Hemoptysis (First episode began Nov 12th 11:40pm)
*Warning- I talk about blood in this entry. Don’t read if hearing about blood is not your thing.
I had some hemoptysis (bleeding from my lungs) last Friday night.
This is my first episode since beginning Trikafta (Jan 31,2020) and starting MAC treatment (Feb 2019). It was quite a shock.
Even though this was a more regular part of my life for long stretches at a time, I was in no way ready for this one. Except, I suppose I was, because well, it happened.
I laid down to go to bed and immediately coughed that very different kind of cough. I could feel the fluid movement in my chest and a clot come up with fluid in my throat. I ran to the bathroom in disbelief and saw that I had in fact coughed up a clot and bright red was continuing with my following coughs. That first little burst was maybe a teaspoon. Including blood and clot, then some streaking, and it stopped within a minute or so. By no means was this a big, or even medium bleed, but both Rick and I were just so shocked, in disbelief. (Again, that feels so weird to write given my history, but I think we had both just dared to let ourselves settle into the incredible lull of “my lungs have been doing so much better on Trikafta”.)
I sat quietly in the bathroom, dumbfounded, but glad it seemed to have stopped, still a little in disbelief “what the heck just happened?!” Rick and I just looked at each other like “wha?”. When it seemed like it had settled I headed back to bed.
I went to lie back down and it happened AGAIN.
In disbelief I flew back up, ran back to the bathroom, and started searching for a dixie cup. For so many years I had kept a stash accessible in case of these events. I do so because it’s important to keep track of and measure how much has come up to know when/if to get to the emergency room. I had forgotten at first where they were and then without really thinking, like my body just kicked into automatic, my hands found their way to the pile of cups. I pulled one and let myself spit what was coming. Another bigger clot and what looked like a mucous plug was in this batch. (This is uncomfortable to share. I feel like you might think I’m gross, but so many people have no idea what a “bleed” is and I’m feeling like I want to be brave and transparent enough to get over whatever you may or may not think and share.) This second bought also stopped relatively quickly, after just a few minutes.
I went back to bed propped up on pillows, in the old standard CF flare up position, basically sitting up. I was able to sleep a little, woke up to pee, and it happened AGAIN with my movement. Some dark red straight blood, just a few more coughs, then bright red, then it stopped.
Needless to say I didn’t sleep very well. My ever present watcher bird, alert and perched on my shoulder, was making sure I didn’t drop too far off the pillow pile or move too much for fear that I might wake the bloody one inside. “Stay still, be quiet.” “Heal.” “What the heck is happening?”
I eventually slept.
So three episodes total. None very large in comparison to what I have experienced in the past when things got bad, but so startling and out of the blue. Right after the bleeds and upon waking my throat and upper chest were sore from blood. “Ahh, I remember this feeling.” Blood is great when it’s in the vessels, but outside of where it’s meant to be it can really reek havoc and be pretty inflammatory. I had almost forgotten what all this felt like, and again, this was mild compared to some of what I have been through. I’m grateful that I had some forgetfulness around what this all feels like. I’m grateful for having some distance from bleeds and that I actually had some time where I wasn’t as prepared for it as I once had been. Overall that’s a really good thing.
That said, it also just made it so hard to be with for me this time, emotionally, spiritually. It felt like a big ripple filled hit.
I know it was tough for Rick too.
So what do we do now? What in the world is going on down there? What does this mean?
What I think I know right now is I am ok physically. It stopped. It’s been over the 48 hour mark and I’ve restarted inhaled meds and activity (not without some continued watcher bird caution). No big immediate crisis or emergency. That’s good.
It’s been a good long stretch without this in my life. That’s good.
I navigated some disbelief, heart ache, and tears over the last few days. I had a lot of sadness.
I don’t expect anyone to understand this. There are parts that I don’t understand.
The ripples of the bleed at such an unexpected time, when less prepared than ever after doing so well from Trikafta has been harder than I could have imagined. I was hoping maybe I wouldn’t have to imagine this again, especially without getting sick or a clear catalyst. Maybe that imagining was just naive, but still, I’m glad I had that time.
Yesterday I had the anger of a fire breathing dragon for some reason. So, I met it and let it run it’s course.
Today, I feel more “myself” and it was time to draft a blog and well, this is what’s up for me so… here it is.
I’m doing my best to not project the future or let this setback take away how far I’ve come.
I’m doing my best not to worry too much about what any of this means because I won’t know without some more testing and the follow up that’s coming from working with my CF team. Even then I maybe won’t know. I guess that might be best case scenario because maybe that means this was just some break through fluke, something my lungs have been holding on to for a long stretch. Maybe I’m actually just moving the last parts of old damage up and out. Maybe I’m just letting go and sometimes letting go isn’t pretty or easy and just takes a while. Whatever “it is”, I’m doing my best. I will continue to.
The vessel of this beautiful, incredible, gift of a body has it’s own wisdom and teaching and poetry and mystery.
All of this is Love.
Blood tinged surprise Love (said with a sideways smirk and curl of the lip and a tongue sticking out).