This disease

I have a nasty disease.  Very nasty.  It's incurable, progressive and fatal.  Most people have never heard of it.  If they have, they've only heard of the "hypertension" part and assume it's a quick fix with medication and maybe some dietary modifications.  What they don't know is, that, when you add "pulmonary" to the mix, it's a whole new ball game.   Have you ever felt suffocated?  That's what my lungs go through, daily.  They're fighting to get oxygenated blood pumped to them from my weakened and enlarged heart.  My heart is failing.  It's failing because my pulmonary arteries are so narrowed and scarred that it can't get the blood to them very easily.  My heart works in overdrive to get the blood through but there's resistance from those tiny arteries.  Resistance makes the heart pump hard and in turn, enlarges it.  This disease is scary.  In addition to being incurable, pulmonary hypertension is a rare disease which means there are few health care providers who are versed, educated or specialized in the disease. The symptoms are so subtle and they often get overlooked as symptoms for other conditions.  So many patients are misdiagnosed for months and sometimes years.  Further, the drugs used to treat this disease are expensive. Most patients usually need 2 or 3 to help treat the symptoms of PH.   For me, I started with one drug called Adcirca.  It got me out of the woods for a few months and then we added a second drug called Tracleer.  This past January, I had a right heart catheterization procedure which revealed that things hadn't stabilized very well.  My PH was still severe and my pressures were still dangerously high.  While my heart was in better shape, it was still working very hard, meaning it would eventually quit.  I only had one other choice: to start continuous intravenous medication through a Hickman line implanted in my chest.  This is my only hope.  Well, my second last hope.  A lung transplant may await me on the horizon- but, in the meantime, I'm clinging to hope that these new meds will make a difference.  And, I'll PHight as best as I can.