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Meeting Info
Time and locations vary so check back often.

Mercer Area PH Support Group meets (except winter months)the 3rd Thursday of the month at:
UPMC Hospital, 2200 Memorial Dr., Farrell, PA

Please check the calendar on the right

PLEASE CHECK TO SEE WHAT WE HAVE PLANNED FOR OUR MEETINGS

We do eat... *;*

April 2019
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Site Administrator

SGL:
Merle Reeseman

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TRAVELER'S GUIDE TO PREVENTING IDENTITY THEFRT
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Pulmonary Hypertension
Support - Share - Care
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A place to share ideas, concerns and helful hints. This site will be a guideline to lead you to helpful sites for information. A place to pass on information about our support group – when we meet and what that meeting will be about. If you are uncertain about what you find, talk with your doctor for verification.
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.

Please e-mail any ideas, concerns or hints to: Merle at
OHPA.PHER@gmail.com



LIVE RADIO ~ MERLE AND SAM BELLICH (Mercer County Area Agency on Aging) WILL TALK ABOUT PULMONARY HYPERTENSION. The first radio was DECEMBER 9, 2011 AT 9 A.M. ON (AND TYPE THIS IN TO CONNECT) www.790WPIC.com CLICK ON "LISTEN" AND YOU WILL HAVE A RADIO RIGHT ON YOUR COMPUTER. :o) I will leave this on if you want to listen to the station for other programs.

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. (https://phassociation.org/ontheroad/pittsburgh/registration/) Copy and paste

Mercer Area PH Support Group

UPMC HORIZON – 2200 Memorial Dr., Farrell, PA 16121

2 p.m. Conference Room #1
Down by the Cafeteria

Thursday May 18, 2017

Understanding stress can be a difficult process. Join us when we will have a presentation on:

STRESS MANAGEMENT

Bring along some helpful hints that you use and let's share and be aware.

Lunch will be provided

Please RSVP by May 16, to Merle either by phone or email: 724-458-5573 – ohpa.pher@gmail.com


Mercer Area PH Support Group

UPMC HORIZON – 2200 Memorial Dr., Farrell, PA 16121
2017 SCHEDULED MEETINGS

Merle Reeseman – Support Group Leader – 724 458-5573

All meetings start at 2 p.m. unless otherwise noted

Note: Meetings are on the 3rd Thursday ~

Thursday - March 16th ..............UPMC
Friday - April 20th ..............UPMC
Thursday - May 18th ...............UPMC
Thursday June 15th ...............UPMC
Thursday - July 20th ..............UPMC
Thursday - August 17th ............UPMC
Thursday - September 21st ... .....UPMC
Thursday – October 19th ...........UPMC
Thursday - November 16th ..........UPMC
Thursday - December 14th ..........UPMC



NOVEMBER IS PULMONARY HYPERTENSION AWARENESS MONTH
in the Commonwealth of Pennsylvania

Representative Richard (Dick) Stevenson, District 8 (www.dickstevenson.com) ~ introduced in the House as House Resolution 500 that November will be Pulmonary Hypertension Awareness Month. Please click on the link and read the text.

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 express 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 take a slow deep breath in thru your nose and let is out slowly thru your lips as if blowing out a candle. This can help relieve stress and anxiety.

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.


 
What is Pulmonary Hypertension PH aka PAH: Pulmonary Hypertension aka Pulmonary Arterial Hypertension
Often misunderstood; the severity of PH is not recognized by many insurance companies, employers or others who associate PH with common high blood pressure instead of a distinct and grave illness. Symptoms of PH may include: Shortness of breath with minimal exertion, chest pain, unusual fatigue, a dry cough, edema, heart palpitations, fainting and dizzy spells. The disease, 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. It 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 becoming predominate in those in their 50's and 60's or the senior citizen group.
It 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 preformed ie pulmonary function tests, EKG's, Echo to name a few and these would be to eliminate other disorders ~ the golden rule of all tests is the right heart catherization (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 About PH".

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)
2002....
Tracleer Oral - endothelin receptor antigonist ~ to improve exercise ability and decrease the rate of clinical worsening
2005....
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
2006….
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.
2006....
Revatio Oral - PDE5 inhibitors and has vasodilatory properties, – to improve exercise ability, help lessen symptoms, and slow down worsening changes in your physical condition
2007....
Letaris Oral - endothelin reception antagonist, a vasodilating agent
2008....Thelin (not in the USA)
2009....
Adcirca Oral - phosphodiesterase type 5 (PDE-5) inhibitor can cause blood vessels to widen
2009....
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
2010....
Veletri IV (no ice)- a prostacyclin can help slow the thickening of blood vessels in the lungs, preventing further constriction of the vessels.
2013...
Opsumit – Macitentan – oral endothelin receptor antagonist; to delay the disease progression
2013...
Adempas - Riociguat – oral, approved drug therapy for persistent/recurrent CTEPH after surgical treatment or inoperable CTEPH chronic thromboembolic pulmonary hypertension (blood clots)
2013...
Orenitram -- Treprostinil - Extended-Release Tablets for oral administration



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.



    **ADVOCACY**

    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). 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


    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 S 775. If you would prefer to call their local 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 Senators.

    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, Senator 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.


    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 genetic tests
    Provides enforcement in the tax code against health plans found in violation


    H.R.6331 the "Medicare Improvement for Patients and Providers Act of 2008,"
    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.
    It is now law - read political issues above



    In the left column is contact information for your politicians or the Library of Congress as well as many other links. You can also click "Political Issues" above for added information.

  •  
    Lung Capacity - et al

    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


    Something to think about -- Even healthy people have bad days. Not all your so called bad days are PH related. Are you being symtomatic because you had too much salt the day before or earlier in the day (retaining fluids); is something stressful going on in your life; did you overdo and do too much physically. These are questions to ask yourself before you ask your doctor for an increase or a change in your medication.
     Classifications

    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
     


    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 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.

    TermMeans • 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 size
    • light sodium • 50% less sodium than the food's standard serving size
    • 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.

     

    Helpful Hints

    Places to keep ER information at home: on or in your refrigerator or freezer; your medicine cabinet; your glove box in your car; it should also be kept in your purse or wallet. EMT people are trained to look in those places. This should include the medicines you are on as well as those you may be allergic to. Family member names; friend or neighbor to be contacted--with phone numbers etc. Place in a zip lock bag and tag it.
    On your cell phone: program in ICE (In Case of Emergency) program the phone number of person you want notified, if there is more than one person use ICE A and ICE B etc; it's also a good idea to program in HOME and have your home phone number for that one. Again, EMT people are trained to look for those numbers on cell phones.

    Remember most PH meds lower your blood pressure so have a warning about being given nitroglycerin. We don't want you to bottom out...

    Notify your local 911 Center, Emergency Room and Fire Department of your condition and what special treatment you require; especially those on IV medications. Bring a list of those meds you use and are allergic to. If needed have a special PH nurse come and talk with those folks. Most pharmaceutical companies would be glad to do that. If they cannot, contact me (Merle) and I will make sure you have info to pass out. A reminder to these places every 6 months (by you or your caregiver) would be advised as they do have a frequent turn-over and some may have been off duty or on a different shift at the time of the first visit. Stop with this information at different times of the day to cover all shifts.


    * * * * * Yesterday I went to the doctor for my yearly physical. My blood pressure was high, my cholesterol was high, I'd gained some weight, and I didn't feel so hot. My doctor said eating right doesn't have to be complicated and it would solve my physical problems. He said just think in colors. Fill your plate with bright colors; greens, yellows, reds, etc. I went right home and ate an entire bowl of M&M's and sure enough, I felt better immediately. I never knew eating right could be so easy.


    We are victims and survivors of this dastardly disease so let's do what we can to keep it that way. The definition of victim is someone who is adversely affected by an action or circumstance or someone who experiences misfortune and feels helpless to remedy it. The definition of Survivor states: someone who remains alive despite being exposed to life-threatening danger 2. Someone with great powers of endurance ~ someone who shows a great will to live or a great determination to overcome difficulties and carry on. That's me and you and many others with Pulmonary Hypertension. Let's work hard to remain as survivors.

     



    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 kicks in 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.


     
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