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

Merle Reeseman ~ Support Group Leader
724 458-5573

June 2017
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PITTSBURGH PH SUPPORT GROUP

April 23, 2016

Lunch will be served at 12:15

Registration begins at 11:30 a.m.

Crowne Plaza (formerly Holiday Inn) 401 Holiday Dr., Pittsburgh (Greentree), PA 15220

Join us when Dr. Stephen Chan from UPMC, will do a presentation on:

A biographical sketch of pulmonary hypertension

Ever wonder how it all began? Dr. Chan will give a historical perspective of the disease since its first known description in 1891. This does sound very interesting; and questions and answers will follow the presentation.

Stephen Chan, M.D., Ph.D., F.A.H.A. Director, Center for Pulmonary Vascular Biology and Medicine
Associate Professor of Medicine
Pittsburgh Heart, Lung, Blood, and Vascular Medicine Institute
Division of Cardiology, Department of Medicine UPMC and University of Pittsburgh School of Medicine

Please RSVP to Merle by April 15th either by phone or email:
724-458-5573 or ohpa.pher@gmail.com

Thank you to the Pulmonary Hypertension Association (PHA) Support Group Central Fund for sponsoring our meeting’s meal. The Support Group Central Fund is made possible by Platinum level sponsorships from Actelion Pharmaceutical, Bayer HealthCare and United Therapeutics and a Gold level sponsorship from Gilead Sciences, Inc.




PITTSBURGH PH SUPPORT GROUP

and supporting Team PHenomenal Hope
Is Having their 4th Annual
WALKING PHOR A CURE
September 26, 2015

Registration begins at Noon at the Beveridge Shelter on South Ridge Dr. (up by the swimming pool area-across from ball field) Allison Park, PA 15101.
Located at North Park part of Allegheny County Parks. Walk starts around 1 p.m., phun, talks, picnic, Chinese Auction, games - etc.
Questions call Merle: 724 458-5573

Contact Merle if you can supply a basket or gift for the Auction -- start saving that loose change -- ask for donations -- this is our fund raiser.

Thank you for your support!

Contributions will go toward the Team PHenomenal Hope’s donation to PHA for research and patient services.
With all our support we’ll be one step closer to phinding a cure for this dastardly disease.


Our meeting: April 11, 2015, we met at the Crowne Plaza (formerly Holiday Inn) 401 Holiday Dr., Pittsburgh (Greentree), PA 15220

AMBITION: an update
Paradigm shift in the treatment of PH

Pittsburgh PH Support Group
April 11, 2015

Michael A. Mathier, M.D., F.A.C.C.
University of Pittsburgh Medical Center

Overview
• Back to basics
• How we got our therapies
• How we’ve used them
• The AMBITION trial
• How it might change the way we treat PH

Pulmonary Arterial Hypertension
Definition
• Mean PA pressure > 25 mmHg with PCW (Pulmonary Capillary Wedge) < 15 mmHg
..o (NIH Registry on PPH, 1987)
• PVR ≥ 3 units
..o say: PVR = TPG/CO (pulmonary vascular resistance = trans-pulmonary gradient/cardiac output)
..o TPG = PAM-PCW (trans-pulmonary gradient = pulmonary artery mean –pulmonary capillary wedge)
• Exercise mean PA pressure >30 -35

Clinical classification of PH – Nice 2013

Pathogenesis of Pulmonary Arterial Hypertension
A. Slide showing healthy or normal pulmonary artery Risk factors and associated conditions – Class 1
B. Showing vasoconstriction of artery which can be reversible disease
Vascular injury – Endotheial Dysfunction
Vascular smooth muscle dysfunction
C. Advanced vascular lesion – irreversible disease
Disease progression
Loss of response to short acting vasodilator trial

Therapeutic Options for PAH
Traditional Rxs
• Supplemental 02
• Diuretics
• Oral vasodilators
..o CCB
• Anticoagulants
..o Warfarin
• Inotropic agents
..o Digitailis

FDA Approved for PAH
• Prostanoids
..o Epoprostenol
..o Treprostinil (IV, SC, Inhaled, Oral)
..o Inhaled Iloprost
• ERAs
..o Bosentan
..o Ambrisentan
..o Macitentan
• PDE-5 Inhibitors
..o Sildenafil
..o Tadalafil
• Riociguat

Investigational Rxs
• Prostanoids
..o Beraprost
• Others
..o TKI’s
..o Rituximab
..o Selexipag*
..o Cicletanine
..o Inhaled NO

PAH Determinants of Risk
Clinical evidence of RV failure
• Lower risk – no
• Higher risk – yes
Progression
• Lower risk – Gradual
• Higher risk – Rapid
WHO class
• Lower risk – II, III
• Higher risk – IV
6MW distance
• Lower Risk – Longer (>400 m)
• Higher risk – Shorter (< 300 m)
BNP
• Lower risk – Minimally elevated
• Higher risk – Very elevated
Echocardiographic findings >BR>• Lower risk – Minimal RV dysfunction
• Higher risk – Pericardial effusion, significant RB dysfunction
Hemodynamics
• Lower risk – Normal/near normal RAP and CI
• Higher risk – High RAP, lower CI

What is the Optimal Treatment Strategy?
**Anticoagulate ± Diuretics ± Oxygen ± Digoxin
Positive
• Oral CCB
• Sustained Response – yes
• Continue CCB
**Acute Vasoreactivity Testing
Negative
• Class II – III (Lower Risk)
..o ERAs or PDE-5 Is (oral)
..o Epoprostenol or Treprostinil (IV)
..o Iloprost (inhaled)
..o Treprostinil (SC)
• Class III – IV (Higher Risk)
..o Epoprostenol or Treprostinil (IV)
..o Iloprost (Inhaled)
..o Treprostinil (SC)
..o ERAs or PDE-5 Is (oral)
• Reassess – consider combo-therapy – Investigational
Protocols
..o For both Lower and Higher Risk
..o Higher risk
.. Atrial septostomy
.. Lung transplant

Choice of Initial PAH therapy
• Treatment Choice
..o Risk Estimation/Disease Severity
..o Coverage Status
..o Provider Preference
..o Patient ability
..o Patient support
..o Patient Preference
..o Side Effect Profile

AMBITION
• a randomized, double-blind, first-line combination therapy with AMBrIsentan and Tadalafil in patients with pulmonary hypertensION = AMBITION

Study Design – 500 PAH Patients
• Tadalafil - 121
• Ambrisentan – 126
• Both – 253

Results
• 50% reduction in risk of clinical failure,( death, hospitalization, worsening, failure to improve)
• Improved 6MWD and BNP
• No safety concerns

Questions Raised
• Should every patient newly diagnosed get combo therapy?
• Why has some comb therapy not worked well?
• Should we be even more aggressive with combo therapy?

Recently Completed or On Going Clinical Trials of Combination Therapy
Ambition – Patients - 500
• Current Therapy
..o Ambrisentan/Tadalafil/combo
• Added Therapy
..o Combo vs mono
• Study Duration
..o Event-driven
• Primary Endpoint
..o Morbidity/mortality event Pfizer – Patients 104
• Current Therapy
..o Bosentan
• Added Therapy
..o Sildenafil
• Study Duration
..o 12 weeks
• Primary Endpoint
..o 6MWD COMPASS-2 – Patients 300
• Current Therapy
..o Sildenafil
• Added Therapy
..o Bosentan
• Study Duration
..o Event-driven
• Primary Endpoint
..o Morbidity/mortality event ATPAHSS – Patients 63
• Current Therapy
..o Ambrisentan/Tadalafil combo
• Added Therapy
..o Combo vs mono
• Study Duration
..o 36 weeks
• Primary Endpoint
..o RV mass/PVR FREEDOM-EV – Patients 858
• Current Therapy
..o PDE-5I or ERA
• Added Therapy
..o Oral Treprostinil
• Study Duration
..o 24 weeks (6MWD)/event driven
• Primary Endpoint
..o 6MWD/ first clinical worsening event

On Treatment Goals
• Functional classI orII
• 6MWD > 380m
• Hemodynamic
..o Normal cardial index (>2.2 L/min/m²)
..o normalRA pressure
• Echocardiographic Findings
..o Normal RV size and function
• BNP – decrease / normalize



Our meeting for November 7th
was at Allegheny General Hospital
320 East North Avenue ~ Pittsburgh, PA 15212
AGH Cancer Center Conference Room
Park at the 5th floor of the JAMES STREET PARKING GARAGE –
The CANCER CENTER is right there on the 3rd floor and go directly to the Cancer Center Conference Room; again, on the 3rd floor.(5th floor of the parking garage is the same as the 3rd floor Cancer Center)

Join us when Dr. Srinivas Murali will do a presentation on:

"Recent advances in our understanding of pulmonary hypertension"

After the presentation Dr. Srinivas and the PH Team had an open discussion from the audience of patients and caregivers.

Thank You Actelion Pharmaceuticals Ltd. for providing lunch for the day



3rd Annual Walking PHor a Cure

Hope you're raising awareness (and funds) for Team Phenomenal Hope and the Race Across America this June

Our Walking PHor a Cure will be June 7th again at Beveridge Shelter at the Allegheny County Parks and will be a major "kick-off" for TPH and their RACE ACROSS AMERICA!!!!

The Pittsburgh PH Support group is planning a Walk Phor a Cure and Awareness of Pulmonary Hypertension. Join us for a 6 minute walk or longer. We may be able to walk by ourselves, or we many need a walker or a wheelchair or we may have someone walk for us – we can use a cheering squad for those who can't walk. Either way we will be there to support each other. If you would like to walk longer to help us raise awareness about this disease, you may. Let’s WALK Phor a Cure together. Join us for a picnic; Chinese auction; games for kids; PH presentation or more; and a goody bag which will have a shirt, and other surprises.

A presentation by Dr. Manreet Kanwar, a cardiologist at the CVI at AGH. She will discuss among other things: the ‘often forgotten’ right side of the heart when evaluating patients. And also a recent “trip” she took and how it affected her.

TEAM PHENOMENAL HOPE WILL ALSO GIVE A PRESENTATION THEY WILL BEGIN THEIR RACE ACROSS AMERICA THE FOLLOWING WEEK!!!!!

Registration begins at noon at the Beveridge Shelter on South Ridge Dr. (up by the swimming pool area, across from ball field) Allison Park, PA 15101. Located at North Park which is part of Allegheny County Parks.

Our walk will start at 1 p.m. then the phun agenda will follow. Again, we may be able to walk or we may have someone walk for us – those that can’t walk can cheer the others on.

Please register early so we have your shirt size and a reliable food count. Registration for an individual is $25 and $15 for each additional family member. Children 12 and under will be $10 each.

To make a secure donation: click donation

Or you can mail your registration to: Merle Reeseman – 330 College Ave., Grove City, PA 16127 –
checks to be made payable to the: TEAM PHENOMENAL HOPE - memo note PGH – PH

Start asking your family and friends for donations – have a jar and put in your loose change, save a dollar (or more) a week, etc. and bring it to the walk.

With all our support, we’re one step closer to phinding a cure phor this dastardly disease.

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



April 12th, 2014 11:30 a.m. to 2:30 p.m.
We met at the Four Points by Sheraton Pittsburgh North - 910 Sheraton Drive - Cranberry Township, Pennsylvania 16046

Dr. Belinda Rivera-Lebron of UPMC was our guest speaker. Her presentation:

What is Chronic Thrombo-Embolic Pulmonary Hypertension?

Dr. David Ishizawar, a cardiologist, also from UPMC, spoke on:

An Update on the NEW PH MEDS

Thank you United Therapeutics and Lung Bio-Technology for supporting our meeting and providing lunch
What is Chronic Thromboembolic Pulmonary Hypertension

Presented by: Belinda Rivera-Lebron, MD, MS

Outline
• Overview of the classifications of pulmonary hypertension
• Definition of Chronic ThromboEmbolic Pulmonary Hypertension (CTEPH)
• Incidence of CTEPH
• Symptoms of CTEPH
• Diagnosis of CTEPH
• Treatment of CTEPH

Classifications of Pulmonary Hypertension

Group 1: Pulmonary Arterial Hypertension
• Idiopathic
• Hereditary
• Congenital heart disease
• Related to:
..o Autoimmune disease,
..o Liver disease
..o HIV

Group 2: Left Heart Disease
• Heart Failure
• Valvular disease

Group 3: Lung Disease
• COPD (Emphysema)
• Interstitial Lung disease (fibrosis)
• Sleep Apnea

Group 4: Chronic Clot
• Chronic Thromboembolic Pulmonary Hypertension

Group 5: Miscellaneous
• Maltifactorial mechanisms:
..o Sarcoidosis
..o Metabolic disorders,
..o Etc.

Classifications of Pulmonary Hypertension ie blood clots

Group 4: Chronic Clot (picture of clot in leg also in lung)
• Deep Vein Thrombosis (DVY) clot in leg
• Pulmonary Emoblism (PE) clot in lung

Risk factors for blood clots
• Long periods of inactivity – bed rest due to surgery or illness, long trip by car or plane
..o The need to get up and move around every couple of hours
• Certain types of surgery – hip or knee surgeries
• Older age
• History of cancer
• Family or personal history of blood clots
• Smoking
• Obesity
• Taking estrogen in form of birth control pills or hormone replacement therapy

What is CTEPH?
• A form of pulmonary hypertension formed by old blood clots in the lungs (pulmonary embolism or PE)
• Most people with blood clots are treated with blood thinners and restore the blood flow in the lungs >BR>• A minority of patients do not respond adequately to blood thinners and may develop CTEPH
• Some patients may develop CTEPH without any history of a blood clot

How common is CTEPH?
• 600,000 cases of acute clots per year in US
• 1 – 4% of patients with acute blood clots will develop CTEPH
• 25 – 40% of patients without any history of clots develop CTEPH (“silent PE”)

What are the symptoms of CTEPH?
• Shortness of breath
• Exercise intolerance
• Chest discomfort or pain
• Heart palpitations
• Lightheadedness

**Symptoms are similar to other types of pulmonary hypertension**

How is CTEPH diagnosed?
• CT scan of chest with IV Contrast (picture showing area of interest – area heart and lungs)
• Nuclear Scan (Ventilation/perfusion scan VQ scan) (picture showing area of interest – area in lungs)
• Echocardiogram
• Right heart catheterization
• Pulmonary angiography
..o a procedure that uses a combination of contrast dye and X-rays to examine the blood vessels in the lungs and evaluate blood flow to the lungs

What are the treatments for CTEPH?
• 1st choice: Pulmonary thromboendarterectomy (PTE), a surgical procedure to remove chronic blood clots from the arteries in the lung (picture showing 2 blood clots) Decision for surgery made by a team of Pulmonary specialist along with a cardiac surgeon

Are there any medical options for patients that cannot undergo surgery?
• Riociguat = Adempas®
..o Works by relaxing the arteries and improving blood flow through the pulmonary artery
..o Only approved for:
.... Patients who cannot get surgery, or
.... That have persistent pulmonary hypertension after surgery (approximately 10% of patients)

Questions and answers followed



November 19th, 2013
11 a.m. to 1 p.m.

Allegheny General Hospital
320 East North Avenue ~ Pittsburgh, PA 15212
AGH Cancer Center Conference Room

Join us when Dr. Raymond Benza will explain

PH: is it PAH, PVH or just PH
And what is the difference.

Raymond L. Benza, MD, is an internationally recognized cardiologist who serves as Medical Director of the Advanced Heart Failure, Transplantation, Mechanical Circulatory Support and Pulmonary Hypertension Program at Allegheny General Hospital (AGH) Considered one of the country’s foremost experts on pulmonary vascular diseases and cardiac transplantation, Dr. Benza has played a major role over the past two decades in advancing the study and treatment of pulmonary hypertension and will help us better understand the what’s and why’s.



Pittsburgh PH -- We're having our 2nd Annual
WALKING PHOR A CURE
August 11, 2013

The Pittsburgh PH Support group is planning a Walk Phor a Cure and Awareness of Pulmonary Hypertension. Join us for a 6 minute walk or longer. We may be able to walk by ourselves, or we many need a walker or a wheelchair or we may have someone walk for us – we can use a cheering squad for those who can't walk. Either way we will be there to support each other. If you would like to walk longer to help us raise awareness about this disease, you may. Let’s WALK Phor a Cure together. Join us for a picnic; Chinese auction; games for kids; ph presentation by 2 doctors; a special presentation by TPH and a goody bag which will have a shirt, and other surprises.

Registration began at 1 p.m. at the Beveridge Shelter on South Ridge Dr. (up by the swimming pool area, across from ball field) Allison Park, PA 15101. Located at North Park which is part of Allegheny County Parks.

Our walk will start at 2 p.m., we will walk in the shelter area or the trail in the woods, then the phun agenda will follow. Again, we may be able to walk or we may have someone walk for us – those that can’t walk can cheer the others on. :D

Following the walk we had a presentation by Dr. Raymond Benza of AGH, then Dr. Patty George from UPMC did a presentation about Team PHenomenal Hope ~ she and several others will be riding bicycles ACROSS AMERICA in June of 2014 to raise funds for research and awareness of PAH.



Pittsburgh PH Support Group Meeting

Saturday - April 27, 2013

When: April 27, 2013
Where: Pittsburgh Airport Marriott
777 Aten Road – Coraopolis, PA 15108

Managing PH – what your doctor may not have told you. Starting at 11 a.m.

(Dr. Ishizawar and Dr. Risbano from the UPMC Comprehensive Pulmonary Hypertension Program will be our guest speakers)

12 Noon – 1:00 PM: ​Questions and Answers were provided during lunch.

Thank you to United Therapeutics and Lung LLC for sponsoring the meeting and lunch.
Notes to follow

What your doctor (probably) hasn’t told you
April 27, 2013 PGH PH Meeting
Michael G. Risbano, MD, MA, FCCP
Assistant Professor of Medicine - UPMC

Outline •

  • PAH versus PH •
  • Classes of PH •
  • Pathophysiology of PH •
  • Risk Assessment
  • Table of Update World Health Organization Clinical Classifications
    Go to “More About PH” on our web site.

    Pulmonary Hypertension Comes in Several Varieties

    PAH .......... WHO Class I

  • Idiopathic PAH •
  • Heritable PAH •
  • Related to: o
  • Connective tissue diseases o
  • HIV o
  • Liver Disease o
  • Congenital heart disease o
  • Diet pills
  • PH with Left Heart Disease .......... WHO Class II
    PH with Lung disease •

  • Systolic dysfunction •
  • Diastolic dysfunction •
  • Valvular disease
  • And/or Low oxygen levels .......... WHO Class III

  • COPD •
  • Interstitial lung disease •
  • Sleep-disordered breathing • Chronic exposure to high altitude •
  • Developmental abnormalities
  • Chronic Thrombosis (clot) PH .......... WHO Class IV

    Miscellaneous .......... WHO Class V

  • PH with unclear multifactiorial mechanisms •
  • Hermatologis (bloodborne) disorders •
  • Systemic disorders: sarcoidosis, metabolic disorders, fibrosing mediastinithis, chronic renal failure and others
  • A slide showing how the blood pumps from the right side of the heart through the pulmonary artery dropping off the c02 (what we exhale); picking up fresh oxygenated blood to go back to the left side of the heart and then throughout our body.

    Slide showing the functional class and the symptoms and signs

  • Functional Class I no signs or symptoms – without resulting limitation of physical activity o
  • Ordinary physical activity does not cause undue dyspnea or fatigue, chest pain or near syncope •
  • Functional Class II Shortness of breath, fatigue – slight limitation of physical activity o
  • They are comfortable at rest. Ordinary physical activity causes undue dyspnea of fatigue, chest pain or near syncope •
  • Functional Class III Shortness of breath, fatigue, pedal edema, dizziness, abdominal swelling, right ventricular dysfunction – resulting in marked limitation of physical activity. o
  • They are comfortable at rest. o
  • Less than ordinary activity causes undue dyspnea or fatigue, chest pain or near syncope •
  • Functional Class IV Right ventricular failure, syncope, death – with inability to carry out any physical activity without symptoms o
  • These patients manifest signs of right-heart failure o
  • Dyspnea and/or fatigue may even be present at o
  • Discomfort is increased by any physical activity
  • Right Heart Catheterization

  • A small tube called a “catheter” is inserted into a blood vessel and passed toward the heart •
  • Measures important pressures in the heart and blood vessels of the lungs •
  • Specific Values o
  • Mean PA > 25 mmHg o
  • Wedge pressure < 15
  • Longitudinal Evaluation of the Pulmonary Hypertension Patient
    Showing Clinical Course (process [tests] treatment, frequency of evaluation
    Stability or instability of patient during these evaluations. Any signs of right heart failure, dysfunction, enlargement, RAP high CI low

    REVEAL Registry – a Simplified calculator – Predictors of short and long-term outcome – Help to decide when to implement therapies

    Risk Assessment and Treat-to-Target Approach for PAH 1.

    Set treatment goals

    1. Rate of progression
    1. WHO-FC
    1. 6MW
    1. CPET
    1. Syncope
    1. Echo findings
    1. BNP/NT – proBNP
    1. Haemodynamics
    1. Clinical evidence of right heart failure
    2. Establish patient’s clinical status
    1. Stable and satisfactory
    1. Stable and not satisfactory
    1. Unstable and deteriorating
    Review treatments regimen
    1. No change: see 2. A
    1. Escalation: see 2. b and 2. C

    THANK YOU



    PITTSBURGH PH SUPPORT GROUP IS
    WALKING PHOR A CURE
    SEPTEMBER 9, 2012

    We're planning a Walk Phor a Cure and Awareness of Pulmonary Hypertension. Join us for a 6 minute walk or longer. We may be able to walk by ourselves, or we many need a walker or a wheelchair or we may have someone walk for us – those who can't walk will be our cheering squad. Either way we will be there to support each other. If you would like to walk longer to help us raise awareness about this disease, you may. Let’s WALK Phor a Cure together. Join us for a picnic; Chinese auction; games for kids; phun entertainment; and a goody bag which will have a shirt, hat and other surprises.

    Registration begins at 9 a.m. at the Beveridge Shelter on South Ridge Dr. (up by the swimming pool area and across from the ball park) Allison Park, PA 15101 Located at North Park which is part of Allegheny County Parks.

    Our walk will start at 10 a.m. then the phun agenda will follow.

    Please register early so we have your shirt size and a reliable food count. Registration for an individual is $25 and $15 for each additional family member. Children under 12 will be $10 each.

    To register or make a secure donation on line: click -> Walking Phor a Cure
    Or you can mail your registration to:
    Merle Reeseman – 330 College Ave., Grove City, PA 16127 – checks to be made payable to the:

    Pulmonary Hypertension Association - memo note PGH – PH

    Start asking your family and friends for donations – have a jar and put in your loose change and bring it to the walk.

    Let’s make this one step closer to phinding a cure of this dastardly disease.



    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}



    November 2, 2011 ~ 11am to 2pm
    General Hospital
    320 East North Avenue Pittsburgh, PA 15212

    Second Floor Magovern Conference Center
    Mackie/Sutton/Berg Room

    Our guest speaker will be: Dr Betsy Blazek-ONeill Medical Director, AGH Integrated Medicine Program She will talk about: Mind, body, spirit, breathing, and relaxation
    Please RSVP to Merle by October 28th either by phone or email 724 458-5573 or ohpa.pher@gmail.com

    Don’t forget November is PH Awareness month. Call your local newspaper and ask if they will do an article about PH/PAH and about YOU. Chances are you had to see several doctors before you were properly diagnosed. Every bit of awareness helps let others know about this dastardly disease. Our doctors at the PH Centers are fantastic – do you realize how many doctors still do not understand how to treat those of us with PAH. If you need help, I have pointers you can use.

    This meeting is sponsored by the Pulmonary Hypertension Association’s Support Group Central Fund. The Central Fund is made possible by sponsorship from Actelion Pharmaceuticals, Pfizer and Gilead Sciences Inc.



    For PAH Patients and Caregivers ~ A PH Phorum

    Thursday, October 13, 2011 6:30 pm – 8:30 pm
    Four Points by Sheraton- Pittsburgh North
    Cranberry Room
    910 Sheraton Drive ~ Mars, PA 16046

    Featured Panelists

    Michele Svitek, RN, BSN
    Coordinator Clinical Programs
    Heart Failure/Pulmonary Hypertension
    West Penn Allegheny Health System
    Pittsburgh, Pennsylvania

    Jennifer Di Lascio, MSN, ACNP-BC
    Acute Care Nurse Practitioner
    Pulmonary Hypertension Nurse Practitioner
    University of Pittsburgh Medical Center

    Featured Speaker– A PAH patient

    Join us for this special dinner presentation and panel discussion to learn about: Evaluating all your treatment options Actively managing your PAH
    It was a great meeting.



    Pittsburgh PH Support Group Meeting

    August 13, 2011 ~ noon
    Clarion Hotel – formerly Holiday Inn - Greentree
    401 Holiday Drive - Pittsburgh, PA 15220

    The Pittsburgh PH Support Group is honored to have Congressman Tim Murphy as our guest speaker -- Due to a conflict, Congressman Murphy was unable to attend our meeting.

    We were fortunate to have a new doctor from AGH do our presentation. Dr. Amresh Raina was on the Dean's List at Harvard University and graduated with a BA Magna Cum Laude in Biology. From there he went on to Columbia University to receive his Doctor of Medicine.
    Not only has he taught; he has also received several awards as well as writing many articles.
    He will speak to us on PH Medications and Treatment Therapies.

    Please RSVP to Merle Reeseman – (Support Group Leader) by August 9th either by phone or email: 724 458-5573 or ohpa.pher@gmail.com

    This meeting is sponsored by the Pulmonary Hypertension Association’s Support Group Central Fund. The Central Fund is made possible by a Platinum level sponsorship from Actelion Pharmaceuticals, Gold Level Sponsor Gilead Sciences Inc., and a Bronze level sponsorship from Teva Pharmaceutical.



    PITTSBURGH PH MEETING APRIL 16TH, 2011

    Announcements and confidentially statement read

    Blue lips campaign - worldwide 55,000
    Holly Thompson – Will be co-leader
    Deanna Modzelewski - Will be the secretary
    Ballet – June 4th Heart Function vs Emotion 412-565-6666 for tickets
    PH on the Road - June 11th at Hyatt Airport - 8:30am registration and ends at 4:30pm – Kids room available
    PH Research and Awareness Bill – new bill out in the Senate S 775 – call your Senators -- Sentor Casey introduced it
    April 26th call in day for PH pts and families – Rep. Brady (TX) 202-225-4901 – have your Congressman call him .
    Our website: www.orgsites.com/pa/pittsburgh-ph-support
    Merle read the poem The Dastardly Disease – thanks to United Therapeutics for making copies which were passed out to patients.

    We met at 10:30 a.m. at the Clarion Hotel (formerly the Holiday Inn) in Greentree. We've met there before :o) 401 Holiday Drive - - Pittsburgh, PA 15220

    UPMC will have several doctors (a rheumatologist, a pulmonologist and a cardiologist) do mini presentations, then lunch and a panel discussion with Q's and A's to follow lunch.

    We will learn about the PH Puzzle and how it is put together.

    This panel of doctors will be hosted by Dr. Michael Mathier who is currently an Associate Professor of Medicine, Director of the Pulmonary Hypertension Program and Director of the Cardiovascular Fellowship Program at the University of Pittsburgh Medical Center.

    Thank you United Therapeutics for sponsoring this meeting.

    COMPREHENSIVE PH PROGRAM
    Dr Hunter C. Champion
    Co-director of the Comprehensive PH Program at UPMC

    COPD
    Interstitial Lung Disease
    Left Ventricular Dysfunction
    HIV
    Sleep Apnea
    Sickle Cell
    Pulmanoligst or Cardiolist

    Patients are often bounced between the two. Physician barriers can create frustration. The center at UPMC avoids this by combining pulmonology, cardiology, transplant, and other services into one center.
    Difference between hypertension and pulmonary hypertension:
    Hypertension is systemic, usually higher than 140/80. Try to maintain blood pressure as low as 115/75 without being dizzy.
    Pulmonary hypertension is high blood pressure in the lungs and pulmonary arteries. Vessels constrict causing the right side of the heart to work harder. The right side of the heart dilates and thickens and this is what causes edema in the lower extremities.
    Goals of program: Proper and early diagnosis, determine best way to characterize PH and best way to follow up with patients.
    Anatomy: blood from the body collects in the right side of the heart and goes to the lung to pick up oxygen back to the heart then out to the body. Moves from low pressure, 35/15mm Hg to high pressure.
    Pathogenesis: risk factors for developing PH are Collagen Vascular Disease, Congenital Heart Disease, Liver Disease, and others
    PH is mean PAP> or equal to 25mm Hg (20-24 is borderline PH)
    PAH is mean PAP>or equal to 25mm Hg + PCWP/LVEDP< or equal to 15mm Hg
    Classifications:
    PAH – Pulmonary Arterial Hypertension
    PVH - Pulmonary Venous Hypertension - left heart disease
    PH associated with hypoxemia COPD, ILD, sleep apnea
    PH associated with thromboembolic disease

    Patients are often misdiagnosed as heart failure, coronary artery disease, arrhythmia, asthma, seizure, psychiatric condition, or out of shape.
    Symptoms are often nonspecific – sob with exertion, fatigue, chest pain, cough, fainting or near fainting
    Physical Exam: may have enlarged liver, pale or blue skin, swollen ankles
    Work Up: may include chest x-ray, echo, lung function tests, cath
    Echo: L side of heart appears pushed in due to R side being enlarged.
    Cath: sometimes will obtain exercise hemodynamics (bike on cath table) this is important for patients who are borderline.
    PH Treatment Goals: increase hemodynamics, exercise capacity, function, and prevent clinical worsening.
    FDA Therapies: Flolan, Ilioprost, Remodulin, Bosentan, Ambrisentan, Sildenafil, Tadalafil We are now using more combination therapy. So, IV's, inhaled, and orals.
    Transplant: last resort, good option for some but not all, UPMC did 134 lung tx last year, 30% were turned down. You can return to work after tx
    championhc@upmc.edu
    scheduling 412-648-6161
    cell 410-599-0101

    PH in CONNECTIVE TISSUE DISEASE
    Dr. Thomas A Medsger, Jr. MD

    Characteristics of CTD: primarily effects females, a multisystem disease, clinical features overlap, blood vessels are commonly targeted, immune mechanisms are involved in tissue injury Rheumatoid Arthritis, Scleroderma, Sjrogen’s syndrome, lupus, idiopathic inflammatory myopathy
    Most common is scleroderma.
    25% of PH pts have CTD but may be an unrecognized portion of PH pts who have not yet been dx with CTD
    Features of CTD not found in PH: Raynaud phenomenon, abnormal nailfold capillaries,
    Antinuclear antibodies in the blood (ANA)
    ANA’s are present in normal people but an abnormal amount suggests CTD. PH pts should not have an abnormal amount unless CTD is present.
    Antibodies anti-Th/To, anti-U3RNP, and anti-U1RNP have the highest frequency of PH.

    PULMONARY HYPERTENSION AND THE LUNGS
    Dr. Euhan John Lee, MD

    Respiratory disorders can cause or worsen PH. Low O2 levels and difficulty breathing can cause stress on the heart.
    Common respiratory problems associated with PH: Sleep apnea, COPD or emphysema, Interstitial Lung Disease.
    COPD (chronic obstructive pulmonary disease) or Emphysema: alveoli (where gas exchange takes place in the lungs) are destroyed. Rx with inhalers, oxygen, pulmonary rehab and smoking cessation. Often associated with cigarette smoking.
    Interstitial Lung Disease: “scarring” of the lungs. Occurs in CTD or idiopathic (don’t know cause). There is poor gas exchange which results in low oxygen levels and difficulty breathing. Can also be associated with occupational exposures.
    Sleep Apnea: characterized by partial or complete obstruction of upper airway during sleep. Common in overweight people or with extra soft tissue. Can have an anatomic obstruction such as nasal polyp, deviated septum, or genetics (shape). Obstruction causes changes in intrathoracic pressure due to breathing against a closed airway. Also, causes decreased oxygen levels during sleep. Can occur hundreds of times per night and pts do not get into a deep sleep. Sleep apnea can increase risk for other medical problems such as PH, heart disease, high blood pressure, diabetes, stroke, atrial fibrillation (abnormal heart rhythm)
    Common features: snoring, pauses in breathing during sleep, daytime sleepiness, fatigue, difficulty concentrating, morning headaches, sleepiness when driving, weight gain or obesity. Only way to truly know is to test.
    Diagnosis: sleep study – measures sleep stages, breathing effort, oxygen levels, heart rate, snoring, and more. There is a portable version.
    Treatment: CPAP (continuous positive airway pressure), mask on nose or mouth that blows air, prevents collapse of the airway, treats snoring. Treatment may also be oral appliances or mouthguards, surgical procedures.

    Question and answer period during lunch

    What determines the number of therapies? Depends on how sick you are and how fast your disease is progressing
    What is the treatment for pulmonary fibrosis? Depends on the cause. Idiopathic – straight to lung transplant. If it is caused by CTD there may be some meds you can use. Palpitations vs Arrythmyia:
    Palpitation – is a feeling. This may or may not be an arrhythmia. May be simply the heart pumping harder to overcome high pulmonary pressure.
    Arrythmia- abnormal heart rhythm. Usually wear an event recorder to determine if there is one. Atrial Fibrillation is the most common one and is rarely associated with PH.
    What is CREST? Calcinosis, Raynaud Phenomenon, esophageal dysmotiliy, sclerodactyly, telangiectasia A group of clinical features that signals connective tissue disease.
    What is diastolic dysfunction? Left heart stiffening
    PH and sleep apnea- do you need a RHC? Depends on symptoms and how high they think the pressures are. Can do just therapy with sleep apnea but if pressures are too high may need to cath.
    Had sleep apnea test but didn’t sleep, what next? Need 2 hrs sleep for dx. If didn’t sleep may need another but have other options such as home study.
    How often do you need a RHC? This varies. In general, and depending on class 1-2 not that often and class 3-4 more frequently to determine if you need more meds.
    Surgery and PH? Surgery is okay if the doc is aware of the PH. This is also true of sleep apnea.

    Pittsburgh PH Support Group Meeting

    Rania's meal was delicious and the recipes are listed on our Low Sodium Recipe page

    On November 5th, 2010 - at Allegheny General Hospital and in their AGH Cancer Center Conference Room we had Rania Harris (as seen on KDKA) as our guest chef. She served us a heart healthy lunch (again, the Recipes are on the Low Sodium Recipes Page). Following Rania's presentation, which included input from Marcia Irwin, dietician; Dr. Sokos was on hand for Q and A. With all the holidays ahead, we will need all the help we can get for eating healthy foods and how to survive those holiday blues.

    November is PH AWARENESS month and before we left for the day, we had a PUCKER-UP 4 PH to help reach a goal for the Guinness World Record™ for blue lips and also by helping raise awareness about PH. Lend us your lips, sponsored by PH-UK and PHA.

    November is always PH AWARENESS month, at our November meeting we had a PUCKER-UP 4 PH to help reach a goal for the Guinness World Record™ for blue lips and also by helping raise awareness about PH. Last tally I heard we (all involved) reached 37000+ Final count almost 55,000.

    Lend us your lips, sponsored by PH-UK and PHA.

    Thank you to United Therapeutics for sponsoring this very special program. My mouth is still watering :o)

    Our meeting for August 14, 2010
    Four Points by Sheraton - Pittsburgh - North
    910 Sheraton Dr., Mars, PA 16046
    Just behind "Bob Evans" on Rte 19

    The Pittsburgh PH Support Group was honored to have Congressman Jason Altmire as our guest speaker

    Congressman Jason Altmire is serving his second term in the U.S. House of Representatives, where he represents all or parts of six counties in western Pennsylvania. He has quickly established himself as one of Congress' leading voices on health care, small business and veterans issues.
    He earned a Master's Degree in Health Administration from George Washington University.
    Prior to his election to Congress in 2006, Jason spent 15 years in health care policy, working as a congressional staffer, a hospital association executive and for the University of Pittsburgh Medical Center.

    Congressman Altimire spoke on:
    Key Health Care Reform Legislation – Quality First Act
    The Affordable Care Act’s New Patient’s Bill of Rights
    Young Adult Insurance to age 26
    Affordable Care Act Update: Implementing Medicare Cost Savings Health Care Bill and why he opposed it.
    Questions included those with disabilities who have no type of supplemental insurance to cover gaps in Medicare benefits.
    People with disabilities must receive Social Security Disability Insurance for 24 months before they become eligible for Medicare. Participants with disabilities reported having no insurance coverage for at least part of the 24-month waiting period. However, the Affordable Care Act (ACA) may increase access to health coverage for people in the waiting period. In the short term, the ACA creates state-based high-risk insurance pools for people with pre-existing conditions who have been uninsured for six months or longer. The ACA also expands Medicaid to non-Medicare eligible individuals with incomes up to 133 percent of the poverty level and establishes health exchanges in 2014. The report, however, underscores the importance of evaluating benefit packages offered through the exchanges to ensure they adequately cover services that people with disabilities need. How true is this?
    Pre-existing condition is not in affect until 2014
    Some items in the new ACA bill will be in effect this September
    Questions and Answers followed and Congressman Altmire mentioned he WILL co-sponsor HR 1030 -- and he did!

    Merle Reeseman ~ Support Group Leader

    This meeting was sponsored by the Pulmonary Hypertension Association’s Support Group Central Fund. The Central Fund is made possible by a Platinum level sponsorship from Actelion Pharmaceuticals, Gold Level Sponsor Gilead Sciences Inc., and a Bronze level sponsorship from Teva Pharmaceutical.



    April 16, 2010 - Pittsburgh Marriott North ~ Cranberry Twp.

    Presentation of the day sponsored by Gilead Sciences was Jessica Lazar MPA, PA-C who is a physician assistant and Director of Cardiology Quality, Research, & Education at AGH’s McGinnis Cardiovascular Institute. She directed the development of the Heart Failure, Transplant, and Pulmonary Hypertension Programs. She earned her Master’s Degree in Physician Assistant at Duquesne University, Pittsburgh PA. and for the past ten years, Jessica has worked with PH and CHF patients, managing a clinic with approximately 800 patients. She has published several articles, conducts research, and directs quality, research, education for cardiology at AGH.
    Jessica along with Drs. Benza and Franz climbed Mt. Kilimanjaro this past February to raise awareness and funding for research for Pulmonary Arterial Hypertension. To know what it is like to have Pulmonary Hypertension, to feel what we feel; to better understand their patients. This just shows how dedicated they are. Jessica shared her journey to the summit.

    Jessica told of the training involved prior to the trip to Tanzania, Africa for the climb up Mt. Kilimanjaro which is 19,334ft. How she climbed the hills, stairs in and around Pittsburgh, climbing the stairs at AGH to get herself in physical condition. She told us the equipment and food required and the special material needed for their clothing. How important the total weight in their backpacks would be. They did have guides who carried the equipment etc. Jessica told us how they climbed high and slept at a lower level to let their bodies adjust to the altitude change. They went through 5 altitude changes from jungle temperatures to an arctic freeze and noted the peak has its own weather system. The air is so thin that even a helicopter would not be able to fly above the mountain. Their group also chose a medium to difficult route to climb which would take longer but would allow their bodies to adjust better to the altitude change. Their group consisted of people from the Netherlands, Great Britain and the United States.
    As they reached closer to the summit, Jessica became ill – altitude sickness with the possibility of food poisoning. “Never did I think I wouldn’t make it all the way up there”, Jessica told us. She was hallucinating and didn’t want to pass out and fall off the cliff. Negative thoughts were consuming her and her legs seemed to stop working. Negativity became contagious with her and she had to overcome that. Her group took turns during the night bringing her water as she also became dehydrated. If she didn’t get her strength back she would have to be evacuated. The next morning she ate some food and slowly felt better.
    She was so close to reaching the summit and over 60% who start that climb do not finish because of illness. The plan for the final day (it took 7 days to reach the summit) was to leave at midnight and reach the summit before daybreak. The light during the day can literally be blinding if you do not have UV protection; fortunately it is a temporary condition. One of the members of their group did go blind.
    Jessica became determined to make the summit but could not climb with the rest of the group as she was still weak and would hold them back; a guide did stay with her. Her determination and positive thoughts made her continue and she did reach the summit shortly after dawn. Jessica said she wasn’t going to miss being in that picture at the summit with Drs. Benza and Franz. She also noted she passed about 30 climbers from various other groups who were lying on the side of the route not being able to finish. At the summit they took their oxygen levels – which indicated they had a temporary form of PAH. They had difficulty breathing and their heart rate had increased.
    The trip down can be somewhat treacherous as well. They are using their muscles in a different way and again is a strain on their bodies. It took 1 ½ days on the trip down. Shortly after her return home she said: “Despite the immense undertaking inherent in this trek, despite unforeseen obstacles (e.g. my illness), and despite any pervasive thoughts of doubt, we singularly forged ahead with grit and determination. We all agreed that summit day was the hardest thing that we have ever done… and it was done for the unified cause: a path to a cure.” Jessica Lazar 2-26-10
    The total funds raised so far is $114,000. After her very emotional presentation we made Jessica an honorary ph’er. Thank you is just not enough for all they have done for those of us in the PH community.
    The below was prior to the presentation.

    The meeting started with Merle reading the Support Group member agreement and confidentiality statement and was followed by:
    • Merle welcomed and thanked everyone for coming. Sharren sent her regrets
    • Those pharmaceutical representatives and specialty pharmacy representatives along with additional clinicians introduced themselves.
    • A special thank you to Gilead Sciences for providing the luncheon and program ~ Climbing for a Cure
    • A moment of silence for those who are not longer suffering.
    • A reminder to contact your Federal Representatives about HR 1030 the Tom Lantos Research and Education Act of 2009; there are only two sponsors from Pennsylvania, which leaves 17. Congresswoman Dalhkemper, north of here and Congressman Dent from the eastern part of PA. Last November Senator Casey introduced S2803 into the Senate… let’s also call or write Senator Specter.
    If your politician isn’t there, ask for the legislative aide. You can also call your out of state family and friends and ask them to call their respective legislators. We only have until November to have this pass.
    • In January AGH hosted our Unity Walk and we had a tour of their research department (the gizmo lab  the rat lab) - we raised approximately $3600 that day. Jessica told us of the involvement and training for the climb.
    • In February Maria Caruso and her ballet group Bodiography Contemporary Ballet did a performance at the Byham Theater with a two night performance of “Heart ~ Function vs Emotion. Holly Tissue Thompson and Merle were part of it. Basically it was about heart transplant or what heart recipient patients go through – the before and after. Dr. McNamara from UPMC suggested adding some PHers to that group… sooo, Holly and Merle whisked across the stage. It was a very emotional performance. Dr. Kormos mimicked an open heart surgery on stage, Maria assisted. We should be getting a DVD soon.
    • Reminder PHA’s 9th International Conference in Garden Grove, CA June 25th – 27th Riding the Wave to a Cure -- cards and info at the sign in table
    • Any new members to PH or PHA – cards for that too
    • Our next meeting will be Aug 14th when Cg. Jason Altmire will be our guest speaker. We will meet at the Sheraton 4Points
    • A request has been made to meet again on Saturday’s; many are still able to work and can’t take the time off – maybe we can rotate our meetings…



    Heart (Function vs. Emotion)

    * World Premiere Ballet by Maria Caruso
    of Bodiography Contemporary Ballet Pittsburgh
    copy then paste: www.bodiographycbc.com

    Live Musical Accompaniment & Original Score by CelloFury (Artists formerly of Cellofourte)
    Sponsored by UPMC & The Pittsburgh Cultural Trust

    This work is inspired by and dedicated to patients with pulmonary hypertension and advanced heart disease. While developing this original ballet, Bodiography Artistic Director and choreographer Maria Caruso shadowed physicians and surgeons of the Advanced Heart Failure Program at UPMC as they cared for patients undergoing Heart and Lung Transplantation. Her interaction with patient support groups for subjects with pulmonary arterial hypertension (PAH) and women with peripartum cardiomyopathy (PPCM) facilitated and assisted in shaping this monumental presentation. Ms. Caruso’s intimate meetings with individual patients and masterful surgeons allowed her to gain insight into their struggles and victories over advanced heart and lung disease in turn utilizing ballet as an artistic medium to raise awareness.

    February 19, and 20, 2010 @ 8:00 p.m.

    Byham Theater - 101 Sixth Street - Pittsburgh, PA 15222 ~
    for tickets call: 412-456-6666

    Any heart failure, transplant or pulmonary hypertension patient may obtain two free tickets (for themselves and a guest). You are also welcome to invite any additional family or friends for a voluntary donation of $10. per ticket which will be directed to the Patient Assistance Fund at UPMC or may also be directed to the Pulmonary Hypertension Association. You do not have to be a patient at UPMC to request tickets; any PAH patient is invited to attend.

    For Tickets call: Patty Stone 412 648-6598 or Shelly Zomak 412 648-6202 By February 10th.

    For additional questions you may call Merle at 724 458-5573 or email: ohpa.pher@gmail.com Merle and Holly are in the performance. :o)



    Heart ~ Function vs Emotion -- A ballet

    The weekend of February 19th and 20th, it was my privilege and honor to participate in a ballet. And yes, I said participate in a ballet. Maria Caruso, Artistic Director of Bodiography Contemporary Ballet was approached by Dr. Dennis McNamara, Director Heat Failure Transplant Program at UPMC; who attended a previous ballet about a health issue. His daughter is an apprentice under Maria.
    Knowing Maria as little as I now do, I can imagine that first vision she may have had. She is a remarkable young woman full of vision, passion, emotion, nimbleness and forth site. She is a go getter and persistent in doing what needs to be done – to the point when it was decided a ballet would be performed about heart transplant patients and pulmonary arterial hypertension patients – she asked and was allowed to watch a heart transplant. Now how devoted is that.
    Notes were sent and a meeting was planned in September. Several heart transplant patients and several pulmonary arterial hypertension patients met for the first time to discuss the possibility of having a ballet in February – heart month. We were to meet at the ballet studio in Squirrel Hill.
    Holly, a phriend and member of the support group, and I decided to see what it was all about. Bryan, her husband said he would drive, so off we went to see what great adventure lay before us. We arrived in Squirrel Hill at the appointed time, there was a nice parking garage not too far from the studio, with just a slight incline to get there. I jokingly said to Holly, I just hope this isn't on the third floor. Well, guess what. I looked at those steep steps, I looked at Holly and Bryan and said there is no way I will be able to get up those stairs to the third floor. Holly felt the same so Bryan went up to the studio and mentioned that we would not be able to do the stairs. Maria came down and we all went across the street to a cafe and had our first of several meetings. During those meetings the intent was to see how we as transplant patients and PAH patients felt – what we had gone through; what we are we going through now. The photo shoot was set on the third floor so Holly and I would not be in the billboard photos that would be placed around Pittsburgh announcing the ballet.
    At that first meeting there were several of both types of patients but with work schedules and distance involved, not everyone could continue meeting as hoped. Four heart transplant patients and two PAH patient would be part of the HEART TEAM. The dancers practiced. we met at the cafe; the dancers practiced more frequently we met at the cafe; we then met at the Club One Fitness Center for our first all together rehearsal.
    We the patients, watched as the dancers danced and Maria counted out the beats. She told us the musicians would be Cello Fury (three classically trained cellist and a rock drummer); she had a tape of the music they specially composed for this ballet. I watched in awe as those dancers moved about to the beat of a heart; to the moan and drone of a sorrowful mode moving on to the upbeat of joy and extended life. The movements were more of a flowing motion. Their movements were graceful and emotional and filled with passion. A lump grew in my throat and tears welled in my eyes as I saw what Maria in her vision had created. The drive home that evening Holly and I spoke of the emotion they had captured of our struggle prior to and now with treatment; you could see the same for the heart transplant patients; their struggle prior to a transplant and now their new life.
    I made fliers for the event; sent them to the appropriate sources. The pulmonary hypertension centers in Pittsburgh, the Pulmonary Hypertension Association in MD so all PAH patients in the area would know of the ballet and attend if possible. UPMC graciously bought tickets and any heart transplant patient or pulmonary arterial hypertension patient and their family members could attend at no charge.
    The special weekend was fast approaching, I was so excited it was a good thing I had some self-control. I did buy myself a new top for the occasion – purple with a black sparkly bow on it and a black sweater with sparkles too. They were on sale, I'm sure left overs from New Year's Eve. Holly and I decided we would wear something similar – color-wise – purple to match our lips. Once someone asked me what shade of lipstick I was wearing. I said it's called lack of oxygen... ;o) Holly bought me a “bling” to match hers. A silver heart with purple jewels throughout. It is beautiful.
    On Friday we were to meet at the Byham Theater at 1 p.m.. This theater was built in 1904 so you can imagine the culture that oozes from it's walls. It was restored in 1999 so technically/electrically it is very up to date. The murals and such are typical of the turn of the century – the other turn of the century. It is a captivating structure. We were to enter at the back of the building and had a special code to punch in. We opened the door and low and behold STAIRS, oh no. I had my cart with my spare meds and spare oxygen, there was no way I would be able to lug those up the stairs, then Holly found an elevator. Whew, saved again.
    The dancers were stretched out in the main lobby, Maria was counting out the beat as they moved about and got their muscles ready for the evening performance. Watching them wore me out and we hadn't even started. I remember back when I could do things like that. I took dance when I was a kid... 4 or 5 years old but I always loved to dance – to go out dancing. They use to call me twinkle toes because once I got up on the dance floor, I never sat down until the music stopped. Now, well now – we won't get into that. I can tap my toes and shake my shoulders a bit and roll my hands/arms until I'm a little sob (that's short of breath) thank you very much.
    The rehearsals began and yes there is a 's' at the end. We went through the performance; Maria is an excellent director – lighting had to be just right; those of us who are non performers had to learn how to walk into those lights that are set on the side for the proper ambiance. Several adjustments had to be made and re-rehearsed again – for the dancers again and yet again. Things had to be perfect. We had a break which gave us enough time to go next door to the Renaissance Hotel for a light dinner. Several of us went together and one of the heart transplant patients saw some friends from CORE (Center for Organ Recovery & Education) and when Pat told them what we were doing, they bought our dinner. Such an incredible gesture. We headed back and when we walked into the theater itself there were the dancers on stage still going over their performances. Practice makes perfect. One more run thru and then it was time to put on our best and get ready for the real thing. I didn't wear a tutu. When the curtain opened we were in a tableaux arrangement; the music began, the dancers danced. Each of us either had a dancer or maybe two or three dancers to express our function.
    “Act I – Function: The first portion of Heart is an abstract rendering and representation of the organic function of the heart. It begins with the introduction of our collaboration and the visualization of the connection between each patient and their heart. This has been created to demonstrate the color, texture, movement, flow, and macrobiotic behavior of the organ itself as seen and felt from the eyes of the choreographer during heart transplantation.”
    My dancers were Nicole and Maggie who did an excellent presentation of the struggle we with pulmonary arterial hypertension have and as I explained to them my struggle. “Act II – Emotion: The second portion of Heart depicts the physical preparation prior to heart transplantation as well as the operation itself. The surgery will be visually demonstrated by world-renowned transplant surgeon Dr. Robert Kormos. The second act then displays the choreographer's physical interpretation of each of the patients' experience with heart disease (PAH too)
    “Patient and performing artists meet again to represent the unification of a common organic disease. As the patients depart we prepare for heart transplantation and anesthesia. “Each patient's heroic story is represented by yet another performance by their now emotional representation.” During Act II as Dr. Kormos and Maria (his assistant) performed open heart surgery a dancer mimicked the struggle a heart would have prior to and during the surgery. The doctor then lead the dancer off stage representing the old heart and a new dancer dressed in white was led on to represent the new heart prior to blood being added.
    The dancers did single performances; in groups of several of the artists and in groups of just two or three. When it came time to do the 'patients' emotion the audience would note that each patient sat at the edge of the stage while their dancers showed the struggle some of us have gone thru and some are still going thru (PAH patients). It truly was very emotional. Nicole and Maggie showed the pressure that I have felt in my chest when Maggie stood on top of Nicole! Then the closing of that segment Nicole dragged off Maggie showing the weight of my oxygen tank and all the other just-in-case stuff I have – such as my Flolan, my mixed meds my just in case meds.
    Because of the length of our stay – being there early for rehearsals, I knew I would run out of oxygen in my marathon tank so I had to bring back up; I also had to bring my mixed medicine and my back up medicine; a change of clothes etc.everything for this now just-in-case life I lead as do other pulmonary hypertension patients lead. I used my red carry cart. Friday night I left if back stage, Saturday night I used it on stage. The back up oxygen is very heavy and Friday night it slipped off my shoulder and wrenched my arm. Soooo Saturday night the cart was with me.
    After the performance there was a question and answer time and the audience had the opportunity to ask questions. Many were directed to the heart transplant patients but several were directed to me or Holly with questions about pulmonary hypertension. Each of us had a chance to share our feelings and emotion of the night and it truly was an emotional time. Tears flowed as we shared our appreciation for the accomplishment and of the awareness that was presented this past weekend. This performance was awesome and Maria and her dancers are phenomenal. Maria gave each of the patients a bottle of champagne and some gummy fish, we gave her a bouquet of red roses. Holly contacted me Saturday morning and asked if I had any phenomenal bracelets – those that say phenomenal hope (for and about pulmonary hypertension) – she wanted to give two to her dancers. What a wonderful idea so I made plans to give Maria and each dancer a bracelet for being such phenomenal people; we also gave our new phriends, the heart transplant patients one for being such phenomenal people for what they went thru and the hope they now give us.
    After the performance we exited stage right... I gathered up my coat, used oxygen tanks and was heading to the lobby to meet my family. Oops... the incline in the theater -- how soon I forget things. I thought it would be easier for me to meet them in the lobby than for them to fight the crowd and come get me. I saw a young man and asked if he would pull my cart up to the lobby. He said he would and was surprised with the weight of the cart even though it was on wheels.
    This was a phenomenal event – a time in my life I will cherish forever. I thank all those who made it possible and also to all who participated in making it a true and emotional success .



    UNITY WALK ~ PITTSBURGH ~ PATH TO A CURE

    On January 29, 2010, plans had been made to have a Unity Walk to honor and make note of Pulmonary Hypertension Specialists and Pulmonary Hypertension Association Scientific Leadership Council members, Drs. Ray Benza and Robert Frantz, along with Jessica Lazar, PA, who will know firsthand what it means to be breathless. In a joint effort to raise global awareness of PH, they will tackle the ultimate challenge - climbing Mount Kilimanjaro, Africa's highest mountain! Dr. Benza and Jessica from Allegheny General Hospital and are not doing this just for those patients they have but for all those PH patients in the PH community as is Dr. Franz do this climb for all of us.

    Western PA is hill country not like Mt. Kilimanjaro but very hilly; and Pittsburgh itself was built on or around hills. They have many stairways to get from one street to another – a totally different level and very steep – we’re not talking second story to a home level we are talking up the side of a hill level. It is also Steeler County and if you are into football you will know what that means. Pittsburgh is also known as the city of champions this past year the Steelers won the Super Bowl and the Penguins won the Stanley Cup. Whoo Hoo

    Now for the Unity Walk, we were to meet in the Sandusky Waiting room where Michele, nurse specialists for PH, then took us to the 8th floor PH Research Area. Being from western PA and in the month of January our flyer stated weather permitting. Some days in January can be balmy which would be just above freezing; this was not one of those days. It was 8 degrees when we left home with a wind chill of -2. THAT’s COLD! The weather channel predicted snow flurries in other parts of western PA so I was not expecting the usual turnout nor even as many of those who had signed up.

    We went to the conference room and in the center of the table was a cupcake Mt. Kilimanjaro – really cute and very tasty. At one end was a mountainous stack of lunch boxes for after our walk luncheon; the other end had backpacks with a water bottle, stress ball and an exercise stretch band. We were set and ready. On the white board was a hand drawn Mt. Kilimanjaro with stick people of Drs. Benza, Franz and Jessica with “Mt. Kilimanjaro or Bust” written in the mountain.

    Jessica Lazar, a Physician Assistant at Allegheny General, is going on this infamous climb (be sure to read her blog) and she told us of her training involved. Climbing those stairs in the Burgh, climbing the stairs at the hospital. She mentioned that when Dr. Benza makes his rounds along with the Fellows, they use the stairs and some of that would include going up to the 16th floor. Jessica smiled when she told us that some of those Fellows are losing weight while being in training with Dr. Benza.

    She explained the equipment required – special shoes/boots, wool as opposed to cotton, layers of clothing but not too much or you will sweat and that could freeze. The material required for climbing has to be something that will keep the moisture away from your body – not keep it close to you – think of a bath towel and how that holds moisture. Cotton kills is a term used by climbers.

    Through these past months of training Jessica has climbed “hills” around Pittsburgh, climbed those steps mentioned earlier and she learned to adjust her clothing as the weather went from fall to winter as Mt. Kilimanjaro will go from the jungle heat to an arctic freeze. She showed us a little lamp, like a miners lamp (remember we’re in coal country too) and this one had stretchy string to put around her head as even one with a leather strap or a “hard hat” type would add extra weight. The climbers weigh their clothing and what they will be carrying in their backpacks. The weight they carry when they start in the morning may only be a few pounds but by evening it will feel like hundreds of pounds. So every ounce counts. Reminds me of my Flolan pouch; it may only weigh 4 or 5 lbs but some days it feels more like 20 lbs and again that is a reason these clinicians are doing this – to feel what we are going through to raise funds for research and awareness of this dastardly disease. Jessica’s emotional reason why she is doing this put a lump in my throat.

    She told us of the packers or guides that are required to trek along with our climbers. They will carry the tents, major food and other heavy equipment. When at the lower levels of the mountain you are not allowed to go off alone as those “hazardous” animal are on the loose – lions and leopards and snakes – oh my; at a higher level above the jungle they are still some critters to be aware of. Above the tree line no hazardous critters – just bitter cold.

    Each day a climb will consist of approximately 8 hours up. They reach a level and go off to the side to adjust to the altitude change and Jessica told us it’s two steps up one step down and a side step along the way. I wonder if they’ll make a Mt. Kilimanjaro two step dance ;o). The packers set up the tents and to prepare their evening meal. The climbers will carry enough food and water for a days use; along with several just-in-case items. Jessica mentioned how she will have difficulty with not being able to shower but she will be taking those hospital wash your hair dry packets. Where there is a will, there is a way. She has been told the BO can be a challenge.

    This climb can create altitude sickness and it is recommended they drink 4-5 Liters of water per day, and eat lots of food for energy. A common symptom of altitude sickness is loss of appetite, nausea, and vomiting… and if they don't eat and drink, the altitude sickness gets worse. She told us how they may not realize this symptom and how they have to rely on each other when and if they get loopy to do what they can to overcome this illness or it’s a quick trip back down the mountain. Jessica has given up caffeine now as stimulants can create an issue. She said it’s better to have withdrawal symptoms now then when climbing up that mountain. Jessica plans on taking her 02 sats when she reaches the summit and one of our members volunteered a pulse ox (light weight) for the climb. The climbers also hope to be able to communicate with PHA on a regular basis and that must be some phone…

    The last climb to reach the summit will take approximately 15 hours and this will be done at night as the bright sun light will be too overwhelming for a day climb. The climb down will take one or two days as opposed to 7 days to reach the summit. Climbing down is a reversed strain on those leg muscles and the knee so caution is still in vogue. We thanked Jessica for sharing her peradventure with us and to let her know how much we appreciate what she and the doctors are doing for all of us.

    Michele, Carrie and Lynn then introduced us to staff who work in the research department of the Gerald McGinnis Cardiovascular Institute at Allegheny General Hospital and we gathered ourselves up for our Unity Walk – a tour of the PH Research department. Our first stop was the gizmo lab (Bio Engineering Lab) where Dennis Trumble, a bio engineer, showed us a heart made to scale and pointed out the pulmonary arteries, the aorta and other tubes either going to or from the heart. He also showed us an oversized heart and explained why it could be in that condition. Dennis then showed us a pacemaker, a hydraulic pump of sorts and a gizmo that was created at AGH and he is working on – all these to help the heart and lungs. We then went on to Dr. Benza’s storage room, the Functional Genomic Lab, where he has DNA samples stored in several freezers. The room is specially equipped to handle the heat from the freezers so the room is basically at an even temperature. Then across hall to a testing lab (Gene Therapy Lab), where rats are the guinea pigs; Dr. Michael Passineau, Associate Professor, showed us various tests and procedures which are now in progress and the equipment that is used and how they will benefit us as patients or help retard the progression of PH. There is a new not-ready-for-trial-as-yet med and the catheter used on the rats is about the size of a human hair. When looked through the microscope it looks about the size of a thin straw. Some of us were able to take a peak. It truly is amazing what is going on in their research department. The rats are doing well.

    Jessica then took us down the hall where a mural her son’s daycare classmates made out of construction paper. A giraffe and a lion, whose mane is made from their hand prints. “They done good”.

    Now back to the conference room for lunch and the raffle drawings. We were told that the “baskets” were brought to the cafeteria each day with special totes in front to know which basket you want to win and where to place your ticket. There were a dozen or more baskets to choose from: restaurants, wine and cheese, books, coffee, attend a sports game and a doggie basket and the basket itself was a doggie bed, it also had a food dish and various other goodies a dog would enjoy :o) several others as well. AGH collected $1300 from the raffle drawing.

    The Pittsburgh goal for the Unity Walk was $2000 and each support group across the country was asked to try to raise $1000. Actelion is having matching funds and the goal is $100,000.; we are very close to reaching that goal and many of the support groups haven’t even had their Unity Walk as yet.

    My agenda was very brief but I did ask all to call or write their legislators – often, to either co-sponsor HR 1030 or S2803. Info about the upcoming conference in CA and don’t forget your flu shot.

    I want to thank United Therapeutics for providing our lunch for the day, also Gilead Sciences for providing our backpack specials and especially the nurses and staff at Allegheny General Hospital for all the help they provided prior to, and during this walk. Those members who came submitted the contributions they collected, several of the pharmaceutical representatives who participated added their donations and our total for the day was $3250. and monies are still coming in.

    Awesome event and such a very special day.

    Merle Reeseman ~ Co-Support Group Leader

    To read the climbers blog go to: http://pathtoacure.blogspot.com/

    On February 26, 2010 these climbers reached the summit !!!



    Unity Walk- Pittsburgh PH Support Group ~ January 29, 2010

    Please support our climbers! A Unity Walk will be held, followed by a “box lunch” and a chat with Dr. Benza, Jessica, and members of the team. Raffles will be there to raise additional funds. Come join us!
    WHEN: January 29, 2010 at 11 a.m. (weather permitting)
    WHERE: AGH, 320 East North Avenue, Pittsburgh, PA 15212. We will meet in the Sandusky Entrance waiting room (near ER entrance), then to the 8th floor CV Research Center in South Tower for our walk and lunch.
    RSVP: to Merle by January 27th ~ 724 458-5573 - ohpa.pher@gmail.com

    ~ ~ ~ ~ ~ How you can help: ~ ~ ~ ~ ~
    • Participate in the walk, and ask people to sponsor you
    • Be a “virtual walker,” if you can not attend ~ walk with us from home at 11:30 as a reminder of what these clinicians will be doing for us… and ask people to sponsor you.

    How to raise $100 in just 10 days

    It’s easy! Just ask 10 people for $10! ~ Then everyone else and raise more :o)
    (Ask friends, relatives, neighbors, parents, children, co-workers, social group members…) Have checks made payable to the PHAssociation and in the memo line put

    ~ ~ ~ ~ ~ Unity Walk – PGH. ~ ~ ~ ~ ~

    Bring these donations to the Unity Walk and they will be forwarded to PHA.

    If you walk with us as a virtual walker, you can mail donations to the Pulmonary Hypertension Assoc. – 801 Roeder Rd. - Suite 400, Silver Springs, MD 20910.
    Remember to include Unity Walk - PGH in the memo line,
    or donate on line:
    Make a Donation again mention Unity Walk - PGH

    Path to a Cure – when PH Specialists climb Mount Kilimanjaro, Africa’s highest mountain, in Support of a Cure for PAH. It will take approximately one week to climb the mountain and only a day to come back down.
    This February, Dr. Ray Benza & Jessica Lazar, PA (AGH) and Dr. Bob Frantz (Mayo) aim to increase global awareness of PH and raise

    ~ ~ ~ ~ ~ ~ ~$100,000 for PAH and the PHA.

    Read their blog: Path to a Cure and then go to: PHA Site about UW



    MEETING ~ NOVEMBER 6, 2009

    3 rd Annual PAH Jeopardy

    Hosted by the PH Program at Allegheny General Hospital
    320 East North Avenue ~ Pittsburgh, PA 15212
    November 6th ~ ~ 11:30 a.m. 'til 2 p.m.
    2nd Floor Reginald Pugh Cancer Center
    Park at the James Street Parking garage 5th floor that ramp will lead to the 2nd Floor Cancer Center

    Hone up your skills for a phun time playing PAH Jeopardy ~ questions about PAH ~ also the city of champions

    Lunch will be provided ~ Prizes to be won
    Please RSVP by November 3rd to either
    Sharon Yamron at 412 829-0069 or Merle Reeseman at 724 458-5573



    Special Fund Raiser

    Passionart Hearts for Pulmonary Hypertension
    Please join us November 15, 2009 5p-10p
    MOLLY BRANNIGANS Traditional Irish pub - 660 Washington Rd., Mt. Lebanon, PA 15228

    Entertainment featuring ~ Gramsci Melodic & others
    Celebrity bartending all night

    Donation $20 in advance, $25 at the door

    For tickets call 412.359.3285
    Proceeds benefit the Allegheny General Hospital PH patients education and research fund


    A SPECIAL DINNER MEETING is coming to Pittsburgh for PH patients and caregivers.
    United Therapeutics is having a Patient Phorum Dinner at
    The Original Fish Market ~ The Westin Convention Center-Lobby Level,
    1001 Liberty Ave., Pittsburgh, PA 15222-3714
    6:30 to 8:30p.m.
    Complimentary Valet Parking
    This will be on September 29th -- Dr. Srinivas Murali and
    Lynn Rayl-Miller will be guest speakers.
    A PAH Patient will be a featured speaker
    Contact Paul Womack at 800 356-8584 by September 25th


    On August 1, 2009
    At the Omni William Penn Hotel -- downtown Pittsburgh

    Congressman Mike Doyle was our guest speaker and he spoke to us about our HR 1030 bill and updated us on the new HR 3200 the health care reform bill --it's still in the works. Go the the link on the left -- Library of Congress and look up: HR 1030 is a very short read and HR 3200 is approximately 400 pages or more by now :o)

    ~
    U.S. Representative Mike Doyle

    Special Report on Health Care Reform

    Congress is currently considering legislation that would make significant reforms in our nation's health care system. Changes in our health care system are of obvious concern to all Americans, and any proposal that makes major changes is inevitable controversial. I've put together this short report to let you know what health care reforms Congress is considering and what I am working to achieve as this debate goes forward.

    OUR HEALTH CARE SYSTEM TODAY – AND WHY CHANGE IS NECESSARY
    Today, most Americans have health insurance, we have well-trained and well-equipped health care providers, and our country is the world leader in medical advances. Most of us are fairly happy with our health insurance. So what's the problem?
    There are several major concerns:
    The United States currently spends far more on health care than other industrialized countries ($2.5 trillion a year, or roughly 1 in every six dollars we spend). Most estimates indicate that our health care cost will double by the year 2020.
    The average American family currently spends $12,700 a year on health insurance – not to mention co-pays and deductibles – and medical costs are rising dramatically faster than inflation.
    More than 45 million Americans have no health insurance, which can limit their access to care and ability to pay for the care they receive. There are 50,000 people in our Congressional District who are currently uninsured – that's one out of every ten of our friends and neighbors. Many of the uninsured can't afford health insurance because they have pre-existing conditions or they've lost their jobs. Those of us with insurance pay higher premiums and co-pays to offset health care providers' costs for treating the uninsured. Last year, health care providers in Pittsburgh provided half a billion dollars' worth of free health care to people who had no insurance and couldn't pay their bills.
    For all this spending, our country only scores average or lower on indicators of health care quality compared to other industrial countries – and many Americans are not getting the care they need.
    Because of these concerns, the current situation is not sustainable. If we do nothing, or just tinker around the edges, the cost of health care in this country will grow to unacceptable, unaffordable levels.

    WHAT SHOULD THE GOALS OF HEALTH CARE REFORM BE?
    I believe that health care reform should have three major goals:
    Americans who are happy with their current insurance coverage should see no change in their plan.
    Get health care cost under control. That means promoting prevention and wellness.
    Guarantee that all Americans have access to affordable, high quality health care.

    Doing just one or two won't be enough. If we don't get health care cost under control, we won't be able to afford to cover the uninsured for long. And failing to ensure all Americans get the high quality of health care they need is in my opinion unacceptable.

    WHAT IS IN THE PLAN THAT CONGRESS IS CURRENTLY CONSIDERING?
    Both the House and Senate are currently working to draft health care reform bills. The details are changing every day, but the broad outline of each bill is similar.
    Though some critics have charged that these plans would socialize our health care system, the reality is that both bills continue the existing employer-based health care system. Under each bill, most Americans with health insurance would see little or no change. Each bill would, however, improve upon the current system for small businesses, the uninsured, and the unemployed.
    The House bill would prohibit insurance companies from denying coverage or charging higher rates for pre-existing conditions. If you lost your job or your health insurance, you would be guaranteed access to affordable, high quality health care. The bill would also establish annual and lifetime caps on out-of-pocket expenses, which should prevent many of the bankruptcies that are caused each year by medical expenses.
    The House bill would require employers to either provide their employees with health insurance or pay a percentage of their payroll into an insurance fund. The money paid by businesses that didn't offer their employees health insurance would be used to help pay for the health insurance premiums for their employees. Most of those employees (employees with incomes of up to $88,000 for a family of four) would receive affordability credits from the fund to help them pay their premiums. Roughly 170 million Americans have private health insurance coverage through their employers, and the number of individuals receiving employer-provided health insurance would actually increase by several million people under this plan.
    The House bill would set up a national health insurance exchange. The exchange would be like a supermarket, offering a number of private health insurance policies and one high-quality public option. Individuals – not the government and not their employers – would be able to choose which of these plans to purchase – either a private plan or the public option. They'd have much more choice and control over their health insurance than they do now. Most households (with incomes up to $88,000 for a family of four) would receive health care credits from the insurance fund to help them pay for these premiums. Small businesses would receive tax credits to help them with the cost of paying for health insurance for their employees. This assistance for individuals and small business would cost about $100 billion a year – or $1 trillion over ten years – but an independent analysis by the nonpartisan Congressional Budget Office concluded that the plan would pay for itself. Over $500 billion would come from the savings produced by reform. The rest would be paid for with the payments from businesses that didn't provide insurance to their employees and a new tax on the income of the wealthiest households – the latest proposal would affect households with incomes of over $1 million a year. 99 percent of Pittsburghers would be unaffected by this new tax.
    Medicare and Medicaid would continue to cover the poor and the elderly (and the House bill would eliminate the donut hole in Medicare's prescription drug benefit). Military personnel and eligible veterans would continue to be covered by the Defense Department's health care system (TRICARE) and the VA.

    WHAT DO YOU THINK ABOUT THE HEALTH CARE REFORM?
    I'd really like to know what you think Congress should be doing to fix our health care system.. Your feedback will help me represent you better as debate over health care reform continues. Please take a minute to call my office, send me a letter, or write me an email and let me know what you think Congress should be doing to fix our health care system.

    Sincerely, Mike Doyle ~ Member of Congress
    Phone: (412) 261-5091 or (202) 225-2135
    Email: rep.doyle@mail.house.gov
    401 Cannon House Office Bldg., Washington, DC 20515
    This information is current as of July 30, 2009

    ~ ~ ~ ~ ~ ~ ~ ~

    Top 12 Questions about Health Care Reform ~ HR 3200

    Q 1: I have health insurance, I'm happy with my health insurance, and my employer pays for my health insurance, Why should I support health care reform? What's in it for me?
    A1: Most Americans with employer-provided health insurance will see little or no change. If you have health insurance and you like it, you can keep it. BUT the House health care reform bill (H.R. 3200) would ensure that if you lose that coverage, you would be guaranteed access to an affordable, high-quality health insurance policy – and that you couldn't be denied coverage for a pre-existing condition or be subject to a lifetime cap on the benefits your insurance plan would provide.
    Q 2: I'm unemployed and I'm currently uninsured because I can't afford to pay the monthly premiums. What happens to me under this plan?
    A 2: The bill would establish a health insurance “supermarket” where you could purchase health insurance at lower group plan rates – and where you would be able to choose your health insurance from among a number of private plans and a high-quality public option. The bill would provide “affordability credits” to households with incomes up to 400 percent of the poverty level ($88,000 for a family of four) to help them pay their health insurance premiums. The affordability credits would be provided on a sliding scale, so that the assistance would phase out as household income rose.
    Q 3: Will this plan raise my taxes or my medical expenses?
    A 3: The plan would only raise taxes on the wealthiest Americans. The President has proposed that the tax be levied only on households with incomes of more than $1 million a year. If you don't make $1 million a year, you wouldn't see your taxes rise as a result of this bill. In the coming years, the plan would reduce the growth in the cost of medical care – so you would actually be paying less than if we did nothing.
    Q 4: Would this bill take away my choice of doctor or treatment?
    A 4: Absolutely not. In fact, the bill would preserve your choice of doctor and reduce profit-driven decisions about which treatment your insurance company would pay for.
    Q 5: Will some government bureaucrat interfere in my relationship with my doctor or my treatment options?
    A 5: No. In fact, this bill would give patients and their doctors more power to make these decisions – not government bureaucrats or profit-driven insurers. Right now, insurance company bureaucrats are making decisions about most Americans' health care. This bill would prevent those insurance companies from denying care or coverage based on pre-existing conditions, jacking up rates based on pre-existing conditions, or imposing annual and lifetime limits on benefits.
    Q 6: Would this bill mean a government takeover of health care? Would a government-run plan reduce the quality of my health care?
    A 6: No, the number of Americans with private health insurance is estimated to grow – not shrink – under this plan to about 180 million people. In contrast, the nonpartisan Congressional Budget Office estimates that the number Americans in the public health insurance option ten years from now will be between 9 and 10 million – just 3 percent of all Americans. No one will ever be forced into the government plan – and people buying insurance in the health insurance “supermarket” will have more private insurance choices than they have now, as well as a public insurance option. Finally, participants in Medicare, the government-run health insurance plan for the elderly, express higher satisfaction with their health care than participants in private health insurance plans.
    Q 7: I've head that more than 100 million Americans would be forced into a government-run health insurance plan under this bill. Would I be forced into a public plan?
    A 7: Absolutely not, No one can ever be forced into a government-run health insurance plan under this bill. IN fact, most working age people would continue to receive private health insurance through their employer. The unemployed and people whose employers don't offer health insurance would be able to buy insurance policies (at lower group rates) through a health insurance exchange that would act like a supermarket for a number of private insurance plans and one public option. The no-partisan Congressional Budget Office estimates that only about 9 – 10 million people (about 3 percent of all Americans) would choose the public option after the health insurance “supermarket” is up and running.
    Q 8: Is this socialized medicine like in Canada or England?
    A 8: No. In England, everyone belongs to a government-run health insurance plan and all of the doctors and hospitals are government employees. In Canada, doctors, hospitals, and other health care providers are private enterprises – but everyone belongs to a government-run health insurance plan. The plan being considered by the House retains our country's current combination of private health care providers and employer-provided private health insurance for most working Americans; the big change under this plan would be the establishment of a health insurance “supermarket” for the unemployed and people whose employer doesn't offer health insurance coverage – those people would have a choice between a number of private insurance plans and one high-quality public option. BR>Q 9: Isn't this plan being rushed through Congress without adequate thought or debate?
    A 9: Absolutely not, I, like most of my colleagues on the Energy and Commerce Committee, have been working on these issues for years. We've held dozens of hearings on the issues addressed on this bill. The specifics of this plan are still being drafted, and the bill won't be complete until all of its provisions have been thoroughly analyzed. Even after the Committee completes and reports out a bill, that's only the first step in the legislative process; the bill must then be considered by the full House, the Senate must draft and approve a similar piece of legislation, and then the final bill has to be hammered out by a joint House-Senate conference committee, after which it has to approved again by both the House and Senate. I anticipate that completion of this legislation will take several more months at least.
    Q 10: Will this plan ration health care?
    A 10:No, quite the opposite in fact. The bill calls for private insurance companies to offer a basic package of health care benefits and places no restrictions on the benefits that private health insurance plans could offer. Similarly, the public option would offer the same basic package of benefits required of public plans. Moreover, unlike now, where private insurance plans can put a cop on annual or life-time benefits, private plans would be required to cap annual and life-time out-of-pocket expenditures by patients under this bill.
    Q 11: Will this plan cover illegal aliens?
    A 11: No, Section 242 of the bill specifically prohibits federal financial assistance for illegal immigrants.
    Q 12: Will this plan use taxpayer money to pay for abortions?
    A 12: No. Consistent with existing federal laws prohibiting the use of taxpayer money to fund abortions, there is language in the bill preventing federal money form being used to pay for abortions.

    From the Office of Congressman Mike Doyle
    This information is current as of July 30, 2009



    ON APRIL 4TH We met at the Marriot Four Points in Cranberry Township
    We had a cooking demonstration. Rania Harris (as seen on KDKA) taught us how to tempt our palates. She demonstrated cooking a healthy meal without using salt and using different spices or herbs. Also, Leslie Bonci, a nutritionist from UPMC advised us with helpful hints on how to eat a healthy meal.

    Visit our new RECIPE page ~ this will have what Rania cooked for us at the meeting as well as some recipes that phriends sent along.
    View Leslie's helpful hints on our Diet & Nutrition page.

    Send me your favorite recipes, maybe we can make a cookbook of our favorite low or no salt meals to share with all. You can also include recipes you don't know how to convert, which spices to use with which foods.
    Email recipes and questions to Merle at ohpa.pher@gmail.com or call 724 458-5573.



    Thursday, December 4, 2008 ~ 11:00 am – 1:30 pm
    Hosted by: The PH Program at UPMC

    Over Coming the Winter Blues
    By: Susan Stollings, PhD
    Panel Discussion to follow ~ Including PH physicians and nurses
    Location: Scaife Hall Conference Center ~ 412-647-1895
    200 Lothrop Street ~ Room 1105, 11th floor ~ Pittsburgh, PA 15213
    Lunch ~ Door Prizes
    Complimentary valet parking is available at the UPMC Presbyterian Emergency Room Entrance

    There were approximately 45 people in attendance for this meeting.

    Sharren Yamron called the meeting to order at 11:15am by giving some background on the Pittsburgh PH support group. We held a moment of silence for those that have passed on and lost their fight. She also introduced the speaker, Dr. Susan Stollings, who was invited to talk to us about “Overcoming the Winter Blues”. Dr. Stollings who is a psychologist with Behavior Medicine and Oncology at UPMC.

    Winter blues, or Seasonal Affective Disorder (SAD), are a feeling of sadness when the days shorten and we have less exposure to the sun. It is four times more common in women than in men. It also tends to run in families and is rarely seen in younger people. Holiday stress, concerns over money and the confinement that results from bad weather often exacerbate these feelings. People will show signs of boredom, restlessness, irritability and that feeling of cabin fever. They may increase the number of carbohydrates they consume or have emotional eating and show a decreased interest in their typical activities. When feeling this way you should also eliminate alcohol.

    Lack of sunlight is the main cause of the winter blues. The level of serotonin, a neurotransmitter in the brain, is decreased, while at the same time the level of melatonin, a hormone that makes us sleepy, is increased.

    How do we know if it is the winter blues or something more serious such as depression? Winter blues usually start in the fall when the days start to shorten and get better when spring days arrive. The biggest factor that separates these two is the severity of the symptoms. People with depression are always sleepy, just don’t want to do anything, and have a sense of hopelessness, their energy level is down.

    Staying warm helps, eating comfort foods such as soups and cooked vegetable instead of raw veggies can change your attitude. Exercise will help relieve stress – small steps. Always try to think positive – sometimes just watching the news can give you a negative feeling and that can become a pattern. Give yourself a fun day.

    Dr. Stollings distributed a handout that she prepared with all of her suggestions for keeping the winter blues at bay. A copy of this handout is attached.

    We then had a delicious luncheon sponsored by the UPMC Pulmonary Hypertension Program, Gilead, United Therapeutics, Accredo and Curascript.

    The luncheon was followed by an open question and answer session with the UPMC Pulmonary Hypertension team – the MC was Dr. Michael Mathier; and the panel consisted of Drs. Rene Alvarez, Navin Ragagopalan, and Mark Simon – as well as, Winnie Teuteberg (Palliative Care MD) and Mark Gladwin, a new pulmonary doctor at UPMC.

    The first question posed to the panel was about patients with scleroderma and PH. About 10 to 20 percent of all scleroderma patients will get PH. There is a great appreciation of this relatively high risk, so now patients diagnosed with scleroderma are screened earlier and caught earlier for pulmonary hypertension. The doctors are performing studies to try and determine which of these scleroderma patients may be at a higher risk for getting PH. They are also looking at the molecular level to determine these causes. There is a study called DETECT that is focusing on 500 scleroderma patients. Some drugs, Gleevac and Retuxin, may be found to be useful specifically in this group.

    Dr. Teuteberg spoke briefly on how she tries to help out with treating a patient’s medication side effects. She states that many of these physical symptoms are hard to treat and what works for one person, may not help a second person at all.

    Dr. Mathier emphasized the importance of a RHC (right heart catherization) to determine if a patient does have PH and which also helps determine the proper treatment to be used. Treatment should not be given without a RHC. He mentioned that echoes and testing are good indicators but the RHC is the golden rule. He feels it best to see a PH specialist at least once a year if you are being treated by a non specialist.

    Merle Reeseman closed the meeting by recognizing the different drug representatives that were there. She also asked for ideas for future meetings to be brought to her and Sharren’s attention. Merle mentioned the passing of HR 6568 (the Tom Lantos Pulmonary Hypertension Research and Awareness Act of 2008) in the House and the importance to now contact our Senators although with the time of year that it is we may have to start all over again next year with the new Congress. Folders were made available with information about PH for both patients and clinicians. Attendee’s were asked to bring them to their family doctors or other doctors who may want to know about PH. Merle also had envelopes for membership to PHA or for a donation. Meetings will start again in April.
    Joan Zang then had the drawings for the door prizes.
    Thanks to Holly Tissue-Thompson for taking these notes.

    HAPPY HOLIDAY’S EVERYONE


    Friday, October 10, 2008 ~ 11:00 to 2:00
    Hosted by: The PH program at Allegheny General Hospital
    PH Jeopardy ~ An Entertaining, Educational, and Fun Support Group Meeting
    Location: Magovern Conference Center ~ Allegheny General Hospital
    320 East North Ave., Pittsburgh, PA 15212
    • Valet Parking is available in the Sandusky Patient Entrance, or general parking is available in the James Street Garage.
    • Take the “B” Elevators to the 2nd floor of the Magovern Conference Center

    The OCTOBER 10, 2008 Pittsburgh PH Support Group meeting started with Merle reading the confidentiality statement, welcoming all, introducing herself as the Co-Leader of the group and mentioned that Sharren was having a treatment that day so was unable to attend. Sharren asked that Merle relay a warm welcome to all; and again to thank all for being here. Sharren and Merle want to welcome any new members to the Pulmonary Hypertension Association and look forward to more patients joining so together we can make a difference in our lives and for a cure. They also want to encourage those of who are not members to sign up and be recognized to strengthen our force for a cure. They realize that sometimes people come to these meetings and never sign up with PHA and don’t realize the benefits it has to offer. If you are not a member please be sure to take a lavender/purple brochure from the sign in table and mail it in. It is one of those priceless opportunities. How many of you are members?

    A moment was taken to remember those who have departed this life and are no longer suffering.

    A thank you was given to Actelion, Caremark and United Therapeutics for sponsoring the luncheon and also a thank you to Accredo for making copies of a cheat sheet to call our Senators, info on that to follow. Introduction of ALL pharmaceutical representatives and clinicians was made.

    Has everyone signed in? Name, phone, e-mail or address.

    The definition of victims and survivors was given as well as words of encouragement – the terrible crying towel was also held up. It’s a Pittsburgh day.

    Merle mentioned the Medicare Rights Center and how they host monthly free web seminars on important Medicare topics. The monthly seminars are held on the second Thursday of each month. The link is on the site or to register for these seminars, please visit MedicareRights
    If you have a Medicare prescription drug plan (Part D), but still cannot afford your medications, there are programs that can help. Depending on where you live, your earnings and your health needs, different assistance programs can help you pay your co-pays and premiums. These programs include State Pharmaceutical Assistance Programs, Medicaid, charities, and pharmaceutical-sponsored Patient Assistance Programs. Merle has toll free numbers if you need them or again, some are listed on the site.

    Merle noted that Dr. Benza’s presentation from the August meeting is now on the site along with other important information. Pictures were also added.

    Is there anyone here to report on the golf outing – Iris said they raised almost $10K.
    Betty Lait, Support Group Leader from the Mercer Area group, has raffle tickets for an afghan, their fund raiser.

    At our meeting in August Merle asked that you sign a letter to your Federal Representative, your Congressperson. You were given by zip code as to who that would be. Merle announced that because of all of you who wrote or called, along with the PH community, the bill was presented to Congress on September 25, 2008 and it PASSED. NOW we have to CALL our Senators – both of them – and ask that they co-sponsor this bill... These are the copies that were mentioned earlier, the phone number for the local or DC office is on there and what you need to talk to them about -- the cheat sheet. If you have any questions about it, please do not hesitate to contact Merle. If you are from out of state, please contact those Senators – the response would still be the same and their phone number should be in the blue pages of your phone book – they may be a different color but they are in there. Pass this information on to friends and relatives out of state.

    November is PHA awareness month and we will be sending information to the local media and we also want to hear from anyone who is promoting an awareness function or a fund raiser. Have you ever written a letter to the editor – this would be the perfect time to write one. We would also like to set up tables near the cafeteria of the two PH Centers and pass out information about PH. But this will take some help from some of you. It would be a one day event TBD and would be from 11 a.m. to maybe 2 p.m. Do we have any volunteers???

    Let’s stay a little while after the “game” and get to know one another…

    Our next meeting will be December 4, 2008, Over Coming the Winter Blues. The presentation will be by Susan Stollings, PhD at UPMC -- flyers are at the sign in table, please raise your hand if you didn’t get one. It will be held at UPMC.

    Dr. Srinivas Murali was introduced to the group and he welcomed all for attending, he also spoke on advocacy and how important it is to follow through. He thanked Merle for the web site and says he looks at it every Monday. Dr. Murali is the Professor of Medicine Drexel University College of Medicine; Director, Division of Cardiovascular Medicine; Medical Director, Gerald McGinnis Cardiovascular Institute ~ Allegheny General Hospital

    PH Jeopardy was then played; there were 6 contestants – 3 teams of two each -- and the categories included items such as: PH Treatments – Words that begin with the letter R – Pittsburgh and a few others. We had an “Alex Trebeck” – “Vanna” kept the score and we had a panel of two judges. The questions were entertaining and also a learning tool. On the whole, it was a lot of fun and enjoyed by all, even the audience was able to participate. Door prizes were given to the contestants and then a time for meet and greet – a time share.



    A HUGE SUCCESS
    SPECIAL EVENT: 1st Annual Golf Outing for the Pulmonary Hypertension Research Program to benefit the Gerald McGinnis Cardiovascular Institute
    Saturday: September 13th, 2008 @ 1:30PM ~ Birdsfoot Golf Club


    August 16, 2008 ~ Holiday Inn - Greentree, PA
    Greetings and welcome by Sharren Yamron, Pittsburgh PH Support Group Leader. A moment of silence was given for those who are no longer suffering.
    A thank you to all support people – clinicians – pharmaceutical representatives. Without them this disease would not be bearable – a round of applause.
    Introduction of Merle Reeseman as new co-leader of the Pittsburgh Support Group.

    Sharren mentioned our upcoming schedule, there will be a golf outing September 13, at Birdsfoot Golf Club and Iris Chizeck is the contact. Our next meeting will be Friday October 10 at AGH which will be a PH Jeopardy. November is awareness month, and we will be accepting volunteers. Additionally, we will be having a meeting December 4 at UPMC which will be about dealing with the winter months and winter blues. (See main page for more details)

    Here in Pittsburgh we have three rivers that come together at the point. Like how the rivers come together, we here at PHA strive to bring together patients, doctors, nurses, and families as a means to provide support, and hope.

    PH patients are fortunate to be in Pittsburgh with its wonderful medical facilities, the medical teams at AGH and UPMC, and the representatives of the drug manufactures. When we come together to share and learn from each other we provide support. How fortunate we are to have Dr Raymond Benza, who has been newly appointed to the Pittsburgh Area and WPAGH, to join us to share his knowledge and provide us with support and greater hope.
    Please give a warm welcome to Dr. Benza.

    Dr. Raymond L. Benza joined the West Penn Allegheny Health System in June of this year and is the Director - Section of Transplantation Heart Failure and Pulmonary Hypertension. Up until that time he was an Associate Professor of Medicine in the Division of Cardiovascular Diseases at the University of Alabama at Birmingham (UAB) School of Medicine. While at UAB he was involved with the inhaled treprostinil, oral treprostinil, tadalifil studies in pulmonary hypertension and also involved in the sickle cell anemia trials with bosentan.

    This past June Dr. Benza did a presentation during the Scientific Sessions at the PHA 8th International Conference held in Houston, TX
    He and his wife Edwina and their son Evan recently moved to the Pittsburgh area.

    Dr. Benza's presentation Climbing for a Cure. It’s not often a doctor feels the same pain his patients experience - especially on purpose. But Dr. Benza did just that when he climbed nearly 14,000 feet to cause a temporary form of pulmonary hypertension. He climbed to the windswept granite summit of the Grand Teton in Jackson Hole, WY, with five friends as part of a fund raiser for PHA.

    Dr. Benza climbed to the windswept granite summit of the Grand Teton in Jackson Hole, Wyo., with five friends (total of 5 physicians and 1 engineer) as part of a fund raiser for the Pulmonary Hypertension Association (PHA) and in memory of his friend and former patient Katherine Hanks, who succumbed to the disease.

    She was one of those people who knew she was dying, but at the same time never let on that she was succumbing to the disease. She was an inspiration and memories of Kathryn saying OMG Ray you can’t move mountains… She always made herself available to visit patients and talk to people about the disease and help with research.

    When something like this disease happens to such a wonderful person, something burns inside of you. It’s a feeling that it’s just not fair, and you’re driven to do more.

    He and the others thought this was a way they could try to give back more, by putting themselves in a position where we feel what our patients feel, but it turned out to be much more than that. It became a personal journey.

    They decided to climb the Grand Teton though none of them had ever climbed anything greater than a rock wall. Climbing a peak like the Teton was the perfect way to raise money and bring awareness to the disease especially since people exposed to high altitudes have a natural occurrence of similar symptoms of pulmonary hypertension.

    After 6 or 7 months of training at home, the team of friends trained three days for the climb after arriving in Jackson Hole. They realized quickly the danger in their mission was in, not only when asked to sign an “informed consent” (dangerous ~ hazardous ~ extreme risk / not quite the same as what he was used to as a doctor) but when he fell from the mountain on the training course of 400 feet.

    Trusting and Leap of Faith: when they were learning how to repel, he knew someone was holding him with the rope, he was told to jump but he fell and was dangling around 200 feet – he saw stars. In addition to the fear and the apprehension of falling, the thought of not seeing his wife and son again was paralyzing. He thought, this is not even the real mountain and I fell. What’s going to happen when attempting the 4,000 foot scale in two days? His friends call him: bulldozer Benza because he is always charging yet he had thoughts of what patients feel everyday – he shook it off then felt humbled and thought of how patients must feel as he also thought of his family.

    You truly can appreciate the fear that our patients go through not knowing if they’re going to make it to the top of their mountain. You understand they are wondering what’s going to happen to their family and their children when they’re gone. That hit really hard when he was dangling there on that rope, but it also gave a renewed sense of strength and determination to carry on and not give up.

    After he made the leap, the guide told him remember it’s one foot at a time – one foot in front of the other (as Kathryn always said) – don’t look too far ahead and don’t’ look too far behind and don’t look down – just ahead– you can and will achieve.

    This was a volcanic area before; the terrain is very harsh but lush and beautiful at the same time. Again, they noticed difficulty breathing from 6000 feet to 10000 feet. On their second day of the climb they got up at 3 a.m. with flashlights on their helmets they climbed again; the temperature was 20 degrees with snow covered peaks and when the sun came up it was extremely bright; the temperature changed to 60 degrees. They reached the summit of 15000 feet and his friends said we want to meet some of these patients of yours, and the memory of Kathryn Hank, RN was climbing with them the whole journey.

    It took two days to climb up the mountain and only one day down but the memories will last forever. His next trek will be Mount Kilimanjaro in Africa – next year.

    Tidbit – only the American Flag is allowed to be flown at the peak of any mountain in the US of A. Dr. Benza and his team got permission (almost an act of Congress) and the Governor of WY granted them permission to raise the PHA Flag.

    Merle thanked Dr. Benza for an inspirational presentation and added: The late comedian Jack Benny was once honored with a distinguished humanitarian award. “I don’t really deserve this award,” Benny said in his acceptance speech, “but then I have arthritis, and I don’t deserve that either. Thank you very much.”
    Lynn Redgrave speaking for Bristol-Myers-Squibb said: I want to die from eating too much chocolate or from exhaustion dancing the tango. I want to die of laughter on my 87th birthday. But I refuse; I refuse to die from breast cancer. I want to die from something else. And that’s exactly how I feel about PH.
    So it’s not a question of whether we really deserve the things we get, like PH among others. The important question is this: how well do we handle those things. If we have grace, we can endure, and enjoy the unexpected ups and downs of life. Do I grumble about my health or am I grateful that I am alive. Should I cry because roses have thorns or should I rejoice because thorns have roses?

    Attitude and a good sense of humor will get you a long way but sometimes you may need a terrible crying towel.

    Introduction of Betty Lait Support Group Leader for the Mercer Area PH.
    Merle asked all pharmaceutical reps and clinicians to introduce themselves. Merle also thanked Holly and Bryan Thompson for manning the sign in table.

    HR 6568 Tom Lantos Research and Education Act of 2008 – to replace HR 3368 ~ Merle has prewritten letters from PHA that can be mailed to your Congressperson with room on the back to write your story or comments about this dastardly disease. You can mail them yourself or she will mail them for you.
    Rep. Tom Lantos, a long-time PH champion passed away in February after a battle with cancer, he was well respected in Congress and consistently placed finding a cure for PH at the top of his legislative agenda. Co-sponsoring a bill is a perfect opportunity to honor his memory while also making a difference in the PH community. Co-sponsorship of H.R. 6568 brings us one step closer to a cure...
    *preparing more physicians for prompt and effective management of PH;
    *raising public awareness about PH symptoms;
    *improving Medicare and Medicaid converge of PH therapies and;
    *increasing the effectiveness of clinical researchers in the PH field

    Go to the Library of Congress to look up any bill. It will not only have the full bill available but also a summary of that bill. Links to the LOC our Federal Representatives, our Federal Senators and many other favorites are available on our site.

    All were asked to come and meet Dr. Benza and his family -- and we continued our meet and greet.


     
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