Standing Strong: New Orleans veteran fights war against her body

Standing Strong: New Orleans veteran fights war against her body

NEW ORLEANS, LA (WVUE) - A New Orleans woman who spent years caring for the sickest of the sick and even served her country during the Persian Gulf War is in another battle. This one is to save her life.

"That's my actual dog tag from when I was in Baghdad," said Michelle Johnson, as she pointed to a photo album filled with pictures from her Middle East deployment.

"All Iraq pictures, I'm somewhere in the first row in Iraq," she said.

"Yeah, a lot has changed," stated Johnson as she looked at a picture of herself in uniform.

She never could have imagined how much her life would change.

"This kills me. This, it gets caught on everything," said Johnson who was tethered to a 100 foot oxygen tube that wound its way through her New Orleans area home. Her health has come under siege.

"It just seemed like I just had a bad cough for a long time," she said.

Johnson knew not to ignore the dry cough. She is a registered nurse who was often recognized for her nursing skills.

"And when I see how healthy I looked, it makes you think the things you take for granted," she said.

Even in 2008 her body was speaking.

"I had had problems in 2004 and 2005 and they kept saying it was bronchitis and I just kept coughing all the time. In 2005 I started having this shortness of breath. So by 2007 the pulmonary doctor decided let's do a biopsy," Johnson said.

Her diagnosis was not good.

"They call it idiopathic pulmonary fibrosis," she stated.

It is a disease that ravages the lungs, replacing elasticity with thick, stiff tissue that acts like a roadblock for oxygen trying to move to the bloodstream.

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

According to the National Institutes of Health the normal survival rate is three to five years after diagnosis.

Johnson has surpassed that, still talk of longevity is tempered.

"There is no cure and that a transplant would be the ultimate care. That's an option for you, but it still isn't a cure for me…It's still something that I am wrestling with," she said in between coughs.

For the once intensive care nurse, challenges are nothing new.

She joined the Air National Guard in 1988.

"I went in primarily for college to pay for my college education, for nursing school and whatever else. But I ended up loving the people and it was like a different family," she said.

And during the Gulf War she was wearing the Air Force uniform.

"My last deployment unfortunately, Iraq, was not my favorite. 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," she said.

And now she finds herself at war with her own body.

"This is the third hospital because originally I went through the VA," stated Johnson.

She said her complications were not a good match for the VA hospital. She was sent to the mid-west, so she tried a local hospital known for organ transplant successes.

"Again worked me up, test after test, and yes I was a candidate. Yes we need to get you on the transplant list but because you have other issues, we can't accommodate you here. My heart has now become a problem because of the lungs. So I'm in heart failure now," she said.

Johnson was urged to take her pursuit of new lungs and a new heart to a renowned Texas transplant center, Houston Methodist J.C. Walter Transplant Center.

"A very tall order. A very tall order, but it's still an order that can happen. It can be filled," she said of the thought of a triple organ transplant occurring at the same time.

"So this is a typical X-ray of somebody with pulmonary fibrosis," said Dr. Scott Scheinin, Director of the Lung Transplant Program at Houston Methodist Hospital, as he pointed to x-rays and cat scans.

"The different white patches that we see throughout the lung are the scarring of the lung tissue itself," he said.

It is a disease mired in mystery.

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

Still there is something he is certain of in terms of responding to IPF.

"Lung transplant is a good option for it," Scheinin stated.

Johnson said in November the hospital gave her the news she had been praying for, for months.

"I got a call and said we, we have accepted you, and all your problems, and all your other risks," she said.

Dr. Scheinin said transplants due to the disease are very common.

"The most difficult part typically involves removing the old organs," he stated.

While Johnson said she has been accepted into the hospital's transplantation program, she is not officially on the list for new organs.

There is another hurdle to cross.

On the very day New Orleans will celebrate Mardi Gras, Johnson is to be in Houston for a heart biopsy.

"When I originally went, I went with my head held low thinking this was, this was it, you know. Nobody can help me. I'm just going to have to live out my life until this thing knocks me out," she said.

Recently at Jackson Barracks in New Orleans, military colleagues, family and friends held a fundraiser for Johnson.

Eventually Johnson must relocate to Houston along with an around the clock caretaker to be in a position for the multiple organ transplantation she seeks.

Even though she has medical insurance, she has been told to prepare for exorbitant out-of-pocket expenses in the tens of thousands of dollars. And that will not cover the entirety of post operative expenses.

"I worked with her for about 18 years and Michelle is always a good person, always there for others and we just wanted to return the favor to her," said Sr. Master Sgt. Shannon Mason during the fundraiser.

"She's gotten a bit weaker and lost tremendous amount of weight. Compared to the pictures when she was in the military, she does look a little pale," said Vera Perkins, Johnson's mother who is helping her daughter with grocery shopping and home maintenance.

And as a single, and fiercely independent woman, now being on the receiving end is difficult for Johnson who is known as someone with a big heart.

"[I] bought everything. I don't need you to buy me a gift. I can buy my own gifts. You know I was always that person. I can buy my own house. Now even to clean my house I have to ask for help and it's hard," she reflected.

And with oxygen in tow, she still reports to her job at the VA in New Orleans. While she is no longer able to work in a hospital setting, her current work as a case manager for cancer patients is just as vital.

"Every day that I open my eyes and I get up I say Lord, it's you and me today. Help me do it. And we always make a deal. You get me to the car, I'll get to work," said Johnson.

And in 2012, the master sergeant obeyed the command of her weakening body and retired. Hanging up her fatigues for good.

"Carrying a gun, carrying equipment for chemical warfare, it just got to be too difficult," she said.

Still with fervor she continues to seek answers to why she is confronting a potentially deadly sickness.

"They're back and forth. One doctor said it's a possibility that you may have been exposed to something when you were on your deployments in the Middle East. Pollutants, sand, jet fuel. There were burn pits there in Baghdad that we were constantly around, but they're not definitive on it. More so, I think because they don't have enough literature and I know the VA is working on that now," she said.

"Environmental exposures and that's certainly is another cause of pulmonary fibrosis. People that have had exposures to chemicals, or other toxins that can cause scarring of the lung as well. But again this entity, 'idiopathic' is just like you said, we don't know what triggers it or what brings it on," stated Dr. Scheinin.

And when asked whether she gets down about her situation she answered,

"Anger used to come in the beginning. It sprouts its ugly head every now and then, but when I feel despair or depression coming along then I surround myself around people who are strong in faith."

The type of faith she said she can couple with her own confidence that healthy organs are in her future.

"It's not pie in the sky. It ain't gonna work, you know. You're going to die before they even get you. I don't believe that. I can't believe it," said Johnson.

A fund has been set up to help Johnson with current and future medical expenses.

To donate, go to:

The VA has a section on its website dedicated to particulate pollution in Iraq and Afghanistan and states that it continues to study the health of deployed veterans. And veterans can file claims for disability compensation for health problems they believe are related to sand, dust, and particulate exposure during military service.

The VA says it decides claims on a case-by-case basis.

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