...In Sickness and in Health.
I have the best wife ever. Seriously. When we took our vows at the age of twenty she had no idea what we would walk through together. Yes, she did a research paper on Cystic Fibrosis and knew more about it than me on paper. But, experientially it was a whole different story.
Our wedding night was our first overnight trip together, our first time sleeping together and our beginning of life together. It was both exhilarating and terrifying. Mostly exhilarating for me and terrifying for her. Ha. She learned what Cystic Fibrosis really entailed quickly living with me. Thankfully she remembered her vows, especially the part of, “…in sickness and in health.” With CF it really is a both/and.
After the wedding and honeymoon, we started our new life together ten hours from home. We both transferred from UW-Eau Claire to Boyce College, a school of the Southern Baptist Seminary in Louisville, KY. She pursued a Bachelor of Science in Biblical Counseling and I pursued a Bachelor of Science in Youth and Family Ministry. We both worked and went to school full-time. We both served in our church’s youth ministry and made good friends.
Life was great, although we had a rocky start due to a number of factors: 1. Young 2. Selfish 3. Me. But, with the help of friends, mentors, and even marriage counseling we grew together. Love is a verb not a feeling.
I had a few health flare ups here and there, but over all by the grace of God, I was able to work as hard or harder than my most of peers. I was all in. I landed my first career job working full-time as a youth pastor. At this point I was doing everything right with my health. I was doing my airway clearance two times a day for 30 minutes each. I was doing my nebulizers and even exercising daily. I was super active working with youth and playing sports.
My wife got used to the regular rhythms and the limitations of living with my Cystic Fibrosis. She took on the role of our family budget (doing the books and paying the bills), the yearly insurance process, and making sure I had all my prescriptions and supplies. She made sure I ate a lot of food and helped me make wise decisions with my health. She took full ownership of my CF, sometimes sadly, more than me.
In 2007 we took in our first foster child. Soon after we took in another child. We opened our home and said yes to whatever children God would bring our way. In 2008 we adopted our daughter and in 2009 our son came into our home. Life could not get better. Children are such a blessing. We love them more than words can express.
I was a Youth and Family Pastor with an amazing wife, two beautiful children, surrounded by great friends. Of course, there are many hardships I could go into that make this journey beautiful, real, and life giving, yet I want to stay focused on how my wife has chosen to remain faithful to her wedding vows, “…in sickness and in health.”
My Cystic Fibrosis was on a slow decline through my twenties. In the moment, you could not tell I was progressing in my disease. It was a slow fade until 2012. This is the year I resigned from my church to move my family to a new city to plant a new church called Mercy Road.
Back in 2008 I had caught a super bug called MRSA. This was on top of a couple other super bugs I already had. I couldn’t kick it. With periodic antibiotics I was able to put it at bay, but every flare up due to a simple common cold would take precious permanent lung function. From 2012-2015 I was sick constantly due to the MRSA. I caught everything.
Church planting was the hardest thing I had ever done up to that point. I let my time get out of control. I was driven and didn’t take care of myself despite the cries and warnings of my wife. Soon, it was out of control. I went through infection after infection. I had a blood clot in my jugular. I had shingles and ring worm that would not go away and kept showing up. My family was constantly sick. It was not pretty.
I shared all this with my Dad. He shared it with a friend who then called me. As I told my Dad’s friend my circumstances and options to seek his advice He said, “If your house is on fire would you just rearrange the furniture, or would you get you and your family out of the house.” I said I would get my family out of the house.
We went all in. We decided to take on Cystic Fibrosis with everything we had. This meant moving to Arizona to seek out homeopathic options along with western medicine. It meant leaving winter behind. It meant focusing on my health, something I had not done in years.
I must stop at this point and show you how awesome my wife is to uproot all she knows and move across the country to start fresh. This meant everything new. She hates new. She hates change. But, she did it with the hope of a new healthier husband and father of her children.
She is strong and brave. This meant she had to get a job. She had to give up being a stay at home mom, her dream job. The job she was born to do. The job she loved and cherished. We had to go to a format many American’s follow with two working parents. This was a big adjustment for us and our children. I can testify, a stay at home parent is the best option, if it is an option.
We fell in love with Arizona and God provided every need, including great friends and a great church home. I was feeling better and better every day and applying for a full-time position at our church. However, during the interview process I had a health flare up. This time I learned I had a new super bug on top of the other ones I already had. This one acted fast. My lung function plummeted, and I removed my name from the interview process. Soon, I was on oxygen for activity which progressed to needing more and more each month.
I was already proactively meeting with a lung transplant doctor just to gather information and be ready if needed. Through this process we had a plan A and a plan B for transplant. Plan A was the Mayo Clinic in Scottsdale, AZ and Plan B was UW Madison Hospital and Clinics in Madison, WI. We had a plan.
As I was out with the family at a baseball game my Mayo Clinic doctor called me and said they were shutting down the program for a season. They were going to conduct an internal and external review due to two recent complications that led to death. In transplant world this is normal. The program was just getting started, but has great doctors and surgeons. Sadly, we didn’t have time to wait.
This left us with Plan B. What did this mean for us as a family? This meant moving back to WI, back to the cold, within a preferred two-hour radius of Madison. Remember how my wife doesn’t like change? So, after a year and a half we moved to back to WI. This time we moved to our hometown to live with my in-laws who graciously opened their home, heart and hands to help us.
When back in Wisconsin I went on 24-hour oxygen and was in and out of the UW hospital in Madison. Next, came the bi-pap machine, the home ventilator system, as needed and during sleep. My wife’s boss generously gifted us a new electronic bed so I could sleep with by back up otherwise I could not breathe. My mobility slowly left, and my wife and mother-in-law were bringing me meals to eat at my desk in my bedroom. My son and daughter made me coupons for unlimited meals they would serve me. They are so amazing. It was humbling.
I wrote my final letters to my children and my wife to read after my death. I made a video recording and prepared my family the best I could for their next season of life. I was one infection away from seeing Jesus face-to-face. We had peace. My wife continued to work, raise the children, and take care of me. Thankfully we had lots of help from her parents and my parents as needed.
At this point I want to guide you to my wife’s blog. She picks up from here and tells the story of our journey to new lungs. She describes in detail the events with real and raw emotion. It is a fascinating story. Check it out here.
On September 2nd, 2017 I received one of the greatest gifts of my life. The gift of lungs. I am forever grateful to my donor and his or her family. I thank God every day for them and their gift of lungs. Every time I have a hardship or get frustrated I take a deep breath. When you read my wife’s blog you will see it was the fight of my/our life. It still is a battle. But, with every trial comes a new opportunity. We are excited to see what this new opportunity brings us. We have enjoyed the ride so far. We thank God for the many blessing over the years.
Our marriage is stronger. Our family is getting closer. We are more focused. Yes, we will have more trials. We will have more change. We will have to be flexible and adapt. But, we know more than ever, nothing is impossible with God.
Jesus says, “In this world you will have trouble. But take heart; I have overcome the world.”
I have the best wife ever!
“He who find a wife finds a good thing and obtains favor from the Lord.” - Proverbs 18:22
My wife just sent me an article about the iron lung, an old school ventilator system, primarily made for people suffering from polio. One man, who is 70 years old, is still using this “iron lung” to help him breathe throughout the day. He has spent much of his life with his body inside this contraption, with just his head sticking out.
Check out the video and article here.
Today I received a call from my transplant coordinator letting me know my white blood cell count dropped to 1.8. Just before his phone call, I was explaining to my nieces how caring it is to turn off their phones while hanging out with people at the dinner table. Ha. I quickly excused myself and went out to my car where I had my transplant binder and pen to write down the medication changes I needed to make due to my recent weekly lab results. This is very normal.
Yet, I could tell it was a bit more serious today. My coordinator basically told me I needed to go into isolation until my white blood cell count goes up. He said you may not want to even go back in the restaurant to finish eating, just go straight home.
Whether you are a social person like me who thrives on face-to-face interaction and touch or a person who needs a bit more alone time and personal space, isolation is hard. We are created to need each other. We are relational beings, human beings. God is a triune God - Father, Son, and Holy Spirit - three persons in one God. A true mystery. Yet, we are created in His image. We are created to be in community and unity with Him and each other.
One of the proverbs says, “Whoever isolates himself seeks his own desire; he breaks out against all sound judgment.”
Trust me, most of us who live with health issues do not want to be isolated. We isolate ourselves to get healthy or to remain healthy when needed, when the doctor orders. But, we are not made for isolation.
When you are heathy you don’t even think twice about going into public, going shopping after Thanksgiving or going to a movie on opening night. You don’t even think about staying home with a cold from work. You don’t notice when someone coughs or sniffles.
When you have a low immune system every cough and sneeze around you sends an alert, a shot down your spine. You look to move to safety. Where can you get away? You reach for your mask in your back pocket, but you check yourself, will this offend this person or make them feel awkward? Seconds later the mask is on and you are making plans to get out of the room, to safety.
Outside my hospital door was a sign that read, “Isolation Room: Gown, mask and gloves required.” Even my wife bathed me with a full gown, mask and gloves for two weeks. Can you imagine how awesome it was when the gloves came off? The moment I was able to hold her glove free hand? The first time I was able to kiss her mask free face?
Here I am at home surrounded by family fighting colds and sinus infections, isolated. Yes, praise Jesus I didn’t find out my white blood cell count was seriously low until the day after our big Haas gathering, I think. Ha. I loved playing football with my son and nephews, my brothers and dad. I loved drinking coffee and asking questions and having good conversation with my sister-in-law. I loved getting to do the dishes and enjoying the presence of family.
As I reflect on isolation, I am reminded to take a deep breath. Yes, I can breathe. I can read, write, talk, video chat, eat, and go the bathroom properly (this is a great thing). I am thankful for the many blessings I have, but most of all for the presence of Jesus. He will never leave me nor forsake me. He is with me, always.
The more isolated I am the more I experience His presence. The more I experience His presence the more I realize I am not isolated. I am not alone. Nothing can separate me from His love.
The Apostle Paul says this, “…in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.”
Nothing can separate us, the children of God, from His love. His presence. Jesus is with us.
Even though it is hard on my wife, my children, me, and others, I know Jesus will fill in the gap. I trust in His promises. He said He will never leave us nor forsake us. I take Him at His word.
If you are isolated or feel isolated, I hope this encourages you. Reach out. Reach out to Jesus. Reach out to family and friends. Use technology. Reach out the me. I would love to chat with you.
I know how easy it is to go down the rabbit hole of depression. I know the darkness. I know what it is like to feel alone. I know the emotional rollercoaster. I know the desire to just quit and die, to give up.
You are valuable! You are worth it! You are worth every penny God provides to sustain your health. You are worth going through the pain to fight with all your might, mind, body and soul.
Do not listen to the lies. The lies come from all angles - social media, strangers, friends, family, yourself, and ultimately Satan. Do not listen to the lies, tell yourself the truth.
God will breathe life into your seemingly dry bones, tired lungs and even into your despair. He will give life to others through you and your faithfulness. You have purpose! Never give up.
I want you to know your worth! I love you.
I am beloved of God.
I am sitting in Starbucks enjoying Christmas coffee reflecting on the past year. I pick a family theme every new year. The 2017 theme was given to me from my late friend Larry Eifert, “Thy will be done.” (I miss him so much.)
In December of 2016 we moved back to Wisconsin from what I like to call ‘paradise’ Queen Creek, Arizona. We loved our short time out there and wanted to sink our roots deep. Yet, Thy will be done. (We moved back due to my declining health.)
We were welcomed with bone chilling cold air, yet, the warm hearts and hands of friends and family. We moved into my in-laws home and loved the extra help and the amazing smells coming from the kitchen everyday. Thank you Nana and Papa. So many people stepped in to help us every step of the way. I can’t thank each person enough.
Our children started yet another new elementary school and new sports teams. We joined another new church. We started slowly putting roots down again discovering the best place to take our car for repairs, where to get the best fades and beard trims, and where to find the best coffee shops. You know, the really important stuff of life.
I was entering the end stage of Cystic Fibrosis. I was looking death in the face with each infection flare up. My FEV1 dropped to lower than 12% at times. I spent over four months in the hospital on and off. The medical staff became like family.
My children knew the way to my wing of the hospital spending many weekends with me and having to choose time with Daddy in a small hospital room over other things kids get to enjoy. There was no playing baseball with Dad (mom can’t throw or catch, but did/does try hard), no wrestling around, no outings like family hikes, dates with Dad, sporting events, even church services. I am so grateful for my wife, Kendra, and grandparents filling in the gap.
As my lung function continued to decline soon I was pretty much confined to hanging out in my bedroom and watching the Brewers. Yes, I had some good days and weeks where I was able to get out of the house, which was a gift. I had oxygen 24/7 and extra help to sleep at night. I had a chair and handle bars in the shower for my wife to bathe me, even that tired me out. I was one infection away from getting to see Jesus face to face.
During this time I was evaluated and accepted to be put on a double lung transplant list through the UW Hospital. I had to have my cell phone on and ready to answer at all times. Each ring made my heart skip a beat. I received the phone call three times. The third time was the charm. It is normal to have what they call ‘dry runs’.
September 2nd, 2017, I received a gift, the gift of more life, because of the love and generosity of an organ donor and his or her family. I thank God everyday. I hope to meet the family someday and say thank you in person.
It has been over 2 1/2 months since my surgery. I have been home for over 50 days and getting stronger everyday. I am taking family walks, attending sports events, hanging out with friends in coffee shops and playing ball with my kids. I even gave my first sermon in almost a year. Yes, I have had some bumps in the road and I will continue to hit some bumps, but one of the lessons I have learned is to be grateful in any and every circumstance. You have heard it said, “gratitude is attitude.”
What is the secret to contentment?
“I can do all things through Christ who strengthens me.” - Philippians 4:13
During my second ‘dry run’ I was all prepped and ready for surgery. I said “see you later” to my family and was wheeled into the a side room near the operating room. I call it the ‘holding room.’ Each of the medical staff involved in the operation comes in and introduces themselves to you. The surgeon comes in last.
My heart was beating out of my chest, yet, my mind was at peace. I asked God, “Why is my heart beating out of my chest? I need you God, help me.” After the surgeon left the room and I was alone, just waiting to be taken into the operation room. Jesus, the Great Physician, let me know He was with me in the ‘holding room’. He calmed my heartbeat, an overwhelming peace filled the room, and He spoke to my spirit, “Jedidiah, I want you to fight to the very end until I take you home. I want you to use whatever medical means possible that I provide. Trust me.”
You have to understand at this time I really didn’t want a double lung transplant. I hate pain. My Cystic Fibrosis had run its course and I wanted to go the natural way. I was only doing this for my family, particularly my children (sorry Kendra).
This was the turning point for me. My life is not my own, it belongs to Jesus. I am His beloved. If He tells me to fight I will trust Him and fight. I was no longer going through the transplant process for just my family, but for me, for the glory of God.
Today, as I write this out, I am reminded to trust God no matter what the circumstance, in life and in death. My life here on earth is in His hands. I am to live everyday to the fullest. This is how to have contentment in any circumstance.
“I can do all things through Christ who strengthens me.”
Are you grateful? Are you content in your circumstances? Can you have joy even when you are looking death in the face?
You can! I have been there. I can relate mighty warrior. Keep fighting, but not on your own, fight with the power and purpose of God. May Psalm 18:4-6; 19b encourage you today.
“The cords of death encompassed me;
the torrents of destruction assailed me;
the cords of Sheol entangled me;
the snares of death confronted me.
In my distress I called upon the Lord;
to my God I cried for help.
From his temple he heard my voice,
and my cry to him reached his ears….
…he rescued me, because he delighted in me.”
I love you! God delights in you!
- His beloved (I am Jedidiah)