Post-op from nephrectomy

It's been a long time since I posted here....I'm not going to even try to catch everyone up, so let's just dive in, ok?



Anyone who ever tries to minimize the "majorness" of a bilateral (both sides) nephrectomy (kidney removal) can fuck the hell off.  Never listen to a surgeon, who seems to equate any surgery to a dental cleaning.  I vaguely remember hearing one of the nurses is post-op mention that this is considered a same-day surgery, meaning most people leave the same day (and that she thought I was being dramatic when describing my pain).  Fuck off whoever the hell you were.  Fuck.  Off.

Since I've been away from a hospital for a whole 2 months and away from any kind of a surgery for a year (except sinus surgery back in August), I had blocked out a lot of the memories of how bad physical pain feels.  Not being able to put your socks on because you can't engage your stomach muscles....an abdomen so full of gas that any position feels like you're being stabbed with a thousand tiny knives....vascillating between sleeping and being awake.....feeling nausea and begging all forces in the universe to stop it because you fear your guts may fall out if you vomit.  Yep, all of it came rushing back to me, and it's not over yet because I will probably have another surgery later this week or early next week.  I'll get to that in a second...

So I'm home now, which is good, but it isn't restful.  Joacim and Izzy aren't reading my mind every second wondering how they can help me, and when you actually have to verbalize to another person everything you want, you sound ridiculous and demanding.  Which is why I usually end up doing things myself.  I get mad because they don't know what I want, and sometimes I get resistance when I ask for something.  I'm sure it's annoying to them to have to wait on me, but I don't really get it from them like I wish I could.  After this particular surgery, it's really kind of painful to talk, especially to yell to another room, so I just do it myself.  It's a particularly shitty part of all of this, at least in this house.

And I'm sure some people might be reading this and wondering "why didn't she ask me for help?"... because I don't want to ask.  It's embarrassing.  I sound needy and spoiled.  I just wish for someone to do it without me having to ask.  Joacim still has to go to work...he lost 3 days last week because of my surgery and the snow....he has responsibilities too.  And Izzy....poor little Izzy....I mean, she's only 9 but I throw a lot at her, and she doesn't deserve it.

Speaking of Izzy.....I'm a little worried that this last week has had a significant negative effect on her.  Because of a series of things, Izzy ended up seeing me right after surgery but before I had really come out of my anesthesia.  They took me straight from post-op to dialysis because my potassium was super-high (I'm probably lucky that they did the surgery at all), but I was pretty adamant about not wanting dialysis I recall.  I had done it at home the 4 days prior, and I had JUST come out of surgery and was groggy and in an excruciating amount of pain....I didn't have my blunt needles with me and I couldn't have cannulated myself anyway due to the pain, and I think I was delirious.  I remember seeing Joacim, with a smile on his face because he came back to the hospital after going home to get Izzy while I was in surgery and has no idea of my mental state, and I remember Izzy trying to tell me that Simone Biles sent her a letter back from a class project and she was so happy.  But I was barely listening...I was moaning and crying that I don't WANT to do dialysis....I could see the look on her face that she was scared of what she was seeing, and I couldn't communicate that to Joacim.  And I knew all of this in my head, but it was too late and he was too late getting her out of there and it was all just awful.

He took her home, but she cried on the way home, and then a little more at home.  Ugh.  And then I almost threw up on Friday (and she HATES it when that happens), but even worse today was that she was with me when I drove to see my doctor (yes, driving to see a doctor still has to happen) and I threw up while driving and she was freaking the hell out.  I mean, who wouldn't?  Who likes to be around someone that's vomiting?  But especially when it's your mom.  Your mom who is literally  driving to the dialysis clinic to meet her nephrologist after she just had her kidney's removed.  What can I do?  I don't even know why the hell I threw up....I felt fine.....it was weird.  Thank god I had an emesis bag handy or it would've been REALLY awful instead of just awful.

Everyone tells me how much compassion she'll have when she's older.  I think people say that to make me feel better, and that's fine, but what do I do in the present?  How do I help her through this?  Am I supposed to just ignore her reactions because "she'll be compassionate when she's older??".  Fuck no.  THIS part of my whole illness is sucking so much.  She needs me, and there are times when I just physically and mentally can't be there.  This has always been the case, but now she's old enough to notice and understand that it's scary.

So, did the surgery work?  Well, who knows.  I don't actually think there's going to be a solid answer to that right now.  My BP is back up again, but not as high as it was before the surgery.  This could be due to the fact that I literally vomited right before they took it in the clinic today.  It could also be higher due to the amount of pain.  Whatever the case, I'm going to start taking one BP med tonight and see what happens over the next few days.  I have an escalation plan with my doctor if it doesn't go down or rises, so I guess I'll just keep my fingers crossed.

Note:  I DO have nausea meds, but understand that I'm not nauseous.  I didn't take any pain meds today (because I had to drive and because they cause constipation), and I wasn't feeling sick or nauseous.  The vomit comes on in under 10 seconds and then it just....happens.

There were no guarantees that this surgery would work, and there aren't any other options except more meds (many of these with debilitating side effects) if it doesn't.  I'm just going to put one foot in front of the other every day and not jump ahead to "what if" it all.  Hour by hour, day by day.

This is what my abdomen looks like 5 days post-op.  The incision above my belly button is where they took the kidneys out.  Yes, I'm still swollen and full of gas.  And yes, my belly is terribly hairy, but that's one of those nasty side effects that I was mentioning.  I've been taking minoxidil for my BP for the last 2 months, and it works well, but it has the side effect of hair growth.  It's also more widely known as Rogaine.

I mentioned "another" surgery earlier.  Home hemo is going well, but I've been having some issues with my access lately...my arterial pressures are high, unstable, and getting worse. I had a fistulagram a few weeks ago to try to widen it, but it didn't really work, so now a vascular surgeon is going to harvest another vein from my arm and use it to "patch" a section of my current fistula.

I had an ultrasound on it while I was in the hospital and the tech did a nice mark-up of it to help figure out where the surgeon would actually operate.  I needed to know this because I needed to understand where I could no longer cannulate due to the surgery, and I am now trying to develop another buttonhole higher up on my arm.  And I'm doing THAT in order to avoid having a chest catheter put in.  Dammit....I hate those things, and I'll do damn nearly anything in order to avoid them.  It's not hard to create another buttonhole, but the location of this one is right in my elbow and it hurts because, during treatment, I can feel the tip of the needle (using sharps) inside my vein with any arm movement, so all of the relative freedom I've had has gone away right now until it's established (switch back to blunts).  This means that I can't really do dialysis at home by myself for ow because I need someone with me the entire time to push buttons on the machine when I need them to (also partly because I have 7 fucking holes in my stomach and I can't get up from the chair to reach the machine while running).  Which means I'll go back to doing it in the evening when Joacim and Izzy are home, and that sucks for all of us.  I can't lift the dialysate bags right now anyway, so I need Joacim to do that for me the night before I run.  But if I'm stuck staying still during the run until I'm healed from this upcoming surgery, then I'm looking at at least 6 weeks, because that's how long it'll take to heal and establish ANOTHER buttonhole.  Ugh.

This is a top view of my fistula.  The long line is the actual fistula vein itself.  The horizontal hash marks are where the surgeon is going to patch.  You can see that one of my buttonholes is in this area, which is why I'm working on a new one in my elbow where you can see some work being done there.

This other mark shown here is the location of the vein that will be harvest and used to patch the fistula.

What I am finding now, on this other side of transplant, is to literally try to remain focused on the present.  It's sometimes overwhelmingly depressing to look out any further than that.  The only time I'm going against that is thinking about a real vacation...I mean longer than 2 nights.  We're thinking about taking Izzy to Disneyworld over spring break.  It seems like a place that would be great at accommodating my medical needs (doing dialysis in the hotel room with my machine) yet having a ton of things to do for Joacim and Izzy when I need to dialyze.  Those of you that really know me understand that this isn't ever a place I've wanted to go in the past...too overwhelming...too busy....too much.  But I think, considering I spend at least 15-18 hours a week dealing with dialysis, that it may be a good option to start learning how to vacation again.  If there's a day I don't feel well, then they can go swimming.  We'll stay on-site to avoid the time lost driving back and forth, and we'll keep our expectations of what to see small.  We'll get a meal plan so we don't have to deal with "what's for dinner".  I've been in touch with a few awesome friends who have done Disney several times, so I hope it's not too bad.  We aren't going to tell Izzy yet....hoping to make it a fantastic surprise for her.

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".

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.

Last week was full of nothing but manure.

I need to recap the happenings since my post last Wednesday because I need an outlet for everything that's been happening.  When I blogged I talked about a few of these things, but there's so much that is brewing under the surface that I'm about to burst.  My little experiment in regards to not posting on Facebook was kind of a self-fulfilling prophecy I realized in the fact that very few people took the time to read it, but that doesn't change the fact that I'm glad I did it and will continue to do so.  Those of you that still seek this out to read it want to hear everything I have to say, and BOY OH BOY do I have a lot to say, and for the first time in awhile, I feel OK doing that.

So, let's recap the happenings since last Wednesday, shall we?

• Thursday - I had plasmapheresis on Thursday morning, and it was thankfully uneventful.  I learned last Monday that the correct IVIG that I needed came in a formulation that required it to be put into solution (i.e., it's a powered that needs to be in liquid form in order to infuse).  This process takes 2 hours, and they don't normally even start it until you check in to the infusion center.  They do this because OF COURSE the IVIG I need is so expensive that they don't want to run the risk of someone not showing up and they lose the medicine (you'd be surprised to know how often this happens, which blows my mind).  Since my infusion nurse last Monday had told me that, my plasmapheresis team called over to the infusion center as soon as I started PP in order to get them to start mixing.  PP was relatively uneventful except for the minor freak-out I had at the beginning because we decided to use my left arm for the return instead of continuing with my right.  This is just a mental roadblock for me, but a big one because once veins start becoming inaccessible, options start to become limited, and that's a terrifying prospect since I'm a lifer in this thing.  Again, have I mentioned how awesome my plasmapheresis team is?  There were 5 of them standing around me, holding my hand and encouraging me while I was hyperventilating, and I needed that support more than anything at that moment.  Lucily, we were able to easily access a vein and get going.  It was thankfully uneventful after that.  Immediately after PP was done, I walked over to the infusion center to start my IVIG infusion. Apparently that phone call that my PP nurse made earlier didn't work at all because I needed to have my name added to a special "list" in a binder on someone's desk (insert sarcasm here).   Sooooo I had to wait 2 hours after I checked in.  Luckily, Adam was in Rochester the same day and kept me company for the wait (and brought me lunch :).  I'm going to try to make a really long story much shorter and just say that, throughout the course of the infusion, we never got faster than 40mL per hour, and it's a 200mL bottle (you do the math).  I experienced the highest blood pressure I've had (except for the time on Monday when it was being taken while I was vomiting), back spasms that were equivalent to the back labor I experienced when I had Izzy, and slurred speech.  I didn't leave Mayo until 7:45pm, stopped and got gas and headed home, only to be immediately detoured on the highway home due to an accident that closed the highway.  I FINALLY made it home around 9:15pm.  I am incredibly thankful to my friend Julia for getting Izzy off the bus and caring for her that evening because Joacim had an overnight business trip (man, good timing seems to be elusive to me).  I had to walk the dogs still when I got home, and then I tried to go to sleep.  I had ended up getting a dose of IV solumedrol (steroids) during the infusion due to the back spasms, and I was WIRED!!!  I could hardly keep my eyes closed because everything was so twitchy.  by 2:00am I had given up trying to sleep and just turned on the TV.  My legs were achy and restless so I wore my sexy orange compression stockings, and finally, at 4:15am, fell asleep, only to be woken up by my alarm set for 5:45am.
• Friday - Functioning on 1.5 hours of sleep is not really a great idea, and I'd highly discourage anyone from trying it.  Shit, I was tired.  And starting to get REALLY really sick.  The cough I had(have) is deep and phlegmy and disgusting.  But I had to get up and walk the dogs before I left (because, seriously, what kid wants to go for a walk at 6:00am in the dark?), THEN wake up Izzy and get her ready, drop her off at daycare and head back down to Mayo for a 9:00am plasmapheresis appt.  Another uneventful run (except a phone call I received that I'll talk about in the next post), and then a bagel sandwich and I was off to the Vascular Access Center to have an ultrasound done on my fistula arm and vein mapping done on my left.  These are both, thankfully, painless, but take a long time because they're measuring vein size.  I think they're just trying to see if they can make my current fistula bigger (which will be needed for dialysis) or whether they abandon that one altogether and create a different one someone else.  Each option sucks.  ALL of the choices I seem to be making later are choices between awful and horrible.  Fuck, I hate it all.  Every.  Single.  Fucking.  Thing.  And I had to lie there on a flat table with a flat, fiberglass panel wedged under my shoulder blade to rest my arm at a 90 degree angle to my body, which caused a horrible kink in my neck, which then led to a migraine (as most headaches do these days).  I managed to drive home (how I'll never know) and just felt awful (from lack of sleep, from the hideous cold, from the fact that my body is building up a ridiculous amount of toxins and there's no fix to it), showed, and was in bed, asleep by 9:15pm.  Joacim had gotten home earlier and fed Izzy, but he was sick now too, and we were just a pathetic pair.  I have no idea how Izzy is escaping this demon virus.  
• Saturday - We had to get up early on Saturday to go to a yearly event where we get our Christmas tree.  I was still tired, and feeling even worse from my cold (but still managed to get over 9 hours of solid sleep).  Usually there's snow on the ground and it's cold every year we get the tree but this year, the parking lot where we park is flooded (thank you climate change deniers for helping to continue this trend), and we had to be bussed in.  Seriously, it feels like every little thing that doesn't go the way it always had, or the way I envisioned it, is a personal affront to any sort of happiness that I think I deserve.  I take EACH one of the personally, and it's a ridiculous thing to admit, but it's the truth.  Can I just have some FREAKING SNOW FOR CHRISTMAS????  I mean, it's MINNESOTA...THE GREAT NORTH....and it's 40 DEGREES ON THE 5TH OF DECEMBER!!!!.  After we picked up the tree and set it inside to thaw, we spent the rest of the entire day watching TV.  Izzy mentioned that it would be fun to have a movie marathons and that's exactly what we did.  We (meaning Izzy and I as Joacim would rather watch paint dry) had a Hallmark/Lifetime/Ion/Freeform binge on all the cheesy, awful Christmas movies, and I was happy, and I'm glad that I have someone to share this awfulness with in my kid.
• Sunday - I woke up to my 9:00am alarm for my meds, took them and started vomiting about a 1/2 hour later (I'm absolutely convinced that it's the BP meds, and I've talked to my doc, but we're pretty limited here).  This shit is no joke.  I went straight back to bed after I cleaned up.  I was/am feeling LOUSY.  I'm a complete mouth-breather now and just gross.   Joacim (also still sick) somehow managed to crawl out of bed, shovel the little snow we got overnight and play with Izzy a bit outside.  He opened up the windows upstairs with the intentions to "freeze" out the virus (guess he forgot I was laying there in a heap under the covers????) but I stayed put in that bed in that blissful place between sleep and awake (without a hint of guilt) until 1:00pm.  I had every intention of decorating the Christmas tree that day, but that clearly wasn't happening.  So, after trying to eat a little something, I headed back upstairs, parked myself in front of the TV and watched more cheesy movies. I have very little appetite right now....I can't tell if it's because of the kidney/toxins or because of the cold, but it isn't good.  I lost nearly 6 pounds on Saturday due to GI issues and the 13 hours I spent sleeping Saturday night/Sunday morning, and I'm pretty sure I'm terribly dehydrated, which is hurting my kidney too.  I couldn't WAIT to go to bed again last night.
• Monday - I'm at Mayo again, right now actually, receiving my 2nd IVIG infusion.  I had plasmapheresis earlier, and my infusion just started at 1:25pm, so I'll probably be here until around 7-7:30pm.  I got the IV solumedrol as a pre-med this time, so hopefully I'll be able to avoid most of the awfulness I experienced with the infusion on Thursday.

That's been the last 4 days, in a nutshell.

I think I need to be doing this more regularly now

I can tell that my lack of an outlet for all of the emotions that are swirling inside of me are directly affecting me and everyone around me.  This blog used to feel like a place where I could let it all out....everything I was feeling and how my body was changing and how devastating it all was to me.  I mean, you have to admit that there haven't been too many posts with a positive spin in the last year or so, but at least that's honest.

I don't know if it was the election that finally broke me, but something did, and I just felt the need to crawl up in a ball and block out the outside world.  People that I once thought of as good people or friends said or wrote something that flipped a switch in me that made it impossible to go back.  I've realized that I have a lot more acquaintances than friends.  There are a handful of people that have really been there, been patient with me.  I think they understand that this is hell for me, but they continue to reach out to let me know that they're still there when I need them, and they don't harbor resentment towards me for not always being in touch.  THAT is a true friend to me.

I read something that made me laugh out loud at the irony of my own situation.  It was an article that someone had written who had spent time volunteering on a children's transplant floor at a children's hospital.  One of the things she noted in her list was the fact that these kids are surrounded by an army of supporters.  Prior to the transplant, I would've said that I had an army of supporters, even though a large majority of them were "virtual".  I felt supported and loved, both by my friends and by Adam's friends.  But things have changed over the last year, and that bubble is gone.  I am partly to blame for this because, when things started to get really bad, I kind of shut down.  It's totally normal for people in my circumstances, but it sends signals to people.  These people may want to reach out and offer support, but they're worried about "bothering me", so they don't.  And it all ends up with me feeling very lonely, pretty much most of the time.

This feeling has been exasperated in the last few weeks.   The day after the election, I deleted Facebook from my phone.  I realized that it had become a place that caused me literally nothing but anxiety.  I haven't deleted my account, and I occasionally pop on there to see what I missed (absolutely nothing), but it has deepened the isolation.  There are just a few souls on this planet who understand, but they don't live next to me.  Talking to them online doesn't always replace a comforting hug, or a friend you can look in the eye and REALLY tell them what's going on in your head while having a cup of coffee.  There just aren't that many people.

I was listening to a podcast Monday on my way home from a hellish day at Mayo, and it was about a person who had experienced several traumatic and life-changing events in the short course of a few weeks, and she articulated something I've been feeling for a long time.  I no longer care to have small talk....I'm in for the "big" conversations.  I think this comes across as aloof or disinterested to many people I encounter, but that isn't the case.  My mind constantly swirls with big things, like:

• What in the hell is happening in this country?
• Am I doing right by Izzy?  Will she grow up to be ok?  I mean, I'm not exactly the brightest spot of sunshine.
• Will I ever work again?
• Will I ever contribute to society again?
• Who am I now?
• What's the next awful thing that's going to happen to me?

Speaking of that last statement, I just got off the phone with the dialysis access clinic at Mayo.  This was an unexpected call notifying me of an appointment scheduled for an ultrasound of my fistula and an office visit with my vascular surgeon (the doctor who surgically created my fistula back in April).  My nephrologist emailed my vascular surgeon last night noting concern that my fistula hasn't developed any further and that we were starting to have problems accessing a vein for the return line at plasmapheresis (all true, although we kinda knew that the fistula wouldn't really get any bigger).  My creatinine is also pretty high now at 3.6 as of Monday (I was fairly dehydrated that day so I knew would be higher, but even without that it's still high) and dialysis is starting to appear on my horizon.  Even though I've always known it, it's still crushing.  I cried some....I'm sure I'll do it a lot more.  Wow....it's just so disheartening.  They scheduled the ultrasound for Friday at 1:30pm, and then an appointment with the surgeon next Wednesday at 3:15pm.  These make 2 extra trips to Mayo that I have to make.  The following is how this week has gone so far and what next week looks like, because this is how my world is now:

Previous week:  I've been nursing a slowly-building cold for several days now.  It's mostly been sinus drainage, but it started to move into my chest on Sunday.  I've been a little miserable because I can't take any decongestants due to blood pressure, so I just kind of have to suffer through it.  It's most likely viral, so an antibiotic doesn't do much.  I also seem to have now frequently-recurring case of pinkeye that moves back and forth between both eyes that's caused from allergies and my cold.  It seems like this is going to be a frequent visitor for me now that I'm immunosuppressed.

• Monday:  I had labs and plasmapheresis at 9:00am.  The two veins we've been using for the return (in my elbow) are both filling with scar tissue and it's getting more difficult to insert the IV cannula into (they use larger ones than normal IV cannula's due to the high flow rate).  We were finally able to get a line in my forearm, but these hurt a lot more.  I've had it done once before, and the treatment goes fine but the swelling/pain/bruising that occurs a day after is hard to deal with.  I'm unsure why it happens, but most likely is that the vein doesn't clot as fast after they remove the cannula, and I never like the bandage wrapped tightly around my arm because it makes my hands swell.  Once we got up and running, I took my meds, and within an hour I was vomiting.  It comes on fast when it happens, and I'm 95% sure it's due to the labetalol I take for high blood pressure.  This is the first time I've ever vomited from the morning dose though.  I get nauseous from the afternoon dose, and it happens with some frequency in the evening dose (I even threw up at an Adele concert).  This is concerning on many different levels, but mainly because this BP med seems to work, and it's hell trying to find a new one that won't negatively impact my kidney or potassium levels.  And it's not exactly convenient to be worried that you might throw up at any one of 3 times a day.  I was happy to have a kind nurse who held my hair while I vomited into a waste basket on the side of the bed (she was giving me calcium at the time due to the plasmapheresis treatment, and she had to use what was closest).  Such a glamorous moment.  I had been able to see my doctor prior to all of the drama, and he noted that I sounded pretty terrible and looked fairly pale.  He had noted that my IGG levels were really low the last time he checked them, and that it was time for an IVIG infusion to bring them back up again (to help fight off infections).  I dread these because they take usually between 4-5 hours, but he got it scheduled right then and there for the afternoon, so once PP was over, I headed over to the infusion center.  They were running behind, and I didn't end up getting the IVIG started until more than 2 hours after my appointment time started.  There were issues with the initial IVIG bottle that they had (it was the wrong one) and then I had to take tylenol and benadryl and wait 30 minutes for them to start, so it took forever.  I have always had reactions to IVIG (or really any infusion made from a blood product) and Monday was no exception.  My doctor ordered an IVIG for reaction-sensitive patients like me, and it worked relatively well back in March when I had it, but we realized about 2 hours in that THAT IVIG wasn't the one that I was receiving.  We never got past the initial starting flow rate because my BP rose dramatically (they start large-molecule infusions really slow so as not overwhelm the heart).  I kept feeling worse and worse and it was getting harder to breathe, so I asked the nurse to check again that the infusion I was receiving was the exact same one that I received the last time, and that's when she noticed that they were different.  She was able to get a hold of my doctor and we stopped the infusion (thankfully, because it feels as though it would've ended badly for me).  I felt REALLY wonky after we stopped (it was difficult to talk and I was having trouble walking), so I hung out in my room for another hour, just resting and waiting for a bit of normalcy to return to my body.  I hadn't eaten anything since I threw up earlier in the day, and it was 6:30pm by the time I left the infusion center.  I stopped and got a baked potato, ate it in the car and then drove home.  What a fuck of a day.

• Tuesday:  I woke up with a headache, so I took a couple of Tylenol at 7:00am and headed back to bed.  I woke up at 9am to take my morning meds, and a half-hour later I was vomiting again.  I'm going to overshare for a moment here and tell you that I pee myself whenever I vomit.  Adam's kidney is situated kind of on top of my bladder, and no matter if I make it to go to the bathroom before I vomit, it still happens.  It is the most demeaning thing that's happened to me (and that's saying a lot) and is especially worrisome since I vomited in the morning 2 times now.  It didn't happen at Mayo, which I can't really explain except that I was sitting in a bed with my legs up instead of hugging the porcelain god.  No matter....it sucks, it feels horrible, my eyes swell shut and my lymph nodes swell so much in my neck that it nearly disappears (my neck, that is).  I'm loud when I do it, and it terrifies my daughter when she hears it.  Imagine, for a second, what it must be like for Izzy to watch this and hear it but not know what it all means?  God, it rips me to pieces every day.  I showered quickly, washed my clothes, and then headed to the sofa downstairs and closed my eyes for the rest of the day. I somehow managed to find the strength to drive to Izzy's school to drop off her guitar (guitar lessons on Tuesday) and then drive back 2 hours later to pick her up, but was horizontal every other moment of the day.  I started to worry that I should go to the hospital by the end of the evening.  It was getting harder to breathe, and my fistula arm is still swollen, but I was worried about the risks.  If I go to an emergency room, and tell them everything that's wrong (swollen fistula arm, reaction to IVIG 2 days prior, a hemoglobin of 8.4 and a creatinine of 3.6), they're going to freak the fuck out and possibly make decisions that could do more damage, and I honestly didn't think I had enough physical energy to fight for myself.  Because that's what it takes.  There isn't anyone else to fight for me.  Joacim has pretty much no idea of the specifics of it all, so he isn't any help.  I have to be fully aware of what's going on before I step willingly into an emergency room because I just don't trust that they'll know what to do.  I took some medicine for a migraine and nausea, and was able to get some sleep last night.

• Wednesday:  Today I woke up without a headache, and my face is slowly returning to normal (I don't even bother to take pictures of the weird things happening to my face because it's just the same variation of freaky and awful).  My chest hurts like hell, and the cough is deep, but I'd still rather wait until I go to Mayo tomorrow to have them check me out.  I'll make it through this day.

• Thursday:  I have PP at 9:00am, and then we're going attempt the IVIG infusion again at 11:15am.  I'm thinking about driving down early to be there at 7:30am to see if I can get the ultrasound done early so as to not have to drive down again on Friday.  It will make for a very long day, but worth it if I get it done.

• Friday:  My plan for Thursday probably won't work so I'll need to drive down for a 1:30pm ultrasound

• Monday:  Another PP treatment and a 2nd dose of IVIG.  Another full day spent at a Mayo.

• Wednesday:  I have a 3:30pm appointment with the vascular doctor/surgeon.  This is the ONLY time he available and in clinic until January, so there's no changing this one.  But Joacim will probably come with me because I'll be a wreck, which means I'm going to have to find someone willing to take care of Izzy until we get back.

• Thursday:  Another PP appointment and most likely a blood transfusion.   Again, I'll be here all day.  It's very concerning that I'm so chronically anemic.  My last blood transfusion was near the end of September, and I give myself a shot every Sunday to boost it, but nothing's working.  This is a big problem in the long run because no one knows why I'm so anemic, and it's unrealistic to expect to get a couple of units of blood for the rest of my life.  And my blood pressure will get really high so we'll have to keep the flow rate really slow and it will take foreverrrrrrrrrrrrrr.

It's impossible to stay positive right now.  I'm not even going to pretend on here to see a bright side.  There isn't one.  Every bit of it is being sucked out, and there's no replenishment of good stuff.  I can't get the full joy of watching Izzy do all of these amazing things because I'm stuck in thinking about all of the ways my health limits her and all of the things that she'll do in her life that I'm going to miss.  A few weeks ago, I made the ridiculous comment that if things continued to stay relatively stable, I could see trying to go back to work for a day or two per week.  That seems completely ludicrous right now.  How in the hell am I supposed to be hopeful about ever going back to work when I'm spending so much time trying to stay alive???  Do anybody have any idea the emotional and physical effort that is required to keep doing this with literally not even a faint glow at the end of the tunnel????????

I'm pretty sure that my surgeon is going to want to do a surgery on my fistula to make it longer by adding a graft (grafts don't last as long as fistula's, so this sucks), or he's going to want to create an entirely different one higher up on my arm (also terribly shitty).  That means another surgery (most likely before Christmas) which I'm terrified of.  It also means 3 Christmases in a row now of some sort of medical nightmare (2014:  started PD, 2015:  recovering from transplant still as well as surgery to create peritoneal window to drain excess fluid, 2016:  fistula).

The last surgery on my fistula was INCREDIBLY painful, and I can't imagine trying to enjoy the spirit of the season in that much pain.  How in the hell will I wrap a present?  How will I cook?  How will I enjoy anything?  

I shut down the automated service I used that posted these posts to Facebook.  I think people lost interest in my story when they finally realized that there would be no happy ending to this.  Maybe that's why I stopped blogging too...because I felt like no one really cared.  I am sure that people's intentions are good when they say things like "sending prayers" but honestly, prayers aren't going to help me, prayers aren't going to give me a hug when I need it, prayers aren't going to cure my FSGS and heal this kidney.....I need a huge medical breakthrough.  That doesn't just go for me, but for anyone dealing with a bad situation.  There are just so many other things that people can do.

This post turned out to be much longer than I had anticipated.  I have months of things I want to write about, but I know I'll never be able to catch up, and I've missed a lot of the emotions I was swimming through at the time.  I know I'll regret it, but it couldn't be helped.

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!