Email Newsletter

Email Newsletter
Join our Illinois Valley Living email list.
The Holiday Gift Auction is Live! Click here and bid now on great local gifts!
People

A gift of life

Princeton woman tells about her rare disease that left her unable to eat food for six years

Jamie Pennington
Jamie Pennington

Jamie Pennington was just like any other mother and wife who enjoyed spending time with family and friends, participating in church and community activities and sitting down to a hot meal with her husband and three kids.

But that all changed in 2009 when the Princeton woman came down with a serious, unexplained gastrointestinal illness, which left her nauseous, weak and unable to keep anything in her stomach.

While doctors struggled to find answers for Pennington, she went from weighing a healthy 145 pounds to just 88 pounds. She was put on numerous medications to relieve her symptoms but was met with no luck.

A year later, test results finally pinpointed a diagnosis, which was Gastroparesis, an incurable disease where the stomach becomes paralyzed and unable to process food. Because she had gone so long without corrective medication, Pennington had also developed gastrointestinal dysmotility, where her intestines also stopped functioning.

In order to maintain her nutrition, she had feeding tubes placed in her nose and directly into her intestines. She later was sent to Chicago to have a gastric pacemaker put in to help stimulate her stomach.

"It worked for about a month but then stopped. I was throwing up four to six times a day — easily," she said.

Her illness came on more aggressively, and her stomach became so sensitive it could no longer handle her body's bile and saliva. So doctors had to place a gastrostomy tube into her stomach to help drain the contents.

Throughout the next three years, Pennington's life revolved around emergency room visits, chest tubes, feeding tubes, blood infections, hospitalizations, severe allergic reactions and even a close call to death, that left her wondering if she'd live through the day.

She became so sickly and fragile that even climbing the stairs to take a shower or wash her hair turned into a task she could no longer do on her own.

Finally in 2014, Pennington underwent a risky surgery to remove her entire small intestine and most of the large intestine at Cleveland Clinic in Ohio.

"It helped in some ways, but made things worse in other ways," she said.

That left her with a last resort answer for a cure — a small intestine transplant.

After meeting with a team of doctors who put forward this final option, she and her family were given just over two weeks to pick-up and temporarily move to Cleveland, while she enrolled as a candidate for the transplant.

The enrollment process certainly didn't happen overnight. As Pennington's health continued to decline, she held on while a board of doctors agreed to the surgery and her case was sent on to the Ohio Solid Organ Transplantation Consortium, which would give her the final say for a second chance at a normal life.

Not only did those meetings take time, but the consortium required a plethora of details before they gave her their thumbs up.

"It was hard … You're anxious wondering if it really is going to happen? Or are you going back home," she recalls. "I never realized what was all involved in a transplant."

Doctors wanted to be sure the surgery would be the best opinion for Pennington. Intestinal transplant surgeries are classified as one of the most risky and complex. A new intestine also has a higher chance of being rejected because of the organ's bacteria.

But on June 5, 2015 — two months later — Pennington received news she had been officially listed on the nationwide organ search list and was give a maximum three-week wait.

She pointed out how the wait for a small intestine is much shorted than someone waiting for a heart or lung, This is because intestinal transplants are rare, making the demand for the organ much lower.

It didn't even take 24 hours before Pennington was getting the call from the transplant team telling her they'd found a match. At 8 p.m. that evening, she was wheeled into a surgery that would take more than 14 hours to complete.

Upon waking up from the procedure, Pennington can still remember feeling like she'd awoke in her normal, healthy body.

"I could tell a difference right away in my whole system, and I wasn't even eating yet at that point. I can't explain it, but I felt totally like I was back to myself," she said.

That day, she enjoyed her first meal in six years.

"I compare it to a kid in a candy shop," she said.

The food was turkey, steamed spinach, angel food cake and peaches in a can. The moment was so huge for her and her husband, that they Face-timed their children, who were back home staying with family. That evening is still cherished today as they can recall many tears and smiles while watching their mother enjoy food once again.

Within a week, Pennington was walking distances she could have never gone before, and her pace was picking up, too. Her recovery went so well she was sent home only two weeks after her surgery.

Today, Pennington remains happy, healthy and grateful for the little things —álike enjoying a meal with her family.

"I'm forever grateful to God, to my donor, to my donor's family and for the opportunity I've been given at the gift of life. I'm thankful there are still caring people in the world," she said. "I enjoy having my life back ... I'm one very blessed person and so thankful for the miracle."

While there is still a possibility the intestine could be rejected by her body, Pennington lives her life not dwelling on those chances. Instead, she takes it day-by-day and relishes the good times spent with family, friends and church members.

Follow Pennington's story online

Pennington has written a blog called, In His Hands, which is about her experience with Gastroparesis and her intestinal transplant. Readers can follow her at www.penningtontree.blogspot.com.

Your donation can make a difference

The average intestine transplant costs around $1 million. And that’s only the beginning. Although her insurance will cover a portion of the costs, Pennington still faces significant expenses related to the surgery.

For the rest of her life, she will need follow-up care and daily anti-rejection medications, which are as critical to her survival as the transplant itself. When she received her transplant, Pennington temporarily relocated nearly 450 miles from her home to be near the Cleveland Clinic during recovery, incurring substantial expenses for travel, food and lodging.

You can help by making a tax-deductible donation to National Foundation for Transplants (NFT) in honor of Jamie Pennington. You can send a gift by mail to the NFT Illinois Transplant Fund, 5350 Poplar Ave., Suite 430, Memphis, TN 38119. Please be sure to write "in honor of Jamie Pennington" on the memo line. Or you can donate online. Visit the National Foundation for Transplant website. Search Jamie Pennington under "find a living donor" tab and click donate now.

Loading more