Avenue of hope Neighbors needing transplants share goals, challenges, friendship
MARC ANTHONY Review Correspondent
, Staff Writer
In a fast-paced world where technology is changing the way we live our lives on what seems like a daily basis, it’s easy to forget what neighborhoods used to feel like.
There is a fine example of the old-fashioned "Social network" right here in Ephrata. In a tiny enclave of the Victorian Manor Estates lives a small and resilient group of folks who are borrowing on the past and hoping for a brighter future.
Boxes full of crocheted items sit in the corner of Thor and Patty Foss’ living room as Thor talks about showing his work at an upcoming craft show with friends Diane Major and Pat Simmons. The boxes taking up space in their kitchen have a wholly different purpose. The 69-year-old has spent the last three-and-a-half years on the waiting list for a kidney.
Thor has a dietitian and a nutritionist he checks in with regularly. He also meets with a dialysis coordinator since he is doing peritoneal (home) dialysis. The process involves potassium and protein bags, as well as making sure no fibers enter his tubing, which could cause infection.
"But I prefer staying home rather than going back and forth, and no needles involved."
Life hasn’t been easy for Thor since he was first diagnosed with kidney failure. He’s suffered acute renal failure. He had a quintuple bypass one year ago last March when doctors discovered his arteries were delivering little to no blood flow to his heart. Last year, he was diagnosed with Peritonitis – an inflammation of the abdominal wall after stomach pains landed him in the ER. And just recently, his driver’s license was suspended after he passed out at the wheel.
"I just blacked out. I had to see a neurologist for an epilepsy test, and thankfully nothing was found to be wrong, but it will be a while before I’m back on the road." Thor said.
His wife Patty is in the beginning stages of Alzheimer’s and is no longer able to operate a motor vehicle so the couple relies on the goodwill of others to get around. A neighbor’s daughter helps with groceries and Red Rose shuttles Thor to his checkups. And while Thor may not be driving, he still has wheels.
"I’m always amazed at what Thor brings home on his bike," said neighbor Simmons. "I see him riding along with pies from an Amish stand or groceries … all times of year."
Back surgery has canceled Simmons out as far as helping Thor with transportation, but her contributions go far beyond this.
"Pat is the overseer of our group (of neighbors)," as friend Diane Major puts it. "She’s always checking in with us, making sure we’re alright."
It has been four years since Diane learned she was suffering from liver disease as the result of having contracted Hepatitis C. She traced her exposure back to a dentist visit she took while her husband was working as headmaster at a school in Belo Horizonte, Brazil. The disease lay dormant for more than 15 years before she began experiencing symptoms.
"I was working as a restaurant manager. I didn’t really think anything of the fact that I was feeling tired, since it comes with the job. It wasn’t until I was working the register one day and I couldn’t figure out the change. That’s when I knew something was wrong."
The serious nature of her symptoms would soon be revealed and it became clear she wouldn’t be able to continue working as a result.
"I started breaking down, everything was going wrong at once. That’s when they discovered my liver was in bad shape. From that point, it was one test after another and I was on all kinds of medication."
She is on a schedule that includes five different medications, to be taken at specific times of the day without fail. She has to keep close tabs on her sodium intake – no more than 2000 mg daily. Not easy for a New England girl who grew up on "lobstah" with all the trimmings. Her body will begin shaking when her protein levels drop, and supplements help replenish the nutrients her body is not receiving.
"Your liver acts as a filter for basically everything and when it’s not working properly, you know it."
A compromised filtration system makes her prone to high ammonia levels, which can result in a jaundiced appearance and affect brain function if left untreated. Her blood pressure tends to range very low and this affects her mood, appetite and energy level. Once it dropped to 30 and she almost died.
Diane also takes an EGD, which looks for tears in her esophageal lining. This monthly visit came about as a result of a trip she took last Christmas to see her family. Her stomach became distended as the result of fluid seepage and doctors had to cauterize the leak.
Add to this her MELD score, which fluctuates between 12 and 16. The test measures the severity of cirrhosis using three different blood tests. Anything over 20 requires the patient to be fast tracked.
"Thor and Diane are such different personalities, but they share a common goal," said Simmons. Actually, they share a lot more than that.
As transplant candidates, they both understand there are no small details. They must pay keen attention to potassium, sodium, protein and phosphorous levels. They must keep meticulous records. They must keep in constant contact with their coordinators and specialists. They both have O negative blood- an easy blood type when it comes to giving, but much harder to find.
While it is always preferable to have a family member as the donor, Thor’s wife Patty is unable since she had one kidney removed after a cancerous polyp was found. Diane’s son Christopher took a month’s leave from the Air Force in order to come home and donate a partial liver, but he wasn’t a match. Her sister also tried but tests canceled her out as well.
Adversity isn’t their only common thread, however. Both are happily married. Diane and her husband Bill are going on 30 years together while Thor and Patty recently celebrated their 35th anniversary. Thor and Patty would love to travel the world again, the way they did back when they worked as ticket agents at US Airways. Diane and Bill wouldn’t mind going back to Puerto Rico or some other warm weather climate.
Diane would love to get back to New England too. While Thor would really love to get back to Shady Maple smorgasbord. It’s the simple things that help get them through the complicated hours. For today, Thor will do some crocheting and Diane will help her next-door neighbor Dave by walking his dog since he’s on a ventilator and lives alone.
As the de facto chairperson of this support group, Pat is right where she belongs. Raised in Reading by adoptive parents, she only re-connected with her family three years ago. The experience provided an education she has put to good use in helping her friends and neighbors.
"I met my brother when he was a shadow of his former self. He had been involved in a near fatal collision and was down to 170 pounds. And he was going through dialysis – which he hated – as a result of having been exposed to Agent Orange during Vietnam. I learned the process and the protocols involved with these diseases. You have to be educated."
Pat’s role brings peace to the most trying of days, Diane said.
"So many people are waiting for a transplant, but I am hopeful," she said. "Maybe this story helps us, maybe it helps someone else and maybe it convinces someone to become a donor."
In a Facebook world where the quantity of followers trumps the quality and peace of mind that comes with knowing your neighbors, it’s nice to find a place where the most important things still matter this much.
"We were brought up to appreciate the value of giving back, and helping out wherever you can," said Pat. "Taking care of each other is the way the world works for us."
A like button cannot take the place of that.