Since I wrote this in 2010, there have been 3 new PAH medications - TopicsExpress



          

Since I wrote this in 2010, there have been 3 new PAH medications added to the list. The Dastardly Disease ~ by Merle I used to be healthy; I used to be strong, I used to work most all the day long. And then it hit me without even a clue I wasn’t quite sure just what I could do. I saw many doctors and then all those tests I was diagnosed with IPAH and you know the rest. Pulmonary Hypertension the dastardly disease It’s rare with no cure and progression will be It affects the right side of heart – the lungs big time too Those arteries get constricted and give out on you. It’s so complicated; makes it so hard to breathe With having this dastardly pulmonary hypertension disease. Shortness of breath are symptoms at first And sometimes it feels like your heart just may burst. That weight in your chest, fast heart beats oh my And walking too fast may just make you cry. Some may get dizzy, or maybe pass out Some are so tired - what’s that all about? Some cannot work and don’t understand why With little exertion they falter not fly. Some have edema, that swelling so bad Retaining that fluid just makes one so sad Some may have chest pain and may have blue lips This disease is too serious and needs to be nipped. Some may have Scleroderma, Sleep Apnea or HIV Lupus, Raynaud’s Phenomenon or maybe COPD. There can be some causes or no cause at all That’s when our ph doctors need to make the right call. We cut back on salt, smaller portions for meals, Nutrition’s important and helps us to deal, We deal with life changes a whole new life style Remember it’s doable – we’ll be here a while. Many will ask when not feeling too well How do I cope, how do I dwell? Do not despair and let me just say There are treatments out now – with more on the way With hope and with faith we have a good chance, To fight this disease and maybe then dance. :o) Too many doctors; some specialist too Do not understand what this ph disease can do Luckily though and I praise God on high There are ph doctors and nurses who do know the why They treat us with wisdom and caring that shows I thank them so much and I just hope they know. They schedule those testings they start off real slow An echo and blood work and others you know A six minute walk, many PFT’s, oh gee We scurry, we’re dazzled, we come then they see. You may have a CAT scan, a bron-chos-co-py too And there could be several others they may ask of you. And then the right heart cath the gold standard of all This proves the diagnosis is proper – they made the right call. Some take an oral an inhaled or such Some with IV’s and more, oh, oh so much. Revatio, Adcirca, Letaris, Tracleer, Ventavis, Tyvaso are a few that are here. Then Veletri, Remodulin or Flolan may do And some of these meds are almost brand new. A hose in the nose; a tube in the chest We struggle; we strive and hope for the best. It is very doable this dastardly disease With research abounding, there’s hope – so let’s breathe Those researchers out there, those researching now How can we help you, with what and the how We’re counting on you to brighten our life You give us more hope to end all this strife. We’ll give you some blood or whatever you need And hope for a cure of this dastardly disease. The cost of these meds is abhorrently high, We suffer, we struggle, oh my how we sigh. Some insurance companies won’t give us a dime The government too in their wisdom declines Then say they will help – but they have special rules Most are careless and thoughtless and actually cruel. There are specialty pharmacies and pharma reps too With guided persistence they know what to do, They tell all those doctors those specialists out there About the ph meds; how they need treated with care. Some have special nurses and advocates now Who teach the new patients the why, what and how. They treat us so special it’s learning one on one They do have support for us, their work’s never done. There’s a ph community it spreads far and wide We meet in some chat rooms and support groups with pride. I’ve made many phriends and I value them well Unfortunately though, and I do have to tell I’ve lost ooh too many, that hurts thru and thru This dastardly disease can do that to you. With our phamily support system we’re able to cope We share with each other, there is always hope. Hope for a future, hope for a life Hope we’ll endure without too much strife Although it’s not cancer the symptoms may be As bad, sometimes worse than that horrid disease. PH is progressive and can cause us much pain We must not let fear grip us, there’s still much to gain As mentioned before and remember this now Pulmonary Hypertension is doable – we’ll be here a while. Let’s take a deep breath; so slow if you please It can strengthen those lungs with this dastardly disease In through your nose and out through your lips Slow is the key – please remember that tip. And last but not least, remember to smile As smiles are contagious you see And when you feel down; and bring on a frown Turn that frown upside down just for me Smiles make us happy and will help us cope With having this dastardly pulmonary hypertension disease. :o)
Posted on: Sun, 16 Nov 2014 00:55:30 +0000

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