Living Well with Pulmonary Fibrosis? Yes We Can! (A Rehab Specialist’s Advice)

Living Well with Pulmonary Fibrosis? Yes We Can! (A Rehab Specialist’s Advice)

 Hello, World!

For those of you who don’t know me, my name is Noah Greenspan. I am the founder and program director of the Pulmonary Wellness & Rehabilitation Center in New York City. I am also the founder of the Ultimate Pulmonary Wellness Webinar Series, the Ultimate Pulmonary Wellness Facebook Group, the Pulmonary Wellness Research and Education Society, author of Ultimate Pulmonary Wellness, and creator of Pulmonary Wellness Online, our newest online pulmonary rehabilitation program.

Are you starting to sense a theme?

That is because nothing in the world gives me greater satisfaction than helping people with respiratory disease breathe better, feel well instead of sick, and truly live their best lives instead of watching life pass them by from the sidelines. A big part of that involves dispelling myths and misinformation (of which there is a lot), an unfortunate byproduct of today’s fast-paced healthcare environment.

While information of varying quality regarding these subjects is available to those who are resourceful, finding this information and translating it into something that is both practical and useful is challenging, if not impossible. In addition, for every piece of solid information, there are infinitely more myths, misunderstandings, half-truths, and legends that are pervasive in the Twittering, Facebook age of Dr. Google’s Instagram Snapchat.

That’s why I am thrilled to be joining the ranks of Pulmonary Fibrosis News, to help remedy that exact situation and to help clear up any confusion you may have regarding your disease including the medical, behavioral, and lifestyle issues behind not just living, but living well and thriving, in spite of your pulmonary condition.

The Pulmonary Fibrosis News forums are a place to connect with other patients, share tips and talk about the latest research. Check them out today!

Over the next several months, I will share many of these principles with you. The good news is that the overwhelming majority of the information has come directly from the source, themselves: my patients. They are the true experts in the field, and have experienced many of the same struggles as you and found ways to overcome them, even when it seemed like all odds were against them, and you can, too. It is my hope that by sharing our collective knowledge and experience, you, too, will be able to experience your own little slice of “Ultimate Pulmonary Wellness.”

When someone is diagnosed with a chronic illness, particularly one like pulmonary fibrosis (PF), that violates so many boundaries in people’s lives; they are all too often relegated to a unifocal, monochromatic, barely recognizable version of their former selves. They are now the poor patient, sick, or even worse, the victim. To the medical community, they can become “the PF patient in room 2.” Friends and family often don’t know what to do or how they can best help, while at the same time, being kind to themselves as they, too, go through these traumatic adaptations in their own lives.

Patients’ lives often become very functional in nature, made up of doctor’s visits, pharmacy runs, and a daily struggle for breath and survival; and often completely devoid of any forms of aesthetic beauty like art, music, fashion, or fun, in other words, living. This, too, must change and is also one of the key themes behind Ultimate Pulmonary Wellness, where our mantras include things like: “yes we can,” “inspired by LIFE,” and “we rehab to live, not live to rehab.”

I first started treating PF patients in 1995 at a time when 99.9 percent of these patients were being rejected from pulmonary rehabilitation programs because they were “too sick for rehab.” These patients were extremely ill, often barely able to breathe, with oxygen saturations in the low 90s or even 80s at rest and plummeting into the 70s (or worse) with even minimal exertion.

Unfortunately, what “too sick for rehab” loosely translated into was a “lifeboat” situation, in which patients were essentially told to go home and wait to die. Thankfully, this situation was unacceptable to my mentor, Horacio Pineda, MD, and that is when we first started experimenting with various exercise protocols and creative methods of oxygen delivery. After all, under the circumstances, did we really have that much to lose?

But guess what happened? By providing adequate supplemental oxygen (often 100 percent via a non-rebreather mask) and employing the right exercise protocols, patients actually demonstrated improvement. They became less short of breath. They could tolerate more exercise and higher levels of activity; and their oxygen saturation improved over time (both at rest and during exertion).

Over the past 27 years, we have come to believe that there are five core pulmonary wellness and lifestyle interventions that carry substantially more weight and have a significantly greater impact than all others. These five areas include: medical — having the right healthcare team, taking the right medications, and taking them properly; pulmonary-specific exercise; pulmonary-specific nutrition; stress, anxiety, and depression management; and prevention of infection.

Also of importance is comprehensive patient and caregiver education. We have found that all of these components work synergistically to support the PF family’s best life. In each of these areas, there are specifics to the PF/interstitial lung disease patient that are simply not common knowledge, even among many top “experts.”

One of the driving principles behind Pulmonary Wellness has always been that an educated patient is our greatest ally in the fight against pulmonary disease, and lack of information and understanding on the part of patients, family members, and even clinicians poses one of the greatest obstacles to patients’ ability to achieve their highest level of pulmonary health and wellness.

I must once again acknowledge my many patients, who are by far the driving force behind who I am as a clinician and who I strive to be as a human being. It is through these symbiotic relationships with the very people who come to me for help — allowing me to participate in their lives and getting to know them through their disease — that I am constantly learning about myself and continuing to grow, both professionally and personally.

In sharing our collective experience with you, I hope to give you a direct link to the greatest source of information about your disease, in an effort to help you avoid some of the same pitfalls that others before you have had to deal with. One thing that I can tell you for certain is that even more gratifying than trial and error is trial and success, especially when it comes to my patients.

YES WE CAN!

***

Dr. Noah Greenspan

Dr. Noah Greenspan, DPT, CCS, EMT-B, is a board-certified Clinical Specialist in Cardiovascular and Pulmonary Physical Therapy, with more than 25 years of cardiopulmonary physical therapy and rehabilitation experience. His book “Ultimate Pulmonary Wellness” — a continuing source of pride — was published in 2017, and he has made it available for all to read online free-of-charge using that link or by going to the center’s website, www.PulmonaryWellness.com. His “Ultimate Pulmonary Wellness” Lecture & Webinar Series is also open to attend free-of-charge on the website.

Dr. Greenspan founded the Pulmonary Wellness & Rehabilitation Center, a Manhattan-based physical therapy practice specializing in the care of patients with cardiovascular and pulmonary diseases, in 1998. Under his direction, the Center has conducted over 100,000 exercise sessions and has been named “Best of the United States” in the area of cardiovascular and pulmonary physical therapy.

 

15 comments

  1. Lorena McManus says:

    I really relate Noah, to life becoming all about the disease and all things medical. The absence of art and beauty and all things that give joy in life has slowly absenced themselves from my life but I am encouraged by your words and programs. It can be changed!

    • Noah Greenspan says:

      The great UCLA basketball head coach John Wooden said: “Don’t let the things you can’t do interfere with the things that you can.” One of the most important life principles, particularly in the context of living with a chronic illness, and particularly, particularly in the context of LIVING WELL with a chronic illness.

  2. Carole Anne Coffey says:

    I am living well with pulmonary fibrosis. I have had to alter activities in my life like exchanged fast paced aerobics for T’ai Chi Chih. I paint, take music lessons, joined the Better Breathing Choir, go out for walks and dining with friends. I’m still living my life to the fullest. I’m very grateful for every day.

  3. Catherine Daykin says:

    You mentioned the low sats mine go much lower than those, when I have a shower mine go much lower they go between 49 and 60 and that’s with 6 liters of oxygen l class myself if my sats go to the late 80s and that is resting all the time, would appreciate some recommendations.

    • Noah Greenspan says:

      Hi, Catherine: a couple of comments: 1. When are you measuring your sats? If it is while you are actually in the shower, as in “wet,” there is a good chance that you are not getting an accurate reading but your point is well-taken. 2. What kind of device are you using to deliver oxygen (tanks, stationary concentrator, POC?) and what kind of interface (nasal cannula, mask)? If you are using a portable oxygen concentrator, keep in mind that the numbers indicated do not indicate liters per minute, rather a company setting. If you are using pulsed dose, you will need continuous. If you are using a plug-in concentrator and a nasal cannula, I would immediately suggest using a non-rebreather mask instead of the cannula. Whereas many people will argue that a mask cannot be used on less than 10 liters per minute, this is simply not the case and this change should immediately make a big difference in your saturation. If a plug-in concentrator and mask do not help (which the will substantially but maybe not enough), I would recommend getting a more powerful concentrator. There are plug-in units that go up to 10 lpm OR use a tank for showering which is one of the toughest activities we do for a number of different reasons. I have more suggestions for showering and bathing in the daily activity chapter of my book Ultimate Pulmonary Wellness which you can read here: https://www.pulmonarywellness.com/book/chapter-4-daily-activity/

  4. Steven Dragoo says:

    Hello doctor – I use the US veteran’s system. They had me at pulmonary PT for 5 months and it helped a lot so I joined a local gym, it’s helping too. But because there isn’t any real medicative relief a number of members here are looking at alternative therapies.

    I have discovered significant improvement with a good B vitamin complex, a great enzyme – serrapeptase and recently added class IV laser treatments. I feel better today than I have in many months (no placebo effect).

    There are several clinical trials going on around the world that hold promise but with this deadly disease, we all need to be proactive because we cannot wait. I am most grateful for the many dedicated people that joining this forum as it will help us all deal more effectively with IPF.

    Best to you,
    Steve

  5. Robin Ives says:

    You are our hero, Noah – I believe all you have done is extending my husband’s life!! I am so thrilled that you are now writing for Pulmonary Fibrosis News!! We look forward to each and every article where you share your wisdom and experience. George & Robin Ives

  6. Denis Ryan says:

    Hi, I have just been diagnosed with IPF.
    I have been asked by my Consultant to decide between 2 Drugs. One is called “OFEV” (Nintedanib) and the other is called “Esbriet” (Perfenidone). He says it depends on the side- effects of each drug for me to decide on one of them. Any suggestions would be most grateful.

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