Organ transplants in Maine more than a financial struggle

By Kendra Caruso | Sep 20, 2019
Photo by: Kendra Caruso Carrie Klein prepares for her home dialysis treatment Sept. 6.

Waterville — Carrie Klein learned that she needed a kidney transplant last spring after experiencing swelling in her ankles.

Sitting in the doctor’s office in Bangor, the former Unity resident didn’t fully understand the health implications of the diagnosis. She initially told her employer she would return in a couple of days, but she never went back.

The diagnosis later dropped on her like a sandbag. Klein thought it was a death knell, and found little reassurance in reading about the diagnosis. However, she quickly learned that if she planned to fight kidney disease, she needed to have hope.

“If you don’t give people hope — I can see how some people give up,” Klein said. “A positive attitude is everything and people keep telling me my positive attitude will get me through this. So, I have to believe that, and it will.”

She has had to learn how to put her pride aside and accept help from friends and family. She said it is awkward for her to take cash donations but said she knows she’ll need the money.

She currently does dialysis at home while waiting for a kidney match. Her home dialysis is an all-day commitment. Klein can’t work and she can’t go too far from home. But if she can successfully maintain the at-home routine, she will become eligible for an overnight machine.

Hobbies, like photography, have gone by the wayside as she is in a constant state of preparation for four treatments every day.

Each treatment requires her to empty her kidneys through a catheter for 20 minutes, then fill her kidneys with medicated liquid and wait 1 ½ hours. Then, another 20 minutes to empty the medication. None of those steps include preparation time.

Klein said she starts the routine at about 8 a.m. and hopes to end by 5 p.m. The last treatment of the day is the worst, she said. Doctors instructed her to wiggle and do light jumps to remove all of the medicated liquid from her kidneys; sometimes the pain is too excruciating, she said.

But that is nothing compared to the energy depletion she felt after hemodialysis treatments three days per week in the hospital. She remembers getting home and sleeping off the treatment every time.

She is not certain how much her kidneys are functioning but doesn’t think it matters much anymore because of how advanced the disease is — she needs a kidney no matter what.

A family member is going through the kidney donation process. Unfortunately, she is not a direct match for Klein, but there are established exchange programs that pair living donors with kidney matches. Exchanges can involve many people.

The majority of organ donations come from deceased donors. In 2018 10,721 organ donations came from deceased donors and 6,848 from living donors in the United States, according to the U.S. Department of Health and Human Services (DHHS).

But many factors are weighed in the approval process for organ donation, including mental and physical health.

Klein considers herself lucky to have the insurance she does. Without it, she already would have racked up large medical debts and it might have prolonged the organ donation process. She said she doesn’t know how others without insurance would cope.

“What else do people do?” Klein said. “Hopefully people qualify for stuff and are helped.”

After her deductible, her insurance covers all of her bills while admitted in the hospital. She has a copay for appointments. Once she is matched with an approved donor, insurance  will cover 100% of the medical costs associated with the transplant for both of them.

Kidneys are, by far, the most-needed organ for transplants. Of 123,945 people in need of organ donations in the U.S., 102,782 need a kidney, according to DHHS. But organ donation can be slowed by policy and geographic location.

A journey to 'breathedom' — at a cost

Valarie Hale needs a double lung transplant because of a genetic disease, and has been on the transplant list since July 2016. She moved to Southern Maine from Knox County because she needs to be near transportation services that will get her to a Massachusetts transplant center, or by helicopter to Ohio, where she is also listed.

“To be actively listed, you have to be within so much time to get to the hospital,” Hale said. “And when I come up to visit, I can’t go more than three hours from the hospital. So, like, I can’t go to Belfast anymore, or up to Unity to see family, because I need to be close to (Route) 95.”

Ohio has a program that allows its hospitals to accept appropriate transplant candidates from outside the area. The state had the fifth-highest deceased donor rate in 2018, according to DHHS.

The Cleveland Clinic Respiratory Institute where Hale is listed has an average lung donation wait-time of 3 ½ months, according to its website.

Organ donor and transplant recipients are listed within 11 regions in the United States, including Puerto Rico.

Maine and the New England states, except Vermont, are in Region One on the DHHS website. Maine has only one transplant location, in Portland, and the medical center performs only kidney transplants. There is no organ donation center in the state — the closest is New England Donor Service in Waltham, Mass.

This limits both where organ recipients can live in Maine and how many organs are donated. There is a limited window within which an organ can be donated, and if a deceased donor is too far from an organ procurement center, then the organ isn't viable for transplant, Hale said.

In 2018, Maine had the second-lowest deceased donor transplant rate and the 11th-lowest living donor transplant rate in the U.S., according to DHHS. Region One has the fourth-highest rate for wait-listed people per 1,000 residents, according to calculations based on data from DHHS and the U.S. Census Bureau.

A kidney transplant recipient through the Maine transplant program is evaluated on a point system that determines need. A person without a living donor can expect to wait several years for a transplant, according to Maine Medical Center’s website.

It also takes a while for people to save money for transplant surgery. Hale said she must save $8,000 for a helicopter ride to Ohio and $15,000 for post-operational costs. She will have to stay in Ohio or Boston for up to six weeks after the transplant. Right now she goes to Boston every six weeks for appointments.

She has raised $7,000 through a GoFundMe page but had to spend $2,700 of that for a recent Ohio trip. To offset more of the expected costs, she is selling cookbooks. Her community is holding bake sales and benefit dinners. She said she expects to use credit cards to pay for expenses that are not covered by those efforts.

The Cleveland Clinic has turned people away because of financial situations — so she has a lot at risk if her finances aren’t in order. But she knows it will all be worth it when she can help other people, in some way, with their transplant journey.

“It’s been a hard and emotional road to transplant,” Hale said. “But thankfully, with the support of my community and my family, I made it here, and I’m at 9% lung function and looking forward to what I call my journey to breathedom — the freedom to breathe.”

Volunteer kidney donor information can be found at mmc.donorscreen.org. Other organ donor information can be found at neds.org.

Editor's note: This story has been updated from its original version.

 

Information from the U.S. Department of Health and Human Services website. U.S. outline image developed by vecteezy.com. (Photo by: Kendra Caruso)
Carrie Klein remains hopeful for a kidney treatment while doing home dialysis Sept. 6. (Photo by: Kendra Caruso)
Devices and measurements laid out for Carrie Klein's home dialysis Sept. 6. (Photo by: Kendra Caruso)
Carrie Klein waits for her home dialysis treatment to end Sept. 6. (Photo by: Kendra Caruso)
Carrie Klein prepares for the next phase of her home dialysis treatment Sept. 6. (Photo by: Kendra Caruso)
Carrie Klein waits in her home for the dialysis treatment liquid to drain from her kidneys Sept. 6. (Photo by: Kendra Caruso)
Comments (8)
Posted by: Dennis Corkum | Sep 23, 2019 21:20

Again, it is not the donor who could be on medications the rest of their lives.  The recipient will be but donors live normal lives.  The powers that be of this publication refuse to believe this.  I have asked them to get medical confirmation and I have a request in to the transplant department at Lahey Hospital in Burlington MA where our transplants were performed to support my stand.



Posted by: Katherine Holland | Sep 23, 2019 07:59

Dear Carrie - I have had a kidney transplant for 10 years now courtesy of a fabulous friend and living donor, and my donor has not had to take any medications as a result of donating a kidney in all of that time. She is fine and living a full and normal life. I agree that the donor needs protection and care, but that is normally just during the time s/he is in the hospital to make the donation and the time afterwards to make sure that s/he has recovered fully from the surgery. Moreover, the surgery in my donor's case was done laparoscopically, so her recovery was relatively quick. It's really a miraculous process these days, and no one should be scared away from donating for fear of having their lives changed for the worse. I hope that a paired kidney transplant works out for you and your wonderful family member!



Posted by: Dennis Corkum | Sep 20, 2019 17:13

Just wanted to get everyone's attention. This is a very important issue. You don't understand until it happens to you .



Posted by: Francis Mazzeo, Jr. | Sep 20, 2019 15:13

You don't need to yell,Dennis.



Posted by: Nina Reed | Sep 20, 2019 09:49

i recieved from a living donor and they didnt take any meds before or after. patricia williams



Posted by: Nina Reed | Sep 20, 2019 09:48

i recieved from a living donor and they didnt take any meds before or after. patricia williams



Posted by: Dennis Corkum | Sep 20, 2019 08:44

Living donors DO NOT HAVE TO BE ON MEDICATIONS THE REST OF THEIR LIVES!!  We are very familiar with the process having been through a liver and two kidney transplants (the last from a living donor).  The donors live normal lives afterward.  They are wonderful people, don't scare them away.

 



Posted by: Nina Reed | Sep 20, 2019 08:15

carrie, i wish you all the luck getting a new kidney. i had a transplant 38 years ago and still have it. i had to make the trip to portland 33 days a week for dialysis. i have been very fortunate. patricia williams



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