For anyone who doesn't know, I had another big bout of hemoptysis.
Here's a small chain of events: On Friday night, I got all excited because I got the notion in my head to start making gift cards. It's crafty, it's something I can do with little movement, and I'm really good with my hands, so it seemed like a good idea.
So Mark and I set out on our shopping spree. It consisted of Office Depot and Michael's Crafts. Office Depot went fairly quickly, but Michael's is a wet dream for anyone doing crafts, especially SCRAP BOOKING. There is shit for scrap booking all over the place. The second I walked in, the first thing I ran into was the giant bin of yarn that was half price because they want to get rid of it. I want to jump in it.
After all the bargain crap, the scrap booking stuff starts. Making cards uses basically all the same materials. So, we dove in head first.
Because of my O2 hose, and my obvious lack of easy mobility, I collect many stares. Most people don't mean to, and they catch themselves and quickly look away. Most of the stares I get are from children. They haven't yet learned that staring is impolite (or their parents haven't taught them) and can make people uncomfortable. I tend to get panic attacks when I go to places with a lot of people, usually it the grocery store, but it's basically any store now.
So, I had to fight through a couple near-panic attacks. I also get really overwhelmed when there is a bunch of stuff that I want to look at and I know that it takes physical exertion and stamina to do these things. I always feel like I'm dragging Mark around and torturing him by making him shop with me. Thankfully he was with me and is able to calm me down and make me smile again. He has the ability to make me feel like we are the only ones there. :)
Saturday morning around 9am, I woke up bleeding. I coughed a few times and then it was "go" time. I coughed out probably 6-8 tbsps. It stopped, so I decided to go back to bed and take it easy. I woke up an hour or so later and things were fine again. Then, sometime between 3p and 4p, I coughed out more blood. This time, it was only a couple tablespoons and it was darker, so I thought it was old blood from earlier and that things were clearing up.
Around 9:30p, I was laying on the living room floor playing Diablo III and I just exploded with cough. I jumped up and hauled ass to the kitchen where I would spend the next ten straight minutes bleeding from both my mouth AND my nose.
I've coughed out a lot of blood in the past. I coughed out about 40oz in a five day period. This time, it was easily 20+ ounces within 15 minutes. Ten minutes straight of coughing and spitting, hovered over the kitchen sink.
It wouldn't stop. I couldn't stop. It just would NOT stop coming. It was SO forceful and violent that it was coming out my nose. That has never happened.
There are very few times in my life where I've actually thought that I might be in danger of not making it, and I'm sure there are numerous times where I shouldn't have made it, but this was different. This is the first time where I actually thought that I might be seeing that last things I'll ever see, or trying to say the last things I might ever get to say.
I get emotional right now because I can remember Mark hugging me and us telling each other that we love each other. I was fighting a panic attack the entire time. When I panic, my heart rate soars and then pumps more blood, which is exactly what I didn't need. In the past, when I would cough up blood, I would always talk myself down and was always able to calm myself. I couldn't do it this time.
I don't really know how to explain what it's like to realize your last moments. I assume that it must be what drowning victims felt like. Essentially, that's what I'm doing. You get to the point where you feel like it's never going to stop. It was never going to stop and I was going to die right there on the kitchen floor in Mark's arms with Luna yelping and trying to jump on me. Knowing other Cfers that have died due to hemoptysis doesn't help.
Scared doesn't even begin to describe it. I was so beyond fear and processing what was happening that I kinda lost my senses. The coughing had slowed, Mark had already contacted the Pulmo on call at UCSF and had gone to get the car, and all I could think of was that I was going to the hospital so I better get my chargers and a pair of undies and some toiletries ready to go. I was roaming around with a large plastic cup of blood in my hands, pausing to cough into it and then looking for my stuff. Leave it to me to be in a situation where I'm possibly losing my life and I'm worried about packing my shit. My stupid brain.
If I thought about all the ways I could die from this disease, severe hemoptysis is probably the most shitty of them all. At least in other situations you lose consciousness first, but no, not hemoptysis. Yet in the back of my mind I keep thinking "this is how it has to happen". I keep thinking that I have been set on this path and the means to an end are extreme, but they are what they need to be in order for me to get there. I just need to find the silver lining in this. There has to be SOMETHING good that comes from this. I'm hoping that it speeds up the listing process and the tx team sees how dire my situation is getting. We all agreed that the chances of my surviving another serious bout like this is pretty slim.
So, my coughing fit ended just before Mark and I left for the E.D. at UCSF. He wheeled me in there and I was fighting back tears and a panic attack the entire time. I have to admit that I was not very thrilled about even being there, but I was less than thrilled about what happened when I got there.
You would think that if you went to the E.D. and told them that you have an end-stage lung disease and you are coughing up HUGE amounts of blood, that they would be a little quicker on their feet when it comes to getting you to a room and getting you properly assessed. Apparently not these people. We literally sat there for 15 minutes waiting for the clerk to find my file on the computer and he never could. He asked for my ID and shit too. I don't think he understood what was happening or what had happened. Even the nurse that was back there behind him looked a little concerned, kinda like "shouldn't we be processing this person into a room by now instead of letting her sit in the waiting room crying into her cup of blood?" He never could find my file so we had to start a new one.
I just hate going into the hospital anymore because they don't take care of me as good as I do at home. With them, my meds are always given late. They are always bothering me in the middle of the night. I can't do my midnight Ensures there because they can't leave enzymes by the bedside, which is complete bullshit. I've been doing this shit for 35+ years, I think I should be trusted with my own freaking medication. Same crap goes with my insulin. There's nothing like being absolutely starving, having your food come, and then having to stare at it for another 20 minutes waiting for the nurse to get there with both your enzymes AND your insulin. God forbid they forget one of those things too. It really is enough to make you rip your hair out.
I absolutely hate being second guessed by nurses too. If I refuse something, it means I REFUSE. Don't try to talk me into it or warn me about it, I know the consequences and repercussions. I AM A PROFESSIONAL PATIENT. I literally do this shit for a living. And just because you've "never had a patient do _____ before in all my nursing career" doesn't mean that there isn't a first time for everything. I administer all of my drugs and I access and deaccess my own port. I do all my own nasal and throat swabs and I place my own feeding tubes when necessary. When I tell you that something isn't going to work, like puncturing veins, I know what the fuck I'm talking about because I have lived with these veins for a LOT longer than YOU have. If you have some weird way that you like to do things because "it always works" for you but it makes me nervous and I can already tell that it's NOT going to work, then we aren't doing it your weird way. Especially when it comes to my veins. You get ONE try. If you start digging around in my arm, you are FIRED, and you better go get someone who's better than you, you know, like a PHLEBOTOMIST.
Nothing against my nurses, most of them are awesomesauce, but there are the random few that just ruin it for everyone. If I were ever to become a speaker in regards to Cf, I would speak to medical professionals about their bedside manner and how to interact with professional patients.
Anyhow, I survived my 6 days in-house, and now I am home doing home IVs for the next week. Since my lungs are so crappy, I can no longer do the Vest, which is what I used for airway clearance. I got this cool new device called a frequencer, it basically shoots low vibration sound waves through your chest. It's pretty awesome so far. Unfortunately, I only have it for about a week, as they are trying to prove to my insurance that I need this thing because I'm pretty much out of other options. So this one was loaned to me by the rep from the company. It's so small and quiet, I want one so bad!
Sadly, along with these embolyzations seems to come the most horrific chest muscle/nerve pain I have ever felt. We don't really know if it's related to the embolization or not, but it's debilitating. I can't even take a deep breath (not that I really can anyways). It's is the same pain that got me kicked off the list at Stanford that they refused to medicate me for. At least the docs at UCSF are more understanding and are willing to treat me properly so that I can work through this and get past it.
I'm going to start rambling now, so it's time to go. Love to you all. :)