Medflight helicopter.

“That makes me more nervous than the surgery,” she said.

Most healthy people with good kidney function can donate a kidney, and live a completely normal life following the donation surgery. But most of the members of Ms. Coleman-Thomas’s family also have polycystic kidney disease, so they are not candidates for a living organ donation. The few who do not have the disease, including her son, were tested and ruled incompatible. Her son is in the process of a living kidney donation that will go to someone else on the waiting list. Her son’s donation will give Ms. Coleman-Thomas an extra factor weighing in her favor when she is being evaluated for a donor kidney.

The experience has turned Ms. Coleman-Thomas into an advocate for organ donation.

“People need to be aware, if you don’t get a kidney, you are on dialysis the rest of your life,” she said. “Donating a kidney is giving someone a life. People are in dire need.”

How it works

The Organ Procurement and Transplant Network, created by an act of Congress in 1984, is responsible for maintaining a list of people in the United States who need organ transplants. Getting on the list requires a referral from a doctor, and an evaluation by the medical staff of a hospital that performs transplants. Recipients must be cancer-free and free of any infections. If doctors agree that a patient is a good candidate for a transplant, they will place the patient on the transplant list.

If a kidney becomes available when someone who previously designated themselves an organ donor dies, time is essential. The donor kidney is evaluated, and registered on the transplant network. In a matter of seconds, the computer produces a list of people waiting for a kidney transplant, who may be a candidate for the donor kidney. The computer analyzes blood type, tissue type, size of the organ, medical urgency of the patient, time on the waiting list, and distance between donor and recipient. The person who best matches all the criteria is offered the donor kidney. Ethnicity, gender, religion, and financial status are not considered when matching a donor to a recipient.

Often the first person on the list may not be able to accept the transplant. The patient must be available, healthy, and willing to undergo transplant surgery immediately. If the first person cannot accept the donor kidney, the next person on the list is offered the transplant.

Although it is not necessary to be related, or even know, a living donor, usually a family member becomes a donor for a relative who needs a transplant. Approximately 6,000 living donor transplants are successful every year. There are roughly twice as many deceased donor transplants as living donor transplants.

The first step in the process of a living organ donation is to contact a transplant center. There are 15 transplant centers in New England which perform kidney transplants, nine of them are in Massachusetts, and one is in Rhode Island.

Residents can get information and register to become an organ donor at any Massachusetts Department of Motor Vehicles office.