My Journey (from Sickness and Near Death to Health)

I am an amateur at writing but was moved by the Holy Spirit to write about my experience. I am depending on the Holy Spirit to guide me through this endeavor. This is my testimony, my story, about my battle with Idiopathic Pulmonary Fibrosis. I traveled from church to church, Sunday School classes, Bible studies, Wednesday night prayer services, but never reached the numbers of people that I wanted to testify to. My testimony is too lengthy to limit it to a 30-minute talk. To cut it short, would be a disservice to the listener. I felt that I did not convey enough emphasis on God’s miracles, or the prayers that were prayed for me along my journey.

My saga started in early 2018. I hope through my testimony I can reach those who are in despair over a diagnosis of some terminal illness. My struggle could be applied to any problem that seems insurmountable. Remember, God is on your side. Have faith. Cast your cares on Him. No matter how bad it looks, never stop believing in God. Keep your faith strong and remain positive. Negativity invites the devil.

A brief background about myself, I was baptized at the age of nine. I received Christ and the gift of God, at Vacation Bible School, in the summer of 1960. Without being rooted in the Word and with peer pressure, the world, with all its temptations, lured me away from my intended path.

By thirteen, I was in full-fledged rebellion. I rebelled against school, authority, my parents and church. I did go to church with my parents, but skipped whenever I could get away with it. By fifteen, I discovered girls. There was little chance of going back to my original intent, to follow Jesus.

I married at twenty.  Five years later, when our son was born, we made the decision to regularly attend Church. Then we bought a boat. Soon church life was in the rearview mirror.  Church was replaced with weekends on the lake with friends. A few more years passed, as a result of the lack of being in church, and not renewing our minds in the Word daily, we drifted apart and got a divorce.

After my divorce, on several occasions, I was drawn to get back in church, to be the Jesus follower I had committed to being when I was nine. I would attend for a few months, but the world would always call, when I began to make progress. There was about 35 years of this behavior. I would find myself in a desperate situation and turn to the Lord for help. He never failed to answer my prayers. I thought that I would change my life someday.  But I kept repeating this scenario, until I was 67. This is where my story begins.

I thought I had it made. I was 66 years old, living comfortably on a small bluff that overlooked a beautiful river meandering by. I was so close, I could stand on my back deck, toss a rock and hit the middle of the Soque river. I had retired from the fire department with plenty of income from my pensions, 401, my IRA, my investments and Social Security income.

I had always been a good dancer. I could be found, every weekend, on the dance floor somewhere. My main haunt was the dance hall at the American Legion in the town of Alpharetta. I had met a smooth dancer there that I was fond of. And whenever we were there on the same night, she and I would partner up. I felt like I was on top of the world.

I noticed that I was beginning to tire after 3 or 4 dances, and needed to sit out a few, needing to catch my breath. In late November, in 2017, I confided this to my lady friend. She told me to go to the doctor and get checked out right away. But being proud, I said it was nothing more time in the gym, wouldn’t fix.

I stopped socializing at the gym and got serious about my workouts. I added vitamins and herbs to my diet. I felt better for a while, but feel now, that it was just a psychological effect. By my birthday, late January 2018, I began to avoid stairs, whenever possible. It was winter, and I stopped hiking the trails around my home. No one at the dance hall, seemed to notice that I was sitting a lot of dances out, preferring to socialize.

Then, when I would see my lady friend, she would ask “have you seen a doctor yet?” “No, but I’m going to.” “When?  It could be your heart trying to tell you something.”

That March, I found myself in a situation where I had to climb 5 flights of stairs. When I reached the top, I thought I would die! I could barely catch my breath. My heart pounded in my ears, loudly. My eyesight dimmed momentarily.

Fearing heart disease, I made an appointment with a cardiologist. The exam was thorough, vitals, blood panel, stress test and lastly a chest x-ray. I was told to return in a few days for the results.

I went back to the doctor that Friday. He walked in, sat down and said, “I want you to see Dr. Brown, a pulmonologist. He specializes in respiratory diseases.” “I have some kind of respiratory disease?” I asked with relief.” I thought it might be my heart!” “No, it’s not your heart. Your heart is fine. You are fine, except for something I see in your x-rays. That is why I have made you an appointment with Dr. Brown on Tuesday, of next week. Does that work for you?” “Yes, I’ll be there.” I thanked the doctor and left for home.

THE DIAGNOSIS

On Tuesday, the next week, I saw the pulmonologist. “Hello,  Mr. Wilburn, I’m Dr. Brown. I have read the report from your cardiologist. I need to run more tests. They are a little more comprehensive.”

This time a CT scan was added. I was told to return the next day for the results. So, I’m sitting in his office the next day, when he walks in with my file in his hands. “What’s the verdict, doc?” I said with a smile. He did not smile back, but rather had a stern look on his face. “Hmmm, not good”, I thought.

He sat down at his desk across from me. Then he opened the file and began to speak. “Well Mr. Wilburn, your doctor was correct everything is fine, except for your lungs. The CT scan has revealed scarring in your lungs.” “What does that mean? Can you give me something to clear it up?” He began to explain, “we can’t find a reason for the scarring. If it were something in your environment that we could remove, then yes, possibly. But there is nothing in your history, that indicates that. The blood panel we ran, didn’t reveal any possible cause. This is called Idiopathic Pulmonary Fibrosis, when there is no cause. So it’s like an autoimmune disease. Your body will continue to attack you and scar your lungs, until there is no more breathable tissue left. Once diagnosed, you have 3 to 5 years to live.”

I was not prepared or expecting to hear anything like that. “I feel fine, except for stairs. Are you sure you didn’t pick up the wrong file? I feel good!” He assured me that it was my results. As he continued to speak, his words faded into mumbles as I sank into my racing thoughts. Pondering my future. I heard little else. But, I did get the gist of it all, which was, “don’t make any long range plans. And if you have a bucket list, make it a short one.”

IPF comes with a bleak future. It is a debilitating and incurable illness. It is also an unpredictable illness. You can have an exacerbation at any time, which you may not survive. So, my new reality was that I would have a three to five year life span, if I were lucky.

He said that there were 2 or 3 medications that he could prescribe for me, that might prolong my life to possibly 5 to 8 years. But the effects of the medication are as bad or worse than the disease itself. Feeling nauseated, unpredictable explosive diarrhea, and vomiting, were mentioned. “No thanks, I will die with some dignity.”

CASTING MY CARES ON JESUS

I left the doctor’s office. Went home and hit my knees, praying. I began to confess my sins, but quickly realized, there were too many to remember. I had been a serial sinner. “Why would God ever help a sinner like me?” At some point I just said, “Lord, please forgive me for the life that I have led. I have done nothing to deserve it, but please heal me.” I was depending on the Lord’s goodness and mercy.

Then, I remembered God’s love for us, is not based on our performance, but on our faith in Jesus. Our relationship is based on believing what Jesus did for us, dying for our sins, past, present and future. If you fall away, you can come back. His arms are always open. We all have come short of the Glory of God. No one has not sinned, no not one (Romans 3:23). We are but human, and we fail to be the Jesus followers that we aspire to be.

If you are not a Christian reading this, Romans 3:22 says, Righteousness comes to you, from God, through faith in Jesus Christ, to all who believe.  And Romans 3:24 states, that we are justified, freely, by His grace, by our redemption through Jesus Christ, who died for our sins.

Now, you know why I did not get severely depressed and throw in the towel over this diagnosis. I knew that I was either going to live or die and go to Heaven. I was a winner, either way. I was resigned to the fact that I could die in 3 to 5 years, but my hope rests in Jesus.

I called my brother and told him what was happening. I asked him if he could relay the news to our extended family, of my situation. Then I dialed a few close friends. Everyone began to pray for me. I began strengthening my relationship with the Lord through prayer, reading and studying His Word and attending church, regularly, this time. I was doing well, unless I exerted myself. I’m fairly lazy and this worked in my favor. A little light hiking was all I was doing to keep in shape. By the end of the fourth year, I began feeling the effects of the disease, more and more.

I put my situation on my Facebook page, asking for prayers. The response was humbling. Old friends, new friends and high school classmates, from over 50 years ago, responded that they were praying for me. I had friends who were friends with missionaries in other countries. Through their relationship, I now had people in other countries, praying for me. I let everyone know how much I appreciated their prayers! Occasionally, I would update my condition via my Facebook page.

There were no more stairs for me. And I had given up hiking. I went to places crowded with people, the movie theater, the grocery store and church, etc. Through the grace of God, I did not develop Covid. It was now early December, and the 5th year was just around the corner. I could not help but be apprehensive.

THE DREADED FIFTH YEAR

I am now in the 5th year of this dreaded disease. It’s my birthday week. And I wake up with all the symptoms of covid. My temperature was north of 100. I had a slight headache. I would be burning up one moment and have chills the next. I was not hungry. And hardly ate anything, I felt weak and fatigued. I just wanted to go back to bed and sleep. This went on for a few days. Then I began to feel better. My temperature dropped back to normal, my chills gone, and my appetite returned. In my mind, I told myself that I had turned the corner.

Now, I had terrible lungs, and covid is a disease that attacks the respiratory system. If you’re over 65 and have a comorbidity, like diabetes, asthma, heart disease, etc., you were likely to die and many did. Praise God, by His grace,I had a light case. How do I know it was covid, you might ask? My wife came down with the same symptoms I had. She lost her sense of smell and taste for several months. She still has bouts of fatigue that come and go to this day, two years later. That describes covid.

RESEARCHING LUNG TRANSPLANTS

February came and went, and things got back to normal for me. I started to research lung transplants and transplant hospitals. I believe that the Holy Spirit was pointing me in this direction. I was overwhelmed by the mass of information that I had to digest. This is for your information, if you are curious. I found out that on average, a person waits for two years for a single lung transplant, and three for a double transplant. There are requirements that you have to meet to be approved and to be accepted onto a transplant list. To be accepted you have to pass a battery of tests. Many transplant centers will not accept you if you have kidney disease, heart disease or have had recent cancer. If you are too frail and weak, you will not be accepted.  Some people will not or cannot stop smoking. Obviously, they are rejected. I also discovered that twenty-eight percent of the donor lungs are not suitable for transplant for various reasons. There are many lung transplant centers across the US with varying track records of success. The very best one for me was Duke University Hospital, in Durham, North Carolina.

Duke is one of the top five transplant centers in the US and only eight hours, by car, from me. Other transplant centers that I checked, have age limits. They only accept people 65 years old and under. I was already 71. Duke goes by your health, with no age limit. Duke is not as famous as some transplant centers like Barnes Jewish, Mayo Clinic or Cedars-Sinai Hospital. But Duke has a great success rate and outcomes for their patients. I personally believe it is the best in the southeast. Duke will take the hard cases that no one else will take.

Now I had my transplant center of choice. On March 30th, 2022, I arrived at Duke for my evaluation. After the pulmonary function test and six-minute walk, I was interviewed and told that I was too healthy to be considered for their lung transplant program. I was prescribed supplemental oxygen. And told to return for another evaluation in six months.

HERE WE GO AGAIN

Home, less than two weeks from my evaluation at Duke, I developed a sore throat and a cough. Not wanting to waste time with over-the-counter medications, I made an appointment with my doctor. He was on vacation so I saw a PA. He gave me a prescription for my sore throat and cough and sent me on my way. When that didn’t help, I was back at the doctor’s a week later. This time the PA prescribed a stronger prescription. After another week had passed, I was back at my doctor’s office. Now, my doctor was back, but out sick himself. When I coughed, I roared and sounded awful. My throat was so sore, I was popping throat lozenges like they were candy. So, I saw a different PA this time, who took an x-ray of my lungs. After the x-ray, I’m sitting back in the exam room when the PA enters with the x-ray. “Mr. Wilburn, your lungs look bad. I would check myself into the hospital next door, if I were you,” he said. “Okay, I’ll do that,” I said. I live 25 miles away. I wasn’t going to check myself into that hospital. My thought was that I would give it one more day, to see if I would turn the corner and get better. That was a poor decision.

Every hour, I gargled with warm salt water, along with taking my medication. About six p.m., I got a phone call from that PA. “Mr. Wilburn, you didn’t check yourself into the hospital.” “No, but I will if I don’t improve in a day or so,” I said. “Mr. Wilburn, you don’t understand the gravity of your situation. If you take a turn for the worse, overnight, you might not survive.”

I thought to myself, “when has a doctor ever been concerned enough to call after hours to stress to the patient, that he needs to be in the hospital. “This must be serious,” I thought. I told him that I thought that that was a suggestion and not an order. Again, he said, “check yourself into a hospital.” I thanked the PA for calling. I turned to my wife and said, “we have to go to the hospital.” (You remember that good dancer from Chapter One? She is now my wife.)

An hour later, I was in a bed in my local hospital. My supplemental oxygen need was now up to 8 liters. I had chills, body aches, a low-grade fever, a runny nose, chest congestion, along with my sore throat and cough.

The ER doctors wasted no time in treating me. I was started on an IV of fluids and anti-viral drugs. I was later told that I had Influenza A and viral bronchitis. Things could have gone very badly if I hadn’t checked myself into the hospital. I was told by the ER doctor, that with my badly scarred lungs, that it was no small miracle that I had responded as well as I had to the treatment. In just 3 days, I was released from the hospital to my doctor’s care. I was in and out so quickly that I didn’t even mention this on my Facebook page. The doctors said that it was no small miracle. Two times now, the Lord had saved me.

A MEMORIAL WEEK TO REMEMBER

It was Cinco de Mayo, the fifth of May, and things were returning to normal after my hospital stay. I had this new friend, who went with me everywhere that I ventured. I’m speaking of the large, shiny green bottle of O2 that I dragged behind me. I went from a small backpack bottle to carting around this big bottle, to supply my ever-increasing need of more oxygen. I was also supplied with an oxygen concentrator to use while at home.

Some friends invited my wife and I to join them on a day trip on Memorial weekend, to a nice restaurant on the Toccoa river, in the foothills of northeast Georgia. “Sounds great,” I said. It’s been a long time since I’ve been anywhere to have fun.” Before I knew it, Memorial Weekend was upon us. My wife loaded 2 large bottles of O2 into the back of my convertible. We rendezvoused with our friends and followed them up to the restaurant, about 2 hours from our home. I was on a full bottle and carried the others with me. It was taking 3 1/2 hours to empty a bottle of O2. That should give me 10 1/2 hours for a 7-hour day trip. That was plenty of oxygen. Upon arrival, we found the restaurant crowded. We put our names on the waitlist and an hour later, we were seated on the deck. The deck overlooked this beautiful rushing river. We ordered, and I excused myself to change my bottle for a new one.

I returned to the table. It was a very nice, sunny day. We were having a good time reminiscing about old times we used to have. Then our orders came. The food was delicious, and the company was great. I realized how much I needed this after having survived the flu and covid during the first part of the year. After the meal, we retired to the riverside, where the restaurant had provided Adirondack chairs for their guests. We basked in the sun, watching people float by on inner tubes. We were continuing our conversation from lunch, when I got this weird feeling to check my consumption of O2. I should have had, at least two hours left, in my bottle. Oh, no! This bottle was down to the red mark, indicating that I had 10 minutes of oxygen left.

I didn’t realize it, but I was having what is referred to as an exacerbation. An exacerbation is when your symptoms suddenly get worse. I did some quick figuring in my head, and we said our goodbyes. There was a two-hour trip home, ahead of us. I told my wife that I might run out of oxygen before we made it home. “Then let me drive. You relax and try to calm down,” my wife said. “No, if I run out of oxygen and die, you would blame yourself and always feel guilty,” I replied. I knew how cautious she drove. I needed speed, not caution. When we got to the car, we quickly switched to the last full bottle.

I got behind the wheel, and we sped away, I kept thinking that it was Memorial weekend and there was bound to be heavy traffic. I could have had a flat, blow a water hose or get stopped by the law for speeding. Any delay could spell disaster for this beautiful day, which started out great. The unknown variable here was, I didn’t know how much more oxygen I was using.

God or his angels, must have been riding with us that day. Because, traffic was amazingly light, I had no car trouble, and we never saw a law officer. I pulled into my garage with under 5 minutes of O2 left in the bottle. “Thank you, Lord, for getting us home safe.”

A FALSE SENSE OF SECURITY

“Let’s get you to the hospital, “ my wife said. “Look honey, this is a holiday. I have plenty of O2 here at the house. I think I’ll be fine. If I am not doing better tomorrow, I’ll go to the hospital.”

That was a foolish mistake on my part. I just didn’t want to admit how serious my situation was. I had an oxygen concentrator and 8 bottles of oxygen. Four hours later, the concentrator could not keep up with my need for O2. I called the man who delivers oxygen to me. Luckily, he answered and said that the warehouse was closed but that he had another concentrator in his van. He brought it over and spliced the two machines together. The two concentrators together, could now deliver me ten liters of oxygen. “Safe, again,” I thought.

The next morning, I awoke with labored breathing. The machines were already cranked up as far as they would go. So, at this point, the only thing I could do was to add a bottle of O2 and breathe from 2 sources of oxygen. I was now breathing 15 liters of oxygen.

Only now, did I let my wife call 911. Before I knew it, they were there. They quickly assessed my situation and loaded me into their unit. We sped away to the hospital, my wife following close behind. My 15-minute ride seemed to take forever. On the way, I realized that I had made a dumb decision waiting till today to go to the ER.

Just then, the ambulance came to a stop. The doors swung open, and I was whisked away into the ER. Several people were waiting for me. “Whew! I’ll never make this mistake again! I’m safe now. The doctors will take care of me. Thank you, Lord!”

REALITY SLAPS ME IN THE FACE

Upon arrival, I was wheeled into a room of medical personnel. Doctors attended me, while others switched me over to the hospital oxygen supply. The doctors were taking my vitals and history, I was beginning to feel confident that I would be all right now.

Another ambulance arrived and the team, except for one doctor, left to attend to the new arrival. The ER doctor that was with me said, “Mr. Wilburn, I’m going to be candid with you. I have been an ER doctor for many years. You will continue to need more and more oxygen until we can’t give you enough. We have to turn this around, if it’s not too late. People arriving here, in your condition, have about a 10 percent chance of walking out of here. You might start thinking about getting your affairs in order.”

Wow! That was a jolt to my reality. A ninety percent chance that I’m not going to make it! But, after the initial shock wore off, I remembered Psalms 118:17,” I will not die, instead I will live to tell what the Lord has done.” Also, Jeremiah 11:29, “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” I repeated these and other healing verses, over and over.

THE LONG ROAD TO RECOVERY

Those first five days in ICU were tenuous. I got worse. Just as the doctor said I would. It seemed that they had little hope for me. I cannot tell you what all they did. I do remember that they put me on a machine that delivered oxygen with some kind of medication in it. They referred to it as wet oxygen. At one point, I was breathing north of 90 percent of wet oxygen. After five days of this, I began to improve, and I started to need less of this supplemental oxygen. After another five days in ICU, I was doing well enough to be moved to the PCU, (personal care unit). While I was in ICU, I never felt that I would not make it. I just kept praying, and thinking, God has a plan for me.

Once in the PCU, my wife brought my laptop to me, and I put my situation on my Facebook page. Again, I got a tremendous response. Many people were praying for me. High school friends that I hadn’t seen in 50 years, visited me. Family members were calling and giving me encouragement.

My need for the wet oxygen, as they referred to it, was over. I had been on regular oxygen for some time, now. And my need for that was slowly beginning to wane. Every day, when the attending doctor made her rounds, I would ask;” how am I doing doc?”. She would always reply, “we’ll see how things go. You’re not out of the woods, yet. We’ll just have to wait and see.” I never heard the words, “you’re going to be alright.”

The doctors found out that I had Aspergillus, a fungus growing in my lungs. They started treating me for that, also. By the end of the third week, my need for supplemental oxygen had dropped to around 10 liters supplemental.

After spending a total of 32 days in the hospital, I was released on July 1st. My need for oxygen was down to 3 liters.

Reflecting back on the last two months, starting May 1st, I had survived Influenza A and viral bronchitis. Then all of June, I was given a 10 percent chance of living. Now, back at home, I was back at 3 liters of oxygen. My faith in God, the positive attitude that I kept because of it and the prayers that everyone sent up to heaven, had seen me through it all. Through Facebook, I let my friends know how thankful I was for their prayers and well wishes. I told the hospital staff that they were all great and bid them farewell. Little did I know at the time, that they were expecting to see me back in the hospital with another exacerbation. Pulmonary Fibrosis is a terminal lung disease. My lungs would only get worse. God had saved my life again. ”What was God’s plan for me,” I wondered.

THE SECOND EVALUATION

On the first day home, I made an appointment at Duke, for a second evaluation on August 1, 2022. I laid a course through our house, to walk, several times a day. A month was all I had to get ready. And I simply had to be accepted, this time. “God has a plan for me,” I said to my wife, “I have to do my part for this evaluation.” All that month of July, I prayed, as I walked and recited God’s Word concerning healing. One verse that kept me motivated was, “As a man thinketh in his heart, so is he,” (Proverbs 23:7). And, everyday, I got stronger. By the end of the month, I felt that I was ready. We left for Duke the morning of July 31st and arrived late that afternoon. It was a long 8-hour drive, with a few stops on the way, to eat and fill the gas tank. We had booked a room near the hospital and settled in for the night. We had a big day tomorrow and needed our rest.

Each day, I had to complete four to five tests. The week culminated with three interviews, a nutritionist, a psychologist and a surgeon who would perform the operation, if I were accepted. The week was exhausting, but finally Friday rolled around. The first two interviews went smoothly, I thought. I was asked a lot of questions and got explanations, about how things would go, if I were accepted.

It was the last interview, and I was sitting in front of the surgeon. “How bad do you want this operation?”, he asked. “Dumb question, I would not be here if I weren’t sure that I wanted it.” I thought. “Are you ready to enter our pre-transplant program? It’s not a cake walk. There will be a lot of walking on an indoor track, stationary biking. There will be weightlifting and exercises for you to do. There are twenty-three sessions. And you have to attend everyone. I can tell you up front, it will be difficult.” I wondered, “is he trying to talk me out of this?” I answered him from my heart with conviction. “Of course, I want this. I have already been walking a lot at home. I spent 32 days in the hospital, this past June, and I’m still pretty strong. Despite everything that I have faced this year, I have a positive attitude. I am ready.”

He told me the reason for the third degree was, that, some people are exhausted by their disease and are ambivalent about their situation. They are here at the insistence of their family. They will go through the motions, but their heart is just not in it. The disease has worn them down. If it gets too hard, they just drop out. “We don’t want to waste our time and resources on someone who is not totally committed,” he said. “I don’t think you know my history, how committed I am to being here. I am committed to being well,” I replied.

He answered, “what are your expectations, if you get the operation and it is a success? Your expectations may fall short. There are individual differences in success. Results vary from person to person. Your results may be better or worse than someone else. You could still need some degree of supplemental oxygen. But probably not.” I said, “I really want this operation. I will deal with whatever comes, when it comes. God has guided me thus far. And I will take whatever comes, with gratitude!”

He told me the decision to accept or deny me would be made by committee, the following Tuesday. My wife and I thanked him and left for home that same day. Four days drug by. I had many prayer warriors praying for me. I knew God was on my side and I didn’t have time to waste.

THE MOMENT OF TRUTH AND THE REST OF THE STORY

Tuesday finally came, as I anxiously waited for that call, the moment of truth. In the next moment I would find out if I had been accepted or not. I picked up the phone with confidence. “Hello?” “Hello, Mr. Wilburn?” “Yes.” “This is the pre-transplant coordinator. Congratulations! You have been accepted into our program.” “Phew! Hallelujah!” I said into the phone.

Now, the rest of the story

She told me that the program was full at that time. But that I needed to get back to Duke as soon as possible. I would get the next available opening. The normal stay from start to post-transplant was six months or longer. So, we had to pack for summer, fall and winter. When relocating, you have to be within 30 minutes of the hospital. There were 23 sessions of pre-transplant readiness. I had to attend all 23 without missing a session. If I passed all 23 sessions, then, and only then, would I be placed on the transplant list.

(Here is more information, if you are interested in lung transplants)

Only 72 per cent of donor lungs are acceptable for transplant. The rest are rejected, for various reasons. Some people die while on the list, waiting for a suitable match. Each candidate is considered by the transplant team, on an individual basis, A lung transplant may not be appropriate, if you have the following: an active infection or a serious case of something such as diabetes, kidney, liver or heart disease, a recent history of cancer or stroke. Also, you can not be too frail for the surgery and recovery. Many transplant centers will not accept anyone over 65 for a double lung transplant. And you must be under 75 for a single.  You’re BMI must be under 35 or under. Duke, though, will take the challenging cases. One obvious unacceptable reason, at any transplant center, is if you will not or cannot quit smoking. All this information and more, can be found on the internet.

My next challenge, after being accepted, was to quickly find a place to live in Durham, near the hospital. Duke emailed me a list of places that would rent to transplant patients. I started calling some places, looking for one in my price range. My wife, meanwhile, was hurriedly packing everything we might need or want while living there. Thankfully, my brother insisted on helping with the move. Because both of our cars were filled to the brim.

As He did on Memorial weekend, the Lord prepared the way, ahead of me. The perfect place became available, the day before we left for Duke. The apartment was just a quarter of a mile from the pre-transplant program and 3 miles from the hospital. We had a nice place to walk our 2 dogs, a second bedroom for anyone who came for a visit, and in our price range. This place that had just become available, had an oxygen concentrator and nine full bottles of O2, just waiting for me.

We arrived about 3:30 on Friday, the 12th. I called the pre-transplant coordinator, right away, to let her know that I had arrived. Expecting a long wait for an opening to become available, I was surprised when she said, “good, we just got an opening. But you have to start on Monday at 8am. We can’t hold it open.” “Oh, I already have an apartment rented. I’ll be there Monday.” “Good, I’ll see you then,” she replied. Praise God, everything had been taken care of, just when it needed to be.

THE PRE-TRANSPLANT PROGRAM

Monday, August 15th, I arrived at the pre-transplant center. The coordinator took my wife and I through an hour of orientation. My vitals were taken. There was muscle testing, that would be done every week,  to chart my progress. A chart would be kept to note my effort. Then, I was taken to each station that I would be visiting daily and was shown the routine that I would be following. “Are you ready for this challenge?,” asked the coordinator. I assured her that I was eager to start.

The next morning, I arrived in loose clothing and sneakers, as instructed. I started the program on 10 liters of supplemental O2, already up 4 liters from the 1st of August, when I first started the evaluation. During the one-hour session, my need for O2 shot up to 15 liters. Then, we I finished went back down to 10. Things went well, I thought. I walked the indoor oval track for 20 minutes. Then, it was on to weights and exercising. There was some stretching, before the weightlifting, so as not to strain a muscle. The last station was 20 minutes on the stationary bike. I did all this while pushing a rollator. A rollator is like a fancy walker with wheels, brakes, and a place for the O2 bottle.

The facility was very large, with at least 20 or more instructors and physical therapists. The facility was also full of prospective transplant recipients, like me, at various stages of their 23 sessions. I was the newbie. They encouraged me not to stop and rest during the session, but to keep moving.

When the hour was up, I had accomplished everything they asked of me. I was determined to do well. There was no praise for the newbie. Just an admonishment not to miss a session. They told me it would take all 23 sessions to get me ready for a transplant. I asked them what would happen after the 23 sessions. “You have to stay in shape while you wait. That, my friend, is your responsibility.” “Friend?” I thought. “You guys never smile. You’re all business!” I had tried to joke around a little but got no response from these people. I imagine they were trying to feel me out, not wanting to form a friendship with someone who might not be there after a week.

It’s not everyone’s fate to make it through the 23 sessions. Some find it too hard and drop out after a week. Some grow weaker and cannot go on. That is not common. You are screened too well. If they didn’t think you would make it, you wouldn’t be here. Most people work hard, succeed and go on to receive a transplant.

Lastly, one other reason a person may not complete the program is, that they have an exacerbation, a heart attack, a stroke, or some other misfortune and die. Of course, this is rare. But, as I found out, this is how I got into the program when I did. Someone in the program dropped out, died, I believe. I got his spot. That same someone had occupied the apartment, that suddenly became available, for me to rent.

After the first full week, I was feeling good about the program. The only thing that concerned me was my need for supplemental oxygen, kept slowly rising. At the end of the third week, I was clipping right along, getting stronger every day. My O2 need, by this time, though, had risen to 20 liters, while at the apartment, and 30 while doing the program.

Sometime during the fourth week, my oxygen requirements rose to 25 liters at the apartment and 40 during my sessions. The workouts were getting harder now.  In order to get the 40 liters, I had to push two bottles, spliced together, on my rollator, I would not let myself worry about the continuing need for more oxygen. I remained positive that God would get me through this. By this time, I knew almost all the instructors. We were friendly and joked around every day. But I knew they were concerned. I could see it on their faces.

ANOTHER DUMB MOVE

How many times will the Lord step in and save me after a careless mistake? I had just returned from my session.  Being tired, I lay across the bed, resting. “I need to go to the pharmacy to pick up a few items” my wife said. “Let me change you over from that bottle to the oxygen concentrator. I will be gone for a while,” “No, I still have about 15 minutes left in this bottle. I don’t want to waste it.” “Okay, don’t fall asleep,” as she walked out the door.

Fifteen minutes later, I woke up, having difficulty breathing only room air.  I was confused. All I could think of was, “I have to change the empty bottle to a full one.” I rolled off the bed onto my knees. In front of me sat the empty O2 bottle and a full one right beside it. Taking the regulator off of an empty bottle and transferring it to a full one, was a task that only took 20 seconds, under normal circumstances. I had done these many times before. But as each moment passed, I was becoming weaker and more disoriented.

My hands were trembling, as I took the regulator off of the empty bottle and attempted to place it on the full one. My fingers weren’t working very well at all. As I struggled to seat the regulator on the full bottle. Finally, I was able to turn the tank on. Oxygen spewed everywhere. I did not have the regulator seated properly. Turning the bottle back off, I fumbled to seat it again. Then, my eyesight began fading in and out. I was really panicking now. Somehow, in my confusion, I pushed the bottle over. It slipped out of my grasp and fell right on the carpeted floor. I had to get it up and try again. I leaned forward to retrieve the bottle, but found my arms were like spaghetti noodles. I put my hands down to stop myself, when my arms buckled. I could not stop myself. Falling directly on to the sharp edges of the regulator, it cut a gash in my forehead. Bleeding profusely, all over myself, the bottle, and the floor, I thought, “I must get the bottle and myself, upright.” Somehow, I was able to muster enough strength to push myself off the bottle, before crashing back down on it again.

I rolled over onto my back, my breaths slow and shallow. I was staring at the ceiling, while thinking, this is it, “Lord I’m coming home.” A Peaceful calm came over me as I stared at the ceiling, expecting to see my Savior’s face at any moment. Not at all frightened, I had accepted that I was going to die.

An angel’s voice, spoke my name, “Phil, are you alive?”  Again, “Are you alive?” The Lord had sent an angel to save me. That was the sweetest voice that I ever heard. He was not quite ready for me, yet. I managed a feeble “yes”.

My wife had come home early from shopping. She quickly read the situation, readjusting the regulator properly, seating it onto the bottle. Turning it on full blast, she placed the nasal cannula on me. The oxygen felt so cool and rich as it filled my diseased lungs. She turned and dialed 911. You know that it was the Lord’s hand saving me, since when does any woman go shopping and come home early. This was maybe the fourth or fifth time that God had intervened to save me.

THE EMS

By the time the EMS arrived, my wife had helped me into a chair and was cleaning the blood from my face. I felt nearly normal by then. They must have seen all the blood, when they walked in the door, and thought, “where’s the body?” They began their assessment of me while I explained how all this happened.

When they had finished their assessment and bandaged me up, they rolled the gurney over to the chair and said, “let us help you onto the gurney”. To their surprise, I said, “no, I’m not going to the hospital.” “But you need stitches. You could have a concussion. We can’t leave you here. We need to take you to the hospital.”

I signed their waiver, releasing them of any responsibility, agreeing to go to an emergency room, myself. I thanked them, and as they left, I rightly thought, “if I go to the hospital, it could knock me out of the program.” There would go any chance I had for a lung transplant.

THE BLESSING IS NOT OVER

The next morning, I went to my session with a big bandage on my forehead. When asked, I downplayed the bandage, saying, “a minor accident.” That seemed to satisfy them.

It was Thursday. I finished the session, as always. I was able to do all they asked, while using the 40 liters of oxygen, (my seventeenth session). As I was switching back to my own oxygen bottle, the director of the program came up to me and said, “Mr. Wilburn, we have decided to take you out of the pre-transplant program.”  As my heart began to sank, in her next breath she said, “We are going to put you on the transplant list.” “Thank you,” I said, as I wiped a tear rolling down my face. Hallelujah! Praise the Lord I was officially on the list! She told me that it was the consensus of all my physical therapists, that I was ready. I needed no further sessions.  I did the tour around the facility, thanking everyone, who by now, were friends. Later, I learned that they all thought that I only had weeks to live. That, I probably would not make the 23 sessions. They wanted me to have a chance at a transplant.

THE WAIT

That night, we called our family to celebrate the good news with them. I had no idea how long the wait would be before getting the call to come to the hospital. It could be days, weeks or months! I was going to stay positive! God had pulled me through the last five crises to bring me to this point. I could not think that he would let me die, while on the list, after all those close calls. We prayed and gave thanks for all that he had seen me through and that I would receive the call soon.

I did not have to wait long. I got the call, the very next night. It went something like this, “Mr., Wilburn?” “Yes?” “We have a set of lungs. Can you be here in 30 minutes?”  I said, “I can be there in 15.” We grabbed a small ‘go bag’ that I had prepared and left right away. We arrived about 7p.m. and was directed to the prep room. There, I changed into an OR gown. Then, they shaved my chest, took my vitals and gave me a chest x-ray. All that took about an hour and a half.

Once the preparations were complete, the enormity of the situation hit me. Excited, anxious, positive, apprehensive, I ran the gamut of emotions, while we waited. Once the lungs arrived, they had to be evaluated by the surgeon. After four hours of waiting, I was told that the lungs were not a good match for me. They told me that was what is referred to as, “a dry run.” We returned to our apartment about 11:30. My wife and I prayed for the donor’s family. That the lungs would be a good match for someone. I felt that they had probably called more than just me to the hospital.

Three days later, I got a second call. We rushed to the hospital and went through the same prep, only to have the same results. The call came it at 10 p.m. We were there until 2 a.m.  We followed the same routine, pray, sleep and wait for the next call.

My oxygen needs were escalating daily. But I remained positive when, eight days after the first call, I received the third one. We arrived at the hospital about 7 p.m. After going through the prep, again, we waited. We were expecting for them to come tell us it was another dry run. Then about 9:40, our nurse came in, pushing a cart of medications and syringes. They had never done this before. We asked with excited anticipation, “is it a go?” “Yes,” he said, “it’s a go.” Just then, the anesthesiologist came in and began to tell us how things were going to go down. He gave me a shot to calm my nerves. The last thing I remember, was being wheeled out of the room and saying goodbye to my wife, as I was carted off to the OR.

A BEAMING SUCCESS

I woke up Sunday morning, about eight. I couldn’t figure out where I was. I couldn’t remember a thing. A nurse walks in, “congratulations, Mr. Wilburn!”, she says. “For what,” I ask. “You have two healthy lungs! The operation was a beaming success!, I’m told.” The effects of the drugs were still wearing on me, as I was trying to remember the night before, when my surgeon comes in and says, “The operation went great. You have a new set of lungs, or actually, gently used lungs.” I did not know the age, sex or race of the lungs received. Just that, they were good lungs.

Soon after, the surgeon left, my wife and son came in. I had been unconscious for about 30 hours.        “Well Dad,” my son asked, “how does it feel to breathe without that nasal cannula stuck in your face?” “Great,” I said, taking a deep breath, as I realized for the first time I was actually breathing on my own.

We sent a prayer up, for the family of the donor. Their son or daughter had donated their lungs, to save another’s life. Their last act had been a selfless one. (To be a donor, just check the box, when registering for your driver’s license.)

THE RECOVERY

The next day, I was moved to a private room. Later, that same day, a physical therapist got me up. He had me walk about a hundred feet and back, with a special walker, that could handle all the tubes, bottles and paraphernalia, that was attached to me. They won’t let you lay around, in recovery. Pneumonia is a real possibility if you do so. With the therapists help, and great difficulty, I got up and walked at least two times a day. Every few days, they would remove a drainage tube and take away one less thing that I had to carry on the walker.

On the sixth day of recovery, I went into AFib, and my blood pressure dropped, just as I was preparing to walk. Before I knew it, the room was filling with nurses. First, they tried medication. When that didn’t work, the doctor that was present, made the call to send me up to ICU, to shock me back into rhythm. Everyone was acting very concerned, but I was oblivious to the lie threatening complications that this posed.

Later I found that I could have had a stroke or heart attack. Blissfully ignorant of this, I rather enjoyed being rushed up to ICU on a hospital bed, with wheels. One guy was pushing, while one guy steered, Yet, another guy raced ahead to trip several automatic doors, along the way. Flying down the halls and around corners, we only stopped momentarily, to wait for the elevator. Once we were in the ICU, with one shock, I was back into rhythm.  After 3 or 4 hours of observation, I was sent back down to my room. The next day, my doctor asked me how I was doing, I told him that I felt like I had been kicked in the chest, by a mule. He said, “since we have to move the heart around, while installing the lungs, it is not unusual for some patients to experience atrial fibrillation.”

As I lay pondering the events of that morning, my wife walked in. She brought with her my phone and computer so that I could start communicating with people. I explained to her how serious it could have been. “God, or his angels, were accompanying me,” I told her. After we prayed, she told me of the telephone calls that she had received from well wishers. My brother, who returned to North Carolina, was updating everyone on the success of the surgery.

My son, Chan and my nephew, Terry were a great help to my wife and me. They relieved my wife from staying long hours, at a time. They also helped me out of bed, giving me encouragement to keep walking every day. The goal set for me was a one-mile route around the halls of the recovery floor. Once I was able to accomplish that on my own, I would be released to the post-transplant program. Just sixteen days after my operation, and no longer encumbered with paraphernalia, I reached the goal and was released from the hospital.  I had one more bridge to cross, the post-transplant program. This was the same routine as the pre-transplant program. I had 23 sessions to complete. But, just fifteen sessions into the program, they told me I was ahead of the curve and needed no more rehabilitation sessions. They released me to go home.

HOME

I am home now. As of this writing, it has been nineteen months since my double lung transplant. There have been a few speed bumps along the way, a mild acute focal rejection, referred to as a 1A rejection. That was treated with a regimen of prednisone. Then in February 2023, I developed another mild case of Covid. The Lord was looking out for me. I am doing very well. I return to Duke for tests every three months.  I lift weights at the gym, ride a recumbent bike five miles, every other day. And I occasionally walk a mile around the neighborhood. I leave you with a few parting thoughts to ponder.

CONCLUSION

Our God is compassionate. He loves us and hears our prayers. He gives us grace, (the good things we receive, when we don’t deserve them.)

He gives us mercy, (that is when he spares us from the bad things that we deserve).

We are truly blessed, when He is generous with both. We never run out of things to be grateful for.