Getting the Specialized Medical Help We Need

Getting the Specialized Medical Help We Need

Just breathe, passionate help for the PF journey

Most of us receive our medical care from our primary care doctor or a local pulmonologist. However helpful they may be, they don’t know everything about the rare disease that we have. Four years ago, the first pulmonologist I saw told me I had a few months to a year to live. I got a second opinion, and my new pulmonologist referred me to the University of California, San Francisco, a hospital that specializes in pulmonary fibrosis.

If possible, try to get a referral from your local doctor to a hospital that specializes in pulmonary fibrosis. We need all the help we can get!

Care Center Network or Center of Excellence?

There are two designations you may come across as you search for a medical center that has experts to treat pulmonary fibrosis. Many patients, including myself, get confused about these designations, which I hope to clear up in this column.

The Pulmonary Fibrosis Foundation (PFF) established the “Care Center Network” composed of medical centers with specific expertise in treating pulmonary fibrosis. The network has 60 designated sites across the United States, with more centers planned. Its goal is to have a center within two hours of the majority of the population.

To receive a Care Center designation from the PFF, centers undergo a rigorous application process and a review by a medical team, advisers, patient advocates, and internal PFF staff. Visit the PFF’s website to find care centers near you. It’s worth the effort to get the best treatment possible.

Centers of Excellence” are designated by the Centers for Medicare & Medicaid Services (CMS) and administered according to state guidelines. These facilities must meet certain requirements and undergo surveys and audits. The designation is given to centers that agree to take a package reimbursement price from CMS for an episode of care. It is interesting to note that successful patient outcomes are not measured or even considered in the designation, according to one of the program’s early critics, the American Academy of Orthopaedic Surgeons.

Connect with other patients and share tips on how to manage PF in our forums!

Some believe the term “Center of Excellence” is misleading because it implies or promises excellent care and high patient outcomes when those results might not even be measured. The designation is not restricted to providers that meet prescribed standards and hold associated certifications.

This does not mean that hospitals designated as centers of excellence do not provide excellent care — they most likely do. Make sure you ask important questions about patient outcomes to help you understand which specialized hospital is best for you.

Help online

I found a useful resource online. U.S. News & World Report ranks the best hospitals in the United States for pulmonary care as well as other specialties. The rankings are based mainly on objective data and are updated annually. According to the publication, “Each specialty showcases the 50 top-scoring hospitals, based mostly on death rates for particularly challenging patients, on patient safety and on other measures of performance that can be assessed using hard data. All evaluated hospitals and their results and overall scores are displayed online, but rankings are only displayed for the top 50.”

Getting specialized care quickly is crucial. I know that some patients may not live within driving distance to a hospital that specializes in pulmonary fibrosis. I’m so sorry if this is true for you. I encourage you to get a second opinion near you if you are unhappy with your care. You can also call the American Lung Association’s Lung HelpLine (1-800-LUNGUSA), where you can talk one-on-one with a medical professional who can offer tips and connect you to resources.

Webinar

As I mentioned in a previous column, I’ll be a guest on a monARC Bionetworks webinar on Wednesday, Aug. 15, from 10-11 a.m. PST. I look forward to sharing what I’ve learned about self-care since I was diagnosed with PF four years ago.

Please join me! You can register here.

I’d love to hear from you!

Have you received a second opinion or been referred to a Care Center Network or Center of Excellence? What was the result? Did you get the help you needed?

Please leave a comment below and share with those who could benefit via email or on social media.

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

13 comments

  1. Richard Dixon says:

    I was diagnosed with Idiopathic Pulmonary Fibrosis about 9 months ago. Yes I did get a second opinion which confirmed the diagnosis. I am trying to learn as much as I can about this disease so that I can know what to expect and what I can do to help myself.

  2. Cindy says:

    My husband, Richard, was diagnosed with IPF at the Mayo Clinic in Jacksonville, Fla. He has received great care there and he is lucky to have a good Dr. near our home that coordinates with his Dr. at the Mayo Clinic.

  3. Peter Davies says:

    Hi Kim my name is Pete Davies frome somerset in england , it was your forum i 1st read when i looked online about the disease . I had a lower lobe resection in 2012 took time off work 2 recover and returned 2 work (physical) , and then in 2016 had a massive shock 2 system when was told by my specialist after feelin listless that my illness was going 2 reduce my life severly . I am now awaiting a lung transplant and on oxygen 24 /7 .Its good to see you still on line as enjoy reading how everyone is getting on, i have replied on numerous occasions 2 no avail so hope this gets thru not very good in england tc pete

    • Hi Pete, Thanks for writing all the way from England! So glad you’re on the transplant list. I’m hoping to be listed in January. So sorry you’ve had trouble getting your comments to register before. It worked this time! So glad to have you here

  4. Brenda says:

    My husband started useing a vibrating vest , for treatment for I p f does anyone have Information on how it worked for them? Bre

  5. Cora Godwin says:

    I was diagnosed with PF a year and a half ago. My pulmonologist suggested I see a Dr. At one of the larger clinics which I did. After many tests, the Dr. There confirmed that my Pulmonologist was doing everything in compliance with what he would do. I am taking Cellcept and on and off prednisone, but am concerned because of constant coughing and congestion. Any suggestions for other medications would be appreciated.

    • Hi Cora, thanks for your comment. I would encourage you to ask your doctor about Nintedanib (Ofev®) and Pirfenidone (Esbriet®, Pirfenex®, Pirespa®) which are anti-fibrotic drugs that have demonstrated in clinical trials to slow down the rate of scarring in the lungs. They aren’t a cure, but can slow down the progression of our disease. Blessings to you.

  6. Cora Godwin says:

    Thank you Kim for your suggestions. I Have already tried Ofev, but couldn’t tolerate side effects it was causing. Was put back on Cellcept but am concerned it may not be what I need. I will ask about Esbriet. Thanks again

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