2 posts tagged “oxygen”

“No oxygen.” PatientsLikeMe member Lori shares about life after surviving idiopathic pulmonary fibrosis

Posted August 3rd, 2014 by

It’s crazy to think how fast things can happen. The last time we talked with Lori, she was telling us about life on the lung transplant list and playing what she called “the waiting waltz.” And now – everything has changed. Just two weeks after we posted her third interview on the PatientsLikeMe blog in mid April, Lori got the call – they had a set of lungs for her. We caught up with Lori one more time, and fifteen weeks post transplant, she’s nothing but smiles. Check out what she had to share and don’t forget to follow Lori on her own blog called Reality Gasps. (Thank you Lori for being so open about your experiences with IPF!)

 

 

What was your reaction when you got ‘the call?’ You mention a whole range of emotions on your blog.

The call took me completely by surprise. I’d been admitted to the hospital a week earlier because we just couldn’t meet my oxygen needs at home any more. I was literally 10-minutes away from starting a procedure to suppress my antibodies (to help increase my somewhat slim chances of finding a match) when the nurse walked in and told me they might have lungs for me.  Actually she said they “might, might, might, might, might” have lungs – normally they wouldn’t have contacted me that early in the process, but they had to cancel my procedure just in case. I felt an initial jolt of adrenalin and couldn’t help busting out in a huge grin. I quickly tamped down my euphoria, though. There was still a long way to go and anything could happen.

An hour later when I heard we were moving forward, I burst into tears. A year’s worth of pent up emotion poured out through those wracking sobs. I couldn’t believe my miracle was so close. But wrapped up in my joy was guilt that my chance to live was coming through the death of another.

Until the moment they put me under, my emotions continued to cycle from near manic joy, to fear that the lungs wouldn’t be right, to anguish for my donor and his family. Everyone says it’s a roller coaster, but like parenthood, you can’t really understand what that means until you live it.

What happens between getting the call and going into surgery?

Since I was already in the hospital, there was no mad dash for me. When the team decided to move forward, I was sent down for pre-surgery testing — a chest x-ray and blood work. Then we waited, and waited for a good 12 hours. Finally I was sent down to pre-op at 2:00 AM to get ready for surgery at 3:00. They inserted an arterial line and an IV. And they checked and rechecked my drug allergies and medical history. I was the only person in pre-op, but I still had to recite my name and birth date for everyone who came by!

My surgeon arrived and told me he’d heard about my surgery early enough to make sure he got a good night’s sleep with plenty of time for breakfast. I’d brought a disposable camera to get pictures during surgery, so he talked me through his typical “shot list”. I couldn’t wait to see those beautiful new pink lungs!

Just before I was to head to the OR, the doc got a call from the retrieval team that we were delayed for an hour. He said this was very common — they had to wait for all of the teams to arrive before they could start. We were delayed twice more as teams continued to fly in. When I finally made it to the operating room, I was surrounded by people and equipment. They explained each step as they got me situated on the table, and then the anesthesiologist placed a big mask over my face. Thankfully, I remember nothing until they removed the breathing tube three days later.

Fifteen weeks post transplant – how’s recovery and rehab going?

Full recovery takes about a year, but I am astonished at how far I’ve come in just three months. I went into surgery pretty weak because I didn’t have the energy (or the breath) to move much.  A lot of people told me to keep my legs as strong as possible and I quickly learned why. Post-surgery, I was on high-dose prednisone, which is very hard on the quadriceps – my thighs felt like jelly. Most people are up and walking shortly after their breathing tube is removed. I ended up needing a trach, so it was about a week before I took my first steps. I walked nearly 200 feet that first day and increased my distance and strength every time I hit the halls.

The day after I left the hospital, I returned for my first out-patient rehab appointment. I walked 15 minutes on the treadmill at a smokin’ 0.5 mph. Within a few days, I was up to 30 minutes and started to increase my speed. Now I’m walking two miles a day around the neighborhood and am working hard toward a 15-minute mile. It’s the hardest work I’ve ever done, but it is so worth it!

The one thing that really took me by surprise was the mental part of rehab. Before transplant, my body worked very hard to breath.  Shortness of breath meant my body needed more oxygen. But after transplant, neither one of those was true anymore. It was difficult to accept that I didn’t need to consciously breathe – my lungs could take care of that on their own.  After a week, I would periodically “forget” to breathe and be surprised to discover my lungs were working just fine. When I was walking laps around the halls, I would periodically get short of breath and start to panic – there was no valve to turn up my O2!  The pulse oximeter showed my sats were well into the 90s. I was short of breath because my body was weak, not my lungs. Thankfully, breathing is once again second nature!

What comes to mind when you think back on everything you’ve gone through – diagnosis to transplant?

I went through the same fear that most people do when they are diagnosed with IPF. The prognosis is pretty bleak: no treatment, no cure, progressive. But I decided early on that I was going to live my life as normally as possible – and do everything I could to prepare myself ready for transplant.

I continued to work for nine months, using oxygen at the office. But after two pneumonias, it was clear that my body was too fragile for the daily grind.  Without work distracting me, priorities and perspectives shifted. Everything suddenly had a sense of urgency. There might not be time “some day” to get back in touch with that friend, or tell my brothers how much they really meant to me. I had to let go of the things that had consumed me, like worry and regret, so I would have time and energy to do work on my life “to do” list.

I worried that after transplant, when things returned to normal, I would soon forget the lessons I’d learned. This whole experience has been a journey toward gratitude, and I realize now I will never be the person I was before – physically, emotionally or spiritually. Every morning I give thanks for my first waking breath. Throughout the day, I find the most delightful surprises – like watching a mama squirrel move her babies to a safer home. And sometimes I just stop and marvel at the air passing in and out of my lungs, lungs that once breathed in someone else’s chest. I spent three years quietly saying goodbye to all the things and people I loved. Now I get to spend the rest of my life saying “hello” again!

Additional comments from Lori

We just returned from our celebration trip to Sanibel Island, one of my favorite places in the world. For the first time since my diagnosis, I was able to walk the beach without tanks in tow. The image of Sanibel’s shell-strewn beaches and the memory of that rich briny air kept me pushing forward as first I struggled to breathe in ICU, and then sweated my way through PT and rehab.

At least once a day while we were there, my husband whispered to me “No oxygen”. It felt like a dream, a wonderful, amazing dream. We’ve been going to Sanibel for 25 years. It’s a huge part of our family tradition, and making it back there was an important milestone for me. A plaque on the wall at our beach condo read “If you’re lucky enough to be at the beach, you’re lucky enough.” That’s pretty much the way I feel about everything now!


“We can and will do better” – An interview on pulmonary fibrosis with Dr. Jeff Swigris

Posted January 3rd, 2014 by

Just this past month, a few members of the PatientsLikeMe Team (Arianne, Dave and Rishi) traveled to La Jolla, CA for the Pulmonary Fibrosis Foundation Summit. It was quite the mixed crowd (with patients, clinicians and researchers), and it gave them (and everyone at PatientsLikeMe) a chance to learn more about pulmonary fibrosis (PF) from different points of view. Thank you to everyone who stopped by our exhibit booth and for sharing your experiences.

While they were there, the team had the chance to interview Dr. Jeff Swigris. He’s an Associate Professor of Medicine at National Jewish Health in Denver and has been working with PF patients for almost two decades. He’s published over 65 articles on interstitial lung disease (ILD), most on IPF, and he has a special interest in Patient Reported Outcomes (PROs) and patients’ Quality of Life (QOL). Dr. Swigris is also the Director of the Participation Program for Pulmonary Fibrosis (P3F), an online resource for patients, caregivers or anyone interested in learning more about PF. On the P3F website, patients and caregivers can also find out about studies they can currently enroll in. Right now, the P3F is currently enrolling for a study that aims to examine the effects of supplemental oxygen on patients with PF and their caregivers.

Why do PROs matter? And what questions are Dr. Swigris and his team at the P3F trying to answer? Find that and more in our interview.

Can you tell us a little about yourself and what led you to focus your research on pulmonary fibrosis?

Originally from Illinois, I went to med school and completed much of my education in Ohio before pursuing subspecialty training in Pulmonary and Critical Care Medicine in California. What led me to focus on PF? Like many pulmonologists, at the start, my interest was in the critical care medicine aspect of the profession, because it’s so immediate: there’s an urgent medical need that requires an instant intervention, and you can see the results of your decisions right away. That pace/action drew me to the field, but as a resident, in the late 1990s, I did a pulmonary pathology rotation. This was around the time we were uncovering new and exciting things about interstitial lung disease (ILD) in general and PF in particular. The community discovered that, upon careful re-inspection, certain ILD patients that had been labeled with idiopathic pulmonary fibrosis (IPF) lived longer than expected, and their longer survival was driven largely by what was seen under the microscope—in lung biopsy specimens from these patients. When I landed at Stanford, I didn’t want to focus on pathology, I wanted to focus on ILD patients. There wasn’t a structured ILD program at Stanford when I first arrived, but IPF researcher and one of my mentors, Glenn Rosen, offered me the chance to help him start one. I realized no one in the ILD community was focused on ILD patient experiences and their quality of life (QOL). I wanted to focus on ILD patients as people and really understand their experiences (probably influenced by my training in osteopathic medicine, which offered me the perspective of looking at patients through a holistic lens). It was a gap that needed to be filled. I had found my niche. That’s how I got started focusing on the patient experience, patient reported outcomes (PROs) and QOL in PF.

For those who might not know about it yet, what’s the P3F all about?

The goal of the P3F is to create a safe, trustworthy online environment and informational resource for patients and caregivers and to provide a platform for conducting research that matters to patients with PF. In the current project, we’re trying to determine whether and how supplemental oxygen affects (benefits) patients with PF. We’re funded by PCORI, which is an amazing research organization. As mandated by PCORI, we’re getting everyone involved in this research: patients, caregivers, even oxygen prescribers. Above all, this project gives me a chance to work with very engaged patients, some of who are actually members of my research team.

Knowing what questions to ask patients, the when, how and why of the thing is really important. The first thing we needed to do for this project was to figure out what question needed to be asked—what question do patients with PF want to know about? We started the investigation by going to the experts—the patient- and their caregiver-members of our PF support group. I noticed all my PF patients ask about oxygen, and oxygen is a major topic at our support group meetings. My perception is that oxygen is generally perceived as a “bad” thing because it’s a marker/milestone that the disease is severe and progressing. When supplemental oxygen comes into the home, it affects the entire home environment and everyone there, particularly the patient, but also the caregiver. There’s a lot of equipment and planning involved, as patients know, and using oxygen becomes “a daily grind.” Supplemental oxygen can be a constant reminder the disease is getting worse, but the reality is we know very little about the therapeutic effects of oxygen for PF patients (and the majority of the available data has been mostly borrowed from COPD studies). Some questions we want to know about oxygen use are:

  • Do patients who use it feel better?
  • Does using oxygen allow people to be more active? Does this change the longer patients use oxygen?
  • Are people who use supplemental oxygen more or less likely to leave the home? Does this change the longer patients use oxygen?
  • Do patients who use it live longer?
  • Does oxygen use prevent pulmonary hypertension?
  • What are the downsides to using oxygen (eg, public stigma)?

I want to include patients in the process of filling this big gap in knowledge (about supplemental oxygen), and I needed patients to help us shape the goals of the study. (Sounds pretty in line with PatientsLikeMe!)

On PatientsLikeMe, the pulmonary fibrosis community has their own patient reported outcome measure (PRO) we call the PF Severity Score. Can you tell us a little about your own interests in PROs and how you see them being used in healthcare?

I believe the patients’ perspectives are incredibly important, and they will be increasingly used as endpoints in therapeutic trials. Improving lung function is one thing, but is that all we can do? NO! We want to allow patients to feel better and do more. Improved patient QOL should be a major goal, maybe the most important goal. The challenge is the rigorous development of PROs, so the clinical and research community can be confident the PRO is sound.

How do you think online communities like PatientsLikeMe can impact someone living with a rare lung condition?

For some patients, particularly those with rare diseases, it may be difficult or impossible to find other patients with the same illness. Even for common diseases, there is such comfort in knowing you’re not alone (online or in person, someone knows what you’re going through). Knowing you’re not alone gives you confidence, a sense of control, to persevere and keep living.

As an expert in the field, what’s ahead for pulmonary fibrosis research and quality of life advancements? (Any studies you’d want people to know about?)

As mentioned above, one of the big gaps in understanding of ILD is the benefits and drawbacks of supplemental oxygen. That’s what the current study on the P3F is focused on. People can find out more information on that here. We need disease-specific PROs that have been rigorously developed in the targeted patients. Continuing to borrow data from other diseases won’t work for the PF community in the long term. I’m definitely interested in learning more about how I might partner with PatientsLikeMe and use the Open Research Exchange to develop these PROs. If we all find a way to work together, we can and will do better for patients.