The Munson Family - Brad, Maleah, Shannon, Troy, RobThe Munson Family - Brad, Maleah, Shannon, Troy, Rob

Patient story

Shannon Munson

May 2011

August 2, 2006 was one of the happiest days of my life because my daughter Maleah Nicoll was born. Then within days, my life took a whole other turn. I went into congestive heart failure and almost died. I was in an intensive care unit for four days then taken by ambulance to the University of California, San Diego, a renowned pulmonary hypertension center. The following day I underwent a heart catheter procedure and it was determined that I have pulmonary hypertension (PH). I was immediately put on intravenous (IV) medication as my condition was so severe. If I had continued to be undiagnosed I would've died within 6 months.

Typically patients on IV medication do not typically get off that kind of medication. This medication is usually the last thing they put a person on when their condition is so severe. In some cases a lung transplant is the last option. I had to mix my medication from scratch every day as it only had a shelf life of 48 hours. I had to keep it cold 24 hours a day and change the ice packs out every 6 hours from a medicine bag that I had to carry on my person everywhere I went. I was only on IV medication for three months. After that I was put on oral medication (16 pills a day) to regulate my illness.

My husband is my hero! If it wasn't for Rob, I never would've made it through all that I had to go through in the hospital or when I came home. The two weeks I was in the hospital Rob stayed with me day and night. He slept in chairs and in small cramped beds (that he was way too tall for). He ate hospital food morning, noon and night and was just there by my side the whole time. When we came home from the hospital Rob would mix my medicine for me, get up in the middle of the night and change my ice packs and get up with the baby. Whatever I needed, he was there for me. I couldn't have made it through this without him. He was and is my rock!

PH is an incurable and very rare lung disease--a disease that almost killed me. Women with this rare disease are told they cannot have children as only 20% of women live through child birth. I have three beautiful/healthy children. What a blessing from above!!!! My guardian angel was watching over me. Thank you God!

I have been living with this disease for almost five years now. I do not let my disease control my life. I try and keep a positive attitude at all times (as best as I can, we all have bad days) and try not to sweat the small stuff. I try to live each day to the fullest. I want my children to learn from my example and for them to know I never gave up.

No one knows how long they have to live. There are no guarantees in life. Being diagnosed with this rare disease just made me realize that I should never take anyone or anything for granted. I cherish my family & friends more and cherish every moment, every memory, every experience, every day. Life is WAY TOO SHORT!

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.