She told me NOT to bring ANY of my drugs in with me, that they would be taken care of AFTER my procedure.
I barely even know where to begin with this. I'm SO upset by the lack of communication between the liver team and my Cf team about what was happening with me that I don't even know who to be mad at and why.
Ok, so, to start, I'll tell you what was SUPPOSED to happen. I was scheduled for a vascular liver biopsy at 9am Wednesday morning. A vascular liver biopsy basically means that instead of the old fashioned way of biopsying the liver by jamming a large needle between the ribs, they can now go in through your jugular vein and access the liver through the superior vena cava.
Sounds fairly simple, as far as procedures go. The whole actual procedure should be done in about ten minutes. More time is spent prepping than actually DOING the job.
In order for ANYTHING to go near my jugular, I NEED to be sedated. We found this out the hard way with my most recent attempt at a heart cath. I have such a bad panic attack that I can't stop heaving. Note: with a heart cath, they can't sedate you because they are measuring the strength of your heart and sedation changes the way your heart behaves, ergo a false reading.
Now, being that my disease is so advanced, putting me under general anesthesia is not an option. The next and only time I will ever be able to be put under completely will be for transplant. That being said, my options are slightly limited. I have to have what is called "conscious sedation". This is so that they can ask me to do things and I can understand enough to comply to commands, such as "turn your head" or, as I had to do with the liver biopsy, "take a deep breath and hold it in."
The usual cocktail for "conscious sedation" is generally a combination of Versed and Fentanyl. Versed is a benzodiazepine, a sedative with hypnotic, muscle-relaxing properties. Fentanyl is an Opioid pain killer. So basically, I'm sleepy and can't feel much.
I've had this cocktail before. Last September, when I had to have both lungs embolized. It worked WONDERFULLY, as I do not remember the procedure, nor was I in immediate pain FROM the actual procedure (that would come later).
If it were in my power, I would give a serious negative review for MANY people involved with what happened to me yesterday. That being said, there were also many people there who were just trying to do their jobs and were kinda thrown in the situation the same way I was.
I woke up super early so that I would be on time for this appointment. I wanted to get it over with and get back to my hospital room so that I could heal and get the hell out of there. My biopsy was scheduled for 9am. I arrived at the hospital at 7:45am. You would think this would be enough time, right? I sat in admissions waiting room until almost 9am. I was a little worried because nothing had been done except they scanned my insurance cards.
FINALLY, transport comes for me and we head to the I.R. floor (Interventional Radiology). I get changed into a gown and go into pre-op/post-op. I meet my nurse. Her name is Anne, she is Russian, and has the demeanor of a Russian Drill Sergeant. She ascertains that I have a port. I tell her that I will access my port. She says no. I say yes. She says that only she can access my port. I tell her that only I can access my port.
**crickets** **staring and long silence**
She then says okay, but in her MANY MANY years of being a nurse, she has NEVER encountered a patient that accesses their own port. I tell her that I am the only person who has EVER accessed this port, even the day that it was placed. I have a fairly old port, it is almost 6 years old, I have ZERO margin for error. If I were to let someone else access it and they screw up, I would literally have their head. If I am the only one accessing it and it gets screwed up, I am the only one to blame.
So, Ann doesn't like me at all now, and it's obvious in her lack of communication and anything to even do with me from that moment on. Wonderful. I overhear someone come in the room and ask if I'm ready to go. Of course, I wasn't because I still had to access my port. I get it done and literally sit there for an hour, waiting for someone to take me somewhere or even tell me what the hell is going on. Nothing. FINALLY, around 10:30a, I get wheeled into the O.R.
I meet with the radiologists that are going to be doing the job. I meet the anesthesiologist. Seems like a nice guy. Sidenote: I love how San Francisco is such a melting pot. One nurse was an old American lady, the other was a young Vietnamese guy, my radiologist was British, and my anesth. was German. Not to mention Ann the Russian Drill Sergeant.
To the point: I FELT EVERYTHING. They put lidocaine in my neck to numb it so they could insert the tube, FELT ALL OF IT. I felt the tube sliding in and even kinda "sticking" on my dry skin. Perhaps I should have mentioned that Lido only works on me for a VERY short period of time. I'm not remembering much about what's happening around me, but I remember all the feelings I had. I remember German guy asking me if I was okay and if I could feel anything. I remember crying and telling him yes. I also remember crying when they were either putting the tube in or pulling it out, telling them that I feel it in my neck and I feel it going down. I eventually even felt the pain in my liver where they took the three samples from. THAT pain went away quicker than the neck pain.
I don't remember them putting the bandage on my neck, or being wheeled back to the post-op room, but I remember waking up in there with such a horrendous literal pain in the neck. I was crying, actually sobbing and holding my neck because it felt like if I didn't hold it in, it would explode.
I looked over at the woman laying on the gurney next to mine. She had this look on her face like "holy shit, what did they do to YOU?" which was then followed by the "glad I'm not in YOUR shoes" look.
They called in the docs and told them what was happening. Apparently, they had given me some Propofol and Fentanyl in the O.R. After getting back to post-op recovery room, the nurse gave me some more Fentanyl because of the amount of pain I was in. It didn't seem to be working. And this is all given intravenously, so efficacy is immediate.
The nurse called the doc back in and I was still wailing in pain. Out comes the Dilauded. Holy crap does that stuff ever have an immediate body-numbing effect. You literally feel it overcome you like a wave. Sadly, it dulled the pain by about half, but not all the way, which is fine by me. I was sore, but not sobbing in pain anymore.
All of this happened around noon. I sent my first text to Mark at 11:54am. I have no idea how long I laid there wailing, but I don't think it was too long. Sadly, I would wait in the recovery room until 4pm before they decided to move me to what's called "Limited Stay Unit." Basically, for people that only need to be observed for 24 hours.
This is the part where I really start to question what's happening to me and why. The LSU is a ward-type setting; a giant room with beds all separated by curtains. Anyone with Cf will tell you that we absolutely CAN NOT be put in this type of setting. We are ISOLATION ONLY, due to our increased risk of catching infectious bugs and diseases. Someone forgot to mention this to ANYONE I spoke to yesterday.
A doctor from the liver team came and spoke to me immediately after arriving there and I asked him why I was being put here and told him that I need to be in a private setting due to the risks involved. He had absolutely NO CLUE what I was talking about. Apparently, he didn't even know that I had Cf. At least, he acted like he didn't.
By this time, I'm getting pretty irate with all the shit that's going on around me. I've already had to go over my med list with about 6 different fucking people, AND, I had been ordered not to have any food after midnight the night before the surgery. So, when I woke up that morning, I didn't get to have my coffee. I didn't get to have ANYTHING. Even after the procedure, I was only given 4oz of apple juice and 4 saltine crackers.
Mark got off work around 6:30p and I had sent him a text, telling him that I desperately needed food and asking for KFC. My wonderful knight in shining armor brought me up two bags of food around 8pm last night.
So, I'm sitting in this "ward" and no one is able to do anything for me. I had been told NOT to take any of my oral meds, and the last breathing treatment I had was at 6:30a. that morning. I have some meds that require me to take them at the same time every day for efficacy issues, such as my long-acting insulin. I didn't get ANY of these things there.
I end up not being moved to a private room until 8:30pm. So, I sat in the recovery room for 4 1/2 hours, and the ward for another 4 hours. I finally get to my room and it's more of the same shit with the next round of people. I'm not allowed to eat the chicken I just got until my blood tests come back, and even when they did, the fucking liver team orders a NON FAT DIET. For a Cfer. WHAT THE FUCK? Seriously.
I looked at the nurse and I told her that I am eating my goddamn chicken and if anyone has anything to say about it, I'd like to see them come in here and take it from me. She was a cool nurse and very empathetic. She kinda laughed at that when I said it. I was completely serious too. It had been more than 24 HOURS since I had eaten, and unless you are supplying me with some sort of other nutrition (IV or feeding tube), letting a Cfer go that long without food is dangerous, for their health and mine. I know for a fact that I lost a few pounds because of that shit.
On top of it all, I basically had to BEG them to get a respiratory therapist to come give me a simple treatment. Something that I am supposed to have every four hours, was done at 6:30am and 9pm.
And the doctors wonder why I tell them that I can take better care of myself than the hospital can. At least I would have administered my meds and did my treatments on time. This possibly cost me some lung function, not to mention being in a room full of other sick people, separated by nothing but a few feet and half a curtain.
Worst night of sleep in a hospital in a long time as well. People wanting to come in and check my freaking blood sugar every other hour. Someone opening my damned door to "check on me" every hour. The room I had was directly across from the rooftop that seemed to contain everything mechanical the entire hospital needed, making it sound like someone was warming up a jet out there. Serious neck pain and the feeling that every time I cough (which was often, seeing as I hadn't had a damned breathing treatment) my freaking neck was going to explode.
And the icing on the cake? My stupid tv didn't even work. So I couldn't even relax and just get lost in a program for a while, or learn about the day's happenings. Both my phone and iPad were either dead or dying, so nothing to do there. I just decided to lay down and try to go to sleep, but even the people there didn't want to let me do that. What sucks is that I wasn't even on IVs, so the nurses had no real reason to come into my room other than to look at me and make sure I was still breathing and not bleeding all over the place. Then, some freaking nurse's aid came in at 12:30am and wanted to get my weight. I told her that they got my weight when I got there and to get the hell out and stop bothering me.
How the fuck do they expect people to heal if they won't let them rest??? This is one of my BIGGEST complaints about hospitals. They have all this "protocol" to follow and someone gets the ingenious idea to add something ridiculous to that list every year, or so it seems. One of the most recent is that they have to check on the patient once an hour.
Tell me how badly that would bother you if you had someone come in EVERY HOUR and ask you if you are okay and if you need anything. Why even have a call button? If I fucking need something, I will call you.
I can understand having this in place for people that need it, like people prone to falling, or those that are REALLY ill, but for a Cfer, this is definitely NOT ideal. If I were THAT ill, I'd be in the ICU. Until then, leave me the fuck alone.
Sorry about the cussing and the rant, I've just had a REALLY horrendous 30 hours. And I don't know why I even bother calling Yellow cab. Unless you schedule a pickup online a day in advance, their drivers seem to have NO CLUE where anything is. That's another rant that I won't start.
My poor pup Luna had to spend all day by herself. Mark had worked from 6am until 8pm, and I had left at 7:30am, so she was home for over 12 hours by herself. She did end up stressed out and pooped on the area rug, but thankfully, this was the only surprise she left us. She's not destructive, and she has plenty of toys to play with. I found out that when she's here alone, she basically runs from room to room looking for us.
She literally exploded last night when Mark came home, and today when I came home, she was so excited that she couldn't even breathe. She must've thought I died or something. Pee and fur EVERYWHERE, just flittering around me and scratching at my legs, trying to climb up them. It was instant puppy attack.
So, thanks for letting me rant about my horrible experiences. I guess that the procedure went just fine and we should have results back in the next 48 hours or so. Crossing my fingers that my cirrhosis isn't as bad as we think and that I WON'T need a new liver!
Love to you all :)