Iraq vet facing deadly disease gets a gift of life - FOX 8 WVUE New Orleans News, Weather, Sports, Social

Iraq vet facing deadly disease gets a gift of life

With a new heart and a pair of new lungs Michelle Johnson can once again think about the future. (FOX 8 Photo) With a new heart and a pair of new lungs Michelle Johnson can once again think about the future. (FOX 8 Photo)
NEW ORLEANS, LA (WVUE) -

For a woman who served her country in uniform and then found herself at war with her body, this holiday season takes on new meaning.

When we first spoke to Michelle Johnson in February, her days involved navigating around a 100-foot oxygen tank tube in her home, and riding portable tanks on the back of a scooter when she left home.

"This kills me, this it gets caught on everything,” she said of the tubing at the time.

A life-threatening disease had taken hold.

"Once the inflammatory process is over it leaves scar tissue to the lungs, so basically my lung is one big hard scab,” said Johnson.

But she would not cower in the face of a new challenge. 

"That's my actual dog tag from when I was in Baghdad,” Johnson said as reminisced about serving in the Air National Guard. 

She had confronted fear on foreign soil.

"There were bombings, you know you'd have to go in your tent and put on a helmet and a flack vest and pray you just died in your sleep,” Johnson said.

She returned home with a bad cough, and soon her body was at war with a mysterious disease that attacks vital organs.

"Idiopathic pulmonary fibrosis is a progressive scarring of the lungs from a cause that we don't necessarily understand or know,” said Dr. Scott Scheinin with Houston Methodist Hospital.

As a registered nurse, Johnson’s care of the critically ill had earned her accolades before the devastating illness invaded her body. Not only would she need a double lung transplant, but also someone else’s heart.

On April 3, Johnson, who had temporarily relocated to Texas for treatment, got the phone call she had prayed months for from Houston Methodist Hospital, a medical facility known for organ transplants.

"My sister was like running all over the place, like what to do, what to do? I said get the keys, so I was excited, I was anxious, nervous,” Johnson said.

Life-sustaining organs were available sooner than she had expected.

"And then Good Friday, it was a Good Friday that I had the surgery,” she said while seated in her New Orleans-area home.

It was a nearly 10-hour operation to take out the scarred organs and replace them with new ones.

"When I finally came to, I kept saying, 'when is this surgery going to happen?' And my sister whispered in my ear, 'feel around.' Although my hands were tied, I could feel tubes. She said, 'you've had the surgery. You're up now.' I was feeling a lot better than I was,” Johnson said.

Housed inside her petite frame - a second chance at life.

"I have incisions on either side here, and I have one big one here where they went in,” she said pointing to her chest.

But the surgery was not as invasive as some might think.

"They lifted the rib cage up and they were able to tuck the heart, do the heart and the lungs by tucking, so they didn't really break anything, they didn't have to crack ribs, they didn't have to go in with a saw,” she said.

Only weeks ago, Johnson returned to work a local Veterans Administration medical facility as a case manager for cancer patients. When the illness progressed, she could no longer work in a hospital setting. Even though she smiles readily and enjoys being back at work, her immune system still must catch up.

"I do have to be careful when I'm around crowds of people, and I do where my mask,” she said.

On a good day, 20 pills await her.

"Anti-rejection Take it twice a day,” she said while holding a handful of pills.

And there are some limitations.

"Still having complications with eating, and I still have a tube in my stomach where I still get tube feeding,” she said.

A potent drug regimen that has thinned her once-full head of curly hair. For Johnson, it is a small price given the precious gifts she received.

"I got my organs from the same donor. I know nothing about the person, whether they were male or female. The only thing they told me about the individual is that they were younger than me, so I'm hoping I got some 30-year-old organs, you know, for this 51-year-old chick,” she said with a smile.

She is not allowed to meet the donor’s family for a year out of respect for their grief. Still, gratitude already wells up in her words.

"I would love the family to know the contribution, the decision to donate organs was such a tremendous thing, and it really, it really gave me a new start. It really did, and my whole family is really grateful for that,” she said, choking up.

And she has advice for others who may be faced with daunting medical challenges.

"Keep hope, you have to keep hoping, you cannot give up,” she said.

As her mother sat next to her, Johnson referred to her as a rock of support.

"She thinks that what she does is small, but it's monumental,” she said.

A pre-surgery fundraiser at Jackson Barracks by military friends and the generosity of complete strangers who learned of Johnson’s plight lessened her post-op financial burden.

"In the hundreds of thousands, so with this my insurance was able to get the bulk of it, but the fundraising helped so I wouldn't go in debt and to possibly lose your house, you know,” she said of the medical expenses.

While Johnson links her time in the war zone to her medical problems, the VA continues to investigate.

"I'm still fighting that battle with the VA, still hoping to get some service connection because this is an ongoing thing even though I have the organs,” she said.

But that does not dominate her thoughts. After all, this year she is witnessing a holiday season without oxygen tanks.

"It was just something I had to do for renewal, you know, it was just a renewed spirit, renewed strength,” Johnson said while standing next to her beautifully decorated Christmas tree.

With a new heart and a pair of new lungs she can once again think about the future.

Johnson makes monthly trips back to Houston for medical checkups.  She moved back to the New Orleans area in August.  Because of her illness, she retired from the national guard in 2012 as a master sergeant.

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