Raise your hand if you know what hemoptysis is. It’s when your lungs spring a vascular leak and you start coughing up blood, which is different than vomiting blood – those are totally different issues from different organs. I have talked about it in regards to CF on my old blog here, here, and here if you want to go off-site to read about it in general first and then a couple of episodes several years ago.
I’ve had two more advanced bleeders in recent years. One was on a super hot day last summer preparing for an adoption garage sale for our now toddler. I was in the garage looking up prices to set for things and I got a bleeder while my mother-in-law was inside on a call. It was bad, but we kept it confined to paper towels and mopped up anything that hit the floor before she finished and was completely unaware. We finally told them either in November or February while discussing other health issues… because it’s something CFers hide.
Then, for the first time ever, our sons and anyone passing by our car leaving church one Sunday a couple of months ago got to see it. It was my worst to that date. I was coughing for at least 10 minutes and we were deciding if I continue to cough in the car while she drove across the street to the dinky hospital for help or a helicopter ride to TGH, but the bubbling finally stopped. We mopped up the step board and a bit of the pavement, and left with a massive headache. I was down and out for the rest of the day.
A whole new ballgame
Then there was Monday, June 12th, 2017.
The day before, a friend in Sarasota (about a 90-minute drive south of my exit in Tampa) said one of our podcast friends was visiting and wanted to know if we could get together. I almost immediately turned it down because I turned down another person who was in the area, but that one was going to be much more of a first impression time. We’ve all either been friends for years or been on multiple video broadcasts, so impressions have already been made. So I decided it’d be nice to get out and eat at a restaurant, which is rare treat.
We went to our usual hole, Tijuana Flats just 2 miles from my house. I had soooo much enchilada, nacho, taco goodness! Oh, and a full root beer and a refill to go. We got up just a couple of minutes after 7:00 because they had a long drive home and walked out. I had snagged the first parking spot, which I backed into per my normal self. They continued on to their car and I was still on the restaurant side putting my double tanks in the passenger seat. I had one cough and suspected it “wasn’t good” and proceeded to the driver’s side and got in and closed the door.
As I got my nasal cannula back in, I coughed into my mouth what I immediately knew was blood. It’s often hard to tell by consistency, but the iron, metallic taste is unmistakable when it’s happening. I put it in a Kleenex and folded it up.
Immediately, another cough. This time it filled a Kleenex more than the first. A third cough. More blood than the first two. “This is not good,” I thought. “At least I have a full box of Kleenex after the church episode.”
The coughs just kept coming and I remembered that there was a family sitting at one of the outside tables and they’d be able to see me, so I started the car and drove left towards the lot exit but pulled into one of the spots on the other side where I had more room/time/privacy to let this settle down.
I started to openly cough into a handful at this point. I set the handful down and grabbed another out of the box. I opened the door a flung my root beer out and started spitting into the 20oz cup. It was quickly filling up. Easily 2oz per cough that cleared out.
As I was coughing, I became aware that my breaths were getting shallower and shallower. I started feeling faint. Then I felt the blood inside my right lung just percolating with the coughs. No, not wheeze or gargle. Percolate. Right through my lungs from the arteries. Air was getting stuck and popping, but my body wasn’t receiving the oxygen it needed.
I was in panic, the most panic I’ve ever had in all my years of CF and life scares. “I am going to die alone in my car in a Tiajuana Flats parking lot.”
I had already started to text my wife “Leaving. Massive bleeder.” This would not be a wholly unusual text. She’d find out how it was going minute by minute but mainly be aware. As it got worse, I tried to send it. There was so much blood on the phone that my finger inputs weren’t working. I wiped it and typed “Calling 911” and hit Send.
Rather than die in the car and be found later in some gruesome bloodbath and make people try to figure out who I was and use my Medical ID info on my phone to contact people, I stumbled out of the car with my cup and phone and just bent over coughing onto the pavement about 5′ from the car. For a photo gallery of the scene, click this button. Do not click it unless you want to see the photos.
After what seemed like forever but was probably only two minutes, help arrived. There was a massive pool of blood, the likes of which I’d never produced. I’d also started coughing up stringy chunks, which I surmised was lung tissue breaking off because it sure didn’t look like airway mucus. Whichever it was, there was a lot of “material” in the pool, too, which as a completely new event for me.
I was no longer afraid of drowning, but rather of opening up a hole so big they couldn’t stop my bleeding.
While I doubt they were from Samaria, a very concerned 40-something mom and her teenage son who was wearing a baseball uniform and the sports flip-flops and socks approached and she asked if everything was okay. I shook my head “no.”
“How can we help? Can we call for an ambulance for you?”
“This hospital… is too small… to treat it. Trying to figure out… best… plan,” I coughed.
“Okay. We’ll stay here and think with you. Do you live close?” she asked like a concerned mom with good professional presence.
“Yes, just through… Northwood. Wife is home… with boys.” Northwood is a quick shortcut between this road and our development’s road.
As we talked, an older man of about 50 came up with an entire roll of paper towels and two bottles of water. He offered me a handful to wipe the tissue dangling from my beard (I’d already taken photos of it like that to document how I died). Then he poured water onto a handful and handed me that to wash my hands. Such kindness.
About this time, I also stopped gurgling. It only took a few more coughs to cease the event. I stood up and greeted and thanked my helpers. My shirt, sunglasses, jeans, and shoes were splattered and smeared in bright “bloody murder red.” It would have been very difficult to explain if I had been pulled over.
My wife still hadn’t read my text (this is a recurring pet peeve since I don’t let my phone leave my side or pocket, but I accept this as how she is) so I assumed she was upstairs putting the boys to bed and maybe would decide to shower. Okayyyyy. Now what?
“If I dial 911, I’ll need the ambulance to take me all the way to TGH… but now it’s stopped for the moment and an ambulance is overkill unless I start again, which would be very unusual. I’ll dive home and we’ll take the boys with us until someone can meet her to pick them up,” I concluded.
“I’ll follow you home to make sure you’re okay and you make it, if it’s okay with you,” she offered.
“I’d surely appreciate it. It’s just through Northwood and into the townhomes on the other side. Thank you so much.”
I thanked the man and he handed me the rest of the roll and a fresh bottle of water and I hopped in the car and started rolling away until I saw I had a car in tow and then calmly pressed the pedal down a good ways to get on my way and it was clear that she was going to keep me close.
I called the clinic line and was immediately called back by the on-call coordinator because it was after hours. I conveyed the details and we both waffled for a little while. We landed on coming in to the TGH ER so the team had access to me and the full power of the trauma center, surgery, and ICUs. On the call he asked what my sats were, but I left it at home because my jeans pockets don’t have enough room for all of my extra crap now. He called back a couple of minutes later and told me he’d spoken with the doctor and to come to the TGH ER.
I was pleased that we caught the light green and both turns at the main road were clear to go. The gate was even up and open at our development! I got out of the car in our garage and walked to the back of the car and thanked her again. She even got out and confirmed a few feet from me that I was okay.
I hobbled inside and said, “Help. Help!” loud enough to be heard but not loud enough to rouse the boys. I immediately heard a rushing down the stairs and a hurried, panicked “What’s wrong?! What is it?!”
It only took one look to tell. I’d clearly frazzled her beyond comprehension, which is quite an accomplishment. I could see her thought process as she pressed both hands to her temples: okay, the boys are in bed, we can call the ambulance or go to the ER, let’s get Mom over here, I need to pack stuff.
She headed upstairs to get ready and get help to stay at the house. I heard her end of the conversation and I felt bad for having to receive a call like that, but that’s where we are now, aren’t we? This part sucks, but we are in this together.
“Please get me my pulse-ox,” I asked as she continued to insist that I sit on the step stool in the kitchen and try to calm my breathing, which was off the charts. I got an 81% and a pulse over 150. Knowing it was against protocol, I called the number he called from because I could tell from the prefix that it was a mobile number and this was an emergency.
“It’s only 81% – do we still drive ourselves in or get an ambulance?” I asked him.
“If you can’t get it up over 90%, you need an ambulance,” he replied.
I was already on the 5L of O2 from the home concentrator and it doesn’t go any higher, so she got the double tanks out of the car that started this whole mess, replaced the one I’d used, and we cranked it to 10L. I climbed to 91% and she went off to prepare more.
Just as she came down, her mom walked in and got a few details, saw me covered in blood, and we left. People! I didn’t even pack my laptop or my phone charging cable. This is how you know this was serious if none of the blood above (If you clicked) was evidence enough.
Just as life would have it, it was raining. Then it was pouring. We were still making pretty good time going into town after-hours and my sats were staying over 91%, sometimes even hitting 96%. As soon as we exited, I said, “Good job, Honey,” because I saw how stressed she was dealing with this from different angles and driving. For the first time ever, we used the valet parking at the ER ramp. After we confirmed we weren’t crazy just leaving our vehicle there running, we went inside.
There was a line of people at the same desk that was empty on Friday. A line! Do you see this man covered in blood, people?!! I had the presence of mind to carry in my half-full Tijuana Flats cup as proof of some of the volume… and to serve as a bloody visual cue that something is wrong with this picture.
Not much more than 30 seconds after we got in line, a big, beefy nurse came out of a triage room and he said, “I’ll get you a wheelchair.” He cut through the line and had me sit in it and he hoisted the double tanks onto one of the feet. Then he instructed everyone in line to back up (including a woman in a wheelchair who was starting to roll up to registration next) and for her to rush register me. She asked 2 or 3 questions and put a band on me.
Mr. Beefy was named Grubbs, and Grubbs took charge from that point on. He commanded Mr. Door Opener to let me into Triage 1. He took my vitals while the nurse asked my wife questions. Grubbs read them off to her and we backed out as she got on the phone to find out we were going to Trauma 2. Mr Door Opener obeyed another command and we were off to the races through the ER almost as quickly as we did for my tachycardia.
As soon as we got into the bay, Grubbs started working on the air situation and a doctor was there within 10 seconds. Then another and navy blue RNs by the handful. As the doctor was taking assessment of me and the situation, within 90 seconds, a tall, young woman in sea green scrubs walked up and introduced herself as the attending physician and asked a couple more questions. They listened very carefully to the Tijuana Flats story, past episodes, and more of my history.
All the while, Grubbs started two IVs, hung a bag of fluids, and got my wife situated within sight and hearing but out of trample danger. Their immediate concern was my heart and respiration rate. I was pushing 35-40 respirations per minute and my heart was still over 140, sometimes hitting 150. That’s about where the cardiologist set my limiter last year.
We tried a Vagal maneuver to get my heart rate down. It didn’t do much, so I asked for some Ativan. 0.5mg helped me but didn’t help my heart. We finished the dose and it helped a little but sure made me sleepy. It’s hard to sleep in that situation, though, so we kept going.
Another doctor came, a pulmonologist from the critical care team came and we discussed a bronchoscopy and intubation and the risks with my heart going so fast, so I declined while we had the present situation and no bleeder. Sure, if I start bleeding again, take care of the heart any way possible and fix my leak.
At this point, I’m not sure what they really decided other than to get me up to CTICU for monitoring overnight and see how my heart fared in a quiet room. I easily dozed off and I remember my wife in the bed next to me like we sat on Friday waiting for lungs, but I’m sure that couldn’t have happened on that narrow bed, so we’ll just say how much I love Ativan. At some point, I took that photo of my wife looking annoyed that I was taking a photo of her watching me relax on good drugs… oh, and she asked if I thought she could get a blanket out of some microwave-looking thing next to me. Of course, I agreed it was okay. Anything was game, as soon as I took a nap.
They wheeled my bed to CTICU, some of which I remember and some of it I don’t… and that’s where we’ll leave this entry.