By David Schriemer, MD
“The future is brighter” says an understated Todd Weinberg.
That wasn’t the case in March 2013. On oxygen 24 hours a day, lungs measuring 16 percent of expected function and unable to walk across the room without getting short of breath, the future was dim. Todd was not sure he’d make it to his 44th birthday in April.
Todd’s journey to this point was not easy. At age 5, not gaining weight as expected and suffering from digestive problems, Todd was evaluated at Mott’s Children Hospital in Ann Arbor, Michigan. Parents, Mel and Jo were told their middle child had cystic fibrosis. With good medical care he might live to 17 or 18 years of age.
Vicksburg High School (VHS) Graduate
Mel and Jo were determined to have Todd live as normal a childhood as he could. He went to school in Vicksburg taking a handful of pills with each meal. In middle school, he was healthy enough to play on the basketball team. At 15 years old he had his first hospital admission for a lung infection. Despite recurrent lung problems he played percussion in the Big Red Machine, admitting that some days it was pretty hard to march. Todd graduated from VHS in 1987.
Farming is His First Love
After graduation, Todd did what he always wanted to do: farm. Todd reports the first word he said was “tractor”. He had always worked on the farm with his dad, now he could farm full time. So he did. But, usually after the busy times in the spring and fall, Todd would need to get a “clean out”: intravenous antibiotics and breathing treatments to clean out infections and mucous from his lungs. At first this was done in the hospital, but then as technology improved he could get intravenous antibiotics and breathing treatments at home. This pattern of twice-a-year “clean out” continued for many years.
Inevitably, Todd’s lung function declined. In 2005, his pulmonologist introduced the idea of a lung transplant.
He was referred to the University of Michigan and followed by their transplant team since 2006. At that time, his lungs were functioning at 28 percent of what was predicted for a healthy 37 year old man of his size. He was told that when he was on oxygen and couldn’t walk across the room before getting short of breath he would be ready for a transplant. He continued to farm.
Transplant Advised
In 2012, it became clear the time was getting near for a transplant. To improve the chances of successful transplant he first needed an operation to prevent reflux of stomach acid into his airways and new lungs. On May 14, 2012 he had laparoscopic surgery to tighten the sphincter (or valve) at the lower esophagus to prevent acid reflux. Fourteen days later while checking irrigation equipment in the field, the University of Michigan called to tell him that now they could put him on the transplant list. He agreed. He had to provide them with his cell phone number and four other contact numbers for them to call if he didn’t answer his phone. He would need to get to Ann Arbor within four hours when the donor lungs became available.
September 27, 2012 at 5:40 p.m. while shelling corn he received the call: “We have lungs for you”. “I went numb; mind, body and spirit,” says Todd. By 8:30 p.m. he was in the cardiovascular unit at the University of Michigan where a central line (a large IV placed in the neck) and arterial line (a catheter in the radial artery at the wrist) were placed. He was taken to the operating room at 1 a.m.
At 2 a.m. the surgery team decided the donor’s lungs were not of good enough quality. Surgery was cancelled. He returned home, took a nap, then returned to harvesting corn. He was more relieved than disappointed. He realized that emotionally he had not come to grips with the reality of lung transplantation.
Cancelled Again
He finished the harvest that fall. At midnight, December 12, 2012 he was called again. By 2:30 a.m. he was in Ann Arbor. Central and arterial lines again were placed. Surgery was scheduled for 1 p.m. Again the donor lungs were not satisfactory and surgery was cancelled. This time Todd reports “I was mad at the world for a while.” Shortly thereafter he realized how fortuitous it was that surgery was cancelled. He had an infection in his intestines (Clostridium difficile) that could have been devastating if he had the transplant and put on anti-rejection drugs that suppress the immune system. As it was, doctors were able to treat the infection successfully, but he was off the transplant list until it was cleared.
By now Todd’s breathing was much worse. Everything was an effort. It was like breathing underwater. Lung function was now 16 percent of what predicted for a healthy 43-year-old man.
All is Ready for the Surgery
Saturday, March 9, 2013 at 8:15 p.m., he was called again by the U of M. That night as he and his mother, Jo, drove to Ann Arbor, he told her, “I have a sense of peace about this.” Jo replied that she did too. At 11 p.m. he was in Ann Arbor and lines were placed again. Surgery was scheduled for 4 a.m. Todd recalls that night the clocks went ahead one hour for daylight savings time. He would wait one less hour. “It’s a go.” Surgery was done early Sunday morning. An incision was made horizontally across the entire chest and his chest was opened. Todd’s severely diseased lungs were removed and donor lungs placed. He was on a breathing machine for five days. Even in his drug induced mental fog in the ICU, he clearly remembers his mother gripping his hand and seeing his father’s face. He was up and walked a short distance the fifth postoperative day. He spent 11 days in the intensive care unit and 24 days in the hospital overall. Sore and weak he returned home. But five days later, on his birthday, he needed surgery in Ann Arbor to drain a painful hematoma (collection of blood) on his chest wall. Almost half a liter of blood was removed.
Third Time is the Charm
Todd had to learn to stand from a seated position without using his arms because his chest would hurt so much. He had to walk every day to gain strength. Over 20 medications to prevent rejection of the transplanted lungs and prevent infections had to be taken on a strict schedule. Laboratory tests were done weekly.
Spring planting approached. Todd reports, “I had more offers to help than I could shake a stick at.” The agricultural community was very supportive. Clay Rhoades, who had worked for Todd part-time before, stepped up and completed planting even sooner than other neighboring farmers.
One month after transplant, his lung function was 71 percent of predicted for a healthy 44 year old man. He was no longer on oxygen. He was no longer short of breath. Six months after transplant his lung function is 93 percent of predicted for a healthy 44-year-old man. Breathing was easier. He notes that even his posture is better as his lungs expand normally. He is still sore. He can’t lift, push, or pull. His breathing no longer limits him but his stamina does. Follow-up testing has all been favorable. Four postoperative bronchoscopies (a procedure to look down the windpipe and bronchi with a fiber optic scope to inspect the lungs visually) have all shown his lungs to be healthy.
In retrospect, Todd sees the timing of his transplant as a “God thing”. He wasn’t emotionally ready for the first cancelled surgery. Cancellation of the second surgery prevented what could have become a fatal infection. The third and successful surgery was on Sunday morning. “I knew that at least six churches were praying for me that morning…It’s humbling when people say they have been praying for you.”
Back on Track
Todd has never indulged in wondering. ’Why me?’ “What good would that do?” Waiting for the transplant wasn’t as anxiety provoking for him as it was for many around him. As a farmer, “I’m used to waiting.” You can’t speed up the time to harvest, you have to wait.
Being given new life has put things in perspective for Todd. “I’m not going to worry. If I can’t do it today, I’ll do it tomorrow.” The future is brighter.