A Couple Articles About Life With New Lungs

I have been fortunate to have two articles published this month. It is pretty awesome that such varied communities are intersted in helping to spread awareness about Idiopathic Pulmonary Fibrosis and solid organ transplantation.

The first article is a blog post published by the Pink Socks Tribe.  I first mentioned Nick and Pink Socks when talking about my experiences at MedicineX.

The post talked about my Life With New Lungs and I tried to convey in this post is the importance of life's moments. It is the moments that shape who we are, and it is the moments we share with others that will be remembered long after we are gone. One thing I've learned through my experience at being so close to death is to really embrace those special moments.  I really kind of enjoy the pink lungs Nick and Company came up with to go with the post.

The next article was published by the Stanford Medicine Scope Blog. The gift of life: Living with new lungs talks a bit more about living with new lungs and becoming resilient.

Head on over and read the articles, let me know what you think.

The Primal Transplant In The News on the sidebar links to more interviews and articles that I've been involved with over the years.

Healthline - Tips from the IPF Community: What We Want You to Know

Idiopathic Pulmonary Fibrosis (IPF) is growing thanks to support of foundations like the Pulmonary Fibrosis Foundation, patient groups such as Inspire & PatientsLikeMe, and the 'Big Pharma' companies Genentech & Boehringer-Ingelheim.  I've heard a PSA on the radio and am seeing more and more articles about our disease. This is all good, and I am very happy to be seeing that we are getting this exposure. Exposure = awareness and awareness = funding and interest in research. Awareness also means the possibility of earlier diagnosis for our community.

I especially like when our voices are the focus of an article. Healthline has published one such article.

Tips from the IPF Community: What We Want You to Know

When you tell someone that you have idiopathic pulmonary fibrosis (IPF), chances are they ask, “What’s that?” Because while IPF greatly impacts you and your lifestyle, the disease only affects about 100,000 people total in the United States. 

And explaining the disease and its symptoms isn’t exactly easy either. That’s why we reached out to IPF patients to get a sense of what they’re going through and how they’re managing it all today. Read their inspiring stories here.

Head on over and read some thoughts from folks who have walked the walk.

Followed by a Photojournalist

Early Saturday Morning at MedX I received a text from our ePatient coordinator asking if I would mind if a photojournalist followed me around for a bit.  Of course I said yes and met up with Michael in the hotel lobby.  It was an interesting experience, and I really couldn't help but laugh when he asked me to pose.  One of our granddaughters is doing some modeling and I thought of how funny she would think my posing was.

Michael did make me feel comfortable, and had a very interesting story. Freelance photojournalist sounds like a very cool job, and not many have to eye to capture moments that can inspire a movement or catch a piece of history as it happens.

Here is one of the images that he caught of me:

I think he did a very good job.

More interesting that getting my pictures taken, was talking with Michael about some of his work and some iconic images that have become a part of societal genetics.

You can find more of Michael's work here.  Go ahead, click it, you'll be glad you did.

Transcending Transplant: How Dr. Sunita Mathur Helps Recipients Stay Fit

Today I was honored by being highlighted on the University of Toronto's Department of Physical Therapy website.

Transcending Transplant: How Dr. Sunita Mathur Helps Recipients Stay Fit

Here is one quote from the article:

“Transplant patients feel tremendously grateful for their new organ. In honour of their organ donor family, and this second chance at life, many are committed to living an active lifestyle. Through CAN-RESTORE, we aim to equip transplant recipients with the knowledge they need to lead healthy and active lives” explains Dr. Mathur.

Dr. Mathur is spot on with her comments.  I, along with my family, do feel a profound amount of gratitude to our donor and donor family. I cherish this gift of new lungs and a new life and I will continue to do what I can to honor what they have done for us.

CAN-RESTORE is the Canadian Network for Rehabilitation and Exercise for Solid Organ Transplant Optimal Recovery. CAN-RESTORE is an excellent resource for both healthcare professionals and transplant patients/caregivers.

What led me to find Dr. Mathur's research on exercise limitations experienced by lung transplant recipients? It was a couple of months post-transplant and I wasn't gaining strength as quickly as I thought I should.  Yes, the Team still had me on strict weight limitations, but I was still having trouble with the basics like doing a squat. I was just plain, overall, weak. I worked to maintain some semblance of strength before the procedure and now understand that I should have worked harder on major muscle groups, but still. I was weak.  So I went looking for more exercises for lung transplant patients and ended up finding this study: Exercise Limitation in Recipients of Lung Transplants published by Dr's Mathur, Reid  and Levi.

This paper explained my weakness, and with that explanation came acceptance, and a plan that matched expectations with reality.  I've gone from doing sloppy partial squats while holding onto the kitchen counter to full range of motion, in good form, squats while holding a 32 kg kettlebell.

Back then, when I was noting this study in my public journal, I finished with -

Seems I have my work cut out for me, but as they say, no hill for a climber.

I really appreciate this research, and the fact that this report was open access. So much good data that can be used by patients is hidden behind a paywall these days.  Makes finding a gem like this extra special.

More websites that have highlighted my IPF and transplant journey.

Featured on Mark's Daily Apple

Reading Mark's Daily Apple is my number one source for information on living the Primal lifestyle and a great place to find inspiration to keep on keeping on.  Every Friday Mark highlights a Primal Success Story and this past week that story was about yours truly.

He used the title of the blog as the title of the post - The Primal Transplant: A Story of Living with New Lungs, a New Lifestyle, and Swinging Kettlebells.  Head on over and give it a read if you are interested in my weight loss and health improvement journey following the Primal Blueprint.

These Lungs are a Precious Gift - An Interview

April is "National Donate Life Month", and as part of their efforts to raise awareness and encourage people to register as organ donors, the organization PatientsLikeMe interviewed yours truly.

“These lungs are a precious gift” — Member John shares his new “new normal” for National Donate Life Month

I'm the only one with a tie.  That picture is from the 2015 Stanford Medicine X.  I participated in a panel that presented the results of a study of IPF patients use of wearable devices.  I applied for a scholarship to attend this year's MedX, but have not yet heard back from them.  Being there was an awesome experience.