“I was diagnosed with liver disease in the spring of 1999, and I knew from the beginning that I would eventually need a liver transplant,” said Micah “Daniel” Johnson, who underwent a double transplant over the holiday season.
A Litchfield native, Daniel Johnson is the son of Leslie and Sharon Johnson, and the grandson of Alma Ruth Johnson of Litchfield, Alvin and Martha Miller of Hillsboro, and the late Barbara “Ann” Miller. After graduating from Litchfield High School in 2000, he went on to work for Neil Tire and later as a service technician and then support manager for Walmart.
Despite his prognosis, he was determined to live a normal life. He met his wife, Tiffany, in 2006 and the two married on Oct. 27, 2007. They welcomed their first son, Lee Allen Johnson, in May 2009. Two short years later, their second child, Jacob June Johnson, made an early appearance at 25 weeks premature, weighing 1 lb., 10.6 ozs. He stayed in the NICU for six months and five days before the couple was able to bring him home. Unfortunately, that was only the beginning of the young family’s experience pacing the sterile halls of a hospital.
“My health really began deteriorating after Jacob’s birth. Around May 2011, I went back to my specialist in St. Louis because I had started experiencing severe abdominal pain. He told me that my body wasn’t physically capable of working anymore and helped me get on disability to supplement the income loss from having to leave my job,” Johnson explained. “My illness affected every part of our lives, from being able to support my family to being able to actively engage with my boys. I am an active person and love being outdoors, so on my good days I would try to camp or take my boys fishing. The bad days were awful, we just tried to make the best of it and live one day at a time.”
Immediately after Daniel’s health began to plummet in 2011, the couple was able to get him into the Mayo Clinic in Rochester, MN, where he doctored until 2016, when the commute became too much of a strain for the family. Johnson returned to Saint Louis University Hospital until he was recommended to transfer to Northwestern Memorial Hospital in Chicago to be placed on their transplant list. Between March 2017 and his successful transplant on Saturday, Dec. 26, Johnson received four calls for a potential liver transplant, however none of them worked out.
During this time, his kidneys started to fail and in Sept. 2019, he was placed on dialysis. A year later, in September 2020, Johnson found out that his right kidney had developed renal cell carcinoma and needed to be removed. The surgery took place in October 2020, leaving Daniel with his left kidney functioning at 20 percent and in need of both a liver and a kidney transplant.
“I went to Chicago for a follow-up appointment on Tuesday, Nov. 17th. I was also scheduled for a stress echocardiography (A procedure that determines how well a person’s heart and blood vessels are working.) as part of my reevaluation for the transplant list. The first appointment went well, but once they started the stress test they discovered that fluid was building up on my heart and lungs again. They admitted me immediately,” Johnson explained.
Daniel spent most of the following month in the hospital, where his doctors informed him that he needed to be closer (than Litchfield) in the occurrence that a liver and kidney became available.
“Through God’s grace we had a wonderful couple who helped us pay for an extended stay in Lombard, which is only about 30 minutes from where Northwestern Memorial Hospital is located in Chicago, so the boys and I were able to relocate closer to Daniel on December 14th,” Tiffany Johnson stated. “The boys have been enrolled as remote learners this year, which made relocating quickly more manageable. It wasn’t easy, but we were so grateful to be together as a family for the few days Daniel was released from the hospital.”
The Johnson family received another Christmas blessing when Daniel received the call that there were potential liver and kidney matches waiting for him.
“We received the call that there was a potential donor around 11 p.m. on Christmas night. On the morning of the 26th the hospital called to let us know that the donor was a match, so of course we said yes. But we had gotten ‘the call’ on four separate occasions, so I didn’t really let myself believe that the transplant was really going to happen this time, until they took him into surgery around 9 p.m. on the 26th,” said Tiffany.
The double transplant was made more complicated by several blood clots located in his superior vena cava, which forced the surgeon’s to reroute the venovenous bypass (a technique used to lessen negative hemodynamic effects during liver transplantation) causing him to require a mini thoracotomy. After approximately fourteen hours in surgery, Johnson was so swollen that the transplant team could not connect his bile ducts and close the incisions forcing them to leave him open, on a ventilator, until his swelling had gone down enough to complete the surgery the following day, a worrisome outcome as it increased his already high-risk of infection. Two days after his initial surgery, his post-op team realized that he was losing blood around his new liver and he was rushed into an emergency surgery, where his surgeon’s were able to find the bleed and fix it.
Even with the unexpected complications, Daniel’s new kidney and liver were functioning well and his recovery went more smoothly than anyone on his team had anticipated. After being discharged from Northwestern Memorial Hospital, Daniel was admitted to the Shirley Ryan AbilityLab and after only three short weeks of hard work and prayers he was able to leave the not-for-profit rehabilitation center and reunite with his family.
While Tiffany was able to be with Daniel in the hospital, no visitors were allowed in the rehabilitation center due to COVID-19 restrictions, and his boys were not able to see him until he returned to their temporary apartment in Lombard following his timely discharge from the rehabilitation center. While they had anticipated that they would need to remain in Chicago (Lombard) until March, the Johnson family was able to return to their own home in Litchfield on Saturday, Feb. 6.
“All his doctors, nurses and therapists were so surprised that Daniel is recovering so well. They just kept saying that they have never seen anything like it, especially from a double transplant patient in his condition,” Tiffany explained, with a catch in her throat. “But to us it is simple, we believe that God has heard the numerous prayers for Daniel. It has been a long, difficult and at times scary road but we wouldn’t change it for anything, because God has been so good to us and grown us so much during this time.”
The couple attributes their source of strength throughout the journey to their faith and the unwavering support of their family, countless friends, the team at Davita Dialysis in Litchfield and their church family at Raymond Baptist Church.
“God has truly blessed us with a great church family that is always willing to pitch in to help with whatever we may need. Our church family, especially our pastor Ron Butler and his wife, Tammy, were always there and anytime we needed anything they went above and beyond for us,” Daniel replied. “Our lives have been day by day, just getting through, for a really long time but when I take the time to look back at what my God has done, I am brought to tears. To see our church family praising Him for what He has done in our lives, there are no words to describe how grateful we are for them. They have been so good to us all the way around.”
The congregation at Raymond Baptist Church surprised the Johnson family with a socially-distanced (and masked) “welcome home” breakfast at their church the weekend they returned from Chicago.
Due to his unusually quick recovery, Daniel has already been discharged from outpatient therapy and currently only has to do twice-weekly blood draws to monitor his organ function.
“I have to pace myself, but I really don’t have a lot of restrictions. My medical team keeps telling me that it is unheard of for a double transplant patient to recover as quickly as I have. Most people have a hard time just starting rehab because of the pain, but I was just up and going and I can only attribute it to God and the power of prayer,” said Daniel. “I’m looking forward to being able to enjoy life again, especially to do the things I haven’t been able to with my boys. Before we left Chicago, I got the ‘okay’ from my specialist to return to work and that is something I am really overjoyed about - being able to support my family again.”
Prior to his transplant, Daniel’s Journey bracelets were sold to help the family cover medical and traveling expenses. Those interested may contact the Johnsons at 217-313-3071 by text message to purchase one of the $3 bracelets.