In the hospital

Hi everyone! Well at this time yesterday, I was pretty much unable to function... but right now I'm doing alright. I thought I'd take the opportunity of feeling ok to let everyone know what's been happening. If you don't want to read all about it, then I'll just cut to the point and say I'm doing alright just in quite a bit of pain. But if anyone wants to know or any other MG patients who haven't been through line placement or plasmapheresis before, this will give you a good idea of what happens.

I arrived to the hospital yesterday around 7:30am, had to wait a little bit to get to my room but not nearly as hectic and stressful as expected. After arriving a billion different doctors kept visiting making it well apparent I was at a teaching hospital. The worst part was being unable to eat since dinner the night before. I get really weak really quick when I don't eat. But I wasn't allowed to until after the line placement. Finally they came to get me for the line placement shortly after noon but I laid down in IR for hours. Apparently it was an extremely busy day for them. I was told all along I could ask for sedation if I wanted it. Well I asked, and asked, and asked, and finally asked saying I didn't not eat this long for nothing and was told ok. So glad I was persistent. It was not exactly a comfortable thing to go through.

I didn't get the sedation until after all the prepping. Now I've not had a surgery since I was 4 or 5 years old so I've not been through all this. They laid me on this table, put on a sweet hat, had me turn my head, ultra sound the area, taped all these cloths and stuff around one exposed area of my neck/chest, cleaned it, had all the equipment out in site (scary) then made me feel claustrophobic with some machine just a few inches above my head. Then they gave me the sedation so that I got tired and loopy but didn't fall asleep. At that point I was half terrified half thinking it was funny (sedation). I told the doctor he had to tell me every single thing he did LOL. Injecting the lidocane multiple times in the neck wasn't pleasant. After that I felt weird sensations and swear I could feel the line moving through me but I don't know. The thing that made me most queasy was feeling him stitch me up after.. I didn't feel it like pain but just the sensation of threading or something like that.

So then it was over and I was still numbed up and out of it from sedation. I started laughing at basically nothing and was telling the nurse how to help me from the table to the bed and asked her to lift my head up for me. I do sometimes need that because my neck is so weak but I think at that moment I was just having fun with it because of the sedation lol. I got back to the room where the plasmapheresis doctor was talking to my parents. He said they could do it right away and I shook my head no. I kept telling him I was sedated. I really loved that sedation lol. So he said alright we'll do it tomorrow and I gave him a thumbs up and a smile haha. I told my parents not to pay attention to anything I say that seems weird.

Well then the numbing started wearing off and pain setting in. And the weakness was horrible. I think I got a little droopy eye for the first time... that's the one MG symptom I've luckily not had yet. Sedation can make MG worse so they have to be extra cautious. They had my meal waiting for me but I had no strength to eat. Now this I don't even want to say, as this hasn't happened since I was a kid, but my mom had to feed me :( And it took me forever. I remember the doctors coming in and asking if I was going to eat with the food still in front of me and I told them I had been, and it felt like I had been eating for an hour already. The pain got really bad. One thing I wasn't prepared for was this amount of pain after the line placement. If it's this bad for this I can't imagine what I'm going to feel after the major surgery. They have me on pain meds round the clock but it's still pretty bad.

I barely got any sleep, literally if any at all, last night. The pain, the new environment and the fact that the el blasted by what seemed like constantly kept me awake. I'm a light sleeper so I brought my ear plugs and eye mask and even that didn't allow me to sleep. This morning I was still in a lot of pain and weak. I definitely had gotten worse so far rather than better, but to be expected at that point. So then the big plasmapheresis machine came in. That by itself is a little nerve racking. But the doctor and nurse were awesome and went over the process in detail with all risks and explained everything every step of the way. Loved my plasmapheresis nurse! So she hooked everything up and before I knew it my blood was going out and already coming back in- minus bad MG part of the blood! I couldn't have asked for a better first plasmapheresis treatment. The only issues I had was tingling in my hands which is a sign of too low calcium so they just added more calcium into the blood going back in me. And 2 hours later (so much shorter than I expected since my IVIG treatments took foreverrrr like 9-14 hours!!) I was done!

I was told not to get up for a while after except being helped to the bathroom because you can get weak after treatment, so I had to rest most of the day. But I'm feeling better than yesterday for sure. I don't think I'm better than I was entering the hospital, but the pain from the line is really swaying the results on that. The pain is not just at the sight but going up my neck, down my chest, down my back and my shoulder and arm. It's also a stiffness feeling. So it's really affecting my movement and ability to tell how much this first treatment helped.

The treatments were supposed to be every other day but they only do them on the weekend in case of emergency so in order to still get 3 treatments in this week they are going to do another treatment tomorrow and then one Friday. It still depends on how I do and won't know for sure til the time comes, but right now they are talking about my last treatment being next Wednesday, with line removal on Thursday and probably being discharged (just in time to be home for my birthday!) home a few days before surgery. I'm torn on that though not worrying about it since I can't determine it. Getting to go home means I can get some decent sleep and shower normally without plastic covering my line and being extra cautious. But of course that means having to pack everything up then bring it back, and being readmitted, and of course my biggest concern of those extra days of making absolutely certain I don't come in contact with anything that can weaken me in any way. Only time will tell.

Overall, it's been fairly smooth. For a teaching hospital, it's a lot less crazy than I expected. I got my private room without any need to argue for it lol. Apparently they go off medical history and mine says it's a go! Yay! The worst is just this ongoing bad pain from the line. But because of this I know I want to be very clear with my surgeon that I'm ok with whatever pain meds he wants to give me for the major surgery. I hate taking medicine but I also hate being in pain to the point of being unable to eat on my own.

If anyone wants to visit just try to check in with me before. Just want to make sure I'm up for it and you aren't just sitting here watching tv. Thanks for reading! Writing takes my mind off everything for a bit. Hopefully I keep getting better from here! That's the goal!