Natty's New Heart

By Louis Hoglund

louish@eot.com

Nathan Natty Johnson is a typical, high-strung, five-year-old sporting a big smile and eyes with a big, inquisitive twinkle. Filled with curiosity when he visits a new environment, Natty buzzes around the room with the zest of a bumblebee.

And thanks to the heart he received a year ago, this busy guy will be a Perham High School Yellowjacket a decade or so from now.

You could stand him up next to ten other boys, and you would never know he had a heart transplant, said Nattys mom Pam Johnson.

Nattys dangerous heart condition, the January 2005 transplant and continuing recovery has been closely watched by friends and family in East Otter Tail County--and elsewhere in the world, through the caringbridge.org website.

Heart rejection is constant fear

Its been an up and down life for the Johnsons. The latest news is a down er. Pam described the situation as full blown rejection of the heart. So, Nathan has again spent more time in the hospital--receiving radiation treatments for more than a week.

For sixteen months, Nathan has had his new heart. The heart is an absolute miracle, but life hasnt been easy for Nathan, Pam, father Eugene and little sister Kayla.

In April, new signs appeared that the transplanted heart was being rejected by Nathans body. The rejection struggles continue. (See excerpts from Pam Johnsons diary, accompanying this article.)

Nathan started radiation therapy this month, for five weeks at two treatments a week in the Cities at the University Childrens hospital. He has done fabulous, said his mom. He seems to tire a little quicker, but his heart function is good so they felt this was the best way to hopefully stop this rejection.

Daily regimen of pills

While most children his age swallow a single vitamin each morning-Nathan chokes down a dozen pills a day. Even more, if he has a cold or virus--which is often.

His immune system is very sensitive, said Pam. He has come down with pneumonia a couple times, ear infection and viral coughs.

We have challenges that a normal family wouldnt think of, said Pam Johnson. We have to be very picky about where we go with him.

Actually, its been nearly three full years since Nattys plight began, when he was diagnosed with restrictive cardiomyopathy. The condition caused extreme stiffening and hardening of the lower left heart chamber. He was hospitalized in June 2004--suspended in a difficult holding pattern, waiting for a heart donor.

New heart Jan. 10, 2005 gave Natty second chance on life

Finally, the wait ended--January 10, 2005.

A day that we will be forever grateful to the family that gave Nathan this precious gift...We thank God every day for giving Nathan a chance to be a little boy and give us all the joy a parent could ever wish for, wrote Pam Johnson in the continuing diary at caringbridge.org, where she has written periodic updates on Nathans progress.

We have to live life moment to moment...you just do what you have to do to get by day to day, said Pam, adding that our extended families have been wonderful...Kayla is pawned off to grandma and grandpa often.

The continuous struggle has created a different outlook on life for the Johnsons.

You just do what you have to do, whatever it is. If it means leaving things behind, thats what you do, said Johnson. With the constant trips to the heart specialists in the Twin Cities, housekeeping, for example, is something that is simply deemed lower priority, she added.

Donor of Nattys heart may remain a mystery forever

Who was the donor of the heart? It is a question often asked, said Pam

We dont know--and we may never know, said Pam in a recent interview. Anonymity is common for donors, said Pam, because organ donation is a very personal choice. Some families simply prefer not to meet the recipient of donated organs. It is speculated that his donor was from a child who was the victim of a fatal car accident.

For Nathan, the transplanted heart gave him a second chance on life, said Pam. Not a day goes by that the Johnsons dont think about the donor family.

Faith has kept

familys hopes alive

Christian faith has been important to the family. And that faith was fortified three years ago when Nattys condition was diagnosed.

I used to feel that I was independent, could make my own way, fend for myself. But now, even if things are going good for a while; no matter how much control I think I have over situations--there is somebody with a bigger plan for us, said Pam Johnson