(I’m continuing the story where I left off a few days ago)
After the doctors performed the first embolization on Friday, I started coughing up blood on Saturday, which was quite a surprise and a mental defeat. In my mind, it labeled the first embolization a failure, as I shouldn’t have bled again. And I must say the second bleed did seem to stump the docs, who thought they had plugged the leak. My most excellent CF doc explained it as a plumbing problem where pipes of different sizes meet and don’t line up correctly and leaks continue. I didn’t understand his more medical explanation but I had full confidence he did. One of the crazy weekend docs thought it might be from damage to my right lung, my bad lung (I have a good and bad lung), and told me I might need part of my bad lung removed, which didn’t make me feel so optimistic about my future. Luckily, he was wrong and a stupid MF for thinking out loud in front of me, hence the reason he’s on weekend duty and not scaring the shit out of patients during the week.
Now if I were completely out of it and in the hospital, the ICU would be the place I would want to hang out. The big glass windows and non-stop, obsessive care sounds pretty good when you’re in an unstable state and hanging on to life. However, when I was moved to the ICU for the bleeding, I was coherent and able to move around. That soon changed when they tethered me to the IV pump on the right side of my bed and the 24-hour heart monitor, oxygen and pulseox on the left side. Frankenstein bound.
As I like to hunker down in my hospital room with the door closed during my normal hospitalizations, this fishbowl of a room where I was the star attraction became my nightmare. When I discovered it had no private bathroom and came with a juice bottle for urine and camping toilet that folded out from under the sink, my bowels puckered up and went on strike. The privacy was one step up from a prison cell. And despite the curtains with partial coverage of the room, I hadn’t reached the point of no shame where I would feel comfortable when a nurse discovered me with my boxers around my ankles, iPad in hand and my rear placed firmly on the toilet seat. I may not take a shower in the hospital, and I may resemble a homeless man with my greasy hair standing straight up, but I’m not at the point where I feel comfortable having a conversation with someone while I’m taking care of business.
And to top it off, the first nurse, who had some a-hole laziness in her, handed me a green box of tissues to use when I asked her where the toilet paper was. These cheap hospital tissues are small and see-through and as absorbent as rock. A much kinder nurse gave me toilet paper when the situation became unavoidable. I made it a point to let the first nurse know about the kindness of the other and to give her a look of “I should strangle you with my oxygen hose right now, but I need it to breathe.”
Thanks to other emgergency IR cases, I didn’t get in for my second embolization until Monday afternoon. At this point, all airway clearance was stopped and they put me on steroids for the jaw pain. Adios morphine dreams, hello steroid hallucinations. Yep, hallucinations. Real ones. Good ones. Like the time I was sitting in bed and the wall moved forward at me real fast, back and forth. Or the time I lay there half dazed driving through worlds painted by famous artists. My favorite was the night I had imaginary friends in my room and woke to find they had abandoned me. What a lonely, sad feeling that was.
Monday afternoon rolled around and my lungs felt congested from no airway clearance. I said goodbye to my wife at the waiting room for a second time, deja vu, and heard the same potential complications speech from the doctor. With no bronc this time, I never reached full unconsciousness. I hung in the misty middle earth of reality and feeling drunk on Colt 45‘s. I do remember them cutting into my groin. I almost said something like “should I be feeling you pinching my private area?” but didn’t care thanks to the fifth beer in my veins. And of course the doctor asked me to perform the same task of a holding a deep breath, though I did have to clarify if he wanted me to start inhaling on 1 or 3. Let’s be clear here, Doc, I’m in an altered state and you’re killing my buzz with these reindeer games and their complicated rules. Is it 1 or 3 when I start breathing? Clarity is the key to happiness.
Three hours later, with Monday Night Football playing in the back room of the IR OR, the team seemed more interested in the game than me lying there on my back with a hole in my groin. Luckily, one doctor stayed behind to seal the leak, though I did think for a moment it would be fitting that I, a lifelong football fan, might die because of MNF. Doctor to my wife: “We’re sorry, we got so caught up in the Bears driving for the score, we forgot to close the hole in his groin and he bled out. But he did lay 100 bucks on them to win the game. Here are the winnings, which I’ll apply to my fee.”
During the three hours, the doctors did a lot of looking around. The area where they performed the first embolization looked much better than on Friday, which was good news. They also found another area that didn’t look normal, probably wasn’t bleeding, but fixed it anyway to help me avoid an episode in the future and help themselves feel better about it not being an unnecessary embolization. It’s hard to say if the second round of bleeding would have gone away on its own without the second procedure. It may have. We’ll never know. The plumbing may have worked itself out. I was just happy to be done with surgeries that start in my groin.
And can I tell you that the next day when they wheeled me out of ICU and back to the CF floor, my mini-fridge of probiotics on a cart next to me, it was the first time in my history of hospitalizations when I broke down and cried. My CF doctor came to see me and I had nothing left. The energy I used to make it through the two embolizations, and four days in the ICU and three hours of sleep a night (the ICU is never quiet or dark), left me drained by that point and I was very happy to see him. It was the point in a spy movie when the spy, captured and tortured, finally reaches his pain threshold and breaks. That was what it was for me. It was the first hospitalization that broke me. I’m not proud of the moment but I am proud it took me dozens of trips there for it to happen. And I hope I never experience it again, though I have a gut feeling I will. At least I’ll be better prepared when it does thanks to the scar tissue from this visit.
Imaginary friends are the BEST! You always inhale on 3. Oh, and you deserve a little breakdown every 30 hospital stays or so. Hell, I have a breakdown every other stay…
I miss my imaginary friends. Easy for you to say “3” when you’re not wasted on your back with doctors working around your groin. 🙂 Still not sure what happened on this stay to break me down. Well, I am. I got wore down to the point of my nerves being raw. I did make it to day 10 before I spilled all of the government secrets.
Touch wood we’ve only had one experience of ICU about 5 years ago when Lauren had her Bilateral Pneumothorax. It was a very scary place to walk into, lot’s of machinery and wires and tubes. I hope we/you don’t have to go back there in a hurry! Stay well my friend. 🙂
I hope no one in your family has to go there again, especially the girls. I know you’d find a way to sneak in beer and be a troublemaker.
The toilet situation is motivation enough to me to stay out of ICU. Hope you are staying happily bleed-free now.
Thank you, Dr. Nanos. Strange how that bothered me so much. Needed something to focus my attention on.
hope you’re still getting better, day by day. I agree with Nanos on the whole toilet thing…..imaginary friends are cool as long as they do what you want them to, if they dont play nice, then whats the point? right? much love!
Finally feeling better. It’s been weeks since I got out, but some normalcy is returning. Thanks. BTW, WTH happened with your saints losing to the browns?
ha! lets just call it coming full circle. my heart broke into a million pieces when Fujita got that sack on Brees……shoulda never let him go 😦 *sniffles and tears*
Ahem…Hardcore Browns fan in the room! I don’t recall getting congrats from either of you on that amazing WIN! We Cleveland fans need something good to happen in the sports world every once in a while. Julie, thanks for Fujita! He’s my fav!
I know you’re a Browns fan. Before I sent the reply to Juli, I have rewrite it because I was a little harsh on the Browns. Then I remembered you loved them and toned it down. Glad I did.
I hope you’re continuing to improve, UC. Still sending you good wishes and prayers.
MAL, Thank you. I feel better each time you write me. 🙂 Best health to you, too.