Advocating for Others with PF (The Full Interview with Dr. Noah Greenspan)

To conclude this Special Education Week at PF NOW!, we interviewed a renowned advocate for people with PF: Dr. Noah Greenspan. See highlights from the interview here, or keep reading to see the complete conversation.

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PF NOW!: Please introduce yourself & tell us about the work you do.

Dr. Greenspan: My name is Dr. Noah Greenspan, and I am a cardio-pulmonary physical therapist. 

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PF NOW!: You lead an active online community focused on pulmonary wellness. How frequently do you see posts from people with or impacted by PF? 

Dr. Greenspan: About 5-10 times a day. I see it online a lot… and I talk about Pulmonary Fibrosis a lot. It’s one of my real interests in what I do. I started treating PF patients in 1995. I was working at NYU Medical Center (Rusk Institute) and there really wasn’t rehab for PF patients. First of all, there was no treatment. There was no OFEV or Esbriet, so a lot of doctors didn’t even go through the complete diagnostic process because there’s no treatment anyway. 

A lot of times those patients would come in and they would look terrible, they would look scary, they would be scared, and very often the clinicians were scared (because the patients would come in and be breathing at 40 breaths per minute, and their oxygen saturation was barely 90 percent sitting in a wheelchair, and then they’d stand up and it’d be 85 percent, and then they’d take 3 steps and it would be 75 percent). 

What happened with a lot of these patients was they were told, “You’re too sick for rehab.” But, you know, what does that really mean? It means you go home and essentially wait to die. I happened to have a mentor at that time named Dr. Horacio Faneda and it constantly hurt our hearts to have to say to people, “You can’t do rehab.” So we said, let’s figure something out – a way to do this.

At that time, pulmonary rehab was very slow going. The focus was on low intensity, slow duration (trying to increase people’s endurance). Up until that point, people weren’t using too many adjuncts as far as oxygen use goes. But we started giving people as much oxygen as they need to remain saturated. 

What a lot of rehab programs will do is if your saturation drops below 90, they’ll either have you lower your intensity or stop and rest (which to me kind of defeats the purpose of rehab, especially when you’re there since you have the ability to give a lot of oxygen). And people were really only getting rehab with cannulas. A nasal cannula is really only effective up to about 6 liters (and I’m not talking about the high flow cannulas; I never use high flow cannulas). 

When somebody needs more than 6 liters, I switch them over to a non-rebreather mask. And what we started doing was giving people up to 100 percent oxygen – so we were giving them 15 and sometimes even more, even up to 25 liters per minute of oxygen by mask. And we were able to keep people saturated, and to start exercising them, and seeing similar progress as we did with other people who didn’t have the same degree of desaturation. And over time, these patients were able to do much more, and we were able to push them in the same way that we were able to push other cardio-pulmonary rehab patients. 

It was just a matter of really keeping them saturated, and teaching them to breathe better of course. You know, getting them to slow their breathing down. But really trying to tinker. We have the basics of our program, but we have to tinker sometimes. For 90 percent of the people, what we do every day is gonna work. And then there’s always going to be that group of people who are not going to fall into the every day. We have to twist and turn and try to find multiple different ways of being successful. I like to call it “Malcolm X Physical Therapy” – which is like, “By any means necessary.” And whatever that takes. Sometimes we have to have 2 or 3 people working with 1 patient just to make sure they don’t fall down. But that’s what it takes. 

It’s prepared us very well because my specialties are cardiovascular disease, respiratory disease, and complex medical conditions (so patients either with very complex cardiopulmonary conditions or multiple medical conditions). Essentially the people who have been told, “You know I tried everything and nothing works.” That’s often when I get them. What a lot of people consider to be the end of the line is what my team considers to be the starting line.  

That philosophy has helped us significantly during COVID-19, where it’s complex medical conditions times 100. 

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PF NOW!: Do you have any tips to help patients advocate for themselves, especially if they’ve reached that point of being told, “This is the end of the line for you”?

Dr. Greenspan: First of all, I hate when people tell people, “Oh you have this long to live.” With PF, that’s a very common theme. People get diagnosed with PF, they go home, they look on the internet, and they find out, “I have 3-5 years to live.” It could say from diagnosis or it could say from symptom onset, but we know that so many patients with PF and interstitial lung disease are misdiagnosed – often multiple times – before actually getting the right diagnosis. 

That has gotten substantially better over the years, thankfully, as people raise their awareness. But in terms of being an advocate, I think it’s a balance. There’s a delicate balance between the role of the healthcare team in taking care of the patient, and the role of the patient in really directing the healthcare team. It’s going to be different for each patient. But education is key – so getting yourself up to speed.

In today’s Twitter, Instagram, Google, Facebook world that we live in, everybody’s chatting (even if they don’t know what they’re talking about). Patients will go to Facebook and say, “I just got this medication. Who thinks I should take it?” But it’s really important that people educate themselves. 

I started my webinars many years ago. We were actually some of the first people (if not the first) doing these things for cardio-pulmonary patients. There was no Zoom at that point. It was me in a room by myself with one sound tech, and there was no video. It was like radio. We didn’t know if anybody was listening half the time… But I’d talk for an hour and half, and luckily we have it all recorded. 

The thing is, patients have really upped the game in terms of educating themselves. I would love to think that I had at least a small part in that, in educating the community. I try to speak in plain English all the time. I don’t try to speak in medical terms; I try to say things in ways that everybody can understand. And when I’m teaching patients, I’m also teaching clinicians how to teach patients and how to talk to patients. 

Very often we hear stuff that doesn’t make sense to us. Doctors start talking in medicalese and it gets lost on the patient. It doesn’t mean that I don’t know the medical terms, but patients don’t need to know that stuff. And I’m not minimizing it, but I’m saying that you want to speak to patients in a way that will resonate with them. Patients get a diagnosis of PF and they don’t know what it is. It’s not like emphysema or asthma, where everybody’s heard of it before. 

I once asked Robert Kaner,, who is one of the top interstitial lung disease doctors there is, “Why is this so complex?” He said, “It’s because the diseases are complex – they don’t make sense, the names don’t make sense, and they’re complicated.” Most people don’t even understand what the interstitium of the lungs are. We understand asthma as an airway disease, we understand that emphysema and chronic bronchitis are airway diseases, but most people have never heard of interstitial lung disease. 

It’s really crucial that people get the right diagnosis; that’s first and foremost. As we know, some of the medications for some of the interstitial lung diseases are 1) not only not helpful but 2) are also detrimental to other interstitial lung diseases. That’s really important for patients to get educated on, and to not believe everything that they see on the internet. 

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PF NOW!: Would your advice for friends, family members, or caregivers of people with PF be any different? 

Dr. Greenspan: It really depends; every situation is going to be different. Part of the problem is that we often see things in black and white. Someone will go and post something on Facebook that says, “Hey, I have an itchy toe” and then 25 people will tell them what that itchy toe is related to, and how they should treat it. Now nevermind the fact that this person works at the deli counter – and no disrespect, we need people working at the deli counter, but I don’t go to my doctor and ask what my car needs or how to fix my brakes. 

It’s challenging with PF and interstitial lung disease, because it’s a scary disease. On so many levels. People are told you have 3-5 years to live, but that was data from before there were any treatments. There’s only a couple treatments now, and some of the treatments make people feel bad. They’re not comfortable – they have a lot of side effects. 

I think it’s tough for a patient to get used to taking a treatment that comes with a lot of side effects and doesn’t actually make them feel better. For example, if you have a hip that’s killing you, you might be willing to put up with a little nausea if your hip didn’t hurt anymore… but the PF drugs that we have right now are meant to prevent worsening. It’s not necessarily meant to make you better, or to improve lung function per se. 

That’s where all of the lifestyle issues come in. Where things like exercise, nutrition, managing your stress/anxiety/depression, and managing the prevention of infection. Those things right there are the basis of my book Ultimate Pulmonary Wellness. It’s the basic philosophy of my care. 

Everybody wants a quick fix. Everybody wants the magic pill, or the powder, or whatever it is that will take care of things immediately. And it’s not really like that. It’s not like there is a pill, for most things. But these basics are the ones that we’ve found to be the most effective. And the most effective are really what I call medical, which is 1) having the right doctor, 2) getting the right diagnosis, 3) taking the right medications, 4) and taking them properly. 

But that’s only 20% of it, right? We live in a society where it’s 90% medication- and intervention-driven. Your doctor will give you all this medicine, and then on the way out they’ll be like, “Oh yeah, try to get a bit more exercise.” The amount of time that you spend talking about it in the treatment or in the consultation is going to tell you how important you think it is. If you spend 90% of the time talking about symptoms, medications, and diagnostic tests and procedures… but then you spend 1% of the time talking about exercise, nutrition, and these other things – if at all – then the patients don’t hear where they can really make the change. 

If you can get an early diagnosis, if you can halt or slow down the progression of the disease through medication, and then you do the lifestyle things like exercise and nutrition

(and pulmonary nutrition is different than let’s say cardiovascular nutrition or obesity nutrition or diabetic nutrition). It’s got its own set of rules that are often different than these other conditions. You might say, hey, you want a high carb and low-fat diet – but that’s a terrible idea for a pulmonary patient. They want almost the opposite of that. So nutrition’s important.

Also, managing stress, anxiety, and depression. There are few things in life that are as anxiety-provoking as not being able to breathe. Think about it. What could it be? Getting chased by a bear, a shark, or something like that… But it’s very anxiety-provoking, and then we have this cycle where people get anxious, it makes them more short of breath, it just goes around and around and around. So that’s really important. It’s also stressful managing all the things you have to do for your disease, and then it’s depressing as you start to lose certain aspects of your life. I’ve heard people describe it as, “My life has become very small.” 

The thing is that when people are diagnosed with a chronic illness, especially one that affects so many areas of your life, they often become these black-and-white, monochromatic versions of their former selves that are completely devoid of any type of art, music, fashion, style. Anything like that. Their lives become about going to the doctor, get the prescription, pick up the prescription, take the medication, eat their dinner, go to sleep, get up and do it the next day. That’s not the philosophy that I take. We don’t live to rehab or to take care of our disease – rather, we rehab to live our lives. 

I know that your question was “Would I give the same advice to family and friends,” but it depends. Not everybody wants to get involved. As sad as that is, depending on who you are, you’re going to have varying levels of support. Some people are managing this on their own. Some people don’t have friends or family that are able to assist them with this, whereas other people have a lot of people there. That really depends upon the individual dynamics of that patient’s family and support system. 

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PF NOW!: Can you share more about the programs that you’ve created to support people with PF and interstitial lung diseases?

Dr. Greenspan: This is the Pulmonary Wellness Foundation website. We have a lot that is available to support people. 

1. You have access to my book, Ultimate Pulmonary Wellness. You can read it for free, and it’s also available in Spanish. It talks all about these things: shortness of breath, the respiratory system, better breathing techniques, activities of daily living, pulmonary wellness, medications, exercise, nutrition, all these things. We are about to release a new version that will be specifically for patients with PF and interstitial lung disease, and it’s actually written by a group of PF patients. We hope to have it out by the holidays.
2. We have webinars here. There’s a whole bunch of different things about different topics here and on YouTube. There are hundreds of hours of free webinars. On our Youtube channel we have a “Top 25,” and one of them is a talk that I did in Baylor, Texas all about PF. It was basically about every single thing you need to know about living well with a respiratory disease. I have a bunch of live talks that I’ve done in all different spots. 
3. The other things we have are podcasts, a Facebook group, and a bootcamp. Bootcamp is an online pulmonary rehab program. Only about 2 percent of people who need rehab actually have access to rehab, and it’s even less depending upon where you live. I live in New York City, and it’s even hard to find rehab here. So if you’re in a small town, getting a diagnosis is often difficult, getting the right care is difficult, and getting rehab is difficult. So we created this program. Essentially it’s a 42-day program, and each day has 4 different things as part of it: 
   1. The first one is called “Our Daily Breath” and that is going to be any topic that I want to talk about. 
   2. “Thoughts and Motivations” which are different thoughts and motivations to keep people motivated and moving forward, and not get too inside their heads. 
   3. “BBFS” which is Breathing, Balance, Flexibility, and Strength training.
   4. Then we have these “Walkabouts.” Those are virtual walks that we shot all over the world. We start at 4 minutes of walking, and within this 42 day program people work their way up to 30 minutes. It works for just about everybody. (Note that Dr. Greenspan then played a clip to give us a preview of the content, with inspirational sayings like, “The best time to plant a tree is 20 years ago. The second best time is today.” and “It is ok to not be strong all the time, to not be happy all the time, to be weak at times. We all have those moments. It’s not honoring our weakness – it’s honoring our humanity.”) 

I try to keep people’s minds off their disease. You have to know something about it, to understand how to take care of yourself and plants the seeds for a fertile garden… but who wants to think about their disease all day and every day? Unfortunately that’s what winds up happening. 

There’s very few things you can do to a patient that are worse than taking away their hope. That happens a lot of times, where you hear, “Oh I have 3-5 years since the onset of symptoms, but I’ve been trying to get a diagnosis for 2.5 years. Does that mean I have 2.5 years left?” I hate when I hear somebody tell somebody else how long they have to live. 

I had a dog who had bladder cancer, and the vet told me that she had 3 months to live. I took her to another vet, and she lived for 3 more years. But having that seed planted in my head just irritated and irritated, like an oyster. Except it just adds to your stress and anxiety instead of giving you a pearl. 

It’s one of those things where I try to just keep people focused on who they are, and to remind them that they are not their disease. And to encourage them to refind, rediscover, or reinvent the things that make them uniquely who they are. 

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The interview concludes with our staff discussing advocacy efforts to help people with symptoms from COVID-19 long haul. Dr. Greenspan’s movie premiered last week at www.longhaul.movie, and our research was published last month at www.mdpi.com/2305-6320/8/9/47. Please comment below to thank Dr. Greenspan for all the advocacy that he does!