Living Well with a Bad Diagnosis - Lung Disease

Tuesday, September 30, 2014

PF Patients Tell FDA

Work told Michael to stay home today. He has a nasty cold and thinks he broke a fever during the night. We both were in bed early last night, in different rooms, and slept. I was only awake for short periods of time and really enjoyed some solid sleep for the first night since Friday.

The calm before the storm. Tomorrow, I have a meeting with the nutritionist in the city then the dentist in town then orchestra rehearsal in the evening. It is going to be a stressful and tiring day. So today, I am going to take it easy.

Did I mention that I want to take a few more branches off the Burmese Trumpet Vine? It is foggy wet this morning but if it clears around noon, I am going to begin the ongoing removal of this vine.

I received this email from the Coalition for Pulmonary Fibrosis regarding patients with PF meeting with members of the FDA to share their experiences with the disease.       

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PF Month 2014
The CPF is pleased to share with you news from Washington last week.  PF advocates combed Capitol Hill on Thursday, meeting with 38 Congressional offices.  On Friday, patients and family members took advantage of the opportunity to address key FDA staffers about their experiences with Pulmonary Fibrosis and their suggestions for improved options for patients.
Please see the press release below regarding the FDA IPF Workshop on Friday.
Sincerely, 
Mishka Michon, CEO, Coalition for Pulmonary Fibrosis

Pulmonary Fibrosis Patients, Families Take Center Stage at FDA
FDA Hears from eight-member panel, other stakeholders on drug development in deadly lung disease
Culver City, CA/ September, 29, 2014/ Most FDA panels involve high-level executives and renowned medical professionals in their given areas of expertise.  On Friday, however, patients and family members took center stage at a U.S. Food and Drug Administration (FDA) Workshop on Idiopathic Pulmonary Fibrosis to offer  their perspectives.  
The FDA hosted the first patient-focused workshop on IPF as more than 100 people gathered in the Silver Springs offices. Those in attendance were  mostly  patients, family members, leaders of patient advocacy groups, medical professionals and industry representatives.  A few hundred also joined the event online, according to the FDA.
Patients and family members of deceased IPF patients spoke about the hardships of IPF, a disease that debilitates patients early in its course and produces a steady decline in quality of life and gradual worsening of symptoms such as shortness of breath, cough and fatigue as well as issues with anxiety and depression.  
Two survivors of IPF spoke about their experience pre- and post-transplant and about how grateful they were to be part of the less than one percent of patients who survive the deadly disease.
The Coalition for Pulmonary Fibrosis (CPF), a non-profit organization, worked with FDA to make their workshop on September 26th more accessible to IPF patients by facilitating supplemental oxygen refills.   Half of the members of the eight-person panel advocate for the CPF, including IPF survivor via lung transplant, Heather Snyder and patient family members Faye MacInnis, Curt Thompson, and the CPF’s vice president, Teresa Barnes.  All four advocates were also on Capitol Hill on Thursday with the CPF.
“The CPF is happy to see this historic time when FDA takes direct testimony from the people and families who feel the impact of this disease,” said Mishka Michon, Chief Executive Officer of the CPF.
Pulmonary Fibrosis (PF), which affects 200,000 Americans, is a lung disease characterized by progressive and irreversible scarring that renders the lungs unable to exchange blood oxygen.  Patients die in an average 2.8 years and the disease claims as many lives as breast cancer. When the cause of PF is unknown, it is referred to as idiopathic.    
Panelists thanked FDA for giving the patients a voice in the drug development process and one panelist encouraged the regulatory agency to include patients and advocates a decade or more earlier. 
The FDA’s Banu Karimi-Shah, MD agreed with the patients and advocates that the patient voice needs to be included in the process at an earlier stage.  She also conveyed to the audience that “I learned so much today.  I know it wasn‘t just a learning opportunity for me but all of us here at FDA.”  
The workshop’s purpose was for FDA to hear directly from patients about the symptoms that matter most to them and current approaches to treating IPF, according to the FDA. There were two times during the meeting when the FDA opened up for questions from the audience and a public forum held at the end of the meeting gave other stakeholders an opportunity to weigh in.  
One patient in the audience described his extreme shortness of breath during a particularly difficult episode of coughing as “knowing what it must be like to drown.”  Others described the stress and anxiety related to fears around running out of supplemental oxygen and fear of suffocation.  
The workshop was not held to review any particular drugs but rather to gather information that can aid the FDA in reviewing drugs for the disease going forward.  According to the FDA, a report will result from the meeting to guide FDA in future drug reviews and will be available publicly to the all stakeholders.  
FDA reviews of two potential IPF therapies are currently underway.   FDA recently granted breakthrough therapy designation for Boehringer Ingelheim’s nintedanib and InterMune’s pirfenidone.  If approved, they will be the first therapies available to patients with IPF in the U.S.
The FDA will still be accepting comments from patients, caregivers and all other stakeholders until November 26th via the public docket. For information on submission, visit:  
About Pulmonary Fibrosis (PF)
Pulmonary Fibrosis (PF) is a lung disorder characterized by a progressive scarring – known as fibrosis -- and deterioration of the lungs, which slowly robs its victims of their ability to breathe. Approximately 200,000 Americans suffer from PF, and there is currently no known cause or cure. An estimated 48,000 new cases are diagnosed each year. PF is difficult to diagnose and an estimated two-thirds of patients die within five years of diagnosis.  Sometimes PF can be linked to a particular cause, such as certain environmental exposures, chemotherapy or radiation therapy, residual infection, or autoimmune diseases such as scleroderma or rheumatoid arthritis. However, in many instances, no known cause can be established. When this is the case, it is called idiopathic pulmonary fibrosis (IPF). 
About the CPF
The CPF is a 501C(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for pulmonary fibrosis (PF), while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. The CPF funds promising research into new approaches to treat and cure PF; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of PF issues; and works to improve awareness of PF in the medical community as well as the general public. The CPF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. With more than 28,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with PF. For more information please visit www.coalitionforpf.org or call (888) 222-8541.

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Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd. #343
Culver City, CA 90232
(888) 222-8541
info@coalitionforpf.org
 


Monday, September 29, 2014

Still Sleepless on the Coastside

It was another long rather sleepless night due to a side effect of the antibiotic for pneumonia. Michael has a cold so we both went to bed very early. He passed out. I stayed awake. Drifting off, I was awakened suddenly from a nightmare a couple hours later. I fell back to sleep after another couple of hours then, another nightmare. Finally, I pulled myself from the bed, cleaned up my mail file, sent some emails and made a list of all the doctors and clinics I have visited since 2003. Around 3AM, I fell asleep until Michael got up.

What I don't understand is how I can function on such a little amount of sleep.

We had a nice day together yesterday, enjoyed lunch at a new restaurant and a surprisingly easy ride home. I can only explain that by both sports teams were in town and lots of people stayed home to watch the games. Giants and 49ers. Both winners!

Wayne and his youngest son Evan dropped by to measure the arbor for new 2x2s on the top, the small side door into the garage for a replacement and two posts which have rotted holding up the entrance to the little garden outside our bedroom. The wood should be delivered this week and I will be happy to put the protective produce on the wood, a bit per day. They will then return to install everything. My work for the year will be finished! List completed!

After a workout at the other rehab, I will be spending the day with mom. No doctor's appointments. Nothing planned. Sometimes that is the funnest day. Just the two of us causing havoc wherever we go!

Sunday, September 28, 2014

Side Effect of Antibiotic

Better. I am not coughing as much, was able to cut the grass then later watered all my pots. Sleeping? It has been difficult. Poor Michael, I was blaming his snoring! It was only very early this morning after another few hours awake that I remembered that I never slept in the hospital last year. But in the darkness I also remembered that when I began this new antibiotic on Friday, I reviewed the side effects and there is was: sleeplessness. Duh. I am not going to be able to get a lot of needed sleep. Rest? Yes. Sleep? No.

Hopefully, I will be much better by Thursday evening. That will be the first meeting of the university's Patient Advisory Board. Michael and I are both honored and excited to be included in offering recommendation to the larger Board of Directors.

We are going to spend today together. He needs to do a few things over the pass, I will do a light workout at the other rehab then meet for lunch together. The drive home will be a challenge. The pumpkin people are in season. The pumpkin patches are in full Halloween mode, the masses of tourists have begun their annual weekend treks to the coastside. It makes it miserable for the rest of us! Weekends will now be impossible to drive over the pass in under an hour from now until Halloween. The big Pumpkin Festival is the weekend of the 18th when hundreds of thousands of people flock to our little town. We usually stay away unless Michael has a yearning for Pumpkin Rolls! Delicious! Here is the recipe:


Ingredients

CAKE
  • 3 eggs
  • 1 cup sugar
  • 2/3 cup pumpkin
  • 1 tsp lemon juice
  • 3/4 cup flour
  • 1 tsp baking powder
  • 2 tsp cinnamon
  • 1 tsp ginger
  • 1/2 tsp nutmeg
  • 1/2 tsp salt
  • 1/2 cup walnuts, finely chopped
  • powdered sugar to sprinkle
FILLING
  • 1 cup powdered sugar
  • 4 T butter, softened
  • 6 oz cream cheese, softened
  • 1/2 tsp vanilla

Directions

  • 1
    Preheat oven to 375°.
  • 2
    For cake: liberally spray 15x10x1" jelly roll pan. Beat eggs on high speed for 5 minutes, gradually beat in sugar. Stir in pumpkin and lemon juice. Stir together flour, baking powder, cinnamon, ginger, nutmeg and salt. Fold into pumpkin mixture. Spread in prepared pan. Top with walnuts. Bake for 15 minutes. Sprinkle powdered sugar onto a fresh dish cloth and turn cake out onto cloth but not upside down. Starting at narrow end, roll towel and cake together, cool and unroll.
  • 3
    For filling: combine all ingredients and beat until smooth. spread over cake, roll up and chill. Slice and serve.




Saturday, September 27, 2014

September = Pneumonia

Well, here we go again. I think I have a bit of pneumonia. Too much fun. Too little sleep. Hopefully, I caught it early this time, instead of too late like last September.

September. Our anniversary and Michael's birthday plus William's recent visit plus all the late nights since the first of the month finally took its toll. I have a low-grade fever and a nasty cough. Thankfully, I always have a good run of an antibiotic on hand just for this type of situation. I emailed Dr. K. this afternoon with the symptoms, a reminder that I had the Levofloxacin on site and wanted her permission to begin taking it. She replied within minutes. Love that doctor. I also promised that I would contact her if the symptoms worsened.

So I guess I have to cool my jets a bit. Rest. Sleep. So very hard for me.

But, I did pull together my recipes for the week and bought everything today. I won't have to leave home for a few days. Again, these recipes are for people on prednisone. Our pancreas just doesn't process food properly, especially sugars. The diet is based on protein and non-starchy veggies.

Breakfast and/or Lunch:
Summery Pizza Omelette - Michael and I split this. - HERE

Pizza Stuffed Mushrooms - HERE

Sun-dried Tomato Dip with 2 Wasa Rye Crackers - HERE

Dinner:
Roasted Chicken with green beans - One small cut up chicken in a roasting pan lightly brushed with a low-carb BBQ sauce cooked in a 500 degree oven for 30 minutes. Delicious.

Quick Skillet Steak and Onions and Mushrooms with a steamed artichoke - HERE

Parmesan Baked Fish with Stir-fried Baby Bok Choy with Shiitake Mushrooms -  HERE  and HERE

Friday, September 26, 2014

Coughing

Congratulations to our SF Giants for their backdoor entry into the Wild Card playoffs. We'll take it anyway we can get it! It has been...an interesting year.

After being absent for the past two weeks, going back to rehab class yesterday was so hard! It was real work! This morning's workout at the other rehab will be interesting: will it be harder or easier? I am hoping easier! Yikes! But, it was such fun to see everyone and to get caught up on all the news.

After working out, Mom and I are going to Trader Joe's after a small lunch. A rather quiet day.

I am beginning to cough. It is weird but when I am tired, I swallow my saliva into my lungs which can cause an infection. It happened twice yesterday and the cough was pretty impressive for the rest of the day. No fever. The cough seemed to happen with exercise or in a cluster sporadically, then nothing. I was able to sleep later in the afternoon and was into bed early. It was hot and humid here and the both of us awakened tossing off blankets and sheets during the night. Just sticky, which is so rare for our area of the country. We used to call it earthquake weather...that's all we need!

My plans for the weekend include light yard work, light food, lots of water and tackling the Burmese Trumpet Vine again. I hope to remove about half of it this week and finish it off next week.

Happy Friday!

Thursday, September 25, 2014

Getting Wet

It is just a little storm but the sound of light rain on the roof brings us joy this morning. It also brings a lot of accidents, according to the morning news! My little plants in the yard are so very happy and we hope there is more rain coming soon.

William is back home in Seattle to begin his very busy Fall, working until just before Christmas. After he and Michael left yesterday morning, I went back to bed but couldn't sleep. We have been dealing with a ton of scammers and the phone rings sometimes five to six times a day. Thankfully, we have caller ID so we don't answer unless we know the person phoning. Every time I would drift off yesterday, the phone would ring. Then the neighbor's dog began barking...for over an hour. I finally gave up, got dressed and pulled the house together for housekeepers this morning.

Food. I had a piece of cheese for breakfast, which was just enough of a base for my pills. Lunch didn't happen and I totally enjoyed my Wasa crackers and peanut butter for dinner before orchestra rehearsal. I was so sick of food. The refrigerator is still full of leftovers and things we need to finish so I am not buying anything for a few days.

I am facing rehab class today but only after spending the morning with mom. One of my grandfather's paintings needs new matting and I want her advice. She has her father's artistic eye.

Maybe I can grab a nap after I get home. It is going to take many days to recover from all the late nights since the beginning of the month. It has been fun but just too much. I need some down time, more sleep, consistant exercise and my homemade food. All that is the equation for keeping me healthly.

Wednesday, September 24, 2014

Updated RSVP Email Address for PF Patient Event

OOPS! There was an incorrect email address for the RSVP to register for the PF patient event. The corrected address is below.

I am watching William pack up his car to begin the 800+ mile home. Rather sad...We did have a fantastic night with Elle, Marco and their daughter Ada last night. Homemade pho, ceviche and spring rolls filled with pork and taro. Delightful. We didn't get home until midnight. Michael is going to be late to work!!

Since I have to go to the orchestra rehearsal tonight, I am going back to bed this morning then not much else other than picking up the house. Done. I am done.

email header


Our previous message had an incorrect RSVP email address for registration for the in-person Pulmonary Fibrosis patient event at Johns Hopkins being held this Saturday, September 27th.  We apologize for the inconvenience.  Please emaildperez@thoracic.org to reserve your space for the in-person meeting.  To join the meeting via webinar/online, you can still register here:  https://www1.gotomeeting.com/register/701358600.
Our original message with event details appears below:  
This is your last chance to join online or inperson free IPF patient event at Johns Hopkins this Saturday, Sept. 27th!   You've been hearing about all of the exciting news and progress happening in Pulmonary Fibrosis, now take the opportunity to hear the latest updates directly from the experts.  
For those joining in-person, supplemental oxygen refills will be available and parking is easy and close, plus lunch is complimentary!  
This IPF Event is being co-hosted by the Coalition for Pulmonary Fibrosis, the American Thoracic Society and the Johns Hopkins University School of Medicine.  This is a great opportunity to get the latest updates (and there are many!) in PF Research and treatment efforts.
We encourage participation by all people impacted by PF or PF related Interstitial Lung Disease (ILD) regardless of where your healthcare is provided. Please invite others who might be interested to join us at this event. If you are planning to attend, please email Dioliver Perez at dperez@thoracic.org and include the number of people who will be with you. Please RSVP by email to Mr. Perez by 5:00 p.m. Eastern Wednesday, September 24, 2014. 
Please see the Johns Hopkins Patient Event agenda and list of speakers further down in this email.
patients at PF event at Harvard spring 2008
WHERE:  Johns Hopkins Asthma and Allergy Center Auditorium 5501 Hopkins Bayview Circle, Baltimore, MD 21224
WHEN: Saturday, September 27th from 9:00 am to 2:00 pm.
WHO: Open and free to all IPF and ILD patients, family members and the general public. Complimentary lunch will be provided. An oxygen refill station will be onsite for those attendees with portable oxygen concentrators. Parking is available in the Mid-Campus Lot directly across the street from the auditorium. 
RSVP:
Please RSVP by EMAIL: Dioliver Perez:  dperez@thoracic.org
Sincerely,
The Coalition for Pulmonary Fibrosis
Agenda
9:00-10:00 am Registration and light breakfast 
10:00-10:15 am Welcome from the ATS - Mr. Courtney L. White Welcome from the CPF - Ms. Teresa Barnes Welcome from Johns Hopkins ILD Program - Sonye Danoff, MD, PhD 
10:15-10:40 am  IPF, ILD, PF: Why All the Letters and What Difference Do They Make? - Cheilonda Johnson, MD, MHS
 10:40-11:05 am Clinical Trials in IPF: Big News and More to Come Maureen Horton, MD 
11:05-11:30 am  Lung Transplantation in PF: Who? What? When? And Why? - Pali Shah, MD 
11:30 am-12:00pm Questions for morning speakers 
12:00-1:00 pm Lunch with speakers 
1:00-1:25 pm How Can Patients, Family Members and Caregivers Help Move PF Efforts Forward? - Teresa Barnes 
1:25 -1:50 pm Understanding What Matters to You: Patient Centered Outcomes Research - Sonye Danoff, MD, PhD and John Bridges, PhD
1:50-2:00 pm Wrap up and final questions
Speakers and affiliations:
Sonye Danoff, MD, PhD 
Co-Director, Johns Hopkins ILD/IPF Program 
Associate Professor of Medicine 
Johns Hopkins University School of Medicine 
Maureen Horton, MD 
Co-Director, Johns Hopkins ILD/IPF Program 
Associate Professor of Medicine 
Johns Hopkins University School of Medicine 
Cheilonda Johnson, MD, MHS 
Johns Hopkins ILD/IPF Program Instructor, 
Johns Hopkins University School of Medicine 
Pali Shah, MD 
Associate Medical Director, Lung Transplant 
Program 
Assistant Professor of Medicine 
Johns Hopkins University School of Medicine 
John Bridges, PhD 
Associate Professor 
Health Policy and Management 
Johns Hopkins Bloomberg School of Public 
Health 
Teresa Barnes 
VP, Patient Outreach and Program Support 
Coalition for Pulmonary Fibrosis
 
Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd. #343
Culver City, CA 90232
(888) 222-8541
info@coalitionforpf.org

Tuesday, September 23, 2014

Actress Announces IPF Diagnosis

We had a lovely lunch with mom yesterday. Conversation. Stories. William did a couple of heavy chores for her. Just nice. Dinner was Ahi Tuna steaks and leftovers. Simple.

Michael and I are exhausted but we have just one more night to go. William is leaving Wednesday morning inorder to be home by a newly scheduled Friday rehearsal. Tonight, we are meeting British Don for pho with Elle and Marco. I will be first in line to hold the new baby boy.

Later today, we are meeting Michael for lunch, buying presents for tonight and trying to rest up. The fall weather is just gorgeous with the perfect light and smells.

It has been nice to just be together. Light conversation. Hearing stories. Laughing.

After he leaves Wednesday, I must pay the piper. The ocean trail has been waiting for me, the huge trumpet vine needs to lose several more limbs, the rehab class will see me again and I have plans for lots of sweat on the weekend. By then, I will feel fit again.

I got this interesting information from the Coalition for Pulmonary Fibrosis:


email header
 

The Coalition for Pulmonary Fibrosis (CPF) wants to share with you news that award-winning TV, Film and Broadway actress Barbara Barrie is helping the CPF increase awareness of Pulmonary Fibrosis.  She is a PF patient and is speaking out for the first time.
Barbara Barrie, actress
See the press release below that we sent out today.  
Sincerely, 
Mishka Michon, CEO, Coalition for Pulmonary Fibrosis
TV, Film, Broadway Actress Barbara Barrie Discloses She Has Incurable Lung Disease Days Ahead of FDA’s First Workshop Focused on Idiopathic Pulmonary Fibrosis 
 Private Benjamin, Suddenly Susan, Neil Simon’s Prisoner of Second Avenue Actress Speaks Out
New York City, New York. – September 22, 2014, - Actress Barbara Barrie is sharing her story as an Idiopathic Pulmonary Fibrosis (IPF) patient by speaking out for the first time about her diagnosis with the incurable lung disease.   Barrie is best known for her on Broadway roles in The Selling of the President, The Prisoner of Second Avenue, California Suite, Torch Song Trilogy and Company, TV roles in Suddenly Susan and Barney Miller and guest star appearances most recently in Nurse Jackie and Law & Order, and film roles in One Potato, Two Potato, Frame of Mind, Hercules and Private Benjamin. 
Barrie chose to go public during National PF Awareness Month to help raise visibility of the disease and the efforts of the non-profit organization, the Coalition for Pulmonary Fibrosis.  “I have a very full, active life, but what lies ahead is unknown and yet known at the same time,” said Barrie who is one of 200,000 Americans living with the disease.  “I am living full steam ahead and am now trying to help other people do the same.”
“There has never been a time when IPF has been at the forefront of science and innovation as it is now and having Barbara’s voice aligned with our efforts is making a huge difference,” said Mishka Michon, CEO of the CPF.  “Her attitude is positive and her words are incredibly inspiring.”
Barrie’s announcement comes just days ahead of one of the most important meetings for the disease being held at the U.S. Food and Drug Administration (FDA) on Friday.  
The FDA will hold the first IPF Workshop to hear from patients and family members about their experience with the disease.  Barrie submitted her written testimony to the FDA in recent weeks.  She plans to join the workshop via a webinar from her home in New York City.  The FDA is meanwhile reviewing two possible treatments for IPF, InterMune’s pirfenidone and Boehringer Ingelheim’s nintedanib.  If approved, they will be the first drugs available for IPF patients in the U.S.
IPF causes progressive and relentless scarring in the lungs and renders them unable to exchange life sustaining blood oxygen. “Idiopathic” means the disease has no known cause.  IPF is invariably fatal with a life expectancy of an average three years and claims as many lives each year as breast cancer (40,000).  The only known way to survive the disease longer term is by lung transplantation.  Less than one percent of the patients receive a transplant.  
“Idiopathic pulmonary fibrosis is a devastating disease that does not yet have an FDA-approved treatment, “ said American Thoracic Society Executive Director Steve Crane, PhD, MPH.  “Having a star such as Ms. Barrie bring attention to this low-profile but deadly disease by personally disclosing her battle with it will help raise much-needed awareness.”
Public Figures Lost to Pulmonary Fibrosis include:  Actor/Singer Robert Goulet, Actor Marlon Brando, Actor Gordon Jump from WKRP in Cincinnati, Actor James Doohan from Star Trek, as well as Jaws Author Peter Benchley, and Stuntman Evel Knievel.  
About Barbara Barrie:
Barbara Barrie has had a distinguished career in film, television and theatre.  On Broadway, Ms. Barrie has appeared in The Selling of the PresidentThe Prisoner of Second AvenueCalifornia SuiteTorch Song Trilogy, and Company, which garnered her a Tony nomination for Best Performance by an Actress in a Featured Role.  She recently appeared Off-Broadway in I Remember Mama, receiving an Outer Critics Circle award nomination for Outstanding Featured Actress in a Play. Other Off-Broadway credits include The Vagina MonologuesCurrent Events,After-PlayThe CrucibleThe Beaux’ StratagemLove LettersIsn’t It Romantic? and in The Killdeer, for which she earned an Obie and Drama Desk award for Outstanding Off-Broadway Performance.  She has also performed often for both the New York Shakespeare Festival and the American Shakespeare Festival in Stratford, Connecticut.
On television, Ms. Barrie’s appearances on Law and Order and Law and Order: Special Victims Unit, earned her an Emmy award nomination for Outstanding Supporting Actress in a Drama Series and a nomination for Outstanding Guest Actress in a Drama Series, respectively.  She earned another Emmy Award nomination for Outstanding Supporting Actress in a Drama Series for her role as ‘Evelyn Stoller’ in Breaking Away.  She may be best known to television audiences for her regular role in Suddenly Susan opposite Brooke Shields and her recurring and guest star roles inEnlightened, Nurse Jackie,  Once and AgainBarney MillerThirtysomething and Family Ties.  Additionally, Ms Barrie’s mini-series and television movie credits include Scarlett and Roots: The Next Generation as well as A Chance of Snow, My Left Breast, The Odd Couple: Together Again,Tell Me My Name, To Race the Wind, American Love Affair, and Barefoot in the Park.
Ms. Barrie earned the Best Actress Award in the Cannes Film Festival for her performance in One Potato, Two Potato.  For the film Breaking Away, she earned an Academy Award nomination for Best Performance by an Actress in a Supporting Role. Her performance in the award-winning filmJudy Berlin brought her an Independent Spirit Award nomination for Best Supporting Female.  Her other film credits include Frame of MindSecond BestHerculesPrivate BenjaminThe Bell Jar, and Thirty Days
Ms. Barrie is also the author of two critically acclaimed novels for young adults, Lone Star andAdam Zigzag, as well as a memoir documenting her bout with colon cancer entitled Second Actwhich has been released in its paperback version under the title Don’t Die of Embarrassment: Life After Colostomy and Other Adventures
Background on FDA IPF Workshop
The FDA is planning to hold the first FDA IPF Workshop where it plans to hear directly from patients, family members and caregivers about their struggles with the disease as well as their feedback and suggestions for improved drug development in the disease.  IPF was included as one of the FDA “patient focused drug development program” workshops after the IPF patient community spoke out publicly asking FDA to include the disease and sent 3,000 letters to FDA Commissioner Dr. Margaret Hamburg.  The FDA Workshop will take place at the FDA offices in Silver Spring, MD on September 26th
September -- National Pulmonary Fibrosis Month 
All month, the CPF holds national awareness efforts for the 12th year.  The CPF and the American Thoracic Society will co-host an awareness week for the disease during PF month, the same week as the FDA hearing (September 21-27) and will co-host a patient event with Johns Hopkins Medical Center on September 27th and the CPF will bring patients and advocates to Capitol Hill on September 25th, as well. 
About Pulmonary Fibrosis (PF)
Pulmonary Fibrosis (PF) is a lung disorder characterized by a progressive scarring – known as fibrosis -- and deterioration of the lungs, which slowly robs its victims of their ability to breathe. Approximately 200,000 Americans suffer from PF, and there is currently no known cause or cure. An estimated 48,000 new cases are diagnosed each year. PF is difficult to diagnose and an estimated two-thirds of patients die within five years of diagnosis.  Sometimes PF can be linked to a particular cause, such as certain environmental exposures, chemotherapy or radiation therapy, residual infection, or autoimmune diseases such as scleroderma or rheumatoid arthritis. However, in many instances, no known cause can be established. When this is the case, it is called idiopathic pulmonary fibrosis (IPF). 
About the CPF
The CPF is a 501C(3) nonprofit organization, founded in 2001 to accelerate research efforts leading to a cure for pulmonary fibrosis (PF), while educating, supporting, and advocating for the community of patients, families, and medical professionals fighting this disease. The CPF funds promising research into new approaches to treat and cure PF; provides patients and families with comprehensive education materials, resources, and hope; serves as a voice for national advocacy of PF issues; and works to improve awareness of PF in the medical community as well as the general public. The CPF's nonprofit partners include many of the most respected medical centers and healthcare organizations in the U.S. With more than 28,000 members nationwide, the CPF is the largest nonprofit organization in the U.S. dedicated to advocating for those with PF. For more information please visit www.coalitionforpf.org or call (888) 222-8541.

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Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd. #343
Culver City, CA 90232
(888) 222-8541
info@coalitionforpf.org
 


Monday, September 22, 2014

A Success!

The very casual get together on the patio Sunday afternoon was fantastic. The perfect tone. Relaxed. Fun. British Don, Wayne, Jill and their boys arrived right around 2PM, appetizers were out on the separate table and people just sat around the patio chatting. And laughing. And drinking! William brought a small keg of Manny's, an IPA beer from Seattle, and four out of the eight of us had all a human could ever want. The rest of us had water or lemonade or coke. Jill make several appetizers using her preserved lemons, which were delicious. One was made with huge white beans, another with carrots and goat cheese and the other was a tapenade. Salty and very good!

The baked beans and speciality sausages; cantaloupe with sugared bacon and basil; and caprese salad were simple yet perfect for the outdoor early dinner. The big chocolate chip cookie topped with ice cream and chocolate sauce was...dare I say it again...perfect.

William loved spending the day with these dear friends. Today, it is grandma day. We will be doing a bit of new baby shopping then having lunch with my mom. Tuesday, the three of us and British Don have been invited to a special dinner of pho at the home of the owners of our favorite restaurant group. Elle is a killer cook and we have not met their new baby boy yet. They also have a little girl. A sweet family.

I am really tired. I am also a bit concerned because I was rather short of breath and coughing later in the evening. It was cooler, so I wonder if the cold weather set off the constant coughing. This morning, I seem to be breathing well but we will see as the day continues. Early to bed for me tonight!

Sunday, September 21, 2014

Spending Time with Our Son

Michael and William spent most of the day together, we had leftovers for dinner, they took the 1966 Mustang convertible they are building out for a spin then we cut and tied all the 2x2s from the arbor into bundles, which will be picked up Monday morning. After that, William asked if we were going to bed, we were so he took off to see band members who live in the city. He toured with them last year and they have become friends. It was 8:30.

Around 1AM, I heard my iPhone ding. He was going to stay in the city. Smart. He will be home later this morning. The party begins here at 2Pm, British Don, Wayne, Jill and their two sons will join us for a simple lunch of grilled pork and chicken specialty sausages, baked beans, melon with sugared bacon and basil, calabrase salad, special salsa and chips, nuts and homemade chocolate cookies with ice cream and chocolate sauce. Lots to pull together this morning!

Tomorrow, we will finally see my mom. She is itching to spend some time with William. We will also swing by Mark, the watch guy, so William can pay him for the Rolex he bought himself to celebrate ten years of touring.

It is so good to talk with him, see that he is surrounded by good people, he is happy in life and still loving the work. In fact, he told Michael yesterday that he feels he is blessed to have the job and the life  he has etched out from nothing. That is maturity. As a mom, it makes my heart smile.

Saturday, September 20, 2014

ILD Free Seminar In-Person or Online

William is home. The house is full once again. We are planning Sunday's afternoon get together with Wayne' family and British Don, I am buying food today while he and Michael are running around. So good to have him home.

I received this information from the Coalition for Pulmonary Fibrosis about a free IPF patient event next weekend. It would also be helpful for people who have other ILDs. All the information is below.



email header

This is a reminder of the free IPF patient event (join online or in-person) at Johns Hopkins on Saturday, Sept. 27th!   The event is  open to you, your family and caregivers. Supplemental oxygen refills will be available and parking is easy and close!  Please RSVP now!  Email Doliver Perez at dperez@thoracic.org if you'd like to attend in person. To join online, just go to this link and register:  https://www1.gotomeeting.com/register/701358600
This IPF Event is being co-hosted by the Coalition for Pulmonary Fibrosis, the American Thoracic Society and the Johns Hopkins University School of Medicine.  This is a great opportunity to get the latest updates (and there are many!) in PF Research and treatment efforts.
We encourage participation by all people impacted by PF or PF related Interstitial Lung Disease (ILD) regardless of where your healthcare is provided. Please invite others who might be interested to join us at this event. If you are planning to attend, please email Dioliver Perez at dperez@thoracic.org and include the number of people who will be with you. Please RSVP by email to Mr. Perez by Wednesday, September 24, 2014. 
If you are going to the FDA IPF Workshop in Silver Spring, MD, this may be a perfect opportunity (even if you are not from the area) since it's in the region and is the day after the FDA Workshop (the FDA IPF Workshop is Friday, Sept. 26, 2014.  [For more information on the important FDA event that encourages patients and family members and caregivers to attend, visit the FDA site at:http://www.fda.gov/ForIndustry/UserFees/PrescriptionDrugUserFee/ucm395774.htm).]
Please see the Johns Hopkins Patient Event agenda and list of speakers further down in this email.
patients at PF event at Harvard spring 2008
WHERE:  Johns Hopkins Asthma and Allergy Center Auditorium 5501 Hopkins Bayview Circle, Baltimore, MD 21224
WHEN: Saturday, September 27th from 9:00 am to 2:00 pm.
WHO: Open and free to all IPF and ILD patients, family members and the general public. Complimentary lunch will be provided. An oxygen refill station will be onsite for those attendees with portable oxygen concentrators. Parking is available in the Mid-Campus Lot directly across the street from the auditorium. 
RSVP:
Please RSVP by EMAIL: Dioliver Perez:  dperez@thoracic.org
Sincerely,
The Coalition for Pulmonary Fibrosis
Agenda
9:00-10:00 am Registration and light breakfast 
10:00-10:15 am Welcome from the ATS - Mr. Courtney L. White Welcome from the CPF - Ms. Teresa Barnes Welcome from Johns Hopkins ILD Program - Sonye Danoff, MD, PhD 
10:15-10:40 am  IPF, ILD, PF: Why All the Letters and What Difference Do They Make? - Cheilonda Johnson, MD, MHS
 10:40-11:05 am Clinical Trials in IPF: Big News and More to Come Maureen Horton, MD 
11:05-11:30 am  Lung Transplantation in PF: Who? What? When? And Why? - Pali Shah, MD 
11:30 am-12:00pm Questions for morning speakers 
12:00-1:00 pm Lunch with speakers 
1:00-1:25 pm How Can Patients, Family Members and Caregivers Help Move PF Efforts Forward? - Teresa Barnes 
1:25 -1:50 pm Understanding What Matters to You: Patient Centered Outcomes Research - Sonye Danoff, MD, PhD and John Bridges, PhD
1:50-2:00 pm Wrap up and final questions
Speakers and affiliations:
Sonye Danoff, MD, PhD 
Co-Director, Johns Hopkins ILD/IPF Program 
Associate Professor of Medicine 
Johns Hopkins University School of Medicine 
Maureen Horton, MD 
Co-Director, Johns Hopkins ILD/IPF Program 
Associate Professor of Medicine 
Johns Hopkins University School of Medicine 
Cheilonda Johnson, MD, MHS 
Johns Hopkins ILD/IPF Program Instructor, 
Johns Hopkins University School of Medicine 
Pali Shah, MD 
Associate Medical Director, Lung Transplant 
Program 
Assistant Professor of Medicine 
Johns Hopkins University School of Medicine 
John Bridges, PhD 
Associate Professor 
Health Policy and Management 
Johns Hopkins Bloomberg School of Public 
Health 
Teresa Barnes 
VP, Patient Outreach and Program Support 
Coalition for Pulmonary Fibrosis
 
 
 
Coalition for Pulmonary Fibrosis
10866 W. Washington Blvd. #343
Culver City, CA 90232
(888) 222-8541
info@coalitionforpf.org
 


Friday, September 19, 2014

Staying Active and Sad Pirfenidone News

Our friend Barbara had skin cancer removal surgery yesterday. Speedy recovery, Barbara!

William is not here yet!! Something happened and he couldn't leave as early as planned, so he spent the night somewhere in southern Oregon or northern California. I am going to work out at the other rehab early this morning, spend some time and lunch with mom then will arrive home in time to welcome him from his long drive.

At my special free facial yesterday, it was all I could do not to fall asleep. I was so totally relaxed that I fell into my chair at home and promptly fell asleep for over an hour and a half. It felt fantastic! I stumbled awake, had a late lunch of tuna then hit the yards. Besides the usual work, I removed a number of large branches over the entrance to the hidden garden. We need to replace the posts, which have rotted away. The Burmese Trumpet Vice has become to big for the area, we will be removing it bit by bit over the next couple of weeks and replacing it with a cool, long planter filled with horsetail bamboo. Cool. Contemporary. Clean.

It took three hours to do all the work including cutting all the branches into the recycle bin. It was sweaty work. It was mostly done from a high ladder. I must have braced myself while on the ladder as I have several large bruises on my right shin. After blowing the area clean, I climbed back up the ladder to wash the high windows and others that were so dirty from all the sanding when the house was painted last week. I use the Windex wand, which worked great. I finished just thirty minutes before Michael arrived home to a very dirty, bruised, full of sweat, very lovely wife!

I forgot to mention that I ran into Robin at yesterday's ILD Patient Appreciation luncheon. She was diagnosed with IPF and has been in the pirfenidone study for ten years! Sadly, she shared with me that suddenly her lung capacity numbers are falling at the same rate as others with IPF, which is not good. It may be a sign that this drug - that is probably being approved by the FDA this year - may only work for a limited number of years. Or not. No one knows, at this point.

Thursday, September 18, 2014

A Full Day and a Full House

He will be home today. Or rather tonight. We will be seeing our son for the first time since last Christmas, which is a long time for a mom. He will be driving through a nasty fire area and some rain on his very long 800+ mile drive. I will be glancing out the window all day...

We have invited Wayne, Jill and the boys over for a simple outdoor meal on Sunday afternoon. Sausages, beans, ice creams kind of meal. Time with William. I am going to cut the grass this afternoon so I don't have to do it while William is here. The grass has slowed down with the coming of Fall so it will still be fine by Sunday.

The big news is that I phoned another plumber yesterday morning, he returned the call around 1:30, we met at the house and within 40 minutes, the pressure valve was replaced and he was gone. Simple and done. Never heard from the other plumber. Grrrrrr.

The ILD Patient Appreciation luncheon was lovely. I ran into the coordinator from the lung transplant clinic, we talked and shared email addresses. She had lost over ninety-pounds with my nutritionist but had put about half of it back on. There also was a mom and daughter I met over a year ago at a lecture, the mom had just be diagnosed with IPF and they were in such a better place mentally from when I first met them. They also were sitting at the same table with a woman who was transplanted four years ago. She gave them lots of hope.

I ran into the woman who arrived at an ILD Support Group a couple years ago and promptly fell apart. She needed lung transplants but was overweight. At the end of the meeting, I gave her the weight management clinic information but it took her two years to contact them. She was in dire need of new lungs but was very overweight. We happened to bump into each other before a nutritionist appointment last February. She kind of drove me nuts as she always played the victim during the meetings but I began to kind of like her. When I saw her yesterday, she was a totally different person. Confident and less a victim. She was also 125 pounds lighter. Well, what do you know? Her health improved to greatly with the weight loss that SHE NO LONGER IS ILL ENOUGH FOR TRANSPLANTS. How is that for news? I was so happy for her.

She had asked a question during the presentation: I want to know how long I will live post transplant using my age and health. When we talked together after this question, I told her that all the numbers were based on a group of individuals. We are all different. According to the numbers, I should be dead long ago. It doesn't matter what the statistics are. She is an individual. She should focus on staying fit and live every moment to its fullest, with or without a transplant. It was almost like she was asking for a guarantee of of certain number of years post-transplant. There are no guarantees. She nodded and said, "You're right. I never thought of it like that."

Another question asked during the presentation: The number of years of the university's longest living lung transplant recipients. They have several approaching twenty years and one who is currently at twenty-three years post-transplant. That is amazing.

I am looking forward to a facial this morning and yard work this afternoon. We are going to dinner tonight but do not expect to see our son until late in the evening. I know he worked a concert last night so he probably didn't get to bed until 2AM. Will be begin is journey early or late? That is the question.  I will eventually hear from him via text during his long drive home. Home. The house will feel complete once again.

Wednesday, September 17, 2014

Blog Audience Countries

The number of hits to this blog have been huge the past few days. With experience, I have learned to check the AUDIENCE button to see what country is suddenly the most active. Usually, the US is first but I am always rather humbled that someone from almost every country around the world has been represented on that list at one time or the other. The past couple of years, the numbers would go up and Russia would suddenly top the list. Someone would just get a bad diagnosis, was in the panic stage, was researching anything they could find and reading most of my past blogs.

For three or four days, the top country on the audience list has been someone in France.

I decided to write this blog to share information and my experiences with a goal that it help someone else also dealing with a bad diagnosis. When I see a jump in the numbers and a specific country hits the top of the list, my heart kind of reaches out for whoever is searching.

My suggestion is to read the first full year of the blog. It tells the story. It gets through the panic phase. After that, cull through the other years and spot read. There is a lot of information there. There is also a lot of hope.