OHPA's WorldPulmonary Hypertension Support - Share

May 2012


	More About PH
	More About Us
	CAPHS Meeting Info
	Mercer Area Meeting Info
	Political Issues
	Special Notices
	Helpful Hints
	Diet - Nutrition - Exercise - Recipes
	Caregivers

Meeting Info
Time and locations vary so check back often.

Mercer Area PH Support Group meets (except winter months)the 3rd Thursday of most months at:
UPMC Hospital, Farrell, PA 16121; this coming year we will have a few meetings at the Sharon Regional ~ Diagnostic Center, Hermitage, 16148 and they will be on Fridays.

Support Group Leader

Merle Reeseman
724 458-5573

Next meeting for Mercer
May 17, 2012

Cleveland Area PH Support Group CAPHS meet at the:
Twinsburg Public Library, Twinsburg, OH 44087

Support Group Leader
Merle Reeseman
724 458-5573

We meet the second Saturday of the odd months at 1 p.m. Because of some holidays and Library commitment we may meet different days - so be sure to check.

CAPHS NEXT MEETING
July 21, 2012 - 11 a.m.

PLEASE CHECK TO SEE WHAT WE HAVE PLANNED FOR OUR MEETINGS

We do eat... *;*

Click Here for Full Calendar

Site Administrator

SGL:
Merle Reeseman

OHPA's ~ Who's Who

	PH ASSOCIATION
	PH CENTRAL
	CAPHS ~ PH CLEVELAND AREA
	FEDERAL SENATORS
	FEDERAL REPRESENTATIVES
	LIBRARY OF CONGRESS
	SOCIAL SECURITY ADMINISTRATION
	MEDICARE
	CENTERS FOR MEDICARE & MEDICAID SERVICES
	CENTER FOR MEDICARE ADVOCACY
	INSURANCE CARRIERS BY STATE
	US DEPT OF LABOR -- HEALTH PLANS & BENEFITS
	COBRA INSURANCE
	PA DEPT OF HEALTH
	OFFICE OF CIVIL RIGHTS HIPAA
	CARING VOICE COALITION
	HEALTHIER US
	US FOOD AND DRUG ADMINISTRATION
	CENTERS FOR DISEASE CONTROL AND PREVENTION
	NATIONAL INSTITUTES OF HEALTH
	AMERICAN LUNG ASSOCIATION
	QUALITY OF LIFE ~ WHAT'S YOUR AIR LIKE
	TSA – QUESTIONS ABOUT TRAVEL AND BEING DISABLED
	PULMONARY FUNCTION TESTING
	ECHO TESTING
	AMERICANS WITH DISABILITY ACT

OHPA's World
Pulmonary Hypertension
Support - Share - Care

Welcome to
OPHA's World

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. 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.

MERCER AREA PH SUPPORT GROUP

June 29, 2012

Sharon Regional Diagnostic & Imaging Center – 2435 Garden Way, Hermitage, PA 16148
Meeting at 2 p.m. Note date (Friday) and location

A report will be given by those who were able to attend the 10th PHA International Conference in Orland, FL.

After each presentation we will have an informal chat and snack time to share our stories or some other aspects of living with PH and how we deal with these issues. If you can, bring a helpful hint on what you do to make your PH life a little easier or bring a question or concern.

Refreshments will be provided

Please RSVP to: Merle Reeseman ~ Support Group Leader by June 26th either by phone or e-mail.
724 458-5573 or OHPA.PHER@gmail.com

Mercer Area ~ Pulmonary Hypertension Support Group MERCER AREA PH SUPPORT GROUP 2012 SCHEDULED MEETINGS
Merle Reeseman – Support Group Leader – 724 458-5573

UPMC HORIZON – 2200 Memorial Dr., Farrell, PA 16121
or
Sharon Regional Diagnostic & Imaging Center – 2435 Garden Way, Hermitage, PA 16148

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

Note: Some meetings are on Thursday and some on Friday ~ also note location

Thursday - March 15th ...........UPMC
Friday - April 20th .............SRDC
Thursday - May 17th ..............UPMC
Friday - June 29th ..............SRDC
Thursday - July 19th ............UPMC
Friday - August 17th ............SRDC
Thursday - September 20th .....UPMC
Friday – October 19th ..........SRDC
Thursday - November 15th .......UPMC
Friday - December 14th .........SRDC

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 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 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 ice needed mixed daily
2002....Tracleer Oral
2005....Remodulin SC
2006…. Ventavis Inhaled
2006....Revatio Oral
2006....Remodulin IV no ice mix every 48 hours
2007....Letaris Oral
2008....Thelin (not in the USA)
2009....Adcirca Oral
2009....Tyvaso Inhaled
2010....Veletri IV (no ice) mix daily

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** In May 2011 ~ 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. Last Congress that bill did not pass.

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.
Senator Robert Casey (D-PA)once again introduced our PH bill S 775 into the Senate. We need to contact Senator Toomey and aks him to co-sponsor this very important bill. Remember is has to pass in both the House and Senate before it can be presented to the President.

What these bills will do:
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.

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.

OHPA'S WORLDPULMONARY HYPERTENSION SUPPORT - SHARE - CARE
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phone: 724 458-5573

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