Monday, October 27, 2014

Pulmonary Hypertension- Alyssa's Story

Alyssa was a local 15 year old girl who was diagnosed with Idiopathic Pulmonary Hypertension. 

Please take the time to read her story and help spread awareness of this often fatal silent disease.

Please meet Alyssa Johnson

Here is her story.

Alyssa was diagnosed at Children's hospital in Omaha Nebraska on Sunday January 5th with Idiopathic Pulmonary Hypertension. This basically means she had high blood pressure caused by restrictions of the arteries in the lungs causing pressure to build in the lungs which then causes the heart to work harder to pump the blood through the lungs causing the heart muscle to weaken or fail. The idiopathic part means they don't know why.

Alyssa had a procedure done on that Wednesday night to see what her lung blood pressure was. Normal pressure on the right side of the heart, for her, should be 25-30 her pressure is 125. This is bad news because it was causing the left side to try to pump blood into the lungs to be oxygenated. With that amount of pressure it is like pumping blood into a brick wall. Blood flows back into the heart and not into the lungs.

They put a clavicle pic line in to administer drugs through and started her on a medicine to try to reduce the pressure. She was started at 6ml and was increased every 2 hours until she got to 14ml. This caused her to be very uncomfortable and nausea, vomiting, and fainting. The Dr had said if he didn't see improvements within a week, she would be transferred to a hospital out of state to await a lung transplant.

They started her on a second medicine on that Thursday, and were hoping it would also help with the pressure also. They then contacted a Dr in Houston to introduce Alyssa and her case so in the event it is needed Houston would be ready for her.

They started her on a 3rd medication but continued to have nausea, vomiting, and fainting and was very uncomfortable.
The medicine did not do what they had hoped for however it had stabilized her and increased the blood flow. 

Alyssa was transferred to Houston, and 12 days later they realized the medications were not working. 

After a grand total of 21 days of fighting for her life she passed in the loving arms of her mom at 10:11 am on January 26th 2014....

To know more about PH and the symptoms go to;


Please meet Alyssa's mom Tina. 

She has made it her life mission to spread awareness about this awful disease. She manages Alyssas Army Facebook page. She shares stories of others that are suffering from PH, and even keeps everyone updated on their progress. 

Among the stories of others suffering from PH, Tina also shares her progress during grieving process. She shares what her days are like living without her baby girl. And trying to keep strong for her husband and other children. 

I can't even imagine the amount of strength that takes to do from day to day. Your everyday routine as simple as telling your child to brush their teeth or clean their room...or even those goofy moments when you laugh and play together...are just a memory. Truly heartbreaking. 

Here are a few of her posts that she shares...

-June 26,2014-
5 months ago today my world was forever altered. I had to watch as my beautiful daughter took her last breath. It is a pain so deep and raw that I have no words to accurately describe it. Sometimes I know, that I keep myself so busy out of the sheer fear of reliving that moment. Fear of getting overly comfortable in my grief. I know that if I do that I will not be doing Alyssa any justice. I will not be doing my husband or remaining children any justice either.

I remind myself constantly that God has a plan. I am doing my best to fulfill what I feel in my heart is that plan. I know that somewhere out there some other family will be saved a heartache such as ours. They will know what to look for.

Alyssa's story is a legacy of awareness and hope. Although I miss her every second of every day, I feel closest to her when I share her story. -Tina
-June 30,2014-

Today I took in my younger two children for echocardiograms. While waiting to go back Kaitlynn asked me "What if I have PH mom?" In that instant my heart broke into a million pieces. I did not let her see that, of course. I choked back the tears and took a deep breath. Put her face in my hand and said "then we will be catching it early enough that you can take medications." 
We discussed their fears and I explained the procedure. I told them that it would be very unlikely that they too would have PH or ever get PH. I also explained that they would get an echocardiogram each year...just in case.

Kaitlynn asked if it was contagious. I told them that it was not and then tried my best to explain that the Dr's do not know what exactly causes it.

I hate this disease. I hate that I have to try to explain to them what Dr's can't even explain. I hate that they have questions that at this time have no answers......

It has been a very long day. Many memories came flooding back. Oh how I wish I could read those images! I should have the results at some point tomorrow. Until then I will be choking back the tears and trying to calm my mind. No sleep for this mom tonight.

-September 18,2014-
My hero continues to inspire me to spread awareness every day. Just had the opportunity to share her story again with someone who asked me about my Alyssa's Army t-shirt. Love you and miss you every second of every day Alyssa!


I heard someone once say, 
"Pain like that don't ever go away, you just get used to it"

 When I lost my dad 4 years ago..that single sentence summed it all up. Life changed..altered forever. Although that has been the most painful thing I have ever went through..I can't even begin to imagine the depth of heartache of losing a child. Life just isn't suppose to happen in that order, ya know.

But Tina has turned her tragedy into a quest to educate and comfort others. The amount of courage that takes is truly amazing.

So please help us spread awareness of this silent awful disease. Tina wants to give away some

Alyssa's Army gear!!

a Rafflecopter giveaway


  1. How sad Shelly, thank you for sharing Alyssa's story. Your post today shook me up. I was recently diagnosed with slightly elevated blood pressure and I haven't been taking the meds nor the problem seriously. That changed today - Thank You!
    Marie@The Interior Frugalista

    1. Thank you for reading Alyssas story Marie. Im so glad her story has changed your view.