Sunday Selfie - - #HAWMC Day 27

My Number One all time favorite picture of myself is this image of my new lungs.

Seriously, those look pretty awesome!

As for a picture that I think is a very nice image of me, I have to pick this one that was taken at MedX.

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Resources for the Pulmonary Fibrosis Community - #HAWMC Day 26

"A 'Care Page' for the Newly Diagnosed" - That's a nice description of what I intended when I started writing A Primal Transplant.

Here are 5 posts from this blog that I hope are helpful to folks who are looking for information on Life With Idiopathic Pulmonary Fibrosis (IPF), or Living With New Lungs.

Resources for the Pulmonary Fibrosis Patient

IPF? You Are Not Alone

Pulmonary Function Testing (PFT) Explained Clearly

Supplemental Oxygen

My Lung Transplant

Here are more posts on Idiopathic Pulmonary Fibrosis and Life With New Lungs.

External resources that I find helpful:

The first resource that I have to mention, and one of the best places to find easy to read and helpful information, is Dr. David Lederer's blog Pulmonary Fibrosis: Clearing the air. Dr. Lederer does a great job of helping to keep the community up to day with the latest research, and providing real world answers to our hardest questions.

The next place I like to send people is the Pulmonary Fibrosis Foundation (PFF).  The PFF is THE pulmonary fibrosis advocacy organization. The PFF has been very influential in developing our PF Centers of Excellence, PF support groups, and garnering interest in developing treatments for IPF.

PILOT For IPF is an awesome resource for both the medical and patient communities.  If you don't have access to a PF Center of Excellence, refer your community pulmonologist to PILOT for information that they need concerning PF.

A patient centered community that I enjoy participating in is PatientsLikeMe (PLM). I've tracked my medical data at PLM for years and built friendships with many of the other members.

For social media, PF Warriors on Facebook or Twitter is a great source of community and up to day information on pulmonary fibrosis.

Well, if you are interested in reading, that list should keep you busy for awhile. If you are looking for something specific, let me know. If I don't know where to find something, I'm sure I know someone who does :)

Tip Tuesday - #HAWMC Day 22

Today's prompt made me laugh.  Have I mastered the hashtag? Oh heck no.  I've tried #ePatient chats on Twitter and they just seem to zoom right on by me.  I'm sure it's just an experience thing, but I do miss a lot of great information and have to catch up with the conversation later.

Instagram algorithm?  I don't have a presence on Instagram, I only have so much Social Media Manna and adding another platform would drain my manna reservoir before noon.

Tips for increasing blog followers? I just try to keep posting relevant to the purposes behind A Primal Transplant. My target audience is people affected by Pulmonary Fibrosis and/or lung transplantation, a small population of folks seeking information on these issues.  Hopefully my experiences help.

The only real tip I might have for fellow Health Activists is to try to make sure you spend time on yourself. We can get lost in the advocacy and leave our own health care lacking.  It is ok to say no, to relax and take some time for yourself, and to take care of you.

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Repeat Until Strong - #HAWMC Day 21

My mantra is very simple. Three words that have changed my life. "Repeat Until Strong".

This little sign is under my monitor and I see it every time I'm working on my computer. 

I first read those words in Pavel's Simple & Sinister when I was first learning about kettlebell exercises. I was doing body weight  exercises and looking forward to moving on to something different. I didn't much enjoy body weight only exercises, but that was all I was cleared to do by the Transplant Team. I did enjoy getting stronger. I always started my body weight exercises with squats, and there were times I would stand there for several minutes talking myself into that first squat. Repeat Until Strong helped get that first squat. I still like starting my workouts with some form of squat, it's a trigger that says "Time to get after it".

"Repeat Until Strong" That little mantra helps in so many areas of my life. Taking my 6 times/day meds, there are times when I look at my handful of pills and this little prompt helps get them down. It helps with tracking my food and taking my twice daily vitals.  Repeat Until Strong...

What is Strong? That is a nice thing about this mantra, Strong is an ever changing idea and really doesn't have a lot to do with physical strength anymore. Now it is more about mental strength, the ability to accept and adapt, to do the best with what I have.

Repeat Until Strong...

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The Highlight of my Health Advocacy Journey to Date - #HAWMC Day 20

Today's prompt could have been answered in a couiple different ways. I had to decide between when I felt most productive in a 'Big Picture' sence, when I was able to meet and talk with people who really could help make a difference for future folks who find themselves living with IPF. Or, I could talk about the more personal times when I've been able to help and support new friends who are in the midst of trying to live the best they can with this horrible disease.  I decided to go big picture today.

What has been the highlight of my health advocate journey? That is a very easy answer. My time at MedicineX 2016 was the most intense and productive 4 days of patient centered health advocacy I've experienced. You can read about my experiences at MedX here.

A couple of the things that made this even so special is the time that I was able to spend with leaders of health care systems, cutting edge designers, clinicians, researchers and most importantly, other ePatients who were all interested in improving health care everywhere.

The contacts and friendships that were made at MedX continue to empower, motivate and support me in my efforts.

Heck, I wouldn't be part of this challenge if I hadn't met WegoHealth at MedX.

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Swinging My Way Out of a Rut - #HAWMC Day 19

This post took longer than I had expected. I ended up deleting more paragraphs than I've published. There are many things that brighten my days. Living life in appreciation of the precious gift offered by my donor family is the best defense against depression. Taking care of that gift let me to my interest in fitness, and that interest led to my answer to today's prompt.

How do I handle "tough" days? That is a question I've had to think on a bit before answering. At this point in my journey, my tough days are often more mental than physical. Comparing today's tough days, while I am still on the upslope of my post transplant health and fitness curve, to my time during the last few months pre-transplant, renders today's problems... well...it really helps define the magnitude of these issues.

I have a saying now, "Kettlebells make everything better." No matter what happens to be going in with me emotionally or physically, time spent with my kettlebells helps put things in perspective. Kettlebells demand respect. When you are swinging cannonballs, or holding them over your head, you have to pay attention. Once I begin a KB workout, the cares of the world disappear.

Henry Rollins wrote:

The Iron is the best antidepressant I have ever found. There is no better way to fight weakness than with strength. Once the mind and body have been awakened to their true potential, it's impossible to turn back

I've already accomplished much more than I, or my Team, ever expected. My potential is not the same as someone who's not breathing with new lungs and living on immunosuppressants.  Many people achieve my goals in 2 to 6 months, it will be at least a couple of years before I get there, if I ever do. But that's ok. Another thing Henry Rollings mentioned is that "The Iron never lies..." There is so much truth in that little statement. When I"m feeling down, or weak, or am having a hard time with the meds, I can read back through my workout logs and remind myself of what I have accomplished, then I can go swing a 'bell.

If something is really bothering me, I mention it to my IPF, Transplant, and Mark's Daily Apple community and they always seem to have the right thing to say to lighten the load.

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The Things People Say - #HAWMC Day 18

I honestly didn't think anyone was interested in reading these daily Wego Health Activist Writing Challenge posts, so I stopped writing them. Turns our a couple of you were enjoying them. Cool, I'll get back to it.

At this point in my journey, things people say or ask about my transplant really don't bug me.  I do find some things funny, especially when I mention to someone that I've had a lung transplant and the first words out of their mouths is "Oh, I'm so sorry".  I always get a big smile when they say that and say something along the line of "Oh, don't be sorry, I'm still alive because of this wonderful gift". Then I get to talk about organ donation and how wonderful my donor family is.

Now when I was sick there was something I heard over and over again that did touch a nerve.  When I was on supplemental oxygen, and people learned I had Idiopathic Pulmonary Fibrosis (IPF), they would often say "Oh thank goodness, at least it's not lung cancer".  I would just agree, but inside I was thinking "Yeah, because there is a chance at a cure if I had lung cancer".

I'm not sure that is something I would ever be comfortable hearing, but I do understand that it is never mentioned with anything but a caring heart.  I know others with IPF often hear the same thing, if you are one of these people, know that the person saying it is just ignorant of our disease and really is happy for you that you do not have the more known, horrible disease.

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An Ideal Day - #HAWMC Day 9

This prompt is an easy one for me to answer.  We have kids, grand kids, and family spread coast to coast. My ideal day would involve getting the family together in Colorado to enjoy 4th of July on the Front Range.

It has been a long time since we've all been together, the last time was when we lost our grandson Peter to cancer a couple years back.

Colorado is important because, well, first it is really beautiful, and second, there was a time as my disease progressed that I couldn't go back to Colorado due to the altitude.  I just couldn't get enough supplemental oxygen at that high of a location.  We really enjoy 4th of July in Loveland on the Front Range.  They do a great job with the fireworks and the town is just a very nice place to be.  That's where I lived before moving to Texas.

BBQ, fireworks, enjoying time with family.  Yep, that's the day.

This is a vid I took the last time we were together in CO for the 4th, and we had the kids posing for photos. Peter is o the far right.

We have 3 more to add to the next photos :)

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The Little Engine That... - #HAWMC Day 8

The 8th day of the Health Activists Writer Month Challenge, #HAWMC, The Little Engine That...

I've been thinking on this post pretty much all day, and still don't have a good list to put down. Should I put down health activist items, personal goals, or just what?  I guess I'll just start typing and see what happens.

I think I can...

• ... beat the odds and live for at least 5 more years with these new lungs.
• ... participate, and be competitive, in next April's Tactical Strength Challenge.
• ... be able to do 10 pull ups by the TSC (I can't quite get one now).
• ... avoid infection and stay healthy during this cold and flu season.
• ... continue to follow new developments in the Idiopathic Pulmonary Fibrosis world and share that information here.

I know I can...

• ...live this life I've been given with purpose and honoring my Donor Family who gave me this chance.
• ... continue to focus on improving my general health and fitness.
• ... continue to become a better me, enjoying life and sharing moments with others.

Well, that's it.  Not quite as many line items as asked, but I do believe that these are quite enough.

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A New Week - #HAWMC Day 7

I chose to start advocating for better devices for the pulmonary fibrosis community simply because the need is there.

Seriously.  There are over 200,000 people living with Idiopathic Pulmonary Fibrosis just in the United States and I have no idea how many there are world wide.  Folks with moderate to advanced PF have very specific supplemental oxygen needs, and these needs are not being addressed.

Blood oxygen saturation can change rapidly with any kind of exertion, a device that continuously monitors SpO2 and will alarm at a minimum safe level.  Speaking of rapidly changing sats, we really could use a device that will allow remote adjusting of supplemental oxygen flow while using a home oxygen concentrater.

If you are interested, you can read more about my ideas for devices to help the PF community here.

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Superpower Sunday - #HAWMC Day 6

The prompt for today... Superpower Sunday!

You know... every political season I wish I had the power to, with a thought, make people tell the truth. Can you imagine a political debate where all the parties involved couldn't lie or sidestep a question?

I don't think that was the intent of today's WEGO Health #HAWMC topic, so I'll get back on topic here...

Well, after thinking on it for awhile, I think I'll stick with the ability to compel Truth as my Superpower.

How awesome would it be if not only the bureaucrats and politicians, but everyone involved in health care told the truth when they addressed us? Talk about transparency.  Trial results couldn't be hidden behind personal or corporate agendas, and government funded programs might actually become focused upon the individual and not in protecting the bureaucracy.  Your medical team would actually have to admit when they really don't know what the heck is going on and refer you to someone who does.

I understand that Truth in health care will involve some very difficult conversations. But can you imaging the progress that would be made in all areas of health care and health care delivery if the curtains came down, the Wizard was exposed, and we could start trusting Medicine?

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Favorite Platform Used to "Get My Voice Heard" - #HAWMC Day 5

Health Activist Writers Month Challenge continues with Day 5. Today's prompt - What's my favorite platform to get my voice heard, and why?

A simple question with more than one answer.

• My favorite, and most effective platform for interacting with health care providers, medical device design teams, and other ePatients is Twitter.  Twitter seems the best platform for quickly sharing important information, ideas, and medical advances. Twitter chats and conversations reach a wide variety of people and organizations, and can be easily followed with a #.  

• To promote "A Primal Transplant" outside of the ePatient/medical community, Facebook seems to be the best choice. 

• The purpose of "A Primal Transplant" is to be a place where people affected by Idiopathic Pulmonary Fibrosis or considering a lung transplant, can uplifting and accurate information about these issues from someone who's "been there, done that".  Social media platforms are great for getting the word out quickly, but Blogger is my favorite for publicly documenting my post-transplant journey and hopefully helping those who are on a similar path.

I do believe that the very best 'platform' for getting your voice heard and spreading awareness will always be face-to-face.  Looking someone in the eye, and sharing a moment with them, will leave a much deeper impression than any Tweet or blog post.

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A Letter to My Pre-Transplant Self - #HAWMC Day 4

The prompt for Day 4 of the Wego Health - Health Activist Writers Month Challenge, is an interesting one.

One thing that many of us with Idiopathic Pulmonary Fibrosis (IPF) share is that we often do not have a 'day' where we are diagnosed. We often go through years of misdiagnosis before our teams settle in on the IPF label.  Heck, my community pulmonologist wasn't even ordering the correct scans and testing to accurately diagnose an interstitial lung disease.  He never once had me perform a DLCO. DLCO is basically a test that checks how well oxygen is transferred across the lung into the bloodstream.  It is usually performed in conjunction with other pulmonary function tests, and along with these other results, help identify the type and progression of disease. Another test he was missing was a High Resolution CT (HRCT) Scan.  The scans he was ordering were CT scans with contrast.  My insurance company finally stepped in and required he order the correct scan. I really like my community pulmo, but he should have known better.  He based his assumptions in my case on my work history, age, and his experience with IPF. His IPF patients were all much older, progressed rapidly, and passed quickly.  One reason I do like this doc, is after I found the right team and was properly diagnosed, we still met and talked about what I learned and mistakes that were made.

So at what stage of the diagnosis journey should I direct this letter?

Advice from the future would probably been the most helpful right after I received the results of my HRCT that showed "Extensive ground-glass opacity and subpleural fibrosis with traction bronchiectasis and early honeycombing. The findings are indicative of idiopathic pulmonary fibrosis." and my VATS lung biopsy that concluded I had "Interstitial Pneumonitis with Fibrosis" by the local pathologist, or "Usual Interstitial Pneumonia" by Mayo Clinic's pathologist.

Side note: Do you think we might find a way to define the different types of pulmonary fibrosis Histology and Radiography notes in a way that all participants in the conversation can understand what the heck we are talking about without having to spend hours in online study?

For the letter:

Hey Bud, it's me.  Well, it's the me that's you near 2 years after your lung transplant.  Lung transplant you ask? Yeah, I know you are not even thinking in that direction right now, but that is where these decisions you are making will lead.

I  know those HRCT results have got you worried, and you want to know for sure what's going in with those lungs, but I'd like you to consider seeking a second opinion before you go through the VATS biopsy. That is one rough procedure, and talking with a team that specializes in Pulmonary Fibrosis might lead to an accurate diagnosis without it.  Worst case is that you just delay the procedure for a month or so. Might as well see the team at UT Southwestern now, your pulmo's going to send you there after the procedure anyway.  Seeing them now could save you some long term pain later.

And hey... stop worrying about 'things' so much. Most of what you are worrying about won't happen, and the things that do are affected by your worrying about them. So why waste the energy and time/ You might want to make the decision to eat healthier sooner than later. You are going to have to lose that weight, easier to start now instead of waiting like the future you did.

Some things just are not going to work out as you plan, guess what... it is OK. Your journey to life with new lungs is going to change you. I think we are a better man because of it. So do what you do, make your plans and prepare best you can.  Just understand when things don't turn out the way you planned, you will get to the other side.

There's more I can tell you, but hey, you got this.

Future you 

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Quotation Inspiration - #HAWMC Day 3

Day 3 of the Wego Health - Health Activist Writers Month Challenge.  The prompt for today is...

The quote that has inspired, motivated, and kept me moving following my lung transplant is from the Kettlebell instruction book, Simple and Sinister, by Pavel Tsatsouline.

It is just three simple words, words that I've repeated to myself thousands of times.  Words that I have just under my computer monitor so I can see them all the time.  These words?

I was reading Pavel, and visualizing a stronger me, before I was even cleared to pick up the lightest of kettlebells. Early on after the procedure, when my goal was just to walk a few more steps every day, there were times I just didn't feel up to it.  "Repeat Until Strong",.. check the fitbit and get those steps in.  Soon I could make it to the mail box, then the street corner, then the Corner Store a mile away. Now I can walk just as far as I want to. To get here, I had to "Repeat Until Strong" every day. 

This motto works in other areas of my life as well.  There are parts of life with new lungs that are a grind, but I am (as I like to tell my Sweetie), stronger every day as I repeat the healthy habits that make a difference. Speaking of my Sweetie, our bond is stronger every day. That is the very cool thing about the word "Strong". It evolves as we progress, and is different at each stage of our lives.  Right now I'm still on the upswing side of the post-lung transplant curve. There will come a day when the meds, my immune system, and new lungs push me to the declining portion of the curve. The stronger I am now, the shallower that slope may be. I may have to change my motto to "Repeat to Stay Strong" then, but I will still be keeping at it. I owe my donor family my best.

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The Blogging Process - #HAWMC Day 2

Welcome to Day 2 of the Wego Health - Health Activist Writers Month Challenge.  Today's prompt:

Finding a topic to write about, something that might interest someone in the Idiopathic Pulmonary Fibrosis (IPF) or lung transplant community, takes the most time.  There are some topics that I could write about over and over again, topics like the importance of using supplemental oxygen, but that would get kind of boring for many who do read these posts.

I have three studies in the queue that I would like to write about. I have to internalize them first, think on what I find important and interesting about the studies, then put my thoughts down in a post. There are also a couple of general themes I see in the online community these days that might be helpful to talk about.

Do I edit? That question made me smile.  Look back at some of my posts and you would say the answer is "nope".   I do read through the longer posts a couple of times to help ensure readability, and my Sweetie will look over them every once in awhile, but as you can tell, no read editing.

If you have a topic or question that you would like me to address, let me know.  I'm always looking for good ideas to write about.

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WEGO Health - Health Activist Writer's Month Challenge (#HAWMC) Day 1

WEGO Health is promoting the Health Activist Writers Month Challenge.  They've prepared 30 health-related prompts to help us  get creative with our posts.  I am always on the lookout for something to write about, and I love to accept challenges, so I'm joining in.

What is WEGO Health?  In their own words:

We are WEGO Health — a network of over 100,000 of the most influential members of the online health community. We are bloggers, tweeters, pinners, and leaders of Facebook pages — we are the empowered patients that drive the healthcare conversation online, across virtually every health topic and condition.

Well let's get started -

1 - What drives me to write about my health?

I started this blog to share what I have learned about Idiopathic Pulmonary Fibrosis (IPF) and lung transplant. There is not a lot of good information available, written from the patients perspective, available to folks newly diagnosed with IPF or making the decision about moving forward with being evaluated for a lung transplant. Hopefully I'm helping fill that gap.

Writing this blog has given me the opportunity to advocate for much needed improvements in the delivery of supplemental oxygen for people living with IPF, and for better devices to help monitor blood oxygen saturation.

2 - What do I want other Health Activists to know about my condition and my activism?

Life with new lungs is wonderful. The ability to take a full, deep breath, and not having to struggle for each and every breath, is miracle.  Like many other Health Activists I have met, my issue (I hate calling it an illness) is an invisible one. Staying healthy, and counteracting the negative effects of the immunosuppressive medications is a full time job. I also have limitations that are not obvious to the casual observer.

My activism on the blog is primarily focused on providing support and information for  the Pulmonary Fibrosis and Lung Transplant communities. I also enjoy being active in the growing social media ePatient  activist community, supporting each other in our efforts to spread awareness, empower patients, and improve health care delivery.