I need to update about what's been happening the last week or so. The last post I made had me in the ER on a Sunday night due to problems breathing. I was discharged to go home that same night, had a crappy night of sleep and then dialysis that Monday morning (which would've been Feb 6th). That dialysis session was also quite rough, and I had one of the worst migraines I've ever had after that. I came home, went straight upstairs to my bed with my clothes on and laid there all night. There was just no relief. I took the Imitrex the last half-hour of treatment, and I took it again at 7:00pm, but by 9:00pm it was STILL throbbing and I was out of options, so I just sat there in my room, as dark as I could get it. I couldn't lie down because my lungs were so full of fluid that I'd just cough, which exacerbated the migraine. I can't remember being more miserable than I was that evening. I could LITERALLY hear the ceiling fan cutting through the wind and it was killing me. Times like that make it hard to see any good in anything. I got frustrated with Joacim because all I wanted/needed at that moment was for someone to take are of me...to know what my migraine medicine was and where it is without me having to provide every single detail. I just wanted a nurturing, caring home nurse who would attend to my every need. Joacim sometimes has a hard time with this because he doesn't know what to do, and he thinks that leaving me alone is the best thing. Sometimes he's right, but sometimes it feels uncaring. He can't read my mind, and when a headache is that bad I can barely talk, so I take what I can get.
That next morning I woke up and walked around the house and saw the sad, sorry state of affairs. When I have a migraine, time moves so fucking slow. Like I'm just trying to figure out how to get through each block of 5 minutes until I hopefully become so tired that I just pass out. But then I wake up (usually headache free) and it feels like I've been out for days. Maybe my head is finally clear enough that I can see how far things have deteriorated.
This picture is of our spare bedroom, where Joacim took up residence about 3 weeks ago. Doesn't look comfy, does it? But apparently it's a whole lot better than trying to sleep next to me, and I can't say I blame him. I sleep upright now and have been for the past few weeks because of the coughing, and most nights I only get 5-6 hours of sleep. Even when I do sleep, I apparently snore now, and it's loud. I'm embarrassed, but I believe it because I've woken myself up a few times doing it.
This is where I sleep. Notice the large volume of pillows (I think there are 5 of them there) needed to help get me through the night. The lack of sleep is not helping me heal in any way, shape or form.
Because of the snoring and the constant sinus issues I've been having, I made an appointment to see an ENT and it was on Tuesday. I'm greeted by this form, which I've mentioned before is just awful. Luckily there were a lot of check boxes that didn't require actual writing, because it's worse than ever now.
Along with the chronic sinus infection and bloody noses (in part due to Minnesota winters) and snoring, I've been having issues with the fluid in my ears. It feels as though my Eustachian tubes will never fully drain, and it leaves me feeling like I'm walking around with a plastic bottle on my head, only on one side. I also started to have this horrible high-pitched ringing in my ears. I've done everything I can think of (the scuba-divers method and everything) but nothing works, and I think this is contributing to the migraines. The ENT wasn't the best (smarmy little man who I felt wasn't taking my concerns seriously enough) but they did the full exam. I have some hearing loss in my left ear that I'm confident occurred during the X-Ambassadors concert during the Basilica Block party last summer. My friend Steph and I went, and we had VIP passes (awesome) that stuck us right in front of the enormous speaker and I didn't have my earplugs with me. BIG, HORRIBLE MISTAKE. Anyway, this doctor didn't seem to think that there was much that was wrong. He did a culture of my sinus mucus (which included numbing of my nose and throat and a very long metal probe in my nose, and a visual examination of my eardrums to see if there was fluid collecting behind them, but he didn't see anything. I was desperate for relief and he suggested that we could try a myringotomy, which is a small cut in the eardrum, like what toddlers get when they're getting tubes put in their ear. He did the myringotomy, and I'm pretty sure that was the dumbest idea I'd ever had. There doesn't feel like there's any pressure anymore, but I also feel like I'm completely lopsided because I can't really hear anything out of my left ear, and whatever I CAN hear just sounds echoey. It's just awful. And there's still ringing. Fuck, dumb idea. He said it should take a few weeks to heal and gave me a prednisone taper to take.
The scariest thing about that entire trip was the enormous difficulty I had walking from my car to the parking lot. My shortness of breath was terrifying, and I had to stop 2 times on the way to the office (it's not a very far walk). I went straight home after that and headed upstairs, having to stop on the half-landing to catch my breath. I made it to a chair upstairs and pretty much stayed there the rest of the night. I'll admit I was terrified. I had been to the ER for pneumonia and they weren't really confident, and I was afraid that they weren't going to take me seriously since I had just been there, but they DID say to come back if it wasn't getting better, so I did. I had Joacim take me this time because I honestly didn't think I could drive myself. It was later at night (my usual time to decide to go to the ER) so I had Izzy and him wait in the car until I was in back and sent them home so they could get some sleep). My pulse O2 was below 90 when I arrived and my BP was 190/117, so clearly it was a good idea I came. The doctor I saw this time was much more urgent with her action and decided relatively quickly to admit me to the hospital. I was honestly so relieved I just wanted to cry. I wasn't feeling any better, but I felt I was going to be in good hands, except for this IV which hurt like hell. Nurses always go for that vein because it's so big and juicy (as you can tell by the blood splatter which is in part due to my high blood pressure), but there's so much scar tissue there from all of the plasmapheresis that it hurts like crazy.
My friend, Jessica, saw my post on Facebook and came to the ER to bring me a few things (including snacks because I was starving), and I can't thank her enough. It was just nice to have someone there to talk to and distract me. About an hour after I arrived I took an ambulance ride to Methodist hospital (which is about 20 minutes away). They were quick to put a pink bracelet on my fistula arm so that no one would try to draw blood or take a blood pressure in that arm.
And I was thrilled that they moved the IV into my wrist (well, as thrilled as one can be with the thought of another poke).
And then respiratory therapy started to come in for albuterol breathing treatments. They also gave me this spirometer to use 10 times an hour to help work on the deep chest congestion. At this point it was confirmed that I definitely had pneumonia, so they started a course of daily IV antibiotics and 40mg Solu-Medrol (steroid) every 8 hours.
I fought hard to go home that day, but after my BP rose I knew it was pointless to try to argue, so I had to stay one more day for another round of antibiotics and Solu-Medrol. The doctor wanted to make sure that we kick this pneumonia squarely in the teeth before I was discharged. Luckily, Izzy and Joacim were able to visit me that night and bring me some stuff from home, including a soft nightgown (hospital bedding and dressings are notoriously bleached and crunchy and irritating).
And my dear sweet daughter tucked in a few caramel candies that I love in my request for chocolate chip cookies. This kid knows me well :)
I took a picture of this bruise at some point because I've had it since January 5th. These things just don't go away with any expediency.
I was able to check out Friday morning and my friend Ellen came and picked me up because Joacim was at work. It was important for me to be able to dialyze in my regular clinic on Friday, and I had just enough time to get home and soak in the tub before dialysis that night. Check out this ghastly pale skin....hard to tell where my legs end and the tub begins :(
So last Friday's dialysis went remarkably well....dare I say "good". I kept my legs down the entire run because putting myself in a reclining position (which is pretty typical for dialysis patients) makes my BP rise, so by dangling my legs it stays lower. The awful side effect of this is enormously swollen ankles. After dialysis, Joacim and Izzy picked me up and I felt so good that we decided to go get sushi. There's a great little restaurant in town that we've missed dearly, and I said screw it, I'm hungry. I didn't eat any raw fish (only rolls and rice) but it was delicious and awesome and felt normal.
I woke up Saturday and felt pretty awful. This wasn't kidney related, but it was related to the fluid in my ears still. I was pretty useless when it came to doing anything around the house other than breaking things. Joacim was trying to remove a clog in the dryer venting and that took awhile (unplanned), and then I went and broke the garbage disposal by allowing the tiniest glass bowl to slip through and it shattered. So, my dear, handy husband had to take everything apart, remove the garbage disposal and clean it out (along with the pipes) and put it back together. I tell you, at that point, we were all feeling pretty low.
The one bright spot to the weekend was a special delivery from a friend I met on Instagram. Social media is sometimes awful, but it has bright spots for people like me. She sent me this colorful little care package to lift my spirits and it did the trick! A nice cup of chai that evening, spent reading a book with Izzy, was the perfect end to a crappy day.
And then on Sunday we had a little bit of normal. I don't remember much of the day, but near the end we all sat down and helped Izzy study for her math test that next morning. I'm glad I was healthy enough at that point to help out, and to just appreciate the moment.