Hemodialysis....it's just as bad, if not a little worse, than I remember..

It's Sunday morning as I write this.  I'm sitting here at the kitchen table where it's quiet.  Joacim is still sleeping and Izzy is still at a sleepover, which is all great because I feel just crappy.

One week without plasmapheresis is making a big difference, even though I've had 2 dialysis sessions so far.  Now that I'm not getting the regular infusions of albumin that I was getting with plasmapheresis, I'm starting to retain fluid ... quickly.  I've gained 5 kilos since last Wednesday, and today I feel like I'm drowning again.

I'm familiar with this feeling, and the associated panic that starts to set in my brain.  It becomes this weird shitty game where I lose every time.  I've stopped drinking the 3L of water a day I was drinking while on PP because I knew that we were't going to pull any extra fluid off during the first 3 dialysis sessions, so pretty much most of what comes in my body stays in my body.  I even gain a little during dialysis right now due to saline, so that's also adding to it.

I'm vacillating between anxious and nauseous and full-on panic, and it sucks.  I'm hungry, but waves of nausea make me cautious.  I need to take my morning meds but I'm trying to get some food down so that my blood pressure medicine doesn't make me vomit.  I have a chronic sinus infection that has, once again, moved into my chest  for a full on crackly chest cold.  This isn't living.  But it feels as if this is going to be my normal, and I'm having a hard time accepting that.

I reached a new low on Friday after dialysis.  I had a newish friend drop me off and pick me up as I can't really drive home after the session is over (yet).  I did a 2.5 hour run at 250ml/min (so a bump of 30 minutes and 50ml/min from the 1st session)  The first hour is usually okay, but my blood pressure starts to rise at the 2nd hour, and continues to go up and up and up.  When I got off the machine it was 190/120.  I don't know if anyone's ever experienced that, but it feels awful.  I was dizzy, sluggish, had a migraine, and felt like my head was just full of fluid.  I had been taking my BP meds at 9am, 3pm and 9pm, but since BP meds dialyze off, I've been instructed by the clinic to not take the 3pm meds because they don't want my pressure to drop too much (which won't happen but that isn't something I wanted to fight on Friday), but to take them after the run.  Sounds great, until I actually have to do it.

So I did this on Friday ... no BP meds before the run ... get off the machine at 190/120 and then take the meds.  I didn't want to take them right there at the clinic because my stomach was empty and I wasn't feeling well and I knew there was a chance that I'd throw up from them, but I took them anyway because I didn't want to be labeled non-compliant right away.

My poor friend ... I'm not sure if she knew what she signed up for when she offered to pick me up.  She walked in right as I was getting my stuff together, and I was having a panic/crying attack because it just felt so awful, and I imagine it's really hard to see someone you like going through what I'm going through....like actually WITNESSING the panic.  It's uncomfortable and weird and a very strange way to get to know someone.

I was getting hot flashes so it felt good to walk outside.  She helped me in the car with all of my stuff and we headed home. I don't feel much like talking after dialysis, and it was a pretty quiet ride but I could feel the hot flashes getting worse.  And then I could tell that I was going to throw up.  It's literally 8.3 miles to my house from the clinic, but it felt like a lot longer due to hitting every red light on the way.  She rolled down the window for me because I needed a blast of cold air to try to slow everything down, but it didn't work.  In the end, I had her pull over on a busy highway with no shoulder (only a guardrail) so I could vomit.  It was in my hair and on my coat, and my body worked SO hard to get that pill out of it that it was the literally definition of gut-wrenching.  And embarrassing.  I mean imagine...it's 6:30pm on a Friday night, lots of people are driving, and I'm standing on the side of a highway with a newish friend throwing up outside of her car.  I had to drive by the scene of the crime yesterday and take a picture.

I was so embarrassed yet I knew that there was absolutely nothing that I could've done to stop it.  She was so kind though....she got me home and into my house and stayed with me until Joacim and Izzy made it back home.  I felt better after vomiting but the migraine was getting stronger so once my friend left, I headed up to my bedroom, took some migraine meds and laid down.  I kept one small light on but no sound, and laid there for 2 hours waiting for it to subside.

Slowly, it went away.  I started to get hungry so Joacim (sweet man that he is) brought me something to eat (fried chicken, mashed potatoes and gravy from Lund's ... my favorite) and I was able to keep it all down.

I was so scared that the migraine was going to come back that I just stayed in bed the rest of the evening and because more horrified and anxious as I watched the news, so I switched to catch up on some DVR recordings.

I think I ended up being in bed for 14 hours overall, and woke up Saturday morning to this face

Great.  We're back to puffy face.  When my eyes swell like this, all of the fluid in my eyelids leaks out all day, so it's a day where my eyes are CONSTANTLY watering with a thicker than normal eye mucous.  So fucking annoying.  My sinus infection isn't helping at all.  

I have multiple things to tackle when it comes to making this better:

1. fluid balance - this will take time, and this is the one I'm LEAST patient on because it feels icky inside my body.  Once we start pulling extra fluid off, I'll have a better idea of how this will go.  I still take a diuretic but it's a pretty low dose.  On the flip side, pulling off fluid is usually a much harder run, physically, and I'm pretty sure I'll vomit.
2. blood pressure - we were limited with BP meds prior to dialysis due to potassium issues, but that may not be as much of a problem now so hopefully we can play around with them to get my BP lower overall and hopefully change out the one that frequently makes me vomit (labetalol).
3. chronic sinusitis - I think I need to go see an ENT for this one as I've had this since the beginning of November.  I'm now also having trouble with my Eustachian tubes, so my balance is a bit off and my ears are plugged 70% of the time.

I'm told that my new nephrologist will be at the clinic tomorrow during my run, so we'll have lots of things to cover.  I'm going to feel even more awful tomorrow because I'll add another 1-2 kilos on today probably.

I know that, eventually, I'll get this all sorted out, but it's so fucking hard to wake up in my body every day.