Got through my 6 week appointment with the doc yesterday, and informed him that I have a pulmonary function test (PFT) with date and time mandated by either the Feds or the State on behalf of my disability review. (It’s hard to tell who sent it – everything is in code).
I was so distracted, though, that I forgot to get his interpretation of the Morgan Scientific category chart which indicates the primary types of lung function difficulties into readily identifiable labels involving COPD disease:
I won’t be seeing the doc for another 6 weeks, so this question of “which label am I?” will have to wait until then as I was too distracted by the rest of our conversation.
I’m big on understanding my month over month / year over year stability, so I always get the test results and try and understand them. I’m not a doc, so it’s more image gisting of the numerics involved in the diagnosis than anything else, but it helps me to feel in control.
So, I’ve tracked my results from Dec 2014 when he handed me some really powerful COPD medicine (as I again turned down thinking about a lung transplant):
At that time, I was listed as “very severe restriction”, when I was exhausted and still working daily, and determined to head for Australia to complete my bucket list item of snorkeling on the great barrier reef before I ran out of the strength to endure the trip.
After returning from Australia, I began the inhaler from hell, the Anoro Ellipta, and this second graphic shows my breathing level moved from a Stage IV, very severely restricted, back to a Stage III, severely restricted, even though the difference on the COPD Gold Scale is less than 3 points between one level and the next in my case.
Don’t get me wrong – I’m all for any health improvements I can get. What I’m not a fan of is trading one problem for another:
- eye pain, blurry vision, stys, rashes, heart issues / spasms
So, we debated the issue and I stayed on that medicine until August (his 6 month request), and things didn’t improve so much as they morphed into additional issues.
At the August 2015 appointment, where he agreed that he couldn’t do more for me and I should go out on disability to conserve my strength and quality of life, we focused on that next phase of hassle vs. much of anything else.
While we haven’t discussed it in detail, as there’s not an expiration date stamped on my butt, the general consensus for severe to very severe breathing restriction ratings is about 3-5 years until end of life. A simple cold or pneumonia could take me out, so it’s not like I’m sitting here slowly winding down like a helium-filled balloon with a definite likelihood of an end date.
Instead, I’m looking at what needs to be done to ensure my independence as long as possible, while marshalling my resources to plan for the next phases where I want to be as active as I can for as long as I can, while also trying to measure my likely “time available” to get as much out of life while my financial health and well being permit.
I’m thinking of my own experience as my Mother’s COPD caregiver, what hospice staff said, and the various resources and references used to compare possible life-prolonging treatments and measured outcomes for everyone in this disease class.
And, I’m in the fight of my life for getting the benefits I’ve paid into vs. leaving them behind, unused, while forcing myself to keep on working and fret myself into a wasted life and early death. Wasted, because I lived longer than anticipated and didn’t die with a nice, quick heart attack, as I’d hoped (presuming, of course, that I didn’t simply die peacefully in my sleep), and wasted because I didn’t make time at the end to enjoy the journey as I was too busy chasing the almighty buck.
So, it’s frustrating to not have any more recent test results for knowing whether or not my breathing is back at the 2014 rates (32-33% lung capacity) as I go before a review board which I presume is determined to decide that I’m a goldbrick. A faker.
My doc’s latest office notes indicate that the breating capacity is now at 25% for March 2016 (implying that the Anoro Ellipta or Striverdi Respimat, once ended, may have contributed to a worsening of my symptoms). Or, indicating that it’s just the normal disease progression over time.
I was floored, however, when I was in his office making conversation leading up to asking for actual test results in the full imagery, and got a humorous or flippant reply to just fake it when it comes to the PFT test.
Nonplussed, I looked at him in confusion. There’s no way to fake these tests, right? (The old Catholic guilt reared its ugly head – I’m not sick, I’m shirking !) Pulmonary Function Tests are just that – tests to measure actual performance. I’m not some old jalopy that can squeek through a smog test by first driving the car for a couple of hours to blow the cobwebs out of the engine, right?
This whole process of living while dying is beyond me. While I don’t expect a miraculous cure, I do hope to remain stable or improve on my numbers based on what I am and am not doing to aggravate the underlying breathing difficulties. I want my graphic image test results, and I’m not sure why he’s no longer posting them.
At this point, I have no answers and will simply stress myself out, waiting until after May 10th and the results are in.
Am I a faker?
Should I take my 7-month / no-work / much-more-relaxed-body back into the working world? Only time and the next series of tests will tell. For now I have too much time on my hands…