Thursday, July 3, 2014

"We the patients and caregivers live in the here and now.”

Barbara, I stole the title of this post from your comment to my last post. Your words crystallized the message in the comments so far.

I'll be honest. I expected everyone to say they wanted to spend the Pulmonary Fibrosis healthcare dollar on research for a cure. I was prepared to make the argument that we also need to fix the problems with delivery of healthcare to patients with PF. Very happy to see that we are largely in agreement.

Here's what I heard from your comments:

1. We need to educate healthcare professionals about diagnosis and management of PF. This includes internists, pulmonologists who do not practice at an ILD or PF center, nurses, respiratory therapists, and other allied health professionals.

2. We need access to better oxygen delivery systems to allow greater mobility and time away from an electrical outlet.

3. We need better/earlier access to pulmonary rehabilitation and supplemental oxygen.

4. We need better access to support services (grief counseling, social workers)

5. We need research that leads to drugs that actually make people feel better

I completely agree with each of these points.

What else should we add to the list? Also chime in if you agree or disagree with any of these needs.


  1. It's interesting when looking at online surveys vs discussions with both patients and caregivers. Keeping in mind that online PF participation is a small vocal minority of patients I find the online questions or responses center around coping and dealing with living with Pulmonary Fibrosis while the off line, face to face, skype or phone focuses on finding a cure or alternative solutions. I seldom take any online survey as the gospel or representative of the majority of patients.

    1. Good point, Bill. This is definitely not a valid representative survey. And I agree that research toward a cure is important. I will point out that my own experience caring for hundreds of PF patients is that the vast majority show up to my office with the wrong diagnosis, the wrong information about their disease, and have been receiving inadequate or inappropriate therapy. Current management approaches need improvement along the lines that Barbara, Taleena, Leanne, Judy and others have pointed out.

  2. We need more basic education for newly diagnosed patients, a booklet which defines terms, refers to COE. It should contain statements from 'veteran' patients (maybe with pictures of them) it should refute or flesh out the "you have 3 years to live" stuff, and it should define terms. In the several months between a first "diagnosis" from a local pulmonologist and getting into my COE my family and I had to pick up information from the web (not always accurate). Come to think of it, local docs, even pulmonary docs and certainly PCP docs know so little that the booklet would be good for them, too.

    1. I agree with you, David. As Barbara pointed out, the PFF's Patient Information Guide (and their website @ has much of this information. Completely agree that we need to do a better job educating healthcare professionals.

    2. PFF Disease Education Webinar Series: Next up

      Health Care Professional Focused Webinar - “Making an Accurate Diagnosis: How to use IPF Consensus Guidelines”

      Wednesday, July 16, 2014
      12:30 p.m. to 1:30 p.m. CDT

      Presented by
      Fernando J. Martinez, MD, MS, PFF Medical Advisory Board member and Executive Vice Chair of Medicine at Weill Cornell Medical College, and New York-Presbyterian Hospital/Weill Cornell Medical Center.

      While this webinar is geared toward a professional audience, the PFF welcomes those outside of the medical profession to participate.

      To register and submit questions:

    3. Here is one that I use to educate friends and family:

      It needs a little updating, but is a pretty good resource.

  3. Fair turn around David since I borrow your words so often. This is a fantastic discussion and even though health care here in Canada differs greatly from that in the US, we as patients and caregivers are facing the same issues.

    I am heavily involved in the advocacy work here in Canada for publicly funding Esbriet. Do I think it will happen in time to help me? Probably not and without it there is no treatment but transplant. Do I expect a cure in my lifetime? Most definitely not. My here and now is my quality of life. The future belongs to those coming behind us and those IPF treatments and cures are hopefully in their future.

    But we deserve to be more than lab rats for clinical trials. We deserve to have as much attention and as many resources spent on what can be done for us in the short term to maintain and/or improve our QOL.

    @David Smalley, have you seen the Patient Information Guide from the Pulmonary Fibrosis Foundation ( and the one from the Canadian Pulmonary Fibrosis Foundation (

  4. David, as to:

    2. We need access to better oxygen delivery systems to allow greater mobility and time away from an electrical outlet.

    3. We need better/earlier access to pulmonary rehabilitation and supplemental oxygen.

    your colleague Dr Jeff Swigris out of National Jewish Health in Denver is running a supplemental oxygen study under the Participation Program for Pulmonary Fibrosis AND THEY CAN'T GET ENOUGH PEOPLE ENROLLED. They especially need those who haven't yet started oxygen therapy to enrol so that they can track and monitor you.

    So please people, if you're reading this blog, please hope on over to Check out the P3F Registry, the Current Studies. You will also see under the Oxygen Study Updates that they still need more people to enroll.

    PF Patients not currently using daytime oxygen: 29 out of 300
    PF Patients who are currently using daytime oxygen: 13 out of 20
    Primary Supporters of people using daytime oxygen: 2 out of 20
    Prescribers of oxygen: 1 out of 20 (they need 171 more people who aren't currently using oxygen)

    You participate from the comfort of your own home at no cost to you.

    1. Thanks for all of your comments here, Barbara -- and thanks for posting about Jeff's study. I will repost this for everyone.

  5. I could not find a liquid oxygen supplier in my area. I found one 35 miles away but they were not willing to deliver or let me pick up. Liquid O2 would be the most convenient source for me to do the little things that need to be done without pulling a large tank or concentrator. I was told that the reason it is not available is because insurance and Medicare reimbursements do not make it profitable.

  6. I participated in the Dr. Swigris study, and what I realized after reflecting on my tel conversation with the interviewer about my use of 02 - each of my pulmonologists has pretty much foisted the 02 amount needed issue off on the nurses or respiratory techs. In fact, when I asked one of my docs a question, he said 'Did they not address this in Pulmonary Rehab?"

    I am happy that there is a focus on the 02 therapy issue. I really agree with # 1,2 and 3. I am not knowledgeable about #4, and it seems to me that there is NOW- #5 more research out there. Is IPF the new mystery disease that will get attention? Pretty much like AIDS did in the 80's?

  7. There is a bit of a disconnect there in that I don't expect the pulmonologist to be doing the PFTs or the 6MWT or whatever test is required to determine the oxygen flow required but they do write the prescription. Fortunately it was my respiratory therapist that wrote the recommendation and the doctor wrote the prescription...BUT the prescription still needs to be titrated and if not already using one, the patient needs a monitor device (finger pulse oximeter) just like a diabetic does and to receive training/instruction on how to monitor their oxygen needs.

  8. Based on the 2011 joint thoracic society guidelines I was diagnosed with IPF in the USA a year and a half ago at age 70 by HRCT scan without the need for surgical lung biopsy. At the time of diagnosis I required no supplemental oxygen. Currently I require about 5 liters/minute by nasal prongs while sleeping or sitting in a chair to keep 02 sats in the mid 90’s. An oxygen concentrator ordered by my pulmonologist which has the capability of 10 liters/minute flow currently meets this need. I was originally prescribed a concentrator with 5 liter/minute flow but as my 02 needs increased - particularly with exertion - I requested and received the more powerful machine. But eventually 10 liters/minute also became inadequate to prevent significant air hunger and desaturation into the mid 80’s with exertion and I requested a second 10 l/m 02 concentrator. Apparently Medicare will pay for only one concentrator so the solution recommended to me was that I be switched to liquid oxygen which Medicare apparently would pay for. Instead I decided to purchase another 10l/m 02 concentrator myself and since then I have purchased a third such concentrator. I now have 20 liters/minute flow available to me for exertion which I use orally by tube, titrating it as needed through 50’ hoses while also maintaining my 5 liter/minute nasal prongs. I also am taking Pirfenex 2400 mg/day. This is a tough disease to fight as we all know, and how long any of us have is ??? All we can do is to give it our best shot! Good luck to all of you!

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