Pittsburgh PH Support Group

May 2012


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Next meeting ~April 28, 2012

Merle Reeseman ~ Support Group Leader
724 458-5573

Click Here for Full Calendar

Members List:

Leader:
Merle Reeseman

Our Who's Who

	PHASSOCIATION
	PH CENTRAL
	FEDERAL SENATORS
	FEDERAL REPRESENTATIVES
	LIBRARY OF CONGRESS
	CLEVELAND AREA
	SOCIAL SECURITY ADMINISTRATION
	MEDICARE
	CENTERS FOR MEDICARE & MEDICAID SERVICES
	CENTER FOR MEDICARE ADVOCACY
	OFFICE OF CIVIL RIGHTS HIPAA
	US DEPT OF LABOR -- HEALTH PLANS & BENEFITS
	INSURANCE CARRIERS BY STATE
	CARING VOICE COALITION
	COBRA INSURANCE
	NATIONAL INSTITUTES OF HEALTH
	PA DEPT OF HEALTH
	TSA-TRAVELING WITH A DISABILITY
	QUALITY OF AIR MEANS QUALITY OF LIFE
	CENTERS FOR DISEASE CONTROL AND PREVENTION
	US FOOD AND DRUG ADMINISTRATION
	PULMONARY FUNCTION TESTING
	ECHO TESTING
	AMERICANS WITH DISABILITY ACT

Pittsburgh PH Support Group

A place to share ideas, concerns and helful 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.

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

How would you like to participate in some social activites - going to a Pirate Game -- maybe a pot luck picnic -- a criuse on the Gateway Clipper? If you have an interest either email or give me a call. Holly has become our Social Events Coordinator and will set something up if you are interested. This would be for the whole family so again, let me know.

Pittsburgh PH Support Group Meeting
April 28, 2012
Registration starts at 10:30
Marriott Pittsburgh North,
(Cranberry Twp)
100 Cranberry Woods Drive
Cranberry Township, PA 16066

Registration: 10:30 to 11:00 a.m.

Starting at 11 a.m., Dr. Mathier, of UPMC, will give us an overview of: What is New on the PH Horizon. Following his presentation, Dr. Risbano, also from UPMC, will talk to us about PH and Lung Disease.
Paper will be provided to write down questions and collected after the second presentation; these will be answered during lunch which will start at 12:15.
Following lunch and our Q’s and A’s we will have a demonstration of Reiki Therapy.

Reiki treats the whole person including body, emotions, mind and spirit creating many beneficial effects that include relaxation and feelings of peace, security and wellbeing. Not that any of us need that :o}

Please RSVP to Merle either by phone or email by April 24, 2012
(724 458-5573 or ohpa.pher@gmail.com)
Thank You United Therapeutics for sponsoring our program for the day.

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.

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. 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)
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.

~ 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 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 being recognized 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 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.

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

Advocacy

This past May,HR 1810 was presented in the House and we need to contact our Federal Representatives once again, asking them to co-sponsor this new bill. It is the Tom Lantos Pulmonary Hypertension Research and Education Act of 2011 ~ in honor and memory of Congressman Tom Lantos who was an advocate for those of us with Pulmonary Hypertension. The bill has 5 major components:

1. Establish a PH Clinical Research Network through the National Heart Lung and Blood Institute.
2. Establish a PH Training and Preceptorship Program through the NHLBI.
3. Establish an education campaign on PH for health professionals through the CDC.
4. Establish an education campaign on PH for the general public through the CDC.
5. Require the Government Accountability Office (the investigative arm of Congress) to conduct a study on the Medicare and Medicaid coverage standards for all FDA approved PH therapies.

And in the Senate -- Senator Robert Casey (PA) introduced S 775 -- the same bill only for the Senate. With YOUR help, this PH bill can move more quickly toward passing in the House and the Senate, and then landing on to the President's desk! It is now time to call our Senators and ask them to co-sponsor this Senate bill -- The Tom Lantos Research and Education Act of 2011.

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 PH SUPPORT GROUP
Pittsburgh, PA
phone: 724 458-5573

1439 Visitors

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