So things that went badly - I think I mentioned I tried to double check about meds. Basically, I wasn't supposed to bring any of my usual pills. Normally someone wouldn't bring the mouthwash and pills my hematologist prescribed, the hospital would take care of that, but it's not how my hematologist arranged it.
I was told that as soon as I got where I would be they would take the mouthwash - it really needs to be refrigerated as much as possible. Didn't happen. I wasn't thinking when I first arrived, lots on my mind, but I remembered after changing into a gown.
I wasn't supposed to be on steriods. I discussed this with my surgeon the last time I saw him in his office. The nurses said he ordered it when I was in the general area - no doctors there. They said it didn't need to be started, it could be done in the OR after I talked to the doctors. Great!
Got onto the thing to be wheeled up. I requested Chemguy come, to help advocate about the berinert & other stuff. No, although there is a very area with chairs on the OR/recovery floor, normally people wait in the cafeteria, but due to my circumstances they got him there instead. Issues with getting my mouthwash to come, as someone had thrown down the box of the IV solution and the guy wheeling me thought that was it. Normally nothing comes up, but in my case I had the IV solution, mouthwash and my whole berinert lunchbox case thing coming with me.
Get up to the OR area - annoyed to see they let one person come up with some elderly patients. Surgeons/anesthesiologists need to ask questions. I don't know why Chemguy couldn't come to this stage, I wanted him there as I hadn't even met my anesthesiologist and I wanted help remembering asking about berinert, throat check, etc. but I was alone from then.
Saw my surgeon, asked about steriod he said yep, we wouldn't use it. Asked about berinert and who administers after surgery if problems as I had no answer - he said nurses, but the pharmacist would mix it as the hospital pharmacist would take the best care that way. Anesthiologist came in, I asked about him double checking my throat, ok verified - discussed other prophylactics quickly. I had the least talkative one out of all the people who were there. He went up behind my head, I couldn't see what he was doing. Saw my IV drip. HE GAVE ME THE STEROID! Had that stopped once I put 2 and 2 together, it probably dripped in for about 1 minute before I had that stopped.
They didn't do anything with my hair until I was in that OR area, I had hair elastics and pins but no personal belongings could come up. They didn't want anything in my hair before I went up either. My hair was fixed multiple times in the caps. Wheeled into the actual OR - had to be fixed multiple times there too. It never was completely out of my face and they gave up. Minor issue, but annoying.
I couldn't really tell what had been in my IV. I had been given either the berinert or the other med. Hadn't used the mouthwash yet. I was asked to take a few deep breaths of oxygen, I figured they wanted to get my O2 sat up before the mouthwash was used. Nope! Liars!!! I started to go under without my mouthwash. I was fighting against the mask and the person just held it harder. I think she thought I was scared of going under, but that wasn't the problem, I was scared that the mouthwash wasn't going to be used. That was the last thing I recall before I was out.
The first thing I remember waking up was intense burning in my throat, the worst sore throat of my life. I struggled to wakeup ASAP so I could communicate HAE attack. Good to know that when I'm bordering on consciousness my first lucid thought is about my condition. As soon as I was able I communicated with the nurse watching me. I made noise (huge guaze pads in either side of my mouth) and tried to communicate with my hands, she gave me a pad & pen thankfully. I wrote something like Throat burns badly - HAE or normal? She said it was totally normal. I found out that yes, the anesthesiologist had looked at my throat at the end. The mouthwash was given when I was unconscious. I'm supposed to rinse for a minute & swallow it, so I have no idea how that was achieved. They wanted me to take deep breaths from the oxygen clipped to my nose. I had to stop my claritin and my nose was totally congested. They allowed me to blow my nose a few times, but it was no where near enough to breathe throw my nose instead of mouth. I did find out all 4 teeth were taken out. HAE was being described to another nurse, by being told a 'bump' makes me swell - so no one there really understood how often/frequent/randomly triggered my attacks were. Other people were in the room, not sure who was there first, but I definitely seemed to be the most alert and I have a suspicion that some where there well before me.
I'm really annoyed that 2 lies caused me panic for my last and first thoughts surrounding surgery. If they had told me they were about to put me under I could have had the chance to ask about the mouthwash - simple (although still a little weird IMO). The lie about zero throat issues post-surgery caused me a huge amount of stress - I'm debating about whether this is an issue I wish to raise now. Even after being told what I was experiencing was normal I was still worried about my throat, although not in a panicked way.
They rolled me into the room where I spent the rest of the hospital stay. MRSA was negative, so not ICU, but I didn't get the private room like I requested (not guaranteed despite it being $180/night), nor was it semi-private. I went past Chemguy on they way there, so he quickly grabbed all the stuff and followed even though they didn't say a thing to him. He got to come into the room pretty quickly and he pulled out a pen & notepad so we could communicate. I finally felt safe - if I was having an attack he was now there to make sure I got my berinert.
I was relieved to get some ice water. Once the guaze pads were out I was eager for a small sip, to help judge throat lumps. So I didn't even think about the straw. That's a rule to prevent dry socket - no sucking, no straws. So why do they give someone who's mind isn't 100% as they have just had surgery their water in a cup with a lid and straw? I don't think I did any damage as it's not like I was sucking down water like crazy. As soon as I realized what I did I tried to take the lid off, but it wasn't even possible, too much stuff on me and I was still weak. Chemguy did it for me.
Later after I had been drinking some water the pharmacist came in to discuss things. I could talk, but it was uncomfortable and I was still using the gauze. The pharmacist was clueless. She had no idea what Berinert was! Yet this was the person I had been told who would make sure it was all taken care of properly if I had an attack. She was also unfamiliar with other medications of mine, including really common stuff. The hospital didn't have things that I was told not to bring, because they would supply them to me. The most important here being my birth control pills - may not sound major, but hormones are a huge HAE trigger.
All of the medications I needed to take in the hospital were listed, based on the list I had written out numerous times, clearly, with doses. What I had written was transcribed, poorly, and they had things on there the internist at the pre-admission clinic to me not to take. Some of these meds were just things I take for a headache, but like asked I listed it all. At least now I was dealing with my nice nurse and not the pharmacist, she was as frustrated as I was I think. Asking me about my claritin, they wrote it as 5-120 mcg. It has 2 active ingredients, both of which I had listed. This was something I was told not to take anyway, due to the pseudoephedrine. For naproxen (again NSAID, not taking it in hospital) I had written it was 220-440 mg. They wrote this as 220mg/440mg. My nurse was confused and I just said I take 1 or 2 pills, depending on symptoms. Between the 2 of us we sorted out what I would be taking, what the hospital was giving me, and what was coming from my own supply (that I wasn't supposed to have with me).
If I hadn't brought my stuff, at least I know Chemguy could have gone home to pick it up. Not everyone has that though. Not everyone is as lucid as I was - especially after being under general anesthetic to go over this stuff. I am extremely annoyed by this. Also, I had 4 doses of berinert with me, as I stuck into my back what I could, without doubling things up as much as possible, as I knew they wouldn't like that. Ie. Each box is 500 IU, contains 1 water, 1 powder vial, 1 mixing system as well as a syringe & needle I don't use. I can fit 2 waters, powders, mixing systems into each when I remove the syringe & needle and product monograph. I still had to do this as I wanted at least 4 doses, and there was no way I could fit in 8 boxes, I tried. I just clearly marked which had 2. After treating my attack they actually called to the blood bank to have more brought up in case - it never came. If I used a 3rd dose I just decided Chemguy would bring more to me.
I got dinner the day of my surgery. Attacks make me hungry and they do want people to eat to help recover. They brought me a tea, pureed soup, milk, cranberry juice, applesauce. I had clearly listed low lactose diet (I do cheat at times, but never with straight milk, that's too direct and surgery isn't a time I want to tempt things). It didn't matter, and at that point they couldn't make a substitution. I was told I should have said so at the pre-admission clinic - I did! Again, something else I had no control over, being blamed on me. How was I supposed to double check this? To make things worse, the soup, which I let completely cool was too acidic. I tried swallowing a small, cool bit twice. No way, it was going to trigger another throat attack if I ate anymore. How was I supposed to plan for that when they told me no throat symptoms? When it's just HAE I don't have external irritation like I did due to the breathing tube. So I had no real protein source and the only food was applesauce. Chemguy was allowed to go to the cafeteria and buy me food at least, so he came back with a yogurt cup.
My nurse did call down and got my diet fixed for breakfast - except they didn't change it. Again milk, but at least I could eat the oatmeal and I knew I was going home later so I didn't care.
Other things were uncomfortable, but weren't mistakes. For example, my IV cart got crashed into when the guy beside me came in. My flip flops (bring something like this! otherwise barefoot to the bathroom - yikes!) got thrown around and I didn't realize it until I had to get up, one ended up on the far side of HIS bed. Everyone else in the room was elderly. Someone left around 11 pm, someone was brought in at about 3 am. Visiting rules were mostly ignored. More visitors were allowed than was stated, hours were ignored. There was a fair bit of crying from some visitors as someone's cancer ended up being too far gone - I felt really badly for them, tried to give as much privacy as possible but the stress was actually setting off my heart rate monitor numerous times. I understood when the wife of 3 am guy was allowed to visit for a bit, but she also came back at about 5 am, and they were not quiet. I got so little sleep, there was enough light for me to read all night, but one nurse needed a flashlight not just to read charts, but to flick it around the room whenever she had to walk around. The beds inflate - loudly every 5 minutes, maybe that's nice when laying flatish, but it was causing my back to actually arch considering how propped up I was to help with face swelling. Day nurse shut it off, it took some convincing but I got the nice nurse to get it off eventually too. I didn't have much privacy myself, even the visitors were older than Chemguy and I and while the gowns are fairly modest when closed once surgery occurred they could not be closed for monitoring. I was the only one who was not attached to a bladder catheter, I felt incredibly awkward first bathroom trip especially with all the men about my dad's age visiting in the room. Grateful I brought boxers that at that point I was allowed to wear (why not for surgery, I dunno, they force your entire gown back open so your skin is directly on the cold table). Then I only had to worry about the front top of my gown when moving with an IV pole, not the bottom portion too. I have a good list of things for someone to bring for something similar! It was amazing the double uses I found, like faceclothes preventing the circular ice pack from scrapping my chest all up, as it comes to a point at the bottom.
