Wednesday, February 3, 2016

February is National Heart Month

Feb 3  2016
February is National Heart Month. I like to say it is Heart Defect Awareness month, but we really only get one week.
I have 3 heart defects, 2 defective lungs, Hemi-vertebrae=Scoliosis, and some other issues. For more information on those go to my very first post, it is MY story.
I have a Patent Ductus Arteriosis, Hypoplasia left Pulmonary Artery and Vein. 

I have a PA and PV, but they are so small, even the dr says absent. Because of the PDA, i have High Pressure in the Heart and Lungs, this is Pulmonary Arterial Hypertension. My PAH, is a more severe form, and I was diagnosed at age 10, Eisenmenger Syndrome. This is because the PDA has Bi-Directional Shunting. (Good and Bad blood mix) This sends Un-oxygenated Blood to my legs and feet. So i tire easily. AND most of the time i have Periwinkle colored toes. This is why Periwinkle is the "Color" for PH.
I also have Pulmonary Hypertension because of the Restrictive Lung Disease. This is very Rare to have both heart and lung PH.
I am on Tracleer for the PH, it is $10,000 a month. I was started on it in 2010. I feel i have reached a Plateau, but Doc doesn't feel it is time for a secondary drug. He says, the other meds have not been tested with Eisenmenger patients. He wants me to let him know when i feel i am declining, and he will consider it.
SIGH!! How do you feel and know you are declining?
It is so relative?

Love diane

#Cardiology, #CongenitalHeartDefects, #EisenmengerSyndrome, #NationalHeartAwarenessMonth, #Patent DuctusArteriosus, #Pulmonary Arterial Hypertension
#1in100, #CHDAwareness,


  1. I was on Trackeer for 11years until they found that I also have PVH as well as PAH. So I was switched to Sildenafil. I did feel like Tracleer had stopped working for me, however, the docs disagreed so I was in it for all that time. Hugs!!! Look forward to reading more posts from you!

    Hugs n Periwinkle Kisses

    1. Thank You!! It is nice to know someone reads my posts !! :)
      I hope the drugs continue to help you.