Pulmonary Hypertension ~ The Dastardly Disease

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


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 make 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 and how they need treated with care.
Some have special nurses and advocates now
Who teach the new patients the why, when 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.

Merle ~ there is always hope

I have Pulmonary Hypertension

I have pulmonary hypertension ~ pulmonary hypertension does not have me.

Pulmonary Hypertension is a rare, life threatening, progressive and incurable disease of the lungs and heart. It occurs in individuals of all ages, races, and ethnic background; it is more common in young adults and is approximately twice as common in women as in men. This disease is often mis-diagnosed or under-diagnosed and again it can occur in any person, male or female from infant to senior citizen. It is not uncommon for a patient to visit 3 or 4 different doctors before an accurate diagnosis is made -- often losing a precious year, or more importantly, the deterioration for quality of life. Having this disease is a lifetime commitment for a patient and their doctor; with proper diagnosis and treatment, it is a doable disease for a time. Right now there are approximately 20K to 30K who are diagnosed with pulmonary hypertension in the US and approximately 150K world wide.

Symptoms of pulmonary hypertension do not usually occur until the condition has started to progress. The first symptom of pulmonary hypertension is usually shortness of breath with minimal exertion, you may also feel extreme fatigue, have dizziness or fainting spells, heart palpitations, a dry cough; all these can be symptoms. Edema or swelling in the ankles, the legs or the abdomen can occur; bluish lips and skin and chest pain may occur as strain on the heart increases.

Symptoms range in severity and a given patient may not have all of the symptoms. PH may be secondary to COPD, HIV or Raynaud’s Phenomenon, Sleep Apnea, Scleroderma or even Lupus. There are several other contributing diseases that can cause PH or there can be no known cause. Untreated, however, PH has a worse prognosis than many forms of cancer. Did you know lung disease is the fourth leading cause of death in the U.S., responsible for one of every seven deaths?

Lest we Forget

From a newsletter from Senator Bob Casey: "As we mark Veterans Day, it is not only a time to thank our veterans for their service, but to also acknowledge the debt we owe them for protecting us and preserving our freedom.
When young men and women are brought into their nation's service a promise is made. We promise each veteran that their sacrifice and that of their family will not be forgotten.
To those who have worn the uniform and served their country; their sacrifices must be remembered.
There are approximately 23 million living veterans from different generations and with different needs.
This sacrifice is also borne by the families of veterans – by the mothers and fathers and especially the spouses and children.
I hope that everyone will remember the service and sacrifice of our veterans this Veterans Day and every day of the year."

Also remember this is Awareness Month for Pulmonary Hypertension. Another battle, a different field.
Pulmonary Hypertension is a rare, life threatening, progressive and incurable disease of the lungs and heart. It occurs in individuals of all ages, races, and ethnic background; it is more common in young adults and is approximately twice as common in women as in men. This disease is often mis-diagnosed or under-diagnosed and again it can occur in any person, male or female from infant to senior citizen. It is not uncommon for a patient to visit 3 or 4 different doctors before an accurate diagnosis is made -- often losing a precious year, or more importantly, the deterioration for quality of life. Having this disease is a lifetime commitment for a patient and their doctor; with proper diagnosis and treatment, it is a doable disease for a time. Right now there are approximately 20K to 30K who are diagnosed with pulmonary hypertension in the US and approximately 150K world wide.

Merle -- Always remember