Still sucking in every way imaginable

So when I posted last Friday, I was in a dire place where I didn't know what I should do.  Sadly, I'm still at that place but for different reasons.

I woke up Friday morning still feeling like I was drowning in my lungs and started calling the clinic and my doctor's office.  I found myself in the vicious cycle of waiting on hold, leaving voicemails in general mailboxes and speaking with the nurse at my clinic who has a way of talking that leaves me frustrated.  My observation is that she's noncommittal in her answers.  What I mean by that is when telling her my symptoms and my frustrations with not knowing what to do, she'll say "well, you should probably go to the ER".  What in the hell does "probably" mean????  I think I asked her that but in a nicer way.  I missed my team at Mayo right then more than I ever have.  Mayo understands patient-centered care.  If I were at Mayo with these symptoms, my doctors would be actively working to create an action plan to attempt to address these immediately.  Now that I'm outside of that, I have to do all of the work and nothing feels immediate.

But my prodding and freaking out worked this time because my new nephrologist and clinic came up with a plan.  I went into dialysis an hour earlier on Friday, and for the first hour we just did ultrafiltration (which means I'm connected to the dialysis machine and it's only pulling fluid out of blood instead of pulling fluid AND cleaning it).  Doing this, they can remove up to 2 L/hr which is awesome.  After the ultrafiltration I'd do my regular run, where they'd pull another 2 L overall, and the combination worked.  The ultrafiltration part was much nicer than dialysis, and the only thing I noticed was that I started to get really really cold...small price to pay to be able to breathe again.  I felt a noticeable difference after Friday's run, but sitting in that damn chair for 4 hours nearly drove me batty.  This is a picture of the machine near the end of the run...at that time they had pulled 3845ml!

Even though I was nearly 4kg lighter (8.5 pounds) my legs and ankles were incredibly swollen.  The 2nd half of the run I sat with my legs down (instead of lying back on an incline) because it kept my blood pressures lower, but that meant that gravity became my enemy again and dumped all of the fluid in my ankles.

That night (Friday night) I'm particularly grateful that Izzy was still staying at a friend's house because I think I threw up 5-6 times.  And it really freaks her out when I vomit (who can blame her).  No idea why....it started about 2 hours after my run, and just continued intermittently for a few hours.  I remember sitting on the toilet, pooping and vomiting at the same time, with snot running down my face from the puking thinking "yes, this is the very definition of hell".  It's like my entire body was rejecting everything inside of it, all at the same time, which is why a bucket is now a regular feature in our bathroom.  I'm not sorry for talking about the graphic details, because it's the truth of what's happening, and I write this to capture all of the gritty details.

So after spending the evening vomiting and somehow drifting off to sleep, we had to get up at 5:30am the next day to drive to another center in Bloomington for a 2-hr ultrafiltration run to remove the rest of the fluid.    It was a nice clinic with upbeat staff.  And I have a feeling I'm going to make a lot of friends as my time on dialysis progresses, as most of the people in there are almost twice as old as I am, and they're pretty sweet.  This is a pic I took before, and you can still see all of the swelling around my eyes.

We were able to pull off another couple of liters of fluid at the end of that, so from the time of my initial weigh-in on Friday afternoon to my weight after Saturday's run, I was 13 lbs lighter.  A HUGE difference.  I felt human again....lighter....no headache.  Just an incredible difference.

Sadly, the giddy joy I was feeling didn't last long, because in addition to starting dialysis I've been fighting a sinus/upper respiratory infection all at the same time.  Fuck, I don't know what issue is caused by what problem anymore, but I was still having trouble breathing.  I sucked it up through Saturday, but by Sunday I really couldn't walk up and down the stairs.  I waited and waited for relief...took a bath...sat in a dark room and watched Netflix...anything to try to keep my anxiety from making it worse.  By late afternoon I started to get really worried.  I have been feeling lately like I'm breathing through a straw...you heard it on the video from my last post.  By Sunday, that straw had become a coffee stirrer, and I swore that something really bad was going to happen to me if I didn't go to the ER.  Again, I've covered how terrifying that could be, but this time I just didn't care.  I needed relief, and I was so afraid that I was overthinking it or being silly that I just drove myself there.

Now you may be wondering why I would drive myself to the ER.  Joacim and Izzy were both at home, and I could've wrangled them up to take me, but most people don't understand why I do it.  I just hate the fear that I could be causing in Izzy every time she has to see me in some medical distress in a medical setting, and I can't stand having people sit and watch me as I'm suffering.  Honestly....it doesn't do me good in that setting to have people around.  I can't really talk much as I'm having a hard enough time breathing....they're kind of anxiously looking around wondering what's happening and I know it's going to be a couple of hours before anything happens, and I just hate that scenario.  So I drove myself while they stayed home and had the most normal evening they could while I dealt with my shit.

So I went to the ER (one that I've been to before but not recently) and they were very nice and kind.  I felt better going there because I knew that this wasn't fluid-overload related (meaning I felt my issues could be separated from my kidneys, which made me feel safer).   They took me back right away because my BP was so high (170/110), did a chest x-ray and labs and I waited.  I waited for quite awhile, actually, which was frustrating because my BP was rising and my breathing became more labored.  Finally, after 2 hours of lying in that bed watching the Super Bowl, they came back and told me that they *might* have found the beginnings of pneumonia in one of my lower lobes (guess it's harder to tell on people on dialysis???) and were going to treat me right there with an IV antibiotic and change the one I was on at home to a stronger one.

They gave me a breathing treatment too to try to alleviate the issues I was having.  Sadly, that didn't do much.  I panicked a bit because I didn't want to be released from there feeling as bad as I was. I couldn't imagine trying to go home and sleep one more night in that condition, but that's exactly what I had to do.  I felt that the ER did a great job of addressing all of my concerns, but there are so many factors for me now that nothing is a quick fix.  Maybe I just needed someone to tell me I wasn't going to die in my sleep that night...because I swear that's what I'm fearing right now.  I fear that sometimes I'm "too" strong and push my body too much, because I just don't know where the bottom of this whole thing is.

I saw this following pic in my FB feed while I was at the ER on Sunday night and I literally laughed out loud at the absurdity that is my life.  Do you know how many times someone asks me how I'm doing a day?  It feels like hundreds. When I'm on 5-minute BP checks during dialysis, she asks me how I'm feeling every 5 minutes, and there are only so many ways to say "horrible".

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!

Me and the ER have to stop meeting like this : FSGS Sucks

I wrote my last post on August 30th, complaining that I couldn't sleep.  Things got MUCH worse over the following weekend.  Joacim and I went to dinner with some friends on Saturday night to a artsy-fartsy restaurant downtown.  All 4 of us shared our food as it was served "family style".  We had a great time...I had a couple glasses of wine...no big deal, right?

We got home around 11:00pm, and our neighbors were having a housewarming party that was still going strong, so we went over there and hung out for a bit.  I had one more beer there (keg beer, no less), but was feeling a headache come on so I went home.

That night, I didn't sleep well...it was one of those nights where I felt like I was awake every hour, even AFTER I had taken a sleeping pill.  By Sunday morning, my head was pounding, and my stomach churning.  To make a long story short, I never left my bedroom that day.  I was either in the bathroom dry heaving or shitting (sorry to be blunt there, but it is what it is), or lying down in the bed in the dark, begging for mercy or death.  Seriously..I'm not being dramatic here...it was THAT bad.  And it didn't get better.  I'll admit this now because the situation seemed desperate for me at that point, but I took 2 aleve.  I KNOW....I KNOW...this is a HUGE no no for me, but I honestly couldn't figure out if the headache was causing the vomiting and diarrhea, or just a by-product of something else.  Joacim thought I might have food poisoning, and after looking up the symptoms, I really couldn't disagree.

Since I wasn't feeling better, I dragged my pathetic self to the emergency room AGAIN (oddly enough, 4 weeks to the day from the LAST time I was there).  I got some fluids, some anti-nausea meds, and some awesome painkillers.  Due to the painkillers, I couldn't drive, and Joacim was at home with a thrown back and a sleeping child, so my dear friend Caroline graciously came and picked me up and took me home.  The ER doctor gave me some Zofran (anti-nausea) to take home, and I ended up needing it the next day.  I managed to pull myself out of bed on Monday morning, got dressed, and drove to work in absolutely nausea-induced misery.  And then I proceeded to drive right by work, and back on to the interstate back home to my bed.  I just felt awful still, which really sucks (work-wise) because this was the 2nd sales meeting that I had missed, and I fear my new employer is starting to wonder what they got themselves in to.  This scares me....I LOVE this job...I don't ever want it to be in jeapordy because of these damn kidneys that I hate.  (and in the back of my head I can hear Izzy saying, "Mommy, you said 'hate' again".  That little girl keeps me on my toes ;).

I finally recovered by Tuesday, but had to mow our lawn since Joacim threw out his back, and that was BEYOND exhausting.  The hills on the side will be great in the wintertime for sledding, but were the bane of my existence last Tuesday.  Thank God for self-propelled lawn-mowers, or I wouldn't have stood a chance.

I've had lots of bouts of swelling lately.  Fortunately, they keep going away, so I'm hopeful that this is food related, because I can fix that.  This job has created some bad habits for me...I go out to eat A LOT.  I try to make good choices, and at a sit-down restaurant I can usually do that (salmon caesar salad happens to be my favorite right now..dressing not so good but salmon so good), but when I'm in a hurry and fast food dictates due to time, I fail.

And of course, there's the frustration of what I miss every time I'm sick. This time it was a cruise on Lake Minnetonka that was provided by our realtor.  I lie there while Joacim and Izzy went ahead without me, and thought about all of the things I might miss with her due to this disease, and it makes me beyond sad.  Some may wonder why I focus on these negative things, and until you've experienced it, it's not easy to explain.  I want to be prepared for those feelings, I want Izzy to know that I would if I could,  but most of all, I never want Izzy to be disappointed because her mommy is sick AGAIN.  She asked me that day if it was my tummy, or my head or my kidneys....she's already been exposed to more than any kid needed to be at her age.  But on that Sunday, SHE took care of me.  She rubbed my head, brushed my hair, and snuggled up next to me when I asked her.  And it's strange, but sometimes, when I feel that way, the presence of another person actually touching me soothes me, even though sounds make me cringe.

This post is rambling, but so are my thoughts on all of this.  I don't know what my tacrolimus levels are, but I'm guessing they're higher because the headaches are starting now.  I think that was part of my problem last weekend, I just didn't make the connection.  I've been pretty lucky regarding the headaches, up until now, and no amount of Tylenol can make a dent in these headaches.  They are a cross between a regular headache and a migraine, and they are unbearable.  They make me grumpy, unproductive, and generally unpleasant to be around.

I had a reader send post a comment on one of my previous posts telling me about PD (perioteneal dialysis) and how, based off of her email, her life is better now than when they were trying to save her kidneys.  She leads a pretty normal life, and has energy.  I honestly DON'T know why I'm trying to save these things....even if I get off of this medication, there's no guarantee that I'll feel better.  They just don't work the way I need them to work in order to have the life I want and deserve.  It's about time to start having some seriously discussions (and doing some serious research on my part), about what my next options are.

Thanks to everyone...friends, family, and strangers who read this.  Comments make my day..especially ones that are truly meant to show me another side (thank you Wendi!!!)

Another trip the ER : FSGS Sucks

I spent Sunday night in the ER.  More fluids....headache and nausea medicine.

I woke up Sunday morning feeling not so great.  Honestly, I thought it was a bit of a hangover.  Joacim and I had gone downtown to have drinks and dinner with some friends, and I'd had a couple glasses of wine.  No biggie...I've had more.  We had a really nice time.

And when we got home, it didn't stop.  Our neighbors were having a housewarming party that they had invited us to, and it was still kicking when we got home.  We, of course, were the only 2 sober ones there, which makes for a perfect opportunity to "really" get to know some people, so we headed over.  We each played a game of beer pong, but I still only drank one more beer (keg beer, no less), and eventually headed home. I felt fine...not drunk but maybe a little tipsy.

Got home, went to bed...woke up around 7am because that's when my alarm goes off to remind me to give myself my Acthar injection, and could feel the headache coming on.  We had a cruise on Lake Minnetonka to go to that afternoon that was given by our realty, so I figured I take some tylenol and head back to bed for a few hours. When I woke up at 10, I was MUCH worse.  To make a long story short...for the next 11 hours I spent it either shitting, dry heaving, or praying for death because of the headache.  By 9:00pm that night, I knew it wasn't going to get any better, so I dragged my ass to the emergency room because Joacim suggested that it could be food poisoning (even though he felt fine and we ate the same thing).

They gave me a few bags of fluid, some Zofran for the nausea (awesome drug, btw) and some morphine for the headache, which rendered me inable to drive.  Bless my friend Caroline for coming to my rescue and picking me up at 11:30 that night so as not to force Izzy out of bed (plus, Joacim strained his back RIGHT before I left...it's cleary not good luck to be in our house right now).

I tried to go to work yesterday too, thinking I felt better, but driving in that car exacerbated my already "delicate" position, so I drove all the way to work, right past my building, and back on the interstate to get home and lie down, which was THE ONLY position where I didn't want to die.  I pretty much spent the day lying down (like Sunday, only I never left my bedroom that day), took a sleeping pill, and woke up feeling more "normal".  But the headaches was unbearable.  And I think I figured it out that it's the prograf.  Maybe it took this long for my body to be at theraputic levels.  This was one of the worst side effects the last time I took the drug, but at much lower doses.  I guess I've become more tolerant, but that there's still a breaking point, and I think I'n there.

I went to the dermatologist this morning to get a mole check, plus I have a spot on my face that I hate.  One dermatologist to get used to it because "you're getting older".  That jackass is not my doctor anymore.  With all of the immunosuppressants I've been on (and seemingly everyone one of them with "cancer" as a possible risk), it just seemed the prudent thing to do.  This derm. was really nice, did a full body check (CLEAR :) and put a little liquid nitrogen on it to freeze it off.  Eventually, it'll fall off and hopefully be gone, but for now, it's ugly as hell.

Kinda looked like a bug bite.  Unfortunately, right now, it looks a LOT worse since I got all sweaty mowing the lawn tonight ( I volunteered because Joacim hurt his back....never again will I be so nice :). It's all puffy and full of water.  Awesome. Can't wait to see what this monstrosity looks like tomorrow morning when I have to try to cover it up.  I pray I don't have any sales calls because it's pretty damn distracting.

It's been a rough few days : FSGS Sucks

Last week was an exhausting week, as I wrote about.  The Wednesday after that last post, I was done.  D.O.N.E.  I got back to the hotel around 4:30pm, put my jammies on and crawled in bed.  I was SO shaky and dizzy and tired.  I didn't take my acthar because I was afraid it would make things worse, and I just couldn't afford that last week.  I got a good night's sleep and I was better on Thursday, but still WAY more tired that I normally am.

In my last post, I wrote about feeling the physical limitations of FSGS...the frustration of not being able to be 100%.  This past weekend, there was a point where I couldn't even get to 10%.  Saturday night I had another bout of insomnia.  THAT is the most frustrating side effect of Acthar. But by Sunday morning, it was accompanied by a migraine.  So let's review, shall we?

insomnia + migraine = HELL

This was the kind of migraine that makes you vomit (which I did), makes you nauseous (which I was) and makes you "feel" every single sound (which I did).  Hell doesn't really describe it actually.  And it felt like it would never end.  The pain was constant, with no relief to be had.  I eventually took 2 sleeping pills Sunday night and got some sleep, expecting to wake up Monday feeling better.  I've had migraines before, and they usually only last a day, so I was expecting normalcy for Monday.  But no no nooooooo....that would be too GOOD.  THIS is what I woke up to:

Oh yeah...I'm sporting the "Rocky Balboa" look.  I still felt like hell. I couldn't go to work (how in the hell would I explain THIS???)....hell I could barely drive myself to the doctor, but I did.  No appointment...just walked in, determined to wait until someone could see me.  Eventually I got in to see another doctor (my normal pcp was booked for the day), and I told him what was going on.  He took a look at my mouth (my tongue ripe with flush still...awesomesauce) and said I looked dehydrated, and sent me to the ER to get some fluids.

I walked downstairs to the ER, got a couple bags of fluids, and was sent merrily on my way.  The nursing staff kept saying, "you feel better, don't you?" as though they were trying to convince me that I should feel better, and I kept telling them no, but what else could they do?  They had no idea about my history.  They told me my labs were normal, which then led me to believe that they were crazy because I hadn't taken my meds since Saturday morning (and I KNOW my potassium would've been low because of that). 

Anyway, I came home and tried and tried to sleep it off, but with pain like that, you just can't sleep.  So I caved.  I took an Aleve.  Actually...I took 2 of them.  And that's all it took to make me feel better.  Two little pills that I'm not supposed to take made all the difference in the world.

What's making me crazy is that those two little pills could end up resulting in bad test results next week.  Did I do the right thing?  Well, I think for me, I did.  I couldn't miss more work...I don't WANT to miss any more work, especially not right now...while I'm so new.  And I'm not comfortable sharing my illness at this point....this job is fairly high-profile, and I just can't risk it right now, and I don't want to.  I'm SICK of these kidneys, and am ready to "off" them.  I know...I sound crazy, and dramatic, but I'm totally serious.  Why in the HELL am I trying to save these things again?  Is this the quality of life I should expect?  Should I just "deal" with it and not live?  Well, I just can't.  I'm sick of being sick.  Screw these kidneys.

Dear god...these pictures even freak me out, and I look at this mug every single day.  Look how ROUND it is!!!  I won't post pics of my personal flotation device, but it's impressive.  How else could  go for 3 days without eating and not lose any weight?  Freakin' ridiculous.

I finally was able to back to work yesterday...my eyes were still puffy, so I told people I had an allergic reaction to something.  I felt awful lying...seriously.   It's not easy keeping it quiet when I've always been so open about it.  I have to be very conscious of what I say.  I've got my 24-hr urine collection next Thursday.  Before this job, I had no problem saying I needed to work from home because I had a pee test.  I guess I'm lucky that I don't have to justify it now...working from home is a viable option for me.

I'm sure that everyone with a chronic illness goes through these highs and lows.  I happen to be in a valley right now, but I'll rise up....I just have to work through some things first.  Guess it's time to see my therapist :)  I haven't seen her in 5 weeks due to family visits and this new job, and I kinda miss talking to her.