Fighting The Expiration Date On My Lungs!

Have you ever had food in your fridge that you bought, intended to eat, forgot about, and then raced to use it before it expired? I'm sure all of us have done that at some point. Some of us probably don't make it, just throw it out and go out and buy more. It's a quick trip to the store and a few dollars from our wallets to replace what expired and was no longer viable to consume.

Simple enough right?!

It's bad for us, gross, no longer needed; so just toss it and replace it.

But what do we do when a body part of ours is reaching expiration and is no longer good for us?

It's not as simple as tossing it and replacing it.

Some may think that's a horrible analogy because body parts are body parts and food is food, but I needed to get you in a place where you can picture that for the story I'm about to tell!

Ashley is a beautiful and fierce woman of God. She's a wife. She's a mama of 3 beautiful and bright children. She's a photographer & business owner. She's a daughter. She's a best friend (mine). She's a friend. She is a granddaughter. A niece. A cousin. She is so much to so many.

We all want her here with us as long as possible.

The fall season is usually the busiest season for photographers, much like January to April is busy for tax preparers and accountants. Between family fall sessions, weddings, and families getting Christmas photos done for family and friends it is slammed. You don't have time to sleep, eat and breathe it feels like; let alone be sick.

December 2013 was just like any other fall season Ashley (and her husband Brad who co-shoots weddings with her) had had in the past. Her weekends were booked solid from September to December. She had so much to shoot. She had so much to edit and get out to the anxiously awaiting families for the holidays. Life was running at break-neck speeds.

The cough that had cropped up out of nowhere in November went from being a nuisance to being a life or death situation in December.

December 8th Ashley and Brad shot a beautiful wedding. They came home to find their oldest daughter sick. She fought flu-like symptoms with fever before landing in the Duke's ER the next day. By December 10th they were back in the ER because their daughter Trinity was running a fever of 104 and had a cough, but walked away again without a definitive diagnosis. At this particular moment in time, Ashley began to feel horrible. On their way home they made a quick trip to the pharmacy to grab Trinity's prescriptions and to snag some OTC cold & cough meds for Ashley. They followed up with Trinity's primary doctor the following day and came home and crashed.

Sleep is such a welcomed friend when we are sick and feeling like death warmed over twice.

Ashley took some OTC Sudafed and settled in to sleep off whatever was making her feel so horrible.

When she woke the next morning she couldn't breathe. Her cough was uncontrollable at this point and vomiting set in. She felt as if her chest was going to cave in. Brad rushed her to the local ER in Burlington and dropped her off so he could take their sick daughters to the doctor. While Ashley was being attended to at the ER, her girls were testing positive for the flu at their primary care doctor.

The doctors did a chest x-ray on Ashley to see if they could see anything going on, but the chest x-ray was clear. From there they decided to do an abdominal CT scan to see if it showed anything at all. What the CT scan revealed was an extremely bad case of pneumonia. The ER told her they would be admitting her for a few days and they moved her into the hallway to make way for the incoming traumas.

Ashley needed to call Brad and let him know what was going on with her and to find out what the doctors said about their girls.

That was the last thing she remembered!

It was this moment that the nagging cough became a death sentence.

After they moved her to a regular room at the hospital she rapidly declined and they immediately rushed her to the ICU floor where she was put on a Bi-Pap machine because oxygen alone was not longer helping. Repeat x-rays revealed that her lungs were completely white. Everything they had been doing to treat the pneumonia up to this point wasn't helping.

Ashley was now in a coma.

Tough decisions hung in the air, thick, like smoke.

Her life was on the line.

They decided to try a lung biopsy in hopes that it would reveal answers as to why she was so sick and declining at the speed of light. Upon entering the OR she crashed. With her saturations in the 40's, her heart rate even lower, and a blood pressure that bottomed out she was extremely critical. The medical staff were doing what they could to try and stabilize her. While they were trying to save her life, the doctors were meeting with the family in the tiniest of rooms outside the ICU to talk to them about the seriousness of what was happening. While Ashley was fighting for her life in the ICU, her mama was also admitted in the ER for a MRSA infection and lung disease. This was so serious that they went and got her mama from her room and brought her up to the family room to help make the tough decisions for Ashley.

The only way to save her life was to transport her to another hospital 30 minutes away. Going by ambulance wasn't an option because time was literally of the essence. She was unstable and against all the normal protocols they put her in a helicopter and life-flighted her to UNC.

Eight minutes in flight vs. thirty minutes in an ambulance.

It took her body 8 minutes to decide it was done. The moment the helicopter landed she crashed and the doctors scrambled to get her straight in the OR and hooked up to ECMO. (For those of you who don't have your medical licence via Google & WebMD, ECMO stands for Extracorporeal Membrane Oxygenation. Essentially it is a heart and lung bypass support. The blood from your sick body is put through this machine to be cleaned and oxygenated and then it is pumped back into the body.)

ECMO is basically an extreme last resort. Most ECMO patients don't come off of it once they are put on. Ashley was given 14 days on the machine to improve or the family would have been forced to say "good-bye".

This was a second-to-second-to-second survival basis.

The doctors sat down with Brad and explained in detail what was killing her.

-H1N1 (Swine Flu)

-Pneumonia

-ARDS (Acute Respiratory Distress Syndrome)

and

-Septic Shock which is a widespread infection that causes dangerously low blood pressure and organ failure.

These four diseases were a lethal combination.

Over the course of the next six days she had her ups and her downs, but the doctor was able to wean her off ECMO after six days. For the moment she was completely stable on the ventilator, but she was far from recovery.

She spent 12 days in a coma and woke up Christmas Eve 2013 surrounded by her family, who had juggled to be with her as she was in another city and help take care of her kids who knew she was sick, but didn't quite know how sick.

Ashley spent 49 days in the hospital enduring 4 chest tubes, a feeding tube, a central line, ECMO, ventilator, tracheostomy, a slew of IVs, and repeated collapsed lungs.

Ashley couldn't talk due to the vent and had to mouth the words she was trying to speak or write down/draw what she wanted or needed. She had to go through rehab in order to learn how to walk again. Bathing, using the bathroom and personal grooming were things she could no longer do on her own and her husband had to help her.

Once Ashley was home from the hospital and trying to find some semblance of normal she entered in depression. She began to lose all of her hair. As if almost dying wasn't enough, she was now going bald and this fueled her depression and made her angry at God.

Why did this happen?

Why did He allow this happen?

Did I do something to deserve this?

Where were all the friends that were there during the onset of the sickness?

While she cried out for answers from God for the things she didn't understand she left battling an array of medications, sleepless nights, and terrible dreams that shoved her into panic attacks and anxiety.

Months passed by; she became stronger and began to regain much of her freedom.

Even though they had lost everything during their time or crisis she still had reason to smile, because her parents were there to help out. Ashley and Brad moved into her parents house with their three children so that she had a good support system while she was in recovery. Her mom was battling lung disease at the time and they vowed to help take care of each other. Like moms and daughters are supposed to do!

On June 23, 2014 Ashley discovered her deceased mama in her bed one morning. Her mama had passed away due to her lung disease in the middle of the night. Her whole world came to a complete standstill as she struggled to make sense of everything happening to her.

Grief is crippling. It comes in waves at the most inopportune moments. Just when you think you've worked through it and have a handle on it it comes back and completely has you undone in a matter of seconds.

But if you wade in the waters of grief for too long they will overtake you. You have to keep swimming. Keep treading. Keep moving. Keep fighting.

Through the loss of her mama Ashley pushed forward in an effort to fully recover from the diseases that almost killed her in 2013.

Twenty fourteen was met with numerous doctor's appointments, rounds of pneumonia, and numerous ER trips. They discovered, after a sleep study, that the oxygen she had been given after her extended hospital was going to become a permanent part of her everyday life. Repeated chest x-rays showed two, once perfectly healthy lungs, not healing from the damage done by the ARDS!

Ashley was hit hard in 2015 with a diagnosis of PULMONARY FIBROSIS.

It's amazing how you can be in a crowded place and feel so utterly alone. And how you can have total chaos going on around you, but you only hear one or two words.

For those that don't know what Pulmonary Fibrosis is it is, according to the American Lung Association, an interstitial lung disease resulting in scarring. The more the lung tissue becomes scarred the more it impacts a person's ability to breathe.

Ashley's supplemental oxygen was now upgraded to 24/7 use.

Once you lose your lose function there is no regaining it. The only thing the doctors can do is try to slow down or stop the progression of the deteriorating lung tissue.

By 2016, they learned that they hadn't been able to stop the progression. They hadn't even slowed it down a little.

The next two words to knock the breath out of her were LUNG TRANSPLANT.

This couldn't be real.

This has to be a "worst case" scenario situation.

But it wasn't.

This was real life.

From that moment things for lung transplant began to move forward quickly. A transplant coordinator called to set up her lung transplant evaluation. Insurance approved everything and in Feb. 2017 they went to her first appointment at Duke to discuss the options, statistics, survival rates (with and without) and etc surrounding a double lung transplant. Ashley had a battery of testing, physical exams and blood work done that day.

She's in end stage pulmonary fibrosis and is a perfect candidate for a double lung transplant.

In order for her to get on the list for a double lung transplant she would have to relocate to Durham; attend pulmonary rehab daily; lose 100 lbs; and prove they had the funds to cover before & after care, relocation, antirejection medications, and any surgery costs, meds, doctors appointments and etc that isn't covered by her insurance.

She has started her weight lost journey and is at 34 lbs lost and has started pulmonary rehab. They have begun the journey of relocation and fundraising.

This past week Ashley went to her pulmonary rehab class like usual for a Wednesday afternoon and was ready to work out. However, things took a drastic turn. She had been feeling like someone had punched her in the chest for a couple weeks and had just chalked it up to pulmonary fibrosis, but this time it was accompanied with chest pain, shortness of breath, irregular heart beat, low O2 saturations despite being on oxygen and low blood pressure. The rehab immediately sent her over to the ER to be checked out.

She had a chest x-ray (which was clear), an abdominal CT, an EKG and blood work. The ER didn't see any signs of pneumonia, Congestive Heart Failure, heart attack, or infection. The only thing they found was that she had fluid around her lungs. They thought, given her history, that it was best to admit her and perform an echocardiogram to see if they could find out why she had fluid around her lungs.

The minute she text me to tell me she was in the ER I rushed over there to sit with her and I stayed with her until she was in her room and settled.

Ashley was released from the hospital on Thursday afternoon with the following diagnosis: Pulmonary Hypertension (a type of high blood pressure that affects the arteries in the lungs and heart), pleurisy (inflammation of the tissues that line the lungs and chest cavity), and her echo revealed Grade 1 Diastolic Dysfunction (which is the beginning of diastolic heart failure).

Today she was scheduled for a heart cath and stress test which we will find out the results of August 22nd.

Yesterday her doctor informed her that this the start of the PF pattern decline. The survival rate of someone with Pulmonary Fibrosis is 3-5 years without a transplant. There is no cure for Pulmonary Fibrosis except transplant. But a transplant could add anywhere from 1 to 20 years to your life depending on how your body rejects and reacts to the immunosuppressive drugs.

It's been 3 years since her diagnoses and from this point forward she can decline at a rapid rate.

Now she's in the fight of her life. She's racing the expiration date stamped on her lungs.

In the coming weeks she, Brad and her doctors will have to talk and decide the best course of action.

-Does she continue to try and lose the weight on her own hoping that she can get it off before she is in serious need of new lungs?

-Does she go through Bariactric weight loss surgery to help remove the weight needed to get on the transplant list and risk not coming off a ventilator once intubated? If she can't come off the vent they will have to trach her permanently.

or

-Does she do the band surgery down her throat under partial sedation which can introduce a high of infection?

If you've made it all the way through this blog (thank you) the question I ask is this:

WHAT WOULD YOU GIVE TO HAVE A LITTLE BIT MORE TIME WITH THOSE YOU LOVE?

Below are a handful of images I captured for Ashley and her precious family earlier this year.

Prayers are always appreciated for the Ashley and her family. She needs all the prayers she can get. God is still alive, on the throne and in the healing business.

If you can donate, please do so. No amount is too small.

You can donate here: https://www.youcaring.com/ashleyallen-735971

Please share Ashley's story in an effort to raise awareness for Pulmonary Fibrosis.

"We are assured and know that [God being a partner in their labor] all things work together and are [fitting into a plan] for good to and for those who love God and are called according to [His] design and purpose." --- Romans 8:28

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