Partnership to Improve Patient Care

  • Home
  • About
    • Mission and Priorities
    • Meet the Chairman
    • Steering Committee
    • PIPC Member List
    • Contact
  • The Issues
    • Value Our Health
    • International
    • Where We Stand
    • Value Assessment Frameworks
    • Engaging Patients in Value-Based Payment
    • Patient-Centeredness in Research
  • Resources
    • Advocacy
    • Letters and Comments
    • PCORI Meeting Transcripts
    • Polling
    • Roundtables
    • White Papers
  • Blog
    • PIPC Patients' Blog
    • Chairman's Corner
    • PIPC Weekly Update
    • The Data Mine
  • Newsroom
    • PIPC in the News
    • Press Releases
    • Open Letter: We Deserve a Voice
  • Events
    • PIPC Forum 2022
    • Discrimination & Health Care
    • C & GT Webinar
    • ICER COVID Webinar
    • Value Our Health Briefing
    • QALY Briefing
    • QALY Panel
    • Past Webinars >
      • ICER SCD Webinar
      • VOH Sickle Cell Webinar
      • Rare Disease Webinar
      • QALY Webinar
      • PCORI Advocacy Webinar
      • APM Webinar
      • Patient Empowerment Webinar
      • Value Assessments Briefing
    • Past PIPC Forums >
      • 2021
      • 2020
      • 2019
      • 2018
      • 2017
      • 2016
      • 2015
      • 2014
      • 2013
      • 2012
      • 2011
      • 2010
  • Home
  • About
    • Mission and Priorities
    • Meet the Chairman
    • Steering Committee
    • PIPC Member List
    • Contact
  • The Issues
    • Value Our Health
    • International
    • Where We Stand
    • Value Assessment Frameworks
    • Engaging Patients in Value-Based Payment
    • Patient-Centeredness in Research
  • Resources
    • Advocacy
    • Letters and Comments
    • PCORI Meeting Transcripts
    • Polling
    • Roundtables
    • White Papers
  • Blog
    • PIPC Patients' Blog
    • Chairman's Corner
    • PIPC Weekly Update
    • The Data Mine
  • Newsroom
    • PIPC in the News
    • Press Releases
    • Open Letter: We Deserve a Voice
  • Events
    • PIPC Forum 2022
    • Discrimination & Health Care
    • C & GT Webinar
    • ICER COVID Webinar
    • Value Our Health Briefing
    • QALY Briefing
    • QALY Panel
    • Past Webinars >
      • ICER SCD Webinar
      • VOH Sickle Cell Webinar
      • Rare Disease Webinar
      • QALY Webinar
      • PCORI Advocacy Webinar
      • APM Webinar
      • Patient Empowerment Webinar
      • Value Assessments Briefing
    • Past PIPC Forums >
      • 2021
      • 2020
      • 2019
      • 2018
      • 2017
      • 2016
      • 2015
      • 2014
      • 2013
      • 2012
      • 2011
      • 2010

The PIPC Blog

PIPC Patient Blog: Laura Roix

6/5/2015

 
Picture
​My name is Laura Roix, and I’ve been living with idiopathic pulmonary fibrosis (IPF) since 2006. After going through multiple false diagnoses from a number of doctors, I finally found what worked for me: self-advocacy and perseverance. Until I got to that point though, I went through 6 years of difficult medical experiences that finally led me to become a self-advocate for my medical care.

Starting in 2006, I visited a pulmonary doctor after being diagnosed with pneumonia multiple times. The pulmonologist found that I had scar tissue in my lungs, and we monitored it for years. He always said that it wouldn’t spread so not to worry about it – but things quickly changed in 2012. In February of that year, my doctor let me know the scarring had spread; not only in my right lung, where it was originally occurring, but also to the left.

​

In November of 2012 I was worse with a major cough. I decided to find another pulmonary doctor whose assistant told me it was post nasal so for another 5 months I went to an otolaryngologist, who told me it was reflux so I went to a gastroenterologist, who sent me to another pulmonologist. That pulmonologist showed a real concern and finally diagnosed me with IPF after doing a biopsy of my lung in May of 2013.

After being diagnosed with IPF, the Pulmonologist said not to worry he’d take care of me. But he also informed me that there was no cure, and through research I learned that most people only live around 3 to 5 years after diagnosis. At that moment, I realized I did not like the process that I was going through. I decided that it was not the route I wanted to go – I couldn’t just sit back and try not to worry about my health while someone else makes decisions for me.

I was desperate for something to be different because I did not like the answers I was getting – I needed to be able to make a decision, but instead, decisions were being made for me including taking medications that in combination had a high mortality rate. I decided to go online to research a new path to solutions. After searching online, I eventually found a resource called PatientsLikeMe. I noticed that people were writing about their experience, so I made an effort to start blogging about mine. I had the opportunity to talk to others with the same condition and get advice about how to move forward.

Fellow bloggers suggested I seek a Center of Excellence for lung disease, because they are geared toward performing cutting edge research and treatment of specific conditions. From there, I started my journey of being empowered to have a voice in my own medical care.

Once I went to the Center for Excellence, the doctors said I had options, saying that it was “best to have a lung transplant.” I went through a rigorous evaluation process, and along the way, started to blog more and more about my journey. While blogging, a group reached out to me and asked if I would be willing to tell my story in front of the Food and Drug Administration (FDA), because the agency was looking into two new drugs that could slow the progression of IPF. That experience allowed me to talk about my condition, and how to combat it with a team of doctors that were truly focusing on my health.

I am currently in a program that is preparing me for a lung transplant, and am in the process of being evaluated by another center.  I have a team of three specialty doctors at the centers and a local Pulmonary doctor that all work with me quite frequently. When my local pulmonary doctor is unsure of the answer, he is willing to learn with me and to research IPF.  Because there are over 200 lung diseases—and IPF is one of the less frequent ones—we are learning together. But it is always important that I speak up and share my questions and concerns.

Since I’ve started advocating for my own medical care, I have gained experience working with welcoming and open medical professionals. I’ve learned that it is important to keep your caregiver involved, because even though he or she is not the patient, they will have concerns about your well-being and can recommend treatment options. Your caregiver will have questions that come from a completely different perspective but are just as important.  I’m also in a clinical trial for another drug that may help IPF.  I believe trials are important for the patient and for people who may be diagnosed in the future.
​
I have received opportunities to discuss my experience publicly after starting to blog about my condition, and I have found that being vocal about one’s needs is the most important thing you can do. Further, as a patient, I’ve come to understand the importance of doing research for yourself - because of all the people invested in our health and well-being, we always have to be an advocates for ourselves. And over 5 years after being diagnosed with IPF, I’ve proudly beaten my life expectancy rate, and continue to live my life advocating for expanded treatment options. 

Comments are closed.

    Topics

    All
    Alternative Payment Models
    Chairman's Corner
    Patient Centered Research
    PIPC In The News
    PIPC Patient Blog
    PIPC Weekly Update
    Press Releases
    The Data Mine
    Value Frameworks

    Archives

    February 2023
    January 2023
    December 2022
    November 2022
    October 2022
    September 2022
    August 2022
    July 2022
    June 2022
    May 2022
    April 2022
    March 2022
    February 2022
    January 2022
    December 2021
    November 2021
    October 2021
    September 2021
    August 2021
    July 2021
    June 2021
    May 2021
    April 2021
    March 2021
    February 2021
    January 2021
    December 2020
    November 2020
    October 2020
    September 2020
    August 2020
    July 2020
    June 2020
    May 2020
    April 2020
    March 2020
    February 2020
    January 2020
    December 2019
    November 2019
    October 2019
    September 2019
    August 2019
    July 2019
    June 2019
    May 2019
    April 2019
    March 2019
    February 2019
    January 2019
    December 2018
    November 2018
    October 2018
    September 2018
    August 2018
    July 2018
    June 2018
    May 2018
    April 2018
    March 2018
    February 2018
    January 2018
    December 2017
    November 2017
    October 2017
    September 2017
    August 2017
    July 2017
    June 2017
    May 2017
    April 2017
    March 2017
    February 2017
    January 2017
    December 2016
    November 2016
    October 2016
    September 2016
    August 2016
    July 2016
    June 2016
    May 2016
    April 2016
    March 2016
    February 2016
    January 2016
    December 2015
    November 2015
    October 2015
    September 2015
    August 2015
    July 2015
    June 2015
    May 2015
    April 2015
    March 2015
    February 2015
    January 2015
    December 2014
    November 2014
    October 2014
    September 2014
    August 2014
    July 2014
    June 2014
    May 2014
    April 2014
    March 2014
    February 2014
    January 2014
    December 2013
    November 2013
    October 2013
    September 2013
    August 2013
    July 2013
    June 2013
    April 2013
    March 2013
    December 2012
    November 2012
    February 2012
    September 2011
    August 2011
    July 2011
    May 2011
    March 2011
    November 2010
    October 2010
    September 2010
    August 2010
    April 2010
    March 2010
    February 2010
    December 2009
    September 2009
    July 2009
    June 2009
    May 2009
    February 2009
    January 2009
    December 2008

About PIPC
The Issues
Resources
Blog
In the News
Press Releases
Contact Us
100 M Street, SE – Ste. 750
Washington, DC 20003