Friday, November 4, 2016

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
More WEGO Health Writers Challenge

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