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*Our PH Stories
*Previous Meetings

Next meeting ~ April 22, 2017
More info to follow about our meeting.

Merle Reeseman ~ Support Group Leader
724 458-5573

April 2019
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Merle Reeseman

Our Who's Who

























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A place to share ideas, concerns and helpful hints. This site is a guideline to lead you to helpful sites for information. A place to pass on information about our group – when we meet and what that meeting will be about. If you are uncertain about the information you find, talk with your doctor for verification.

A place to ask questions and to find answers about issues relevant to our concerns such as dietary restrictions, travel and insurance issues or medication management (always ask your doctor).

Our intention is to offer hope, provide support, inspiration, education, and resources to anyone who falls under the umbrella of pulmonary hypertension; be it PAH, PVH, APAH or PH; to include any and all wanting to learn more about this life threatening disease known as pulmonary hypertension.

Upcoming PHA On the Road September 9, 2017 at the Hyatt Regency Pittsburgh International Airport, 1111 Airport Blvd. PGH, PA 15231 -- 8:30 a.m. to 5:30 p.m. ( Copy and paste

Pittsburgh PH Support Group
Merle Reeseman – Support Group Leader

April 22, 2017

Registration starts at 11:30 – lunch served at noon.
UPMC – BioMedical Science Tower 11th Floor Room 1195
(floor below where we met last year)

Join us when Dr. Michael Risbano, Assistant Professor of Medicine; Director, Clinical Operations for Pulmonary Hypertension; Division of Pulmonary, Allergy and Critical Care Medicine; will do a presentation on:


Questions to follow presentation.

Thank you to UPMC Catering Service for providing our lunch

Please RSVP by 4-19-17 to Merle either by phone or email
724-458-5573 –

University of Pittsburgh
BioMedical Science Tower 11th Floor Room 1195
200 Lothrop Street
Pittsburgh PA 15213

The actual address listed on the sign beside the Starzl BioMedical Science Tower/Eye and Ear Institute is 203 Lothrop Street. There is parking under the building right above the 203 Lothrop Street sign on the left almost at the top of the hill. You will park and go to the elevators and take them down to floor D. Cross the elevator lobby to the glass doors to go into the BST lobby and make a left to the security desk and another left to go up the BST elevators to the 11th floor. You will have to check in with security to get on the elevators if you do not have access. Go to the 11th floor, off the elevators you go to the hallway and make a left down the hall a few feet and then make a right down a long hallway. BST 1195 will be across the hall at the end of the long hallway.

To learn more about Team PHenomenal Hope <-- click

An opportunity for ordinary people to work together and do extraordinary things

A team of avid cyclists and enthusiasts from Pittsburgh and UPMC, has partnered with the Pulmonary Hypertension Association (PHA), to conquer a tremendous challenge:

Race Across America

Well, they made it across America and here is a video of their PHENOMENAL trip:

23½ glorious minutes. TPH Race Across America

Hope you enjoy!
From Chuck Finder
Manager, Media Relations
UPMC and University of Pittsburgh
Schools of the Health Sciences

It's not just about the bike. It's not even about the race. It's bigger than that...

And the "TEAM" joined our WALKING PHOR A CURE - read about it by clicking here (it will show error but it is listed on the right, click on that one)

Our Mission Statement

  • To raise awareness about pulmonary hypertension and the Pulmonary Hypertension Association.
  • To train and race across America in honor of patients living with pulmonary hypertension.
  • To raise money to support research in the race to a cure for this disease, through the establishment of PHA-administered Team PHenomenal Hope Grants for novel ideas in the medical and surgical treatments of pulmonary hypertension.
  • An opportunity for ordinary people to work together and do extraordinary things

    You can still mail a donation to: Merle Reeseman – 330 College Ave., Grove City, PA 16127 –
    checks to be made payable to: TEAM PHENOMENAL HOPE - memo note PGH – PH

    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.

    in the Commonwealth of Pennsylvania

    Representative Richard (Dick) Stevenson, District 8 ( ~ introduced in the House as House Resolution 500 that November 2011 will be Pulmonary Hypertension Awareness Month. Please click on the link and read the text. Vote 195 to 0 Woo Hoo!!!

    Merle was presented a copy of the Resolution and a letter from Governor Corbett last paragraph stating: "As Governor and on behalf of all Pennsylvanians, I epress my deepest gratitude and admiration to everyone involved in the support of Pulmonary Hypertension Awareness Month, and I offer my encouragement as you continue your remarkable work."

    Proper Breathing is an underestimated, but critical building block of good health. Slow, deep breathing gets rid of carbon dioxide waste and takes plenty of clean, fresh oxygen to your brain and muscles. More blood cells get the new, oxygen-rich air instead of the same old stale stuff. Experts estimate that proper breathing helps your body eliminate toxins 15 times faster than poor, shallow breathing. You'll not only feel better, but you'll be able to perform better (mentally and physically) and, of course, be less stressed and more relaxed. Try Diaphragmatic Breathing Another good breathing exercise is a long slow deep breath in thru your nose and blow gently but slowly thru your lips as if you are blowing out a candle.

    A simple way to stay healthy
    Hand washing doesn't take much time or effort, but it offers great rewards in terms of preventing illness. Although it's impossible to keep your bare hands germ-free, times exist when it's critical to wash your hands to limit the transfer of bacteria, viruses and other microbes.
    • Wet your hands with warm, running water and apply liquid or clean bar soap. Lather well.
    • Rub your hands vigorously together for at least 15 seconds; sing the alphabet song.

    What is Pulmonary Hypertension 

    History of Approved Treatment Options for PAH
    Click on an underscored medication to find out more information

    1996....Flolan IV - a prostacyclin; widens the blood vessels in the lungs; lowers the blood pressure in the lungs (known as vasidilation action)
    Tracleer Oral - endothelin receptor antigonist ~ to improve exercise ability and decrease the rate of clinical worsening
    Remodulin SC (a potent pulmonary and systemic vasodilator; inhibits platelet aggregation and used to diminish symptoms associated with exercise -- to diminish the rate of clinical deterioration
    2006 Remodulin IV - same as above through IV catheter - no ice required
    Ventavis Inhaled - shown to decrease pulmonary arterial hypertension signs including lowering high blood pressure and resistance in the pulmonary artery; to allow the heart to pump more.
    Revatio Oral - PDE5 inhibitors and has vasodilatory properties, – to improve exercise ability, help lessen symptoms, and slow down worsening changes in your physical condition
    Letaris Oral - endothelin reception antagonist, a vasodilating agent
    2008....Thelin (not in the USA)
    Adcirca Oral - phosphodiesterase type 5 (PDE-5) inhibitor can cause blood vessels to widen
    Tyvaso Inhaled - is a synthetic form of prostacyclin (known as a prostacyclin analogue); reduces the ability of your blood to clot, aids in easier breathing
    Veletri IV (no ice)- a prostacyclin can help slow the thickening of blood vessels in the lungs, preventing further constriction of the vessels.
    Opsumit – Macitentan – oral endothelin receptor antagonist; to delay the disease progression
    Adempas - Riociguat – oral, approved drug therapy for persistent/recurrent CTEPH after surgical treatment or inoperable CTEPH chronic thromboembolic pulmonary hypertension (blood clots)
    Orenitram -- (treprostinil) Extended-Release Tablets for oral administration
    2015 - Uptravi (selexipag) oral prostacyclin

    ~ PH, PAH or IPAH: Pulmonary Hypertension, Pulmonary Arterial Hypertension or Idiopathic Pulmonary Arterial Hypertension
    Often misunderstood; the severity of PH is not recognized by many insurance companies, employers or others who associate PH (more specifically PAH) with common high blood pressure instead of a distinct and grave illness. Symptoms of PAH may include: Shortness of breath with minimal exertion, chest pain, unusual fatigue, a dry cough, edema, heart palpitations, fainting and dizzy spells. This disease, PAH, described as "progressive and fatal", causes blood vessels in the lungs to thicken, restricting blood flow therefore making the right side of the heart overwork and lead to heart failure. PAH is a silent killer BUT it is also treatable, there is hope.
    Because of the rarity of this disease, there are still many doctors who do not know what it is. It can be present in all ages and does not discriminate with being a male or female or ethnic background but is most common in women of child bearing years. Now it is being recognized in those in their 50's and 60's or the senior citizen group.
    PAH is often misdiagnosed or overlooked as a lung disorder or as a complication of a large number of respiratory or cardiac disease disorders. Remember, with proper treatment you can maintain a somewhat normal life and many have been known to go back to their regular routine. It is scary but it is also doable. It is a lung / heart disease so we need to take care of both.
    Various testing will be performed ie: EKG's, pulmonary function tests, Echo (see links on left <--) to name a few and these would be to eliminate other disorders ~ the gold standard of all tests is the right heart catheterization (RHC) ~ this will let the doctor know your pulmonary pressures and what would be the best treatment for you. Some patients are on single therapy treatment some are on multiple medications. We are each unique in our treatment and we need to listen to what our bodies are telling us and in turn, relate that to our doctor.
    The key note to remember ~ with proper treatment this disease is doable.
    See upper left for more information about PH.

    WHO Classification 2013 - Nice, France

    Table 1 Updated Classification of Pulmonary Hypertension∗
    1. Pulmonary arterial hypertension
    1.1 Idiopathic PAH
    1.2 Heritable PAH
    1.2.1 BMPR2 1.2.2 ALK-1, ENG, SMAD9, CAV1, KCNK3 1.2.3 Unknown
    1.3 Drug and toxin induced
    1.4 Associated with:
    1.4.1 Connective tissue disease 1.4.2 HIV infection 1.4.3 Portal hypertension
    1.4.4 Congenital heart diseases 1.4.5 Schistosomiasis

    1′ Pulmonary veno-occlusive disease and/or pulmonary capillary hemangiomatosis
    1′′ Persistent pulmonary hypertension of the newborn (PPHN)

    2. Pulmonary hypertension due to left heart disease
    2.1 Left ventricular systolic dysfunction
    2.2 Left ventricular diastolic dysfunction
    2.3 Valvular disease
    2.4 Congenital/acquired left heart inflow/outflow tract obstruction and congenital cardiomyopathies

    3. Pulmonary hypertension due to lung diseases and/or hypoxia
    3.1 Chronic obstructive pulmonary disease
    3.2 Interstitial lung disease
    3.3 Other pulmonary diseases with mixed restrictive and obstructive pattern
    3.4 Sleep-disordered breathing
    3.5 Alveolar hypoventilation disorders
    3.6 Chronic exposure to high altitude
    3.7 Developmental lung diseases

    4. Chronic thromboembolic pulmonary hypertension (CTEPH)

    5. Pulmonary hypertension with unclear multifactorial mechanisms
    5.1 Hematologic disorders: chronic hemolytic anemia, myeloproliferative disorders, splenectomy
    5.2 Systemic disorders: sarcoidosis, pulmonary histiocytosis, lymphangioleiomyomatosis
    5.3 Metabolic disorders: glycogen storage disease, Gaucher disease, thyroid disorders
    5.4 Others: tumoral obstruction, fibrosing mediastinitis, chronic renal failure, segmental PH

    ∗5th WSPH Nice 2013. Main modifications to the previous Dana Point classification are in bold.
    BMPR = bone morphogenic protein receptor type II; CAV1 = caveolin-1; ENG = endoglin; HIV = human immunodeficiency virus; PAH = pulmonary arterial hypertension.

    Questions to Ask Your Doctor For medications, tests, and treatments, you may want to ask:
    • What's the name of the medication (or test, or procedure)?
    • Why do I need it?
    • What are the risks?
    • Are there alternatives?
    • What happens if I do nothing?
    • (For medications) How do I take this? Or how often do I take this? If taken more often than once a day at what intervals? Every 6 hours, 8 hours or 12 hours. •
    (For tests) How do I prepare?
    Do I need to fast? etc
    At the end of the visit, ask:
    • When can I phone in for test results?
    • Are there any danger signs to look for?
    Do I need to return for another visit? •
    When do I need to report back about my condition?
    • What else do I need to know?

    Ask the specialist to send information about any further diagnosis or treatment to your primary doctor. This allows your primary doctor to keep track of your medical care. You also should let your primary doctor know at your next visit how well any treatments or medications the specialist recommended are working.

    Are there any changes in your diet, medication, and lifestyle ~ are there changes in your health, aches, pains ~ your thoughts and feelings, have they changed ~ Concerns: At each visit your doctor will likely ask about your concerns. It’s a good idea to think about what you’d like to talk about before the actual visit. Be sure you have a list of all your medications ~ even over-the-counter which would include vitamins. Your medication regimen may change over time so be sure it is always updated.

    Exercise & Nutrition
    Say you have and extended stay at the hospital and are not able to get around. This will help keep your lungs full of zip. Take a deep breath in through your nose, hold it for 3 seconds and let it out slowly through your mouth. After the 3rd one, do a deep cough. Do this 3 times every hour. This also works well for those long winters or hot summers when we are stuck in the house, then just do it 3 or 4 times a day. Hopefully you are able to get around in your home and keep those lungs a working....

    A new study from the National Institutes of Health found that the most sedentary individuals (i.e. couch potatoes) are 2.5 times more likely to develop dementia than regular exercisers. Dementia is a condition of declining mental abilities (especially memory) that affects your personality, skills (like driving a car), and verbal abilities. (And I thought it was a PH moment) Stay on a consistent exercise program throughout your lifespan. Try not to view exercise as a temporary means to an end (weight loss). It is part of a healthy lifestyle, and while it does help you lose and maintain weight, it can steer off plenty of health problems, from heart disease to depression.

    Don't forget to check with your doctor first before starting any exercise or diet program.

    Make sure to give your body a rest after a strength workout. Whichever part or parts of the body you work, give it two days’ rest before you work it again. This gives the muscles time to repair themselves and allows your metabolism to do its thing.

    Hopefully we are eating more balanced meals now and checking labels on food products when shopping. Buy frozen vegetables instead of canned vegetables. Remember that "low-fat" or "low-calorie" doesn't mean healthy. These diet foods can also be higher in sodium because manufacturers hope that added sodium, a flavor-enhancer, will bring back the flavor that is missing since fat and other higher-calorie ingredients are removed. This is especially true for frozen dinners, which are often loaded with extra salt. Remember you can eliminate or at least reduce salt portions when cooking most foods.

    Term Means
    • sodium free or salt free • less than 5 milligrams of sodium per serving
    • low sodium • 140 milligrams or less of sodium per serving
    • reduced or less sodium • at least 25% less sodium than the food’s standard serving
    • light sodium • 50% less sodium than the food's standard serving
    • unsalted or no salt added • no salt added during processing, but could contain naturally occurring salt.

    Let's find out more about sodium.

    Be sure to read those labels.

     Lung Capacity
    FYI~The average total lung capacity is about 5.8 liters (5800 cm3), however it varies from one person to the next and is dependent upon factors such as weight, sex, age and activity. Women tend to have 20 - 25% lower capacity than males. Tall people tend to have a greater total lung capacity than shorter people. Heavy smokers generally have a drastically lower total lung capacity than non-smokers. To find out if your lung capacity is "good" or "bad", you should talk to your doctor - preferably a pulmonologist.

    What Do Your Pressures Mean
    PAP SYSTOLIC (Pulmonary Artery Pressure Systolic) represents the rapid blood flow from the right ventricle into the pulmonary artery. Occurs with the opening of the pulmonic valve. Normal: 15-30mmHg

    PAP DIASTOLIC (Pulmonary Artery Pressure Diastolic) represents the diminished blood flow from the right ventricle into the pulmonary artery. Occurs with the closure of the pulmonic valve. Normal: 5-15mmHg

    MPAP (Mean Pulmonary Artery Pressure) is calculated as follows:

    SPAP + (DPAP x 2) /3

    PH Classifications New York Heart Association Classification
    I. PH patients in this category have no symptoms during ordinary physical activity, their hearts function normally.
    II. Although these patients are comfortable at rest, ordinary physical activity is somewhat limited by undue breathlessness, chest pain, fatigue, or near fainting.
    III. These PH patients usually have no symptoms at rest, but their physical activity is greatly limited by breathlessness, chest pain, fatigue, or near fainting while doing routine things.
    IV. These PH patients are often breathless and tired even while resting and can't do any physical activity without symptoms. They show signs of right-heart failure. Under the WHO system anyone who is prone to fainting goes into this class.

    2003 Classification by WHO – World Health Organization
    There were 5 classifications given.
    1. PAH – IPAH, occurs without any apparent cause – Familial – APAH (Associated with PAH) similar to IPAH but expose to toxins or effects of other diseases (scleroderma, lupus, chronic liver disease, HIV, diet drugs etc
    2. PVH – caused by diseases of the left side of the heart
    3. PH associated w/ disorders of the respiratory system – COPD, Sleep Apnea, developmental abnormalities etc
    4. PH due to chronic thrombotic and/or embolic disease – obstructions (clots) etc
    5. Miscellaneous – Sarcoidosis, tumor, fibrosing, etc


    Updated PH Legislation Seeks to Improve Diagnosis and Treatment

    Fifteen years ago there were no treatments for PH, and diagnosis took an average of 2.8 years. Today, even with nine treatments available, diagnosis still takes an average of 2.8 years. The Pulmonary Hypertension Research and Diagnosis Act of 2013 seeks to change that. This revised and updated PH bill is designed to make an impact in the current legislative climate. One email from you can help it become law.

    Thanks to Congressman Kevin Brady (R-TX) and Congresswoman Lois Capps (D-CA), the PH community has a new bill in Congress and Senator Robert Casey (D-PA) introduced a new bill in the Senate. The Pulmonary Hypertension Research and Diagnosis Act of 2013 (HR 2073 in the House and S 1453 In the Senate) is different from our earlier bill in a few key ways. For one, it is budget neutral - it's focused on results without asking for new money.

    The bill calls for the creation of a committee within the federal government focused on improving health outcomes for individuals living with pulmonary hypertension. The group would bring together representatives of several federal agencies working on PH to:
    • Advance the full spectrum of PH research from basic science to clinical trials
    • Increase early and accurate diagnosis of PH
    • Educate medical professionals and the public

    Help advance diagnosis and treatment for the PH community! Email your representative and ask him or her to co-sponsor the new PH bill. Don't forget to personalize the letter with your PH experience to better help Congress understand the need for more treatments and early diagnosis.

    The Secretary in decisions relating to pulmonary hypertension shall; develop and annually update a comprehensive strategic plan to cooperatively improve health outcomes for pulmonary hypertension patients which includes recommendations:
    (A) to improve professional education concerning accurate diagnosis and appropriate intervention for health care providers;
    (B) to improve the transplantation criteria and process concerning lung and heart-lung transplants for pulmonary hypertension patients;
    (C) to improve public awareness and recognition of pulmonary hypertension;
    (D) to improve health care delivery and promote early and accurate diagnosis for pulmonary hypertension patients; and
    (E) to systematically advance the full spectrum of biomedical research, including recommendations for basic, translational, clinical, and including pediatric research, and research training and career development

    With YOUR help, this PH bill can move more quickly toward passing in the House and the Senate, and then landing on the President's desk!

    It is now time to call our Senators and our Representatives and ask them to co-sponsor these respective bills: The Pulmonary Hypertension Research and Diagnosis Act of 2013.

    If you cannot make an appointment to see your Congressperson or Senator, meet or talk with their aide, the information will be passed on. Not all Legislators are on the committee that would allow them to know of this bill so be sure to ASK them to co-sponsor HR 1810; or for Senator Toomey S 775. If you would prefer to call their local (can be found in your phone book) or Federal office and your Legislator is not in, again, ask for their Legislative Aide. Go to the link on the left for mailing or phone information for your Representative and Senator.

    See far left column for (political) contact information; also information for the Library of Congress as well as many other sites of interest.

    You can also call all your friends and family asking them to call. This is a Federal bill so out of state works too.


    and Awareness

    Remember GINA HR 493 then S 358 WELL,the Genetic Information Nondiscrimination Act of 2008
    (Enrolled as Agreed to or Passed by Both House and Senate on May 21, 2008)The President has signed it; that means it is LAW. !!!

    Prevents health insurers from denying coverage or adjusting premiums based on genetic information
    Makes it illegal for employers to discriminate based on predictive genetic data
    Stops employers and insurers from requiring applicants to submit to genetic tests
    Provides enforcement in the tax code against health plans found in violation

    What do I say when I contact my politician: (and please call between 9am & 5pm) Ask For: Legislative Health Aide if your politician isn't there.
    1. Identify yourself as a constituent and ask to speak with your representative or their Legislative Health Aide.
    2. Introduce yourself and BRIEFLY explain what pulmonary hypertension is and how it impacts you and your family. (i.e. PH is high blood pressure in the vessels between the heart and the lungs. It is deadly, and incurable, we want your help to change that.)
    3. Emphasize the importance of research to find new and better treatments, and eventually a cure, for PH.
    4. Give your politician or their aide your contact information and ask to be kept informed of the legislator’s actions on your request.

    H.R.6331 ~ It's LAW -(110th Congress) Title: To amend titles XVIII and XIX of the Social Security Act to extend expiring provisions under the Medicare Program, to improve beneficiary access to preventive and mental health services, to enhance low-income benefit programs, and to maintain access to care in rural areas, including pharmacy access, and for other purposes.
    Read the text under Politrical Issues.

    Do I need a Living Will

    Do I need a living will if I have a last will and testament? Yes, your last will and testament deals with matters of property. Your living will deals with your health and personal care. Your last will and testament only takes affect after you die. Living wills are used during life and may be modified by the declarant whenever circumstances change.

    How does a living will work? Through a properly drafted legal document, you name someone to carry out your wishes for your medical care in the event that you are unable to make those decisions yourself. Again, you can be very specific as to what treatments you would agree to and which ones you don't want.

    Having your wishes on paper can take the pressure off family members to make difficult decisions regarding your care.

    The document can be drafted by a lawyer or you could do it yourself, as long as you follow all the steps that make such documents legal in your state of residence.

    It's also a good idea to review your living will with your doctor. The doctor can ensure that you have understood the choices in the living will and that the instruction directive is suitable for your own health situation.

    Like a regular will, it's a good idea to update a living will from time to time. Advances in medical science could make today's heroic measures tomorrow's routine procedures. Living wills focus on life-sustaining treatment and other end-of-life care. A living will is not operative (i.e., in effect) unless the patient is:

    Incompetent and
    Permanently unconscious or has an end-stage medical condition.

    Advance care directives are legally valid everywhere in the United States, but laws concerning them vary from State to State. Forms approved for the State you live in are available from many different health care organizations and institutions.

    Pittsburgh, PA
    phone: 724 458-5573

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