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".

Radio silence....

It's been 2 months since my last post.....one would like to think that means that I'm doing well, but it's more like I don't have anything horrifically tragic to report, which I guess is good, but sad that my scale of life is "okay to horrifically tragic".

I think my job will be the death of me.  I'm a busy that I can't understand, describe, or get a handle of.  I don't have time to notice the nuances of my health that I once did, and for a person with a chronic illness, nuances are important.  They can help me identify triggers that make me feel bad, or help me notice things that make me feel good.  Now there's just.....no feeling.

A few weeks ago, I noticed that I was having a noticeable difficulty catching my breath.  It felt like I was walking up multiple flights of stairs, when in fact I was only walking from my car to my desk (a trivial distance, really).  I called my PCP to set up an appointment, as I was due for a thyroid check anyway, and ended up describing my symptoms to a nurse, who then told me to go to urgent care.  So I went to urgent care, and that's always a process.  People like me walk into places like that, and you can see the look on their faces when they see my labs.  It's like they're shocked that I'm still breathing.  Whenever checking in at any new place now, my line is, "I'm the healthiest sick person you'll ever meet".  They laugh, thinking I'm a nut job, and then they'll do labs.

Long story short, I ended up getting referred to the emergency room from urgent care, where I spent 6 hours essentially being ignored.  And get this....it's all because the urgent care's stat lab for potassium measured me at 2.9 and yet a couple of hours later, it measured 3.4 without any intervention.  So what that means is that the lab's measuring equipment is off.  And I got to spend 6 hours in an emergency room (out of network, by the way), only to drink a hideous orange liquid containing a boost of potassium and be on my merry way.

And yet, miracle of all miracles, I still have the exact same symptoms (sarcasm, my friends).  I can do a yoga class one morning, and yet the next day become winded walking.  It's unpredictable, insidious, and just plain awful.  And I guess I'm just supposed to "be okay" with it.   To feel "lucky that it isn't worse".

Screw that.  (I have harsher words, but that'll suffice for now).

Here's a great little ditty that I discovered last week.  I go to a medical building that contains my lab, my primary care doctor and my urgent care.  My PCP and the urgent care is an in-network provider, but the lab isn't.

They're in the same building.

They're all under Park Nicollet.

But CIGNA is a bloodsucking insurance company, so there's that.

My husband started the donation testing process and even that isn't going as I had thought.  Does anyone at the U of M give a shit?  I'm thinking no.  He's sent in blood work, I've done bloodworm, he did a saliva follow-up because time had expired.  And yet, here we are....3 weeks later, and no contact.  What the hell?  I mean......LIVING ORGAN DONOR WANTING TO DONATE ORGAN HERE!!!  WHAT THE HELL DO I HAVE TO DO?????

This would be my surrender flag.