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This is a great tool that our group has decided to utilize for sharing information that has been given at our meetings. We only meet 6 times a year (roughly) and we get a lot accomplished during that time, so each meeting is very important in sharing information and education. However, there are many reasons why we can't make it, so this is the place to find out what's going on. Feel free to read, leave comments, or add to the BLOG SPOT...we'd love to hear from ya!

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Blogs for March's and May's 2012 Support group meetings
Thursday, June 21, 2012

JUNE 21, 2012

Hello Everyone,  It’s Patty and I’m finally updating the blog from our last two meetings.  

May 19th, 2012 – Subject Pulmonary Rehab & Occupational Therapy; Fact vx Fiction?, given by Dr. Nayak, Critical Care Medicine, St. Louis, University School of Medicine, and Dottie Biggers, Washington University School of Medicine, sponsored by Kyle Chasteen, Lung Rx, LLC

Dr. Nayak provided us with some overviews of Pulmonary Rehab (PR) and the dynamics of exercising and the precautions needed.   Most insurance companies will not pay for pulmonary rehab for patients with PH, because there haven’t been enough good US studies done to prove that pulmonary rehab can benefit the patient;  However, there have been studies done in other countries, (Germany and Australia) which indicate that rehab is beneficial, and 60% of Australian doctors recommend it for patients with PH.   In some cases PR may be obtainable and covered by insurance if an underlying diagnosis (code) is used.   Pulmonary rehab qualifiers are usually determined by diagnosis code, and many of the underlying disease of PH qualify. There is some reluctance in the medical community to recommend PR  as the lungs received 100% of the blood pumped from the body through the heart to the lungs which can equal 5 liters, and up to 3 to 5 gallons during exercise, because the pulmonary vascular constriction there is risk of sudden cardiac arrest, or syncope (fainting).

One of the main tests in determining the health and severity of PH is the 6 minute walk test.  Most of the drugs studied increased a patient’s distance by 30-200 meters.   In the German study patients who received pulmonary rehab increased their distance between 90-200 meters showing that PR is as effective in improving a patient’s mobility as many of the drugs. (Patient’s in the German study were class III)

Caution always needs to be taken when PH patient’s enter an exercise program, or enter pulmonary rehab, and if you are considering PR, go to a formal pulmonary rehab center where you will be seen 2 to 3 times per week, and closely monitored.  Doctors are still learning about exercise with PH patients.   Pulmonary rehab  does not make your lungs stronger, but it makes your muscles stronger which increases your ADL’s (activities of daily living).

Dottie Biggers, told us that Barnes Jewish Hospital has recently begun a pulmonary rehab program for patients with PH (PAH).  As they recently began the program they conducted and event to ensure that they could exercise PAH patient’s safely. 

Some of the reasons to consider Pulmonary Rehab is because it reduces shortness of breath during the performance of routine daily activities, improves exercise capacity through reconditioning, improves overall functional status, and gives education to allow optimal understanding and compliance with supplemental oxygen use.

Medicare will allow 36 lifetime visits, and if the patient demonstrates they may be extended up to 72 total life time visits.   Their program is set up for 20 visits. 

PAH patient are the MOST SENSITIVE to exercise as they have a higher mortality risk if not exercised properly, patients must be  100% ready for first visit, have clear exercise criteria, and all patients can easily identified.

There will be more posted regarding Pulmonary Rehap  program, and the information she provided soon. 

That’s all for now,  everyone be safe, kudo to all those who are attending the 10th annual conference, and enjoy the summer!

.

MARCH 24, 2012

Our first support group meeting of 2012 was held on Saturday, March 24, 2012.  Just as a reminder, please know that all PH patients, family, friends, and support persons are welcome and encouraged to attend our meetings.

Our topic for that meeting was “Stress Management” with emphasis of living with a chronic condition which was presented beautifully by Pat Turnbough, of Actelion Pharmaceuticals.    Everyone single person deals with stress in their lives, and patients with chronic illnesses have a tendency to have to deal with even more than the average person.   Pat first explained that there are good stresses, and bad stresses, and how our attitudes towards them, helps make coping with them easier.   Listed below are a number of ideas and suggestion to help reduces stress in our lives.

Take good care of yourself -

-          Eat well

-          Take medications as prescribed by your physician

-          Exercise as recommended by your doctor,

-          Learn to balance your stress

-          Learn to ask for help.

Develop hobbies, such as reading, gardening, puzzles, computer games, blogging, crafts, etc.

Get involved in social activities

Attend to your spiritual side.

Positive thinking is a key to positive outcome!

Keep a calendar to help you stay organized, and let you know when you’re overloaded.

Make lists to help keep you organized, but don’t expect to do everything at once.

Journaling is a great way to release stress.  Sometimes just putting ink to paper, or fingers to a keyboard and writing about what’s bothering you, or what’s going on by journaling can relieve stress, and be very cathartic.  

Make a flexible plan and use it as a guide, not as a “must” do.

Learn to say “NO”, by saying “Yes” to something else.  (I can’t do that today, b ut I’d love to help another day”)

Educate yourself with as knowledge reduces the fear of the unknown.

Use your support network(s) by attending a support group, asking family, and friends for help, and staying connected by talking honestly and openly.

And lastly SMILE!!!  It not only has a positive effect on you, but it’s contagious.

A few additional personal tips that have helped me are breathing exercises.  When we get stressed, we have a tendency to “shallow” breath, and just taking a minute or two, and taking some deep breaths, and trying to relax tense muscles helps.   Meditation also helps, and there are many, many forms of meditation so you should be able to find one that can work for you.  Also, being proactive in your life can help reduce stress by knowing what’s coming up, and planning ahead.   And most of all be patient with yourself, and those around you.   Having a disease like PH is extremely frustrating, but our attitudes can greatly determine how much we enjoy the quality of life more then we can imagine.  

Dining out for Donations at Metro St. Louis area Chili's and Sunset Hills Five Guys Burger and Fries
Wednesday, November 16, 2011

We have two special Dining Out For PHA Donation Events that we would like to promote, and invite as many people as possible to attend.    

Chili's will donate 10% of the sales (excluding tax) to anyone who comes into one of the many St. Louis Metro Area (IL & MO)  Chili's resturants with one of the Special Dining for PHA Vouchers.  Five Guys Burger and Fries will donate 15% of sales (excluding tax) to PHA with one of their Special Dining for PHA Flyers.   To obtain vouchers for either of these events, please e-mail me at PattyPHope@aol.com or Amanda McKee at mharv78@hotmail.com

The first event will be held at all St. Louis Metro (IL & MO) area Chili's resturants -

Chili's Grill & Bar Restaurants                                                                                                                             Wednesday, Nov. 16th&   Thursday, Nov.  17th   

The second dining out event will be held at:

Five Guys Burgers & Fries (Sunset Hills location only)                                                                          Monday, Nov. 21st,   &  Tuesday, Nov. 22nd, from 4-8 PM only

Please remember that YOU MUST HAVE A SPECIAL PHA VOUCHER/FLYER at both restaurants in order for the funds to be donated to PHA.     Again, to obtain a voucher/flyer, please e-mail me at PattyPHope@aol.com, or Amanda McKee at mharv78@hotmail.com

Also, you may want to consider getting some of your Holiday shopping done early by purchasing gift cards as stocking stuffers, or gifts for PHamily, Phriends, neighbors, etc.  The 10% and 15% donations to PHA should also apply to any gift cards purchases as long as they are accompanied by a voucher.  

Our thanks to Karen Crow for obtaining Chili's dining out opportunities to raise funds for PHA.

Happy Dining Everyone!!! 

St. Louis Area Support Group Dinner & Wine Tasting Fundraiser was a huge success!!!
Wednesday, November 16, 2011

On Saturday, November 12th, the StL Support Group held our long anticipated Dinner & Wine Tasting Fundraising Event which was incredibly successful on many levels. 

There is so much to post about this event, with so many comments, and so many people to thank that right now I don't have all of the details to be able to post everything correctly.  So please check back in a couple of days and a posting about the wonderful  event should be complete.  Thanks!!! Patty. 

November 1st, 2011 - blog update - Show Me St. Louis Program promotes PH awareness & up coming St. Louis Area PHA Support Group Dinner & Wine Tasting Fundraiser
Tuesday, November 01, 2011

For a number of weeks sereral of us, Chris Fini, St. Louis Asst. Support Group Leader),  Edna Hoefer (a member of our St. Louis Area Support Group), Verdi McCann (a dear PHriend) have been doing "Window" spots (45 second airings) on the KSDK Show Me St. Louis Program to raise PH awareness, and to promote our STL Support Group PHA Dinner and Wine Tasting Fundraiser which will be held on November 12th, 2011.    During one of our Window appearance, Julie Tristan, a featured reporter for the program, offered to do a segment to promote PH awareness and our fundraiser.  Wooo Hooo!!!   Thank you sooo much Julie!!!!    

The taping was done at Chris Fini's sister's home, on Monday, October 31st, and aired on Tuesday, Nov. 1st, just in time for November's kick off of pulmonary hypertension awareness month.    The segment included Chris Fini, Edna, and myself.   The segment had a brief interview with me explaining a little about PH, talking about our fundraiser, showcasing some of the baskets, and gift cards for the silent auction, and then showing all of us working on additional items for the silent auction for our fundraiser, i.e.  an Italian Dinner Basket, and "Nuts about Cardinals" Holiday wreath.  For those of you who may not know the St. Louis Cardinal Baseball team won the World Series, so all of St. Louis is still going "nuts" and celebrating the win.   We had soo much fun taping the segment even though we all were a little nervous, (especially me), with Julie Tristan doing an amazing job of editing my nervous ramblings.  She is truly gifted, amazing, and we can't thank her enough for all of her assistance.   =)   

My deep  thanks to Verdie McCann, for driving me, loading and unloading the multiple baskets, carrying our huge poster, and for driving all of us Downtown for the window spots, especially when there wasn't any close parking!  A shout out of thanks also goes to Amanda McKee and Chris Fini for meeting to gather the baskets and donation items for the Show Me St. Louis PHA segment taping, and to Edna Hoefer for being such a trooper, and braving the windy and chilly weather on the plaza with Chris, Verdi and myself.  Lastly thanks to Chris Fini's ' sister and brother-in-law for their hospitality by allowing us the use of their beautiful home in Oakville, MO for the taping the Show Me St. Louis Program segment.   It really does take a team!!!  

Below is the link to the segment:

http://www.ksdk.com/news/article/283860/78/Blue-Lip-Ladies

I think Chris and I will now and  forever be known at the Blue Lip Ladies.. lol, and that's just fine with me if it helps promote PH awareness.   At the time of my diagnosis I actually did have blue lips so the title fits!!!

Thought for the Day:  You are more powerful then you realize - dare to dream big!

Greater St. Louis Support Group Dinner & Wine Tasting Event
Wednesday, October 12, 2011

 

Coming soon - Greater St. Louis Support Group Dinner & Wine Tasting Fundraising Event

October 12th , 2011 – 30 DAYS AND COUNTING UNTIL OUR PHA LOCAL SUPPORT GROUP FUNDRAISER!!!!

Help make our Fundraising Event a PHenomenal  Event by telling your family,  friends, co-workers, neighbors, church or social community groups, and everyone you know.    Please help spread the word!!! 

We are soooo excited that our Support Group Dinner and Wine Tasting is nearly here!!!   Please help spread the word as we still have quite a few number of tickets available.  November is pulmonary hypertension awareness month, and our Greater St. Louis Area Support Group are doing all we can to raise awareness, and funds for research, and patient services with a fun filled night of both entertainment, and education.  The fundraiser will be held at the Sunset Lakes Golf Club, and there is handicapped available parking in the rear of the building. 

There will be a delicious buffet dinner, wine tasting by the Bardenheier’s Wine Cellar (cash bar) , live music by Scott Kay & the Continentals, dancing, and a silent auction. We have secured numerous unique and fun gift baskets, gift certificates, and specialty items for our silent auction.  We are proud and honored to have Dr. Murali Chakinala, Assistant Professor at Washington University in St. Louis, and Dr. Laura D’Anna, PHA’s Chair of the Board from Silver Springs, MD as our featured guest  speakers.

Tickets for our event are a bargain at only $30 for PH patients, caregivers, friends, family members & general public; $10 for children (13 and under); and $45 for medical professionals and vendors.    I spoke with a number of people who attend fundraisers and every one of them said that our fundraising event is one of the most reasonably priced.  All ticket purchases are tax deductible as charitable contributions.  Please note that we are trying to close ticket sales on October 31st,  2011, so that we can give a final count to our caterer, and event planner for set up.

If you  have any media contacts in your area, please let me know so I can contact them directly with our fundraising event information.

Where:     Sunset Lakes Golf Club, 13366 W. Watson Rd., Sunset Hills, MO 63127

When:       Saturday, November 12th, 2011,   From  5:00 PM to 9:00 PM

Cost:         $30 for PH patients, & general public; $10 for children (13 and under); and $45 for medical professionals and vendors 

 Host:        Greater St. Louis Area Support Group

To Benefit:  The Pulmonary Hypertension Association with 50% of the funds raised going towards research, and 50% towards patient services

For more information, or questions regarding the fund raiser, please contact me by e-mail at PattyPHope@aol.com

Hope to see you there!!!!!

 

September - blog update - September's St. Louis Support Group meeting

Our next support group meeting was on  Saturday September 17,.  Amanda our support group leader began the meeting by going over some of successes…. We celebrated Guinn’s 10th PH anniversary giving hope to many of us with this disease.   Yay  Guinn!!!!  Our next success was that Gage’s PH pressures dropped by the use of medication.    ^5!!!   Way to go Gage!!!  We’re all soo happy for your improvement!!!  And  we concluded our “successes” by continuing  to celebrate Jim Baker’s double lung transplant recovery  with Jim announcing that  he no longer has PH, nor does he have any of the symptoms and he now feels well enough to return to work on Monday!!!   I love hearing about our “success” stories, and it brings so much hope and positivity to our meetings. (Thank you for thinking of this Amanda) 

Our topic was regarding clinical research studies.  Our featured speakers were Ellen  Lovato, Clinical Research Nurse Coordinator & Sharon Heuerman, Clinical Nurse Specialist, at Washington University School of  Medicine in St. Louis.  They gave us the “inside scoop” on what it’s like to be in a clinical trial, and they told us of some very positive benefits of being in a study.  They told us that many time patients are monitored more closely (and even receive better medical care) than a regular patient simply because they have to follow up with a clinical study volunteer, and/or physician more often.  

Sometimes it’s difficult to qualify for a study because each study has a strict set of guidelines and parameters that must be met.  These guidelines are different for each study.   Being in a clinical study is also a wonderful option for someone who either doesn’t have health insurance or is underinsured because usually much of the  medical care and testing is included in the with the study.   Being in a study is also a great option where other treatments aren’t working.  

 Do you have the fear of not knowing what you’re are getting into, or have the fear signing up for a three year study and being “stuck” in it for the three years?  Don’t fear,  before participating in any clinical study informed consent listing all of the potential risks must be reviewed and signed, and if during the study there are additional side effects,  the patient must be informed and a new informed consent listing these side affect must be included, reviewed with the patient, and signed.   As far as being “stuck” in a study, that is not true.  Of course for the most accurate results it’s best for the study if the participants  stay for the length of the study ; however participants may drop out at any time for a variety of  reasons that may be as simple as not being able to make all of the necessary appointments;  not feeling better, or even for personal reasons.                         

Do you think that you’ll be “stuck” in a study and not respond to the drug, thinking that you are locked in and going to get worse without being able to leave?  That is completely incorrect.  Your doctor has a moral obligation to keep you healthy, so if your doctor thinks you getting worse most likely you’ll be pulled from the study.  There are a lot of pros and cons in participating in a study, but I think the benefits greatly out weight any negatives. Please keep in mind that all of the new drugs, and treatments that are helping us are only here because someone was willing to be in a clinical trial to test them.  So I’m sending a huge thank you to all of you who have participated in clinical studies, and trials.    It’s difficult to go into all of the details about clinical trials here simply because there are many types of clinical trial with different phases.  For more information regarding clinical studies or to see if being a participant may be right for you, talk to t your doctor, or  Ellen  Lovato, Clinical Research Nurse Coordinator , or go to  http://www.clinicaltrials.com/   or http://www.cc.nih.gov/participate.shtml
 
August 2011 - blog update - Jim Baker  
 
Jim has had an extremely successful and rapid recovery from the double lung transplant, and we wish him the best as he continues on the road to making a full and complete recovery.     I spoke with Marie today and she said that Jim  is progressing well in pulmonary rehab.   He should be driving in about a week, and possibly going back to work in 6-8 weeks!!   Wooo Hooo!!!!
 
July  2011  -  blog update - July's St. Louis Support Group Meeting 

Hello to everyone!!   First I must apologize for not posting more frequently.  I think the heat of the summer took most of my energy.  We have several meetings with updates and wonderful successes to tell you about.    We had a support group meeting on July 23, 2011,  and began our support group meeting with two successes – First we celebrated  Bob Slead who went from a IV heart class level  to a III class level, and celebrated with a round of applause, smiles, and congratulations… woo hoo!!  Way to go Bob!!!  We also celebrated Jim Baker’s successful lung transplant with a beautiful cake, smiles, and huge round of applause.  It was sooo good to see Jim healthy and breathing easily without oxygen.  All of us at the  St. Louis Area Support Group are so happy for him, his wife, and two sons.

Our topic was medical billing issues.  Our presenter for our July meeting was Shelly Tash of Billright, Inc.   . Bill Right, LLC  was established in October 2009 by its founder, Shelly Tash.  The office is located in Cuba, Missouri and offers provider billing services and medical billing advocacy to patients nationwide.  They offer billing advice and expertise to individuals struggling to make sense of their medical bills.  Their services will determine the amount you really owe by summarizing your coinsurance and co-pay obligations and examining all Medicare and health insurance claims, benefits and eligibility requirements, provider bill, and statements.  The Patient Services Division offers medical billing advice and expertise to patients and their families who have questions or concerns about their medical bills. The company makes sure insurance plans pay the full covered amount of the bill. Medical billing, and insurance reimbursement is a complicated, confusing process full of jargon, and codes that most patient’s don’t understand making it difficult for patients alone to accurately review their medical bills and insurance explanation of benefits (EOBs).   During her presentation she discussed many common billing problems, overcharges and some common medical billing errors, i.e. double billing, (being billed for the same services twice, and the way that is done so it’s difficult to detect), bundling overcharges, (these are charges that are itemized and/or double billed, when they  should be part of a single service charge) and denials done in error (grrrrr). Don’t we all hate those?  She informed us that over us that over 80% of medical billings have some type of errors!!! (and guess whose favor those billing errors usually side with).  She gave us a couple of great pieces of advice.  First check all of your itemized medical bills, and explanations of benefits from your  insurance company, and  if you  have any questions to call your  insurance companies and ask questions.   Also don’t just pay the amount due  before reviewing all of the bills and reasons why that is the amount that you owe.  Unfortunately many billing difficulties lie not only with the medical billing, but also with the insurance reimbursement, so if have any questions about your bills, or if you’re unable to make a resolution to your billing problem contact Bill Right for assistance.  

Bill Right provides medical billing advice and expertise sometimes a no cost, or minimal cost. If the billing resolution takes longer than 6 months an additional fee may be charged; however, considering the amount you will save from being over charged,  incorrectly charged, or denied in error it’s well worth the price. There are several steps to their billing services and here is a very brief synopsis, initial consultation, plan of action, and case resolution.   This was a very helpful topic, and one that I think many of us deal with on a regular basis.  For more information about Bill Right call 573-205-5803, or go to:    http://www.mybillright.com 

Thought for the day:  Success is getting up just one more time then you get knocked down

  
 June 11th, 2011,  - blog update - PHA on the Road
 
Hello again!!!   It's Patty with just a couple of updates to the blog -

First of all on June 11, 2011 St. Louis hosted PHA on the Road.  It was a wonderful and hugely successful event.    It was so nice to so see so many friends, and to meet so many new PH'ers, and their families and caregivers.    The PHA on the Road was a day long seminar with breakdown sessions including medical professionals, patients, and caregivers sitting on each session panel to give an encompassing view from each perspective.  

Special thanks to the PHA and especially to Dr. Paul Fairman for choosing St. Louis to host PHA on the Road.  We appreciated the opportunity more than we can express.   There was such a huge team behind making this such a successful event, and there are so many people to thank, Amanda McKee for helping to bring PHA on the Road to St. Louis,   Dr. Murali Chakinala of Washington University for hosting PHA on the Road,   Dr. Sif Hansdottir,  Dr. Leslie Spikes, Dr. R. Mark Grady, Dr. M. Azam Hadi, Dr. Anna Hemmes, Dr. Ravi Nayak, and members of their medical staff  including Maribeth Duncan, MSN, AN-BC, and Kathy Baker, RN,BSN for giving of their time and sharing their knowledge of this disease , the  Crown Plaza Hotel for the beautiful conference rooms,  food (the buffet breakfast was incredible), and friendly helpful staff,  the PHA staff  who was also friendly, helpful, and organized,  all of the vendors, and representatives who gave out great information and gifts.    If i missed anyone, please forgive me.

 The day long conference was well organized, informative, and gave attendees plenty of options to choose the topics/sessions that they were most interested in attending.   The conference covered a vast number of topics, such as Sharing Your Story, Sharing Your Tips for Coping, Loving Someone with PH, Caring for a Child with PH, How is PAH Diagnosed, Initial PAH Treatment, Long-term PAH Management, Emergency Situations, Pediatric PH, Understanding Transplant Options, Exercise and Yoga, PH and Connective Tissue Disease, Traveling with PH, Women's Issues, Nuts and Bolts of Being a Research Subject, Insurance Issues and Alternative Means for Getting Treatment Covered, Eating Better, What is on the Horizon of PAH.  There was an incredible amount of information available.   One again I wish to thank all of the presenters for sharing their time, knowledge, and experience.   I had a wonderful time, and I think that everyone who attended gained  valuable information from the conference.   

June 18th, 2011 - Blog update - Jim Baker's Fundraiser

 The next exciting news is that Jimmy Baker had a hugely successful fundraiser, and if that wasn't wonderful enough, what made the event even more spectacular was the fact that Jim received a phone call just after midnight to let him know that there was a lung donor match, and he successfully underwent double lung transplant the morning of the day of his benefit.   God couldn't have planned it any better.  Congratulations to Jimmy, Marie and their son.  We couldn't be happier for Jim and his family!!!!   The fund raiser was a fun event, and very well done, with many incredible gift baskets, silent auction items, fantastic food, a great band.  It was very uplifting to see  so many people rally to help someone they obviously cared so much about. 

July 2011 - blog update - upcoming meetings

 The next Greater St. Louis PH Support group meeting is on July 23, and the topic of this meeting will be Billing Issues.  Haven't we all had to deal with those?   I'm sure this meeting with help explain and provide assistance with this complex sometimes frustrating task.   The meeting will be held at the Centers of Advanced Medicine (CAM) Building of the Barnes Hospital Complex in St. Louis, MO.   Please try to attend if at all possible!!!

 That's all for now, everyone please try to stay cool, and safe during the scorching summer. 

 Thought for the Day:   Courage isn't always a lions roar,  it is sometimes the heart saying, "I will try again tomorrow".

 

July's Greater St. Louis Support Goup Meeting blog:
Jim Baker Benefit
Wednesday, June 08, 2011

JIMMY BAKER IS GETTING A NEW SET OF LUNGS!!!!!

Please join us for a benefit/fundraiser for Jim Baker & Family as he sets out on his journey to get a new set of lungs.  Unfortunately, pulmonary hypertension has taken ahold of his lungs and it's time for a new set, thereby a CURE for him!  Come and join the Baker's for a night of fun & festivities.

Time: Saturday June 18, 2011

Location: Fireman's Hall-9510 Collinsville Rd, Collinsville, IL

Info:

To help benefit Jimmy Baker who suffers from Pulmonary Hypertension
a rare lung disease and is in need of a double lung transplant.

Pasta Dinner & Beer 7-10pm
Live Music: Hobo Jungle
(60’s- Today)

Silent Auction, 50/50 and Raffle !

Ticket: $25 Per Person or $40 Per Couple
Contact: Maria Baker (618)977-1734 Genni K (618)540-1273
Support Group Meeting May 21, 2011-Breaking Down the Numbers
Wednesday, June 08, 2011

Hello again everyone!  Well, we had another support group meeting on Saturday May 21, 2011 with Dr. Ashutosh Sachdeva from St. Louis University Hospital PH Clinic.  We gave him the very challenging task of "Breaking Down the Numbers"- what do all these tests mean?!  He did a marvelous job, connecting with more experienced patients, as well as those newly diagnosed.  Everyone learned something new, or simply got a 'refresher' in what it all means.  I think it was nice for the experienced patients to keep everything in perspective and also to remind us that things are changing with technology and research.  Now, more than ever, physician's can really asses what these numbers are attributed to, and how it might affect that particular individual.

For those who are newly diagnosed, it was a great introduction to the physiology behind pulmonary hypertension (and help explain some of the nasty symptoms), and why it can be a tricky disease to diagnose.  It also provided a look into what to expect from 'routine testing' and what that might indicate for them.  Most importantly, I think it provided a little perspective into this challenging disease.  So often I'm asked from newly diagnosed patients, "how long do I have to live", or "will I get any better"?  The reality is that it's different for everyone, taking into account the other health-related issues they might be facing, in conjunction with PH.  I don't have a crystal ball, but I can tell you, NOW is the best time to have this disease.  Scientists & physicians have come a long way in medicine advancement and can provide more meaning to the data, thereby utilizing a wider-variety of medication than before, to their fullest extent.  The test can be invasive and daunting, but they are important.  This session hit the nail on the head (and backed up what I've been saying for years)-you have to take EVERYTHING into account when looking at what PH means for you and where you stand.  It's not a simple black/white issue.  All too often, patients focus on "what are my numbers"? (meaning, how bad is my mean pulmonary pressures)  But, I've seen people who have had "high" numbers and live a very full life.  On the flip side, I've seen others with relatively "low" pressures struggle with day to day tasks.  So it's different for everyone and the numbers shouldn't be telling you how you should feel, rather, YOU should determine how you feel!

I have a few leftover copies of the slideshow, if you're interested in learning more, please feel free to contact me.  To learn more about Dr. Sachdeva and the St. Louis University PH Clinic, click here: http://internalmed.slu.edu/pulmcc/index.php?page=faculty

Saturday April 30, 2011-Grape Escape Benefit & Dance!
Monday, April 25, 2011

BENEFIT AND DANCE

 Bardenheier Wine Cellars Annual Spring Fund Raiser Benefiting:

 The St. Vincent DePaul Society & The Pulmonary Hypertension Association

 Date: April 30th Time: 3:00 PM – 10:00 PM

Place:  St. Stephen’s Hall & Picnic Grounds, Richwoods, MO : Home Grown Classics (Playing 5:00 - 9:00) Bakeoff Raffles 50/50 Horseshoe Tournament

  • Peaceful Bend Winery
  • Bardenheier Wine Cellars
  • St James Winery
  • Artesian Springs Winery
  • Antares Wine Co.
  • Buck Mountain Winery
  • Booths

     

    Chris McCoy Stone Bluff Pottery

    A Couple O’ Jerks

    Karen’s Caprine Farm Fashion

    Phippsy Designs

    Sally’s Custom Quilts

    Aunt Pammy’s Corner

    Dap’s General Goods

    Donations: Payable to: The Grape Escape

    c/o Bardenheier Wines , 11386 State Hwy. A, Richwoods, MO 63071

    For More information call 573-678-2442 or go to www.Bardenheierwines.com 

    (Map & Directions on website)

    • BBQ
    • O’Fallon Brewery
    • Schlafly Beer
    • H.W. Herrel Dist.
    • Buffalo Brewing
    March 2011 Meeting
    Saturday, March 19, 2011

    Well, it's Amanda again. I'm here to update our March meeting. It's been a long, cold winter and now that spring is here, we come back together again to celebrate our PHriendships and grow our knowledge on Pulmonary Hypertension. It was great to see everyone emerging from their winter cocoons to come together for socialization and education, so "Welcome Back"!

    Let me first begin by saying, this is going to a very busy year. Please take a moment to look at our schedule of events and make special note of the things that really interest you. It's important to register as early as you can, for some events are limited. Busy = Exciting!! There are lots of exciting things going on with our group this year so buckle up and enjoy the ride.

    We kicked off the 2011 year by inviting Caring Voice Coalition (CVC) Founder & Vice President, Pam & Samantha Harris to share their story of how they started this wonderful company. For those of you who aren't sure what CVC is, let me give you their website (http://www.caringvoice.org) and a brief summary. CVC is a non-profit organization that specializes in providing financial assistance, insurance education, and patient support programs to individuals with chronic illnesses, like pulmonary hypertension. They have a wide and vast knowledge base to help out all our patients in a variety of ways. If you are in need of their assistance, please feel free to contact me and I can help put you in touch with their representatives. It was a touching story and everyone has had such positive experiences with this company. CVC has been the beacon of light for many of us during our dark times with this disease. They are always up to date on changes through government programs and insurance changes, so you can rest assure you're getting the most accurate information. If you haven't contacted CVC, you might want to consider it-you are NOT alone!
    What's Coming Up!
    Wednesday, February 23, 2011

    Let me start out by introducing myself….

    Hello!!! My name is Patty Kaiser, and I'm a 40 something year old woman battling Pulmonary Hypertension, a rare lung disease, which was finally diagnosed on January 12, 2007. During the past four years, I have pretty much been one of the “silent” PH’ers, not usually attending support group meetings, didn't sign up for the message boards, but I did on occasion read them, and found them to be a great source of help, information, as well as keeping the many PH’ers, family and friends there in my thoughts and prayers.

    I've never attempted to write publicly, nor have I ever blogged before (I know, I know, I must live under a rock or something) so just please bare with me during my blogging “learning curve”. Once I have my e-mail and (PH user and blogger name set up I'll welcome any advice and suggestions. =)

    Last year I finally began attending our local PHA Support Group meetings, and enjoyed them so much I asked if there was anything I could to become involved, and to help out. This past October (Oct 2010) Amanda our Super Support Group Leader asked me if I would help out with the “media” to try and get the word out about this rare lung illness since November was PH Awareness month. I told her that I would try to see if I could get anyone’s attention by contacting local TV, radio, and newspapers. She told me about the “Pucker up for PH – Lend Us Your Lips” blue lip campaign, and I thought this is something that we could use to help promote PH awareness, and have a ton of fun with, and we did!!! At first I was a little daunted, and overwhelmed, but by pulling a “media contact” letter off of the Pucker Up 4 PH web-site I had a great foundation to start. (Thank you to whoever posted those letters there!!) I set about personalizing the letter, and adding some details about myself, my journey, and a little humor, sending the letters to three TV personalities/shows on three different stations. Within 24 hours two of them responded positively, and wanted to have the “Pucker Up with PH, Lend Us Your Lips” featured as a segment. I was shocked!!!! In total we ended up doing 1-three minute spot, 1-two minute spot, and 2 additional 30 second spots.

    Below are the links for our two featured two, and three minute spots:

    http://www.ksdk.com/life/programming/local/showme/story.aspx?storyid=227640&catid=78

    http://www.fox2now.com/ktvi-puker-up-for-ph-112410,0,308961.story

    After the success of our media campaign, Amanda asked if I would set up and begin blogging about our experience with the Pucker Up 4 PH campaign, and about our St. Louis Area Support Group. I accepted the job even though I was (and still am) nervous about this exciting opportunity/challenge.

    This upcoming year is going to be exciting!!!! Our first meeting is less than a month away. We have an incredible Support Group leader, Amanda McKee, a wonderful Asst. Support Group Leader, Chris Fini, and our Support Group meetings are always fantastic, fun, and informative. Amanda and Chris both take the extra time, and dedication to ensure that each meeting runs smoothly, has a specific subject theme, and usually there is a special guest speaker, or two relating to our PH challenges providing us with a wealth of valuable information.

    All St. Louis Area Support Group Meetings are held from Noon until 2:00pm in Conference Room 1 on the Third floor of the CAM (Center for Advanced Medicine) building, located on the NW corner of the Barnes Hospital Complex in St Louis MO.

    Listed below is the schedule for the St. Louis Support Group meetings, subjects, and speakers:

    Saturday March 12, 2011 Subject/theme: Caring Voice Coalition-Providing information on assistance with drug costs Guest Speaker(s): Pam & Samantha Harris Sponsored by: Accredo

    Saturday May 21, 2011 Subject/theme: What do all those heart catherization, and other numbers really mean? Guest Speaker: Dr. Ashutosh Sachdeva of St. Louis University PH Clinic Sponsored by : United Therapeutics – Derk Holder &/or Stephanie Dolce

    Saturday July 23, 2011 Subject/theme: Medical Billing Issues Guest Speaker: Shelly Tash of Bill Right, Inc. Sponsored by: Gilead

    Saturday September 17, 2011 Subject/theme: Research Studies Guest Speakers: Ellen Lovato & Sharon Heuerman of Washington University School of Medicine. (A physician speaker may also be in attendance provide additional information – more details to follow as it gets closer) Sponsored by: Actelion

    Just as a side note, there have been meetings I’ve attended, not expecting that the theme would be of interest to me, but I found that every single meeting provided valuable information and resources that I would have otherwise missed, plus the care and support of our group. So please consider attending every meeting, even if it doesn’t appear that the subject/theme is something that you would be interested in. Plus the meetings are a great way to share, give and receive support, laugh and enjoy time with PHriends, all of which we could use more of. You’re smile is needed!!!

    And………

    We have a very special PHA Fundraiser coming up on:

    Saturday November 12, 2011 – St. Louis Dinner & Wine Tasting Fundraiser, with several very special guest speakers, live music, dinner, silent auction, wine tasting. Please consider joining us for a fun (PHun) filled night!!!

    I will begin contacting the media in June and July, and follow up with them in October regarding the Fund Raiser, so that we can try to obtain some media attention for this wonderful event.

    Well, that’s all I have for now. I hope that this information helps many of you, and I will drop by every couple of weeks to add updates, especially before and after each of the meetings. Please check back periodically as we also have some very exciting things in the works that are just too early to talk about.

    My thought for today: Be the miracle you want to see

    Thanks for reading!!!!

    Patty (LearningPHatience)

     

    Worldwide Awareness PH Blogging Day
    Monday, November 15, 2010

    This is the day to blog about Pulmonary Hypertension.  There are many ways to participate, so please join us in spreading awareness about PH!

    Five Ways to Participate in PH Blogging Day

    • Mention PH in your Facebook status
    • Tweet about PH
    • Email your friends and family with information about PH and the link to the Awareness Month web page
    • Submit your story to PHA through the Our Journeys program
    • Share your PH journey on your blog
    Show Me Your Lips-Pucker Up for PH Campaign Continues in "Show Me" State
    Monday, November 15, 2010
    PHA Awareness Month
    Saturday, November 06, 2010

     

    Our last support group meeting of the year focuses on PHA Awareness Month and year-end wrap up.  2010 was a great year for meetings that included: Alternative Therapies, Overview of PH Medications, Scleroderma Foundation Outreach, PHA International Conference, and Caregiver Celebration.  Our group grew by several individuals, so we maintain a strong presence here in St. Louis.  We ended it all with our own "Pucker Up for PH" campaign contribution.  Check out the pictures for more phun!  However great 2010 was, 2011 is set to be even better!  We have not one, but TWO fundraisers planned, as well as a great line up of speakers and events.  Check out the schedule/calendar so you can mark yours!  Thanks to everyone for a great year and I can't wait to see you all in 2011.  Have a great holiday season and stay well. 

    Thanks again for everyone's participation!

    Amanda McKee

     

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