In Lieu of Flowers...

In lieu of flowers, the family of Everette kindly requests monetary donations to assist in covering funeral and related expenses. Your generosity during this difficult time is deeply appreciated.

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Hello, my name is Christopher Brian Butler, I am doing this with the help of my Sister-in-law, for my brother Everette Butler.

Everette was diagnosed with pulmonary sarcoidosis shortly after his time in the Army. It remained dormant for almost 15 years. In 2012, extreme shortness of breath and fatigue returned with a vengeance. It appeared that Everette's lungs were inflamed.

There is no cure for sarcoidosis, and not much research either. After diagnosis, the VA doctors suppressed Everette's immune system with high doses of prednisone. Between 2012 and 2017 his condition remained the same until side effects from the prednisone, weight gain, made him feel worse and made it harder to breathe. In late 2017, X-rays showed lungs that looked like they were filled with pneumonia but had become scarred from sarcoidosis.

Everyday activities became too much for Everette to handle. He stopped working. He watched soccer games in the car. No more riding motorcycles. He missed countless family get-togethers. The struggle to get there and back was too much.

From his wife, Whitney Butler's perspective: In June of 2022, while on a family trip to Daytona Beach Everette’s shortness of breath got worse, accompanied by daily migraines. We called on the VA for supplemental oxygen. Within two hours they delivered enough oxygen to get back to North Carolina. That was when everything changed.

One month after that trip we were to be married. At this point, no one really knew what was going on. Everette is a very proud man and he did not want his family to know what he was going through. The wedding went on as scheduled and without supplemental oxygen. Everette fought through the day. I know he was struggling but I know he did it for me. He is an amazing man. We couldn’t have our first dance, or dance with our parents… simply because he wasn't able to.

After our wedding, we stayed home a lot and just kind of existed. We didn’t go many places, we didn’t see friends or family unless they came to see us. A couple of months after the wedding, in mid-November, Everette started showing new symptoms. He was so short of breath he would have to take a break to breathe after a few steps. The distance he could walk began getting shorter and shorter. He started retaining pounds of water and almost fainted one night while walking into our bedroom. That was it, I knew something had changed drastically because these were things we couldn’t explain.

On November 8th Everette was admitted at Wake Forest for what turned into a 5-day stay. During that hospital stay he received all types of testing and blood work. On top of sarcoidosis and lung scarring, he was diagnosed with pulmonary hypertension. His heart was working extremely hard, which had enlarged the right side of his heart.

While at Wake Forest the cardiac and pulmonary doctors mentioned lung transplant since there is no cure. We immediately told them transplant wasn’t an option because, from our internet research, the average life expectancy was 5 years. How could we put a timeline on his life like that?! So, he was discharged with new medicine to help protect his heart and manage his health.

Everette felt great leaving the hospital. He was walking all over the house, but at this point, he needed oxygen 24/7. The oxygen and medicine were keeping his heart from working too hard. In January we had a follow-up appointment with the cardiologist, where we could ask more questions. I remember asking 'How long can he live this way' thinking we could maintain with the medicines and the right diet. Her exact words were, “Life like this is not sustainable.” She began to tell us that transplant was the only 'fix'. She told us that if he had new lungs, he would be healthy again. She told us that lung transplants were only done when the “timing was right” and it was worth going to Duke for an evaluation.

March 6th - March 10th was one of the saddest times of our life. When the surgeon told us Everette was dying, I broke down. Everette sat there staring into space. The surgeon assured us that Everette would live longer with new lungs than with his own. It’s hard to describe the rest of that conversation, but we left feeling safe, and that we were in good hands. 68 tests were done over 5 days, we were exhausted… especially Everette. I could tell his mind was racing…

We left Duke and returned home to our family. We waited for a committee of doctors to review the test results and discuss his case. It was the longest weekend ever. On Tuesday, March 14th we received a letter from our transplant coordinator stating that Everette was in the time frame where the transplant needed to be done. They gave him goals he needed to reach and scheduled more testing for the end of May. We know now that if everything is a go, he will be listed for transplant after those appointments. So here we are, preparing for his second chance at life.

With transplants, there will be many expected and unexpected expenses. Everette and I will have to relocate to Durham once the transplant occurs if not sooner. The kids will stay in Winston-Salem during his recovery. We have no idea how long recovery will take but we are ready for the fight.

If you know Everette he has always been someone people could call on for help. Day or night. Over the past few years, you may have noticed him changing, even though he kept most of his pain and symptoms to himself. He lives by the mindset of "never show weakness" and "keep pushing through the pain". No one would have ever known by talking to him that he was slowly dying. He has lost friends along the way because instead of talking about it, he avoided many situations where he knew he would struggle.

Unfortunately, he can not avoid this any longer. Everette and his family will soon have to relocate to Durham in order to have the transplant done. A team of family and friends will be at helping with the kids, pets, and a very long recovery. Life will forever be different for them.

We are hoping with the help of our friends, family, and community that we can provide support through this tough journey the Butler family is about to take.