Alyssa Johnson


Alyssa Johnson

as told by her mother

Alyssa Johnson

On January 4th 2014 my daughter Alyssa and I played with our dogs, wrestled around and stayed up late watching scary movies. On January 5th my husband thought he heard her throwing up. I went downstairs to check on her. I found her in the downstairs bathroom having what I thought may be a seizure. We rushed her to the local ER. They diagnosed her with pneumonia. She had another episodethat the nnurse called a seizure. They then did a chest X ray. They told us she had an enlarged heart. Took 2 cat scans then transported her to the Children's Hospital. Upon arrival there we were told she did NOT have pneumonia and that she was in fact in heart failure.

They admitted her to the PICU. After a battery of tests we were told that Alyssa had Idiopathic Pulmonary Hypertension. We were told we needed to take a very aggress approch with the medication. She had a heart catheter done and a clavicle pic line put in place. She then started on Flolan, ambrisentan, heprin, sildenafil, nitric acid, gas, oxygen, promethazine, lorazempam.

Alyssa Johnson

Along with medications to ensure she evacuated her bowels and anti nausea meds. The Flolan was increased daily. After 8 days we were told by our Dr. that they had done everything they could do for her. Her best chance of survival was a lung transplant. We were taken by medical jet from Omaha, Nebraska to Houston, Texas to start the process.

Alyssa Johnson In the few weeks she was in the hospital in Texas her meds were increased. She had drops in her blood pressure so they added norepinephrine to her drugs. She developed pancreantitus, her lungs started to collapse. She was constantly throwing up and having diarrhea. She w as retaining get water and started on a diuretic. She lost 31 lbs of fluid in 5 days and still had more to lose. Nothing was going right for her.

After 2 weeks of fighting my daughter lost her battle. 21 days from being diagnosed my amazing daughter lost her life to a devastating disease that we had never even heard of. Now our mission is to raise awareness and hopefully save just 1 family from going through what we went through.

She has a Facebook page called Alyssa's Army. It has her complete story and now is our platform for raising awareness.

posted 2014


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