Take the Next Step

 

planeAs I boarded the charter jet that the Cleveland Clinic sent to pick me up in the late-night hours of May 22, I thought I knew what lay ahead for me. “Let’s get this lung transplant going,” I remembered thinking. The day before my oxygen supply company had delivered a second concentrator to our home. My need for supplemental oxygen was more than one concentrator could provide, so they hooked up this new machine and connected them with “Y” tubing. I was now able to set the flow rate as high as 20L per minute. It was a very sobering Saturday that I spent in my recliner, until dinner preparations were interrupted with “the call” from area code 216. A lung match was available for me. With little hesitation I accepted and said I was ready.  Looking back now, I knew so very little.

Since my diagnosis with IPF about two years earlier I had been reading a lot of material that informed me of what was about to take place. I mentally reviewed the basic facts that led me to needing this surgery.  “Approximately 50% of all IPF patients die within the first three years of diagnosis.”  “I had passed all the regimen of tests leading up to my acceptance as a lung transplant candidate.” “The only cure for IPF at this time is to have a lung transplant.” “The Cleveland Clinic is one of the leading transplant centers in the United States.” I rested, dozing off and on during the flight to Cleveland.

The average time for a double lung transplant surgery is about 12 hours. Mine was completed in less than ten. The average time spent in ICU after surgery is up to two weeks. I was being prepared to move out of ICU in 10 days. I remember thinking, “a couple weeks, max, is all I will be in the step-down unit. Then I will be discharged from the hospital and have to stay in the Cleveland area for a couple months.” I was planning to be back home in Charlotte before fall at the very latest. Today, March 5, 2017, I write this first blog since the transplant from Apartment #502, just three blocks from the Cleveland Clinic.

In preparation for transporting me to my new room an air bubble had released and traveled to my brain. All I can remember from the resulting stroke last June is hearing my doctor yelling in my left ear and my wife screaming in my right ear, pleading with me to respond. I did respond,… four days later. I was told the good news first: during the CT scan to discover why the stroke had happened, the doctors inspected my new lungs and noticed a dangerous separation occurring. They were able to repair it before “a catastrophic event” had occurred. The bad news: the stroke had paralyzed my right side. I had no movement in my arm and only could kick my leg a little. Even the “good news” had many troubling aspects to it. I felt helpless and hopeless.

Some of the many ups and downs of my health these past nine months have been recorded by my family and can be reviewed at the link provided below. As difficult as my physical journey has been, the mental aspect is far more challenging. That is what leads me to begin blogging again. Our struggles in life are profoundly affected by what we believe. The details of what is currently causing you frustration, pain, and worry are different than mine but the antidote is exactly the same. You will need a patient perseverance in doing what is right if you are going to be successful in facing your challenges. There is always hope. However, hope takes faith. Faith is what you believe, and will be the daily fuel you need to persevere through your troubles. I want to be an encouragement in your walk of faith.

The theme connecting these different blog entries in the days ahead will be the same. God amazingly shows Himself faithful in every situation of life. We just need to take the next step in faith with God, or just towards Him, and He will reveal more of Himself in the circumstances you are facing. With God all things are possible. You have to believe.

Let’s go!

(If interested, the link to my health history is here: https://www.youcaring.com/tim-cox-574785.)

Seriously…Random Thoughts

I have started many blog posts that have never been finished because there is no simple conclusion. Life can be very messy and confusing, which is kind of the opposite of “simple conclusions.” Deep down I just want everything to be fair, and really deep down I want to have significant control over what is determined as “fair” in my life. Here’s a glimpse into some of my recent thoughts:

After the most recent check-up my “score” increased which means I moved up the priority list for receiving a transplant. My declining score in certain tests means I am slowly getting worse. During this visit I met several other pre-transplant candidates and heard a little of their stories. It made me realize that this is not a numbers game or just a simple score to be recorded and compared. Other men and women with hopes and dreams and families will continue waiting when I am chosen. I don’t know all their names but I pray for them. I want everyone to receive a new set of lungs.

Life after a successful transplant focuses on learning to stay as healthy and free from infections in order to avoid organ rejection. While at the Clinic recently I met a healthy transplant recipient of 2+ years who was choosing to be very cautious in all his exposures. While talking with him we learned that this meant since his transplant he had never gone to a grocery story, attended a movie, doesn’t shake hands, and won’t loan his pen. He admitted that he was following instructions to the “letter of the law,” but it has caused a lot of conversation about my future choices. I cannot imagine living in that much of a “bubble.”

Being out in public while rolling a tank of oxygen behind you definitely gets some extra looks. More than once I feel like I was going to be asked for some verification that I have a discharge slip from a hospital. For fun I try to hold the door open for other people when entering or exiting a store. I have found that very few people can accept that gesture from someone who is hooked up to supplemental oxygen. They do some amazing gymnastic moves just so they can hold it open for me, even though I was naturally in position already. (My definition of fun is quite limited these days.)

To be “on call” for a major surgery is something you prepare for and then have to forget it could happen. From any given minute of any day I could be 6-8 hours away from lying on a surgical table in Cleveland. To dwell on that reality messes with your day-to-day living, yet to not plan for it would be foolish. My goal is to be prepared, and yet I will be shocked when it actually happens. Since we have gone this long without being called, I am kind of hoping they wait another week so I can make TJ’s graduation. Or I may not be called until this fall…..

More than once I have tried to write a blog that would honor and thank the family who will experience the tragic death of a loved one. Something will happen to someone who is now in great health and because of his or her death I will be able to breathe normal again. It is hard to imagine me benefiting from their loss. No words can be written or spoken to cover their grief. I pray the extended family will personally know the peace of God that is a comfort and anchor to the soul. The identity of donors and recipients is never revealed, although anonymous letters can later be exchanged through a third party. I just cannot say “thank-you” enough.

The theme of these ramblings is this…God is faithful; God is in control; He has a personal plan that can be trusted. Some days are better than others for me as I learn to trust and wait.

Let’s go!

Experience Never Gets Old

The Grand Canyon has a magnificence and grandeur that is impossible to fully describe through words. The one time I have experienced its rugged beauty was on a five-day backpacking “hike” over some of the most stunning ribbons of trails in nature. Pictures didn’t do justice and yet I took hundreds. It is one of those special moments of time you would love to recreate and experience again. Only this time I would not be surprised at all the warning signs.

In order to create a healthy respect for the dangers of hiking the canyon, the Park Service has posted many strong warnings to discourage casual day hikers. Even as you stand at some of the trailheads with your large bottle of water and sunscreen, signs state eye-opening facts and stories about people who have died doing exactly what you are thinking of doing. It is such a stark contrast to the fun of all the breezy overlooks offering spectacular vistas to tourists enjoying the souvenirs and snacks in the many gift shops. The difference for me was I had a guide.

The man leading our group of friends had hiked this route several times before. Everything in our 55lb backpacks had a purpose. We were briefed several times on what to prepare for and how we would face expected challenges. Even with all these preparations those five days and nights brought many surprises and dangers that had us all questioning what we had gotten ourselves into with this trip. Our guide was an invaluable resource that kept us focused and made the trip an unforgettable experience.

As I face the realities of decreasing lung capacity and the expected future of a transplant surgery I am thankful for an incredible team of doctors, family, caregivers, and friends who all help make this journey much easier. I am also extremely thankful for an incredible guide I have who helps me prepare for my pulmonary “grand canyon” experience ahead. David struggled with the same disease I face and over two years ago had a double lung transplant. He calls it his “second wind” and he continues to do extremely well. Although we both know that no two journeys with this disease and surgery are exactly the same, David is my “go-to guide” when I want to better understand or discuss any current reality or imagine a future possibility.

The key to any guide’s answers and advice is that they have an understanding because of facing the same or very similar journey. A good guide gives clarity, perspective, encouragement, correction, and sometimes just listens. For many years I have taught on marriage and parenting topics and encouraged everyone to have a mentor relationship with someone who is about five years “ahead” of your parenting or marriage journey. It is not an age thing but rather the level of experience traveling down a similar trail. I am so grateful for David, my personal “lung mentor.” May we all have excellent guides as we learn to struggle well through the journey of this life.

Let’s go!IMG_0663

Expecting the Unexpected

IMG_0784[1]“Mr. Cox I am calling to inform you that after reviewing your case the doctors have decided to list you for a lung transplant.” I was speechless. I had prepared to hear those words next fall, not three days before Christmas.

My case review had been delayed for two months because of my continued strong test results. Many different care providers thought that it was very likely that I was still “too healthy” to qualify yet for a lung transplant. To now hear that I was going to be “listed”…, I just hadn’t prepared for that possibility.

In an instant my mind and emotions had an internal collision that caused blank thoughts, a queasy stomach, 179 questions, excitement, confusion, and an overall inability to focus. I began to just write down the information being given to me. There were some procedural next steps before the listing was official but everything should be done by early January, I was told. I hung up the phone and cried.

It is very humbling to qualify for a lung transplant. There are many patients with this disease who for many different reasons cannot qualify for a transplant. There are many more who have died before they could get on the list. When your only known cure is a surgery that you can’t qualify for, it just changes so many things.

It is scary to qualify for a lung transplant. My doctors have been very open and direct in preparing us for the realities of transplant surgery and life afterwards. One example was spoken to me as an encouragement to continue my current rehab routine so I could be as strong as possible in order to “recover from being hit by a car.” (There was no mention of a seat belt or air bag. I think he meant in his word picture that I was walking when hit. I do find myself being more cautious when I cross the street now.)

Overall, I am excited about this unexpected news. Eighteen months ago we began fighting this disease with the goal of pursuing a lung transplant. There are many transplant recipients that are thriving with their new lungs, and in an unknown number of months from now I aim to be one of them.

As of Thursday, January 7, it became official. I am on the national lung transplant list. Until I get the next call, everything remains the same. In reality, everything has changed. That is what happens when the “unexpected” strikes.

There are many things that help with the surprises of the unexpected. Having great friends and family who listen well while you process out loud is a tremendous help. Exercising your faith in the One who predicted His own death and resurrection, and then fulfilled it all in front of witnesses, – knowing Jesus Christ is a “game-changer” in dealing with unexpected news. Slowing down enough to value all the thinking and feeling that change demands, rather than just doing every new task, also helps when we absorb new realities.

Actually, our choices of today are preparing us for the surprises of tomorrow. You can’t really expect the unexpected. However, you can learn to live with faith, hope and love through all the joys and challenges life brings.

Let’s go!

Looking Back, Looking Ahead

The last couple months have gone by quickly and I have not taken the time to write down all the thoughts that sometimes linger and more often zip through my mind. Here are some of my reflections in condensed form:

  • The traditions and memory making around the holidays are enjoyed and felt more deeply when battling a serious illness. The gift of a longtime friend is treasured. An uninterrupted conversation filled with laughter, listening and love is priceless.
  • There are a lot of sick people fighting very tough battles on a daily basis. As challenging and limiting as my health is, I often feel like I have a sprained ankle compared to the illnesses others face. No matter what the diagnosis, if a person is supported with caring friends and family there is an encouraging resolve and strength. You can’t generate enough positive energy by yourself when facing serious illness.
  • For the many people who enjoy great health on a daily basis…take care of yourself! I see a greater emphasis on understanding the care our bodies need which affects what we eat, how we live, and should limit our choices. I am surprised how many people live in fear of what illness they are going to face, which is an unhealthy way to live! Exercise, eat wisely, and pursue healthy choices in every area of your life. You will be stronger to face every challenge in your future and to be of help to others along your journey.
  • The health of your soul is more important than your body. We have been given life through the will of a loving Creator who longs for a restored relationship with every person through His Son, the Lord Jesus Christ. In knowing Him there is a daily peace no matter what affects your life. There is also a hope that triumphs over the reality of death.
  • We live in a world where violence and tragedy will continue to bombard our newsfeeds and may even intersect with our own path. May we respond by increasing our love and care for others in need. The greatest danger is that we stop caring for those who come along our path who we can help. Rather than pull back in fear or fatigue, step forward and encourage those who you are prompted to assist. In doing so you fight against the same evil that has erupted in the most recent headlines.

I cannot say “thank you” enough to the many people who have supported and loved my family and I through my ongoing battle with IPF. The prayers on our behalf are especially encouraging. I look forward to the new year ahead as we learn and grow together.

Let’s go!

Breathe Deeply

Go ahead. Take a deep breath and let all your air out slowly. Do it again and enjoy. You probably take this simple luxury for granted. Actually, there are very few things you do that are more important than breathing.

I would love to take a deep breath again. I hear it is one of the joys that a lung transplant patient enjoys after surgery. Until then I experience this “inner squeeze” if I try to inhale deeply. My whole chest tightens as my lungs fight back against the natural call to expand. My mind thinks, “If I quickly try again the next one will be a full breath;” however, the constriction from scarring is way too much and the IPF “python” wins again. The competitor in me doesn’t like to lose in anything. The realist in me decides to fight back in other ways.

My doctor and hospital visits usually include several lung function tests that require me to breathe deeply and exhale. To add to the torture a “clothespin” is placed on my nose so everything exhaled can be measured since the only escape path is out the mouth. My lungs rebelliously kick back with involuntary coughs and yet there is no reprieve. “Let’s try that again,” are dreaded words no matter how nicely spoken.

Until my next doctor visit I am choosing another motto. I am switching away from the frustration of trying to “breathe deeply” and embracing a new slogan. Because of the kindness of a wonderful church family and after many years of service I am enjoying a refreshing sabbatical. Part of the time is spent in the beautiful state of Maine, which is especially stunning as the explosion of fall begins earlier than the calendar declares. As we recently crossed the state border and pulled into the Welcome Center these words greeted us, “Breathe easy, you’re in Maine.” For now I can live with that motto. “Breathe easy.”

Let’s go!Maine

So Many Thoughts, So Much Grace

The most recent tests and appointments are finished and there continues to be so much to process. Thanks for your interest and support as I try to keep friends and family members informed about my journey battling pulmonary fibrosis.

I continue to be in overall great health, other than the slow and steady decline of my lungs. I have completed all the tests and interviews, and if grades were given then I’ve earned an “A” at The Cleveland Clinic school of transplant preparation. My file is complete and a diverse team of doctors will meet in the next couple weeks to discuss everything they know about me. At the end of that meeting I should be given a number – my Lung Allocation Score (LAS).

That score is determined by an equation using my test results while factoring in other issues that they have found affect transplant readiness. It’s kind of like golf, the higher the score the worse you are. If they determine my score is in the mid-50’s or higher, I may be looking at the possibility of a transplant in a few months. A score in the 30’s or lower will tag me for “more waiting ,“ while they closely monitor my health and update my score. I don’t mind getting bad scores in golf, but I’m not ready for a high number on my LAS.

There are a lot of sobering statistics concerning the success rate of lung transplant surgeries. My doctors have all been “kindly direct” about the percentages and realities. Those numbers are easier for me to talk about personally than type on a screen. I would love to have the cure without the risks. That is not how all this works, and we all know that is not how life works either.

What fills in the gap between the risks of reality and the hope of a cure? The answer to such a simple and profound question is found in the beauty of God’s grace. I’m still discovering how immense and powerful and personal is the grace of God. He invites me to draw near to Him as He rules from a “throne of grace” giving mercy and help to those in need. (see Hebrews 4:16). I’m optimistic about the future, but that is possible only because of God’s amazing grace.

Let’s go!