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      Let's Walk and Roll         For a cure and awareness of PH  It was another HUGE Success ~ see picture pages.      
         WE DONE GOOD! 
        And you can still       make donations --
ask Merle how 
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Welcome to Merle's World
Tidbits about the CAPHS - previous meeting - info and things that I enjoy and hope you will too.   OHPA.PHER@GMAIL.COM
Too often we take for granted the things we 
should be giving thanks for.

Obstacles are those frightful things  you see when you take your eye off your goal.     
Henry Ford
M E R I C A  ~ 
Land of the free - Home of the brave
Independence Day celebrates the birthday of the United States of America.  Founded on July 4th 1776 with the signing of the Declaration of Independenceand each year as Americans we continute to celebrate the RED, WHITE and BLUE in many different ways: picnics, bbq's, baseball and fireworks.  
Here is some history to read, some patriotic music to enjoy, a fireworks display and time to bake Mom's Apple Pie.  Read how it all started with the Continental Congress.Independence Hall:  International Symbol of Freedom  
Each year on September 11th, we were  asked to display an American flag on this anniversary of our country's worst tragedy. We do this in honor of those who lost their lives on 9/11, and for their families, friends and loved ones who continue to endure the pain, and for those who today are fighting at home and abroad to preserve our cherished freedoms.

In the days, weeks and months following 9/11, our country was bathed in American flags; as citizens mourned the incredible losses and stood shoulder-to-shoulder against terrorism. Our patriotism has always pulled us through some tough times. Our American flag is the fabric or back bone of this great country and together we can prevail. We should remember to do this every year.
         ​~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~
        Merle Reeseman 
      Support
Thought for a day or two 
FYI - anything that is underscored is a link to a topic, a theme, or a web site
If you want a bit of satirical humor listen to Uncle Jay explains the news.
~     ~     ~    ~    ~    ~    ~    ~   ~   ~   ~  ~
Laughing is good exercise. It's like jogging on the inside.
What I have been doing in my spare time  *;* 

Pittsburgh PH Support Group  
Mercer Area PH Support Group
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Not everything that happens is because of the PAH so don't think that you are necessarily doing worse just because you are having a bad day; even normal people have bad days.  Also, try to think of yourself as healthy -- approach life with that attitude; it can't hurt and it may help.  If you are being symptomatic make sure something isn't going on in your life to cause this:  stress, tension, have you gained weight, are you retaining added fluid.  Being symptomatic does not always mean you need an increase or change in you medication.  Talk with your doctor to rule these things out.
Newly diagnosed or just having a bad day and you need to talk with someone who understands.  
Call the PHA Support Line, a patient to patient conversation.  Someone who understands what you are going through.  1 800 748-7274
National Donor Memorial -- 
something to look at
PHA's Outstanding PH Citizen 
This is awarded to a patient who exemplifies dedication to the PH community through any combination of the following: raising awareness; advocating for PH patients; participating in fundraising efforts; service to PHA; and, helping to provide the public with a voice and face of the PH community.

2010 Winner: Merle Reeseman      
As a Helpline/Support Line Volunteer, PH Mentor, a major advocate, and leader of three PHA support groups (Mercer, PA; Cleveland Area, OH; and Pittsburgh, PA) Merle has exhibited unyielding dedication to the PH community. In support of the 2010 Path to a Cure Mt. Kilimanjaro climb, Merle helped organize a Unity Walk with her Pittsburgh, PA Support Group earlier this year. In February, she helped raise awareness of pulmonary hypertension and heart transplantation at and in a ballet: Heart: Function vs. Emotion at the Byham Theater in Pittsburgh. This year the Cleveland Area Group had their 4th Annual Walk and Roll in September to raise funds for research and awareness for Pulmonary Hypertension.  Merle is a tireless advocate and lobbyist for the PH community, and has reached out to government leaders from a local to a national level and she doesn’t care which state it involves.  If a pher needs help, she is there for them. This past May Merle was asked to speak at a luncheon group the day before the Ohio primary. With that presentation to the UAW, she was able to mail over 200 signatures to each Ohio Senator about S 2803 and also letters to 5 Congresspeople about HR 1030. She is passionate about being a face for the PH community, and has appeared on television and radio in the Pittsburgh and Youngstown-area on many occasions, as well as featured in numerous Pittsburgh, Sharon, Cleveland and Akron-area newspapers. Her boundless energy, enthusiasm and caring spirit make her a true asset to the PH community.
This award was presented at the 9th International Pulmonary Hypertension Conference and Scientific Sessions: “Riding the Wave” June 25th – 27th 2010 in Garden Grove, CA
PHA’s International Pulmonary Hypertension Conference and Scientific Sessions is the largest meeting of PH patients from infants to octogenarians, families, caregivers allied health professionals and the world’s leading PH physicians and researchers in the PH field. 
Also in attendance with exhibits, were representatives from the pharmaceutical industries that make the various medications used to treat this disease.  The International PH Conference provides education, networking opportunities and, above all hope for a cure.
There were over 1500 in attendance at this conference.

Although Merle was unable to attend the conference, arrangements were made for a member of the PHA Board  of Directors to bring it home and re-present it to her at her support group meetings.  It now sits proudly on her living room mantel.

The Dastardly Disease © ~ Merle Reeseman

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

They schedule those testing’s 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.

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

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
To give us more hope and 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 oooh 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.  


 November 2010

In 2013 three additional treatments/therapies were added to the list.  
Opsumit – oral era; Adempas – oral, for CTEPH; Orenitram – oral Treprostinil
2015 - Uptravi (selexipag) oral prostacyclin