(warning, possibly graphic images are posted here) I realize that some of you are going to gripe at me about this–lecture me about how I should have done this differently, and you mostly certainly wouldn’t be wrong. But before anyone tells me that I should have made better choices, I do need you to understand: This isn’t a normal situation. This isn’t like a normal person who only gets sick once in a while and then something major happens and you, of course, go to the ER. With me and people with severe chronic or life-threatening diseases, there are two changes to how we go to the ER. First, we go more often than ordinary people for some things, because the little things that don’t bother you much at all when you’re stronger bother us a lot worse. And the second is, we often don’t go to the ER for things that might usually send you to the ER.

For example, chest pain is a normal experience for me. I have PH. My chest is going to hurt. There’s really nothing I can do about it. If YOU get chest pain, you should go to the ER immediately. If I get chest pain, I have to consider if it’s the same kind of pain I usually get or if it’s a new pain or changed any before I go, otherwise, I’d be there a couple of times per day. Plus, chronically ill people have enough medical appointments and stuff to deal with, we try to avoid adding any extra whenever we can do so.

That said, I do realize that a person who is on coumadin (blood thinners) should probably have gone to the ER sooner than two days after a nosebleed started and wouldn’t stop. I get that. I do. But a it’s a nosebleed. I mean, it’s a children’s ailment, a rarity for an adult, and usually it doesn’t last long. It goes away in a few minutes. But somehow, the few minutes turned into hours. Then the anxiety grew about how they would comment on how I should have come in earlier and then that delays me wanting to go and then it just gets worse and worse from there.

But I did eventually go. I took a shower first, which was interesting. I couldn’t hold my nose while I was showering, so I watched as pale pink and red water ran down my chest every time I rinsed my face off. Ugh. There was a lot of blood. I know you’re thinking, “Nah, it just looked like a lot,” but I have the medical records–it was a lot of blood.

So I finally, when I blew out a blood vessel in my eye, I figured it was past time to go in.

We got there, and the guy walked us immediately to the triage area, where we got checked in fast. They immediately took my bleeding self back to the same room 108 in the ER that I was taken the first time I ever went there, back when I had the PEs.

 

The first thing they did was insert the IV, as always, so they could draw some blood–like I didn’t have enough of that to go around. I asked them if they couldn’t just hold the tubes under my nose and take it that way, but they said no. Hey, I thought it was a good idea! The bad part about the IV was where they put it. It was on my wrist (see picture) and it ended up blowing on me, so I have a huge purplish bruise on my wrist right now. Ugh.

So next the doctors came in, and this is sort of where it starts to get funny. No one knows what to do with me. Because I’m on blood thinners, they can’t do the septal button. Because I’m on oxygen, they can’t to the silver nitrate to cauterize it. They can’t get the blooding to stop any more than I can. So this doctor makes this little contraption–with tongue depressors and tape. Seriously–he said it works and would let me rest my hands, since I’d been holding them up to my nose and alternating for two days.

Here’s what that looked like–this is seriously funny, so it’s okay to laugh. I thought I looked like Pinocchio.

But the thing is, for a short time, it seemed to work. As you can see, I have my oxygen cannula in my mouth, since I can’t very well stick it up my bleeding nose. So there’s these sticks on my nose, holding it together and applying pressure. There’s still some blood dripping from my nose, but it’s mostly staying shut and slowing down. They take the stick off in about 15 minutes, and they think, OK, it stopped–yay! Until I bent my head forward and this huge, and I mean like as big around as a softball-sized clot of blood comes out of my nose and splats, and then it starts gushing again.

Sigh.

While I had this thing on my nose, though, there was blood draining down the back of my throat and they didn’t want me to swallow it since blood in the stomach can cause puking, so instead, they gave me this suction thingy to suck the blood out of my throat. Uhm, do you know how far back post nasal drip is? This thing was weird… but it did help, strangely enough.

So they then bring in, ready for this? A bottle of Afrin. Yes, they actually believe that Afrin is going to stop this massive nosebleed. So I squirt it in one side two squirts and squirt it in two sides, two squirts. I can taste it in the back of my throat on one side but not the other–so the nurse says, “Let’s make sure we get it in there.” She tilts my head back and then squeezes the bottle and DRAINS that sucker into my nose, down my throat–my god, she’s lucky I didn’t puke on her!

But still, the nose wouldn’t stop bleeding. And there was so much blood, they couldn’t even tell where the blood was coming from.

So finally, around 5 in the morning, they had to call the ENT who was on call, paged him and woke him up, so he could come in. The bring in this tray–and I learned a fancy word: epistaxis. That’s the fancy word for noseblood.

So they bring in an epistaxis kit, and I feel like they are about to do surgery on me right there in the ER! It was a little scary. However, the ENT doctor was the same doc I had met when I went to the ENT about the sinusitis and minor nosebleeds before, and we just adored him. He’s super funny and makes it a lot less painful to need medical care. He not only had been awakened to come in and take care of me, but he wasn’t even supposed to be on call-and yet, he was happy and joking and chipper and just really a nice guy who seemed to care a lot about my comfort and my situation. He had read my chart before I came in and new things about my clotting stuff and all that. Really impressed me and made it easier to calm down.

So he opens up this kit–and it comes  into the room all wrapped up and taped to show it’s sterile. You can see it in the pictures, and inside are all these medieval metal torture devices. No, you don’t understand–THEY LOOKED LIKE TORTURE DEVICES! So then he put a towel on me, then he draped me with absorbent blue cloth drape, then he got his little thing on his head with the light and he wanted to USE those torture devices on ME.

He did a lot of exploring and pulling gunk out of my nose, and he found where the bleeding was coming from. His next step was to put this super-absorbent dissolving foam made out of this celluloid stuff into my nose to pack it. The foam was several inches long and he cut it into thin strips. While he did that, he had sprayed my nose with this stuff that was supposed to make it numb. Only problem is, the huge blood clots in my nose didn’t let the numbing stuff go all the way up in there, so when he started shoving things up into my nose, I felt it all full force. Soooo, cleaned out the gunk from my nose–a blood clot the size of a baseball comes out of my nose (you think I’m joking–I’m not), and then more spray up my nose. This time, I can taste the really nasty tasting stuff in the back of my throat, so he knew it made it all the way through.

And then he proceeded to shove the packing up into my nasal cavities. Everything was sort of swollen and icky and I felt all stuffed up like you would if you had a cold. It wasn’t a pleasant feeling but it wasn’t painful or anything either. He then prescribed me some very high-dose antibiotics, because he said, “With that packing in there, we’re going to give you sinusitis. Might as well head it off.”

Lovely.

But at least for the moment, the bleeding was stopped and I was feeling a lot better about things. I had to rest there and wait for them to make sure there was no more bleeding and make sure there was no reaction to what they did to me and all that, and then I got to finally go home.

The dissolving foam stuff is actually kind of cool. It keeps you from having to go back in and have the packing removed, which I’ve heard can be quite painful, since they can’t numb anything before removing the packing. However, when the stuff started to fall apart and was starting to come out, it came out in big gooey clumps and some of it wanted to come out down the back of my throat while parts of it were still stick in my nose. It was hitting my gag reflex and I couldn’t get it to go up and out or down and out–it was totally gross, I ended up puking and then it all finally blew out through my nose. It was disgusting. You’ll be grateful to know I did not take any pictures of THAT.

Most of the packing has now come out. My nose is in the process of healing. There’s still some bleeding, but it’s just small amounts now. And I did end up with a roaring case of sinusitis just like he said. Still taking antibiotics for another 5 days or so, so that should help kick it all out. The antibiotics sure don’t help me feel good though–these suckers are strong and oogey making.

THE SAD PART

But as much fun as all that was, ha ha, the sad part of this is that I was told I could never wear a nasal cannula for my oxygen again, ever. In fact, I believe his exact words were, “never again, never ever, never, ever, ever again.” Which might have made me laugh, if it hadn’t been me he was saying it to. The only other option is to wear a mask. And it’s nearly impossible to function with a mask. Those of you who wear CPAP masks to sleep at night, or know someone who does, imagine having to wear something similar to that, all the time, during the day, even when you’re awake. Imagine trying to talk on the phone, move, eat, have a conversation or go out in public with a mask like that over your mouth and nose. That is what he was telling me I had to do now.

I’ll talk more about the mask and stuff later. For now, this is long enough and I’m going to post it, ’cause I’ve been writing it for something like four days now and if I keep writing in it every time I FEEL something about what happened, I’ll never post it.

The important point is, I didn’t bleed to death, the ER doc was pretty nice, my nose finally stopped bleeding, and I’m home again as safe and sound as I ever have been.

Thanks to everyone who put up with me whining on my Facebook statuses about my nosebleed. I know that’s not the most pleasant thing to read, but, hey, yanno, that’s my life.

Love and bloody stuff,

Michy