My friend Steve posted a note to me online and instead of answer there, I thought I'd turn it into this blog post. Pretty sure he'll read it soon. ;)
Been meaning to thank you for your recent blog posts about your
transplant meetings. I find them very helpful and I like your
perspective. What are the people like who attend these meetings?. Are
most of them wearing oxygen or needing assistance getting around? Do
they have labored breathing? I'm not as far along in the process as you
are , so was just curious. My eval is tentatively scheduled for July.
Its been a struggle just getting a foot in the door because of my
diagnosis . Like you I only need O2 when I'm sick , so I'm sure that goes
Thanks for the clap on the back, Steve, but it's no problem putting my thoughts down on e-paper, especially when trying to work these questions out for myself. The sheer *interconnectedness* of everything is mind-boggling. I, the patient, am but a mote in the tornado of people and activity that is The Lung Transplant. Sure, a mote at the epicenter, but a mote nonetheless.
The people at the meetings are quite varied in some ways; frighteningly, hideously, scathingly homozygous in others. The diseases that put our butts in those seats are varied, sure, but it is basically eight or ten conditions, no more. So each patient is in good company with like-stricken individuals. However, it is difficult sometimes to connect with or understand the particular fine points of someone else's disease that you don't share. (Hence, Steve, your ultra-severe asthma, as an outlier, is not only not well understood by the doctors, but also by the pool of patients around you.)
For instance, I understand CF just fine and pulmonary fibrosis well enough. But I don't quite understand interstitial lung disease or sarcoidosis. I understand only that, like me, their lungs are on the burnt side of well-done; not how they got that way. (It's also pretty clear that some patients don't understand their own disease.) Most of the patients are wearing oxygen and about 2/3 need it full time. The other 1/3 are comfortable without it at rest or mild exertion and need it only with activity or sleeping. A handful, like me, don't need oxygen at all yet. But sats aren't the only number that is important. PFTs play a big role in the prompt for evaluation. Some patients who need quite a lot of oxygen have good ability to breathe - their PFTs look good on paper, but their sats are miserable (and killing them). I'm the opposite right now.
But I digress. The chorus of hisses, ticks, beeps, and clicks grows as more people enter the room with their tanks. I personally get very uncomfortable when there's that much of that equipment in the room. I feel like the zombies are attacking. If I stay too long, they'll get me...and then I'll be the one lugging the O2 around.
A stupid reaction, isn't it?
Most of the patients are not struggling for breath when I see them; they're at rest and on enough O2 to be comfortable. Sometimes a patient's coughing fits can be alarming, but those are actually pretty rare. I am sure, though, that on the walk back to the car, or from car to house, there is a struggle for breath. It is probably this lack of struggle that makes me wonder if any of us are really ready to be transplanted. On the other hand, if they transplant when we are struggling for breath every moment of every day, we're likely too weak to survive the procedure. Timing is key.
Steve, I believe what you need to establish is a pattern of degradation. If you can chart your PFTs and oxygenation over time and establish permanent, irreversible decline, the picture becomes clearer for the physicians. Of course, you've probably already done that.