A CFer lies in ICU on a vent. A 21-year-old with PH dies after a heart-lung transplant, which she had longed for. These stories fill my days.
I truly did not understand what people with rare chronic diseases face until I had my own run-in with Pulmonary Hypertension. Fortunately for me, my doctors had a diagnosis pretty early in the process. The docs put me on bosentan, one of the first oral PH meds. My symptoms abated after awhile, and I continued to work and go about my life. Then came more symptoms and another PH medicine: sildenafil (Viagra). Since my pal edema came to visit more frequently, the doc added two diuretics to the mix.
The newspaper where I worked for more than 30 years laid me off. A close friend who had CF died. I fell into a vat of depression. Two more medicines added to the cocktail.
Lung issues sent me to the hospital twice in the past four years. Both times I waited almost too long to go. The denial factor gets a person in trouble fast.
PH is high blood pressure in arteries of the lungs that can lead to heart failure. PH has nothing to do with systemic blood pressure. (You know, the cuff on the arm blood pressure.)
The past five years my pressures have been moderate. Recently they increased to the severe range. I started having more symptoms, so the doc added a relatively new medicine, inhaled treprostinil. I noticed an improvement in my energy level right away. This medicine also brought with it a few unpleasant pals. GI tract issues, muscle aches and pains, headaches. Fortunately most of these guys left the party early.
Doctors use a couple of tools to follow my disease. The echocardiogram and the right heart catheter. The echo estimates pressures, the heart cath gives the actual pressures.
Oh yes, my medicines cost thousands of dollars a month. Fortunately insurance pays on all of them. Unfortunately, the co-pays add up. I pay more for drugs than I do for rent.
I know dozens of diseases scream for your donations like beggers standing next to a bread factory. November is PH awareness month. 'nuff said.
As I said on Facebook, you are a great writer and I enjoy reading your stories. Although this is about PH, we can really relate. Hang in there CL..Hugs :)))
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