And a crappy week wouldn't be complete without another trip to the ER and a stay in the hospital for a few days

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 got very little sleep that evening because they started the IV antibiotics at 3am, plus all of the vitals checks and whatnot.  I had to do inpatient dialysis on Wednesday, and it was the worst.  There were 4 of us in a really cramped room, I had had enough of lying in bed, and I got literally THE WORST MIGRAINE IN THE HISTORY OF MIGRAINES.  The worst part about this is that the doctor on call wasn't comfortable giving me Imitrex because apparently it's contra-indicated in people with high blood pressure.  Triptans (most migraine meds) have a tendency to cause high blood pressure, so it's not a great idea to give it to someone already suffering from it.  This was totally news to me because I've been using Imitrex for the last year whenever I have a migraine, and especially the first 5 dialysis treatments.  That information pretty much scared me straight and I won't be using Imitrex for a high-blood pressure migraine anymore.  That being said, I spent that entire night in bed writhing in pain.  I mean, this migraine just would not lessen.  All of the muscles in my neck and upper back seized up and I wanted to lie down, but I couldn't because then my lungs would fill up with fluid and I'd start wheezing and coughing.  I must've slept a little but when I woke up the next morning I STILL had a headache.  The doctor gave me an oxycodone to help with the pain (thankfully) and that did take the edge off of the pain.  Eventually my BP dropped enough that he was comfortable with the Imitrex, which was administered subcutaneously in my stomach.  That was a mistake, because my BP shot up sky high after that and I spent the rest of the day trying to walk it off on the 4th floor of the hospital.  Luckily my headache was gone...I'd take high blood pressure over a headache any day.

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.

A week in the hospital and now dialysis

Radio silence once again, peeps.  Certainly not intended, but unavoidable considering everything that's happened.  I kind of "fell off the cliff" in regards to my health a couple of weeks ago.  My last post talked about my nephrologist visit and how he said that "I'd know" when it was time to start dialysis.  I guess "I knew" the morning of Monday, Nov 3rd.  The weekend before that I just felt awful....I could NOT get warm enough (we're talking 3 shirts, heating pad, thick fleece blankets and a space heater), and I was too nauseous to eat anything.  I started seeing my weight drop drastically, and by Monday morning I was down to 138 pounds.  I called my nephrologist on Monday morning and told him about the weekend and the symptoms I was experiencing, and he suggested I come to the hospital.

Now this was something that I'd thought a lot about.  I tried to find a nephrologist with local hospital privileges, but they weren't seeing new patients until January, so I was never able to follow-through with that.  I could either take my chances and go to the emergency room of a local hospital, or I could make the hour-long drive to a hospital in Maplewood and get admitted.  I chose Maplewood, simply because I knew my neph had privileges there and the surgeon he preferred for the PD cath placement was there.  Looking back now, I'm SO glad I made that choice.  Medical professionals in a typical ER setting see someone like me, and a whole lot of unnecessary time is spent trying to get a handle on my situation.  By going to Maplewood directly, my neph was able to get a room for me, and get all of my surgeries lined up before I even got there.  

This picture is of me right after the neck catheter placement procedure (which I was horrifyingly awake for).   Yeah, I'm not looking too good in this one.  

The reason we had to do this temporary catheter in my neck is that I had taken my blood thinner the night before, and there was no mechanism to reverse it's side effects, so we had to wait to put the tunneled catheter in.  But I desperately needed dialysis, so this was the option I had.  Can I just tell you that this was horribly uncomfortable, and I just started to get a bit freaked out knowing that there was this catheter thing essentially IN MY VEIN and sticking out of my neck.  Holy hell...it freaked me out.

But I DID receive dialysis that first night around 4:30pm.  It's kind of amazing that it all worked out.  This picture below shows what the dialysis machine looks like (that's my blood in the lines getting cleaned).  I had no idea what to expect, but I did experience a significant headache, with some crazy-painful cramping at the end.  We didn't end up pulling any fluid off due to the cramping (not that I had any fluid to give as I was severely dehydrated).

This picture was taken Tuesday during my dialysis session.  These were flowers and a balloon from my co-workers, hand delivered by 2 of them (my co-worker is my nephrologists brother :).  Such a happy surprise!

The second session of dialysis left me feeling like a zombie.  I felt like my life-force had been sucked out, along with all of the toxins, and there was this residual vibration in my entire body, like there were a bunch of happy cats trapped inside, purring away.  I make it sound pleasant with the cat analogy, but it was anything but pleasant.

By Wednesday I was feeling pretty cruddy.  I had been taking sponge baths each day (can't get catheters wet), but one of the nurse aides offered to try to help me wash my hair.  They have these shampoo caps that they use for patients that are bedridden, so I gave it a go.  They heat it up in a microwave first to activate the "shampoo" and then they're supposed to put it on your head, lather up and then use a towel to dry (sort of like a dry shampoo).  You can see that the aide is having some difficulty fitting all of my hair in that tiny cap, but she somehow managed it.  I tried to rinse the stuff out, but it ended up making my hair feel even grosser.  Then I promptly called Joacim and asked him to bring me some shampoo and conditioner :)

This is what dialysis looked like for me out of my neck.  These two tubes (one is where the blood is pulled from the body and the other is where it is returned....the colors don't necessarily matter in this case).  You can see that they're both empty here.

Now you can see one of the tubes slowly start to fill with my blood, which is then going to the machine for cleaning.

And now both are filled, as the blood on the blue side is what's returning from the machine (all nice and clean) and back to my body.

I could't stop taking selfies of this thing.  I was intrigued yet horrified all at the same time.  My neck started to REALLY bother me because of the tape (you can see it pulling on my skin).  They also cover the ends of the cather with gauze, so it gets heavy, and it kept pulling on the tape that was pulling on my skin.  The only way I was comfortable in regards to this part was to lie down, because then I could at least use gravity to position it in the least annoying way.  But after awhile, lying down all the time just sucks, and that hospital bed was awful (not to mention the 9 blanket that were piled on top of me.....if you ask for a warm one, they just put it under all of the others so it's closer to your skin, but don't remove any of the ones on top, so they build up over time).

This pic was taken on Wednesday as I was getting wheeled to the procedure room to have the neck catheter removed and a tunneled chest catheter placed.  I had been fasting (no food or drink) ALL day, and by this time it was 3:20pm.  As soon as we got into the suite the procedure was cancelled.  The doctor was running over with the previous patient, and then he had to be out of the building by 4:00 for a prior commitment.  I get that these things happen, but why even bother wheeling me down from my room if they knew he was running over????

I was lucky enough to get some visitors during my time at the hospital.  Izzy and Joacim came one night (I think it was Wednesday).  I was feeling pretty awful at the time, but I tried so hard to appear well for Izzy so she didn't get freaked out by everything.  She seems decently at ease in our selfie ;)  I also had several co-workers and my boss take time out of their busy days to drop in and visit.  Sometimes I wasn't the best company, but their visits were such a huge mental help!  And they brought food too!!!

Here was my nightmare of a bed.  I am not an organized patient...there were cups and papers and crap all over the place.

I was still being starved every morning at this point.  One of the days, I returned to my room after dialysis and saw this happy little surprise!  It's good to have friends that are nearby :)

By Thursday, the neck thing was really bothering me, so the nurse wrapped an ace bandage loosely around my neck in order to support the weight of the catheter.  MUCH better after that.  She adjusted my tape a little too, which finally allowed me to look up (I was starting to feel like the Hunchback of Notre Dame!)

 I FINALLY had my chest cath placed sometime Thursday (this pic was taken right after I returned to my room).  Thank DOG I was drugged up for this one, because it hurt like HELL when I woke up.  The catheter is tunneled under my skin, but over my collar bone, and apparently bones are pretty tender.  I felt like I had an elephant do the hokey-pokey on my collar bone.  SO.  INCREDIBLY.  PAINFUL.  Thankfully, no dialysis that day.

There wasn't much space left on my arm to do anything, but they still managed to draw blood from it every morning around 5:30am.

This was one of my nurses (who were al fantastic) named Rissy!  She'd the kind soul who wrapped up my neck, and really just fought to make sure I had the best care possible.  Nurses are a gem.  The amount of shit that they have to put up with is frightening and sad, so I tried my best to be a good patient.

I'm pretty sure I took this pic right after the surgery for my PD catheter (judging from the stoned look on my face).  I'm pretty sure I tried to call people on FaceTime because I could not move, and the phone somehow was in my hand.  Wow, PD cath surgery was also stupid painful.  I can't describe it.  Just awful.  Normally it's an outpatient surgery.  Either I'm a wuss, or all of the crap that my body had already been through that week was taking it's toll.

I asked the dialysis nurse on Friday to take this picture, because I wanted to remember what it was like at my worst.  This was my last day of dialysis in the hospital, I had a MASSIVE migraine that I was fighting, and the guy getting dialyzed next to me had MRSA and was vomiting and moaning throughout the whole session.  Quite possibly one of the worst 3 hours of my life.

And, amazingly enough, I was able to go home the next day.  Joacim came and picked me up around 4:00pm, and we were off.  I was terrified, honestly.  I was terrified due to the pain I was still in, and being home meant no IV dilauded (which is an INCREDIBLE pain drug), but there really was no reason to keep me there, and I probably did recover faster being at home.  I left the hospital with a chest catheter and a PD catheter.  The chest catheter is used for the in-center hemp dialysis that I have to do until the PD catheter is healed, which takes about 2 weeks.  While in the hospital, I found out that I was approved on the waiting list for PD with DaVita/Baxter, so things were pretty much in-place.

More follow-up posts coming....

My first hospital stay....: FSGS Sucks

Last Sunday my friends came over so we could make Christmas candies and cookies.  It was a fun day, and LOTS of food was made.  I thought it was odd (for me at least) that I didn't feel like snacking at all throughout the day.  My stomach was a bit upset, but I just figured it wold pass.  I had plans to go to North Dakota on Monday morning with my boss and co-worker..around 9:30pm I confirmed things and went to bed.  About a half hour later, I started having diarrhea, and then a half hour after that I started vomiting.  Profusely.  At the same time.

I can honestly say that I've NEVER EVER felt that horrible.  EVER.  I was nervous about how this would affect  my blood thinner medication, since I had most likely thrown it up.  That, coupled with the fear of dehydration, made me drive myself to the emergency room, and I'm so glad I did.  I have no idea how I made it there, but they were kind enough to bypass the formalities at the desk and let me take a shortcut to a bathroom and a room.  I feel so sorry for the poor sap who had to collect my stool sample in there.  It wasn't pretty :)

I think I shit 4 times before they got my blood pressure, and vomited at least once.  The first 24 hours were all a bit hazy...but since I'm ALWAYS thinking about fodder for the blog, I managed to take a few pics of my stay.

This is me once I got a bit settled in the ER, along with some Zofran for the nausea.

I threw up so hard that I had petechia around both eyes...

The attending physician was a bit worried about me being dehydrated since the vomiting and diarrhea weren't stopping, so he thought it best if I were admitted.  He asked me what hospital I wanted to be transported to (because the place I went is not a hospital, but an emergency room only), and I had absolutely no idea, so I guess that means I need to do some research now in case this happens again.  I went to St. Francis in Shakopee, and I gotta say that they were absolutely GREAT!

This was my 2nd IV....the ER had placed on in the crook of my arm, and it wasn't comfortable at all, so they moved it to my hand.  This totally creeps me out, btw....I was so dehydrated that my veins started collapsing when they tried to draw blood.

This picture I took on day 2...petechiae still there...

FINALLY, after 24 hours, the diarrhea stopped, but then I started to get a headache.  They were generous with IV pain meds, but it kept coming back again and again.  And then I started vomiting again.  Even this little cracker here cause me quite a bit of discomfort.

And then, of course, I had an itching spell when I was trying to sleep, so they got me some ice packs to  numb my arm.

After 4 bags of fluid, my face started to swell.  You can see how my eyelids are starting to get puffy.

They had to move the IV AGAIN in order to do some albumin infusions .  I'm so grateful to the nephrologist on staff there who ordered the infusions.  It's something I've asked about more times than I can count, so it was nice to have a nephrologist who was willing.

Izzy and Joacim came for a short visit on Tuesday night.  The nurse had given me a percocet in order to kill the pain, and she warned me to eat something with it, but I was SO nauseous.  I wish I would've listened, because within 10 minutes of them arriving, I had to throw up.  I was afraid that it would freak Izzy out, but she handled it quite well, and I felt fine after that.  Clearly she was fine since she decided to steal my apple :)

And then she made herself comfy in my bed and we watched Rudolph the Red Nosed Reindeer on TV.

Sadly, after they left, the headache came right back with a vengeance.  At this point, it was a migraine and I was miserable.  I had a WONDERFUL nurse, though, and she gave me a lavender inhaler, put some oil on my back and gave me a pressure-point massage, which felt AMAZING.  She was a fantastic nurse, and her name was Carole.

Finally, by Wednesday morning, I had the headache under control.  The doctor on staff had given  me migraine medication the previous evening, and gave me some to take home until I get into see my PCP.  I felt MUCH better....tired, but better, but my face was ENORMOUS!

Can you see the swelling UNDER my eyes?

How about now?  :)

It took 3 days for my face to return to "normal", but I'm VERY happy that I decided to go to the hospital.  I know that I can't be too careful when it comes to my defective beans, and that I should trust my gut when it comes to how I feel.

I'm a bit nervous as to what my boss thinks about it all, since I had to text him at 2:18am on Monday morning to tell him that I wasn't going to North Dakota.  At this point, I think it's time to tell him what's going on.  I no longer have the confidence that I can "power through" things every time....things like this are going to continue to happen, and possibly more frequently, so I think it's only fair, for both he and I, that people know the status of my health.  Wish me luck!