#39 My Last Breath (Life With Cystic Fibrosis) - Josh & Amy Glasscock, Part 2 | Compelled Podcast

#39 My Last Breath (Life With Cystic Fibrosis) – Josh & Amy Glasscock, Part 2

This is Part 2 of Josh and Amy Glasscock’s story.

Josh Glasscock was born with cystic fibrosis, a terminal condition that slowly destroys the lungs. By 34, his condition had worsened to the point that he was at death’s door. His only hope for life lay in a risky lung transplant. But when 10 minutes from his life-saving transplant the pair of donor lungs ruptured, he was sent reeling.

Was this a death sentence? Or an unexpected blessing from God?

If you haven’t listened to Part 1 yet, then please listen to that first. (Episode #38 Chronically Sick. Abundantly Alive. – Josh & Amy Glasscock, Part 1)

Also, make sure to join our Zoom call tomorrow night (Wednesday, April 7, 2021) with Josh and Amy! Details are here.


The following is a summary of the podcast interview above with Josh and Amy Glasscock. Many more details are included in the original podcast episode and we encourage you to listen.

Can’t Breathe

Josh Glasscock was only 34 years old, but his cystic fibrosis was causing his health to decline until one day in May 2019, when things took a sharp turn for the worse.

Josh woke up that morning feeling an extreme heaviness on his chest and had great difficulty breathing. When the sensation didn’t pass, Josh concluded he must have a collapsed lung again, so his wife Amy rushed him to the hospital in Austin, Texas where he hoped to find relief.

However, Josh didn’t have a collapsed lung. His lungs simply weren’t processing enough oxygen. The pain was excruciating and his body’s natural reaction to suffocation was to panic.

The only relief doctors could provide for Josh was to give him morphine, which didn’t actually improve his breathing but only sedated Josh.

While Josh was hooked up to an oxygen tank, his lungs weren’t absorbing the oxygen anymore. He constantly felt like he was suffocating, and it was a phenomenon that went on not just for hours, but for days.

This was a dark time for the Glasscocks. But just when the Glasscocks thought things couldn’t get any worse, they did. 

Palliative Care or Lung Transplant?

Josh’s condition continued declining to the point that he was placed in IMCU (Intermediate Care Unit). He was being sedated multiple times a day because of life-threatening attacks, and even during the times Josh was awake, the only thing he could do was focus on breathing.

In just a few weeks, Josh’s health had worsened to the point that he and Amy were facing a difficult question. Did they want to put Josh on palliative care and ease his death, or did he want to try to receive a lung transplant? 

Doctors were pushing them to decide quickly, reminding them that each time Josh was given drugs for sedation and to ease his pain, it was limiting his lungs further and giving him a smaller chance for a successful transplant. 

The decision was not an easy one. While modern medicine has made incredible advancements in surgery, lung transplants are still some of the most difficult and dangerous operations that exist, especially for a cystic fibrosis patient.

Furthermore, the underlying condition of cystic fibrosis wouldn’t leave. It could easily reinfect and destroy the new pair of lungs. The risk would be especially significant considering the lifelong use of post-transplant immunosuppressants.

Unlike other transplants, such as kidney or liver transplants, where the patient can live for the rest of their life with their new organ, lung transplant recipients typically only live for a handful of more years. At which point, they either die or try to receive another lung transplant. 

In fact, according to the Mayo Clinic, only half of lung transplant recipients are still alive after 5 years. And once that transplant happens, there’s no going back. It’s the beginning of an hourglass, with a limited amount of sand, slowly running out of time.

A Decision

Josh and Amy felt unsure about how to proceed. Neither option seemed good. On one hand, they could put Josh on palliative care, where he would certainly die, but could die more comfortably. 

On the other hand, they could attempt a transplant, which could potentially extend Josh’s life by a few more years. But the risks were high. Josh could die before he got the transplant, during the surgery, or from complications after surgery. And, if he went this route, he would have to endure a great deal of suffering.

After seeking the Lord earnestly and receiving no clear direction, the answer came one day unexpectedly as Josh was visiting with a psychiatrist. During their conversation, the psychiatrist told Josh to close his eyes and mentally go to a place that made him happy.

When Josh’s eyes closed, he instinctively found himself sitting on his front porch, watching his 2-year-old daughter, LilyRay, playing in the yard. Immediately, his eyes filled with tears and he began to weep uncontrollably. 

At that moment, Josh knew he would do anything to have just a few more years with his precious daughter. 

The decision was made. Josh would continue suffering while pursuing a lung transplant.

Physically and Emotionally Exhausting

The Glasscocks were relieved the decision was finally made, but their relief was soon replaced with new stressors. When Josh informed the doctors of his decision, he was told they would get him on the transplant list within 2-3 weeks. 

What sounded like a relatively short amount of time to most felt like an eternity to Josh. He sometimes wondered if he would survive the next hour.  

On top of simply trying to keep breathing hour after hour, Josh had to undergo rigorous testing and preparation to make sure his body was ready for the transplant. 

Although Josh had been sent home from the hospital to wait for the transplant, he and Amy were constantly making emergency trips to Austin for recurring hospitalizations, as well as weekly trips to the San Antonio transplant center for vigorous testing and clinic assessments.

Josh was wheelchair-bound at this point and could no longer take care of many of his daily necessities. For Amy, the intensive care was both physically demanding and emotionally exhausting. All the while, still caring for 2-year-old LilyRay at times when they were home from the hospital.

Through the many desperate prayers and pleas of Josh and Amy and others on their behalf, God sustained them. Not for the 2-3 weeks they were originally told, but for 2 months when Josh was officially added to the lung transplant list.

More Waiting

Once again, the relief the Glasscocks felt from finally being placed on the transplant list quickly faded as the reality of how the list worked sunk in.

Josh was given a number which indicated his place in line on the list. However, his number could change at any moment as others on the list became more or less critical than himself. 

Even being number 1 didn’t guarantee that Josh would get the next transplant opportunity. Lung transplants are extremely specific to the patient. Things like blood type, lung size, and donor history all play a role in determining whether or not the lungs would be a good fit for Josh and give him the best chance of a successful transplant.

So, in addition to being first place in line, the lungs had to be a good match for Josh for him to actually receive a transplant. 

Arrangements

Once a pair of lungs became available for transplant, the surgery had to take place within hours while the organs still remained viable. A call could come at any moment during the day or night, and they would need to immediately leave for the hospital while the lungs were flown in from any part of the nation. If they missed that all-important phone call, then the next patient on the list would receive the lungs.

Josh and Amy had their bags packed and made arrangements to care for LilyRay. Because of the uncertainty of the success of the transplant, Josh and Amy had also prepared all of their family to travel to the hospital to come say goodbye to Josh in case he never woke up.

And, with Josh’s health declining at such a rapid pace during the time they were waiting for the call, arrangements and plans had even been made for his funeral.

The “Call” Came

After months of preparation, testing, waiting, and countless visits to the hospital and brushes with death, Josh got the call they were waiting for. A pair of lungs was ready.

Josh and Amy rushed to the transplant center in San Antonio. The donor had just passed away, and the lungs were fresh. Josh needed to get into surgery right away.

The surgical team sprang into action, immediately shaving Josh’s chest and injecting him with immunosuppressants to prevent his immune system from rejecting the new organs. A whirlwind of IVs, wires, and monitors sprang from Josh’s body.

Their 2-year-old daughter sat on Josh’s lap, not comprehending the gravity of the situation. Choking back tears, Amy repeatedly told Josh that she loved him. She had doubts that he would even survive the surgery, and Josh did as well…  but he didn’t want to die without trying. They would trust God and Josh would go down fighting.

Then just 10 minutes before the surgery, the doctors came in with grim news…

The donor lungs were defective and had ruptured during testing.

Go home.

Death Sentence? Or God’s Protection?

Surgical teams test donor lungs three times before transplant surgery. They must move quickly and make fast decisions. And in this scenario, the lungs passed the first two tests. But then just moments before Josh’s life-changing and potentially life-saving surgery, the lungs ruptured during the 3rd test.

They were no good and would have proved fatal for Josh had they been transplanted.

Only by God’s mercy, did the surgical team discover this in time, with only minutes to spare.

While they were temporarily relieved, Josh and Amy knew this meant they were starting the emotional rollercoaster all over again – waiting for that life-altering call to come at any moment.

18% Lung Function

And while they waited, they daily clung to the Lord praying and asking God to spare Josh’s life until they could receive that phone call. 

Josh’s condition continued to worsen. Every day he was having multiple respiratory attacks where he couldn’t breathe.

Around this time, Josh’s lung function was measured at 18%, meaning that 82% of Josh’s lung functionality was shot. They didn’t work and simply couldn’t process oxygen.

If something didn’t happen soon, Josh was going to die.

But God was already working behind the scenes doing something Josh and Amy would never have dreamed of.

An Experimental Drug

Just as things were looking grimmer than ever, Josh’s doctor brought up something completely new. A third option, outside of palliative care and or a lung transplant.

An experimental drug had been developed for cystic fibrosis patients, and Josh’s clinic had been approved to give it to their patients before it was greenlighted by the FDA. Josh’s doctor wondered if Josh might be a good candidate.

After serious prayer and consideration, Josh and Amy decided to move forward with the experimental drug. On September 25, Josh’s 35th birthday, he received a call confirming that he could get the medication. And on October 3, Amy’s birthday, Josh received the drug and took the first dose.

Get Off the Transplant List?

Josh was doubtful that the drug would change anything. Maybe if he had taken it months or years before, but now his lungs were almost completely destroyed.

However, within the first week, Josh started to notice changes. He had more energy and less frequent attacks. Over the next several weeks, Josh began to improve so much that his doctor advised him to consider getting off the transplant list.

It seemed counterintuitive after Josh had worked so hard to get on the list and had waited so long to receive a transplant. But on a Friday evening, Josh became nearly convinced that he should do it.

Josh and Amy would give it the weekend to think and pray and make sure that was the direction they wanted to head and then call Josh’s doctor with a final answer on Monday.

Another “Call”

But that Saturday night, Josh’s phone rang. Unbelievably, Josh was being offered another transplant. He had to decide immediately if he would accept.

“No,” was the answer Josh gave the nurse on the other end of the line.

It was a step of faith – that perhaps God was working not through a transplant, as Josh and Amy had originally expected, but through a completely different path that Josh didn’t even know existed just a few weeks ago.

Much Thanksgiving

When Thanksgiving rolled around, the Glasscocks traveled south to visit family, a little over a month since starting the new drug.

Before taking the medication, Josh couldn’t stand or even take a step without oxygen, but that November, he was fishing at the beach oxygen-free.

A Living Miracle

Today, Josh has continued to surpass all predictions about his life expectancy.

Josh’s lung function is now measuring 34%. Normally, it’s incredible for a cystic fibrosis patient’s lung function to remain the same, let alone improve. So, the fact that Josh’s lung function has almost doubled from his low point of 18% is a miracle.

Josh no longer must use a wheelchair and he can walk anywhere he feels like. Apart from an inhaler, he doesn’t even need oxygen during the day.

God’s Protective Hand

Josh and Amy have spent a lot of time reflecting on how God’s hand was divinely at work to preserve Josh’s life.

  1. Josh was only moments away from receiving a defective pair of lungs, which would have resulted in his immediate death. But God allowed the surgeons to identify the defect at the last minute.
  2. Even if the pair of donor lungs had been viable and the surgery had been successful, Josh would still be locked into a limited time frame with transplanted lungs. The lungs would have worn out within a handful of years and he would have to receive another transplant, restarting the process all over again.
  3. Josh’s clinic was one of the few that went through the necessary paperwork and logistics to administer the experimental medication to its patients.
  4. The requirements to receive the experimental medication before FDA approval included all applicants to currently be on the transplant list. If Josh had pursued palliative care, he never would have been allowed to join the transplant list, and therefore would never have been allowed to use the experimental medication.

By all accounts, Josh should be dead. But he isn’t. Today, he’s living proof of the tender mercy of God.

May We Live For Him

In Ecclesiastes 9, God reminds us that no man knows his time. Even a perfectly healthy person like you or me. We don’t know, only God does.

May we each live as though our days are numbered, and may we live them for the glory of Him who made us.


Josh and Amy’s Recommended Resources

More About Cystic Fibrosis

Photos

For photos of Josh and Amy growing up and their early years of dating and marriage, please see the photo section in Part 1 of their story.

Hospitalizations, surgeries, life-sustaining equipment and treatments

Lung function test

Josh in IMCU – May 2019

Cancelled Lung Transplant (both had suspicions that Josh might not survive the surgery)

Josh’s 35th birthday right after getting notified he will start the Trikafta drug

Josh and Amy fishing on the beach (without an oxygen tank!) during Thanksgiving 2019, just a little over 1 month on Josh’s new drug.

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