Hope from the heart
Pam Johnson, the mother of Nathan Johnson, of Perham, a nine-year-old awaiting a second heart transplant, believes prayers got her family through Nathan's first heart transplant and the subsequent barrage of treatments and medications and believes they will bring a happy ending this time.
"Prayers, we need lots of them these days," she said.
Nathan is a little farm boy, at heart, he loves tractors, farm equipment and he's an outdoor kid who loves to play outside. He's a boy with a good heart, yet not so.
Nathan is currently hampered from doing what many kids love to do, just play outdoors. He is hooked up to an I.V. 24 hours a day. Yet, through all the adversity he has faced, he looks at life in a very positive manner.
"He's really an easy tempered kid. He takes life in stride and goes with the flow. He's never really a complainer and looks at life in a good way."
Most of Nathan's life has revolved around his medical condition and Pam attributes Nathan's positive attitude to the fact that it has been a part of his life ever since he can remember.
"It's become a way of life for him to take a meal of pills per day. Fifteen per day."
Many kids complain about taking three square meals per day. Imagine taking three square doses of pills.
"A spoonful of apple sauce and down they go," said Pam.
A positive attitude from all family members is a must for Nathan's recovery, but in the face of the possibilities a family has to face the brutish realities of the situation having already been through one heart transplant.
"It is horrible. It's devastating. We've been through it once and we know what it's like. We have too much insight and know what the road can be."
The Johnsons also have a six-year-old daughter Kayla who demands the attentions of her parents and has needs like any growing child. Kayla was an infant during Nathan's first go around.
"Four and five years ago, we had an infant who was easy to care for. Now we have a six-year old-daughter who has more needs now. It's much more difficult this time. We have a lot more things on our plate."
That's just at home. There are jobs and bills and the myriad of life stresses every family has to take into account.
Nathan's father Eugene is a farmer, a full-time job, but it has allowed some flexibility when it comes to juggling the many treatments and trips to hospitals from Perham to Fargo to Minneapolis.
"Where should I be? What's more important?" are questions the Johnson's are forced to face regularly.
Nathan's tale begins one night when he was two-years-old.
"He fainted on us and we were ambulanced to the local hospital in Perham."
The family spent the night there before being sent to Fargo for Nathan's first echocardiogram. Further testing, including his first heart catheter revealed restrictive cardiomyopathy, a weakening of the heart muscle or a change in heart muscle structure. It is often associated with inadequate heart pumping or other heart function problems.
A two-week wait for the family's insurance to make arrangements and Nathan was sent to University of Minnesota's Amplatz Children's Hospital in Minneapolis.
A two-week stay there started Nathan on his array of medications, including Viagra, used to increase blood flow. He remained on that from July 2003 to July of 2005.
"We were able to stay home for 11 months until his condition worsened."
Nathan's pulmonary pressures got so high he was back at the hospital for another round of medications to control his heart pressure. Nathan's heart was in a volatile state. Even though the family lives seven miles out of town, in his condition, if anything happened, there was not enough time to get him to the hospital.
"If anything went wrong he had two minutes."
A donor was found and Nathan had his heart transplanted January of 2005 at the U of M. He was at the University hospital for a total eight months, from June of 2004 to February 2005.
The family stayed in the twin cities, at the Ronald McDonald House, until March 25, which was Good Friday.
"It was a good Friday. Ronald McDonald House was our home away from home."
During that time Eugene kept up at the farm and Pam worked every other week. Both parents rotated their schedules to be in the twin cities with Nathan, who was three-years-old at the time, while caring for Kayla, who was just a baby.
"We never left him alone."
Nathan's road to recovery was positive but not without its troubles.
"Our first year was a little rocky. He had a central line giving him meds before he was finally line-free August of 2005. His condition was up and down with blood infections and other ailments."
May of 2006 found Nathan's heart in full-blown rejection. He was scheduled for lymphoid radiation, a procedure where he received radiation from the neck to his waist. After seven treatments, he seemed to be doing fine with no rejection and the family got a reprieve from constant hospital visits.
"We were doing six-month visits. From 2009-2010 the doctors let us go a whole year with no check ups in-between other than lab draws every two months to monitor his condition."
Nathan went for one of his now normal appointments this summer, a two-day appointment in June where tests revealed lesions in his coronary arteries.
Nathan was started on another medication to try to stop the lesions, but the meds caused him hoarseness and physicians cut the dose in half and ordered another series of labs.
A work-up in July produced a phone call from physicians to Pam. The testing revealed high levels of an enzyme the body releases when there is lack of blood flow from the heart.
"I was told there was a hospital room waiting for us. He and I jumped in a vehicle and went in for a heart catheter about two in the afternoon the following day."
The arteries doctors and the family were watching in June had gone from 10-20 percent closed to almost fully closed and required stints placed in the arteries, a trip to the intensive care unit and more meds.
A return clinic visit in mid-August including a basic chest x-ray, lab work, electrocardiogram and blood work came back all fine.
At a follow-up appointment in late September, a heart catheter was performed to look at the stints.
While the stints looked good, doctors noted the condition vasculopathy, a disease of the blood vessels. According to Pam, in chronic rejection, the heart itself causes arteries to close. Where the stints were keeping Nathan's arteries open, his heart was shutting down the length of arteries in between.
"You can't stint the whole thing. There was no other option but to relist him for another transplant."
The family just returned home last Thursday after over two weeks in the hospital and now what's left to do is wait and wait and wait.
"We just take care of him the best we can and are on call 24 hours a day for a transplant."
It took 18 months to wait the first time. Nathan was three and was able to accept a heart from a two to five-year-old donor. Now his listing is a little broader, making donated hearts from a seven to 12 year old plausible.
"It all depends on size and blood type and many other factors."
Upon hearing word of any possible heart donations, the Johnson family has two hours to get from Perham to Minneapolis leaving them landlocked to staying close to the airport.
Air flight is on reserve to pick them up upon hearing word. A plane would arrive from Fargo to Perham and jet the family to the hospital in Minneapolis.
"We would probably have a half-hour to get to the Perham airport. We don't venture too far away because of that."
Pam wants her son's story to open up conversation about organ donation, especially that of children, a subject no parent wants to discuss.
"Before this all happened to Nathan, you don't think of donating your children's organs until you're in a position like we are. Unfortunately, human life has to pass away before you can save anyone else."
Nathan's hope for another heart will certainly require the gift of another grieving family, but hopes are high that selfless gift will be a lasting benefit to Nathan, his little sister Kayla and the entire Johnson family.
Hope from the Heart Benefit
Sunday, October 24
A benefit for Nathan will be held Sunday, October 24, from 11 a.m. to 3 p.m. at Prairie Wind Middle School.
The benefit will ask for free-will offerings and will include a spaghetti dinner, bake sale, silent auction, fun and games for kids and more. For more information on the benefit visit stjohnsperham.org/hope or contact Rev. Phil Booe, Pastor, St. John's Lutheran Church at 218-346-4302 or firstname.lastname@example.org.