Somehow I made it to the finish.

Man, yesterday is a blur.  I was emotionally ragged and threw it out everywhere.  Ah, well...what can I say?  I mean, it's the truest me there is when that happens.

After countless BP pills, IVs, and anxiety meds, we finally got my BP low enough to start the infusion.

The trick was to stand during every single blood pressure reading.  Every 10 minutes.  For 3 hours.

And then I'd take breaks in between readings to attend a webinar on infection prevention in dialysis clinics.

Adam saved the day by bringing me a sammich and pasta salad.  I didn't bring provisions for an ultimately 11-hr stay, and I was starving by the time things got rolling.  So lucky to have such a good friend!

And this guy is continuing to prove that giving away a kidney doesn't negatively impact your life in any way.  Adam and Noel are headed to St. George, Utah this weekend for Adam's first Ironman 70.3.  He's worked SO hard....so many hours running and in the pool....I can't wait to see how well he does and to hear all about his experience when he and Noel come back.  Best of luck to you, Adam!


This infusion was so different than the others I've had at Mayo.  For starters, I've never had issues getting them started due to BP.  But I DID have a BP issue that caused a reschedule of a biopsy in 2016.  That was rearing it's ugly head yesterday and not helping.  I'm freaking the freak out about my blood pressure.  Also, once the infusion got started and going, the nurse bumped it up to the next flow rate (60ml/hr) and we maintained that the whole time, but my BP didn't rise at all, which is COMPLETELY different than every other one I've had.  My BP always rises dramatically when getting these, so what was different the time?  What cocktail of meds did the trick?  Sadly, we'll never know because we just threw everything at it.  There's no learning to be had from yesterday.

I have no idea how long it will take to "kick in".  I felt great last night after it was done, but woke up around 3:00am (I'm guessing because my BP was astronomical).  I took a benadryl and some 0.2mg clonidine, but never fell back asleep, so I'm am just frazzled and hazy today. I have extra fluid from the infusion on me, and my lungs feel soupy today, so I'm going to go into the clinic early and do a 1-hr UF run before my regular dialysis run.  I do this in order to pull extra fluid (hopefully 4 kg off today).

I just hope I can sleep through the entire thing today.

Anxiety will be the death of me.

I'm lying here right now in room 6B of the specialty infusion center at the U of M, and it's not going well

My first blood pressure reading wasn't awful (at least for me) at 160/110, but every single one after that has been up over 180/110, and there's no way we can even start the infusion until it drops.

I've been given tylenol and benadry for pre-meds (had a nice little nap due to that while waiting), plus I've already taken all of my BP meds for the morning, which include:  clonidine, losartan, labetalol, and hydralazine.  They even gave me an extra 0.1mg of clonidine hoping that would help, but absolutely nothing is working.

It's 11:00am right now...I've been here since 7:00am.  In what seems like a last-ditch effort, we're trying Ativan for anxiety.  I've been stepping down my Xanax as I wrote previously, but apparently there might be some rebound effect from that causing my BP to rise.  I swear, I can't seem to win.  I was trying to do what I think is a responsible thing but I may have screwed this all up!

My bp has been really high since Saturday.  I don't know...it's like some switch is turned on inside and it's just amped up.  I can feel it in my heart every day.....it pounds with such force.

So, alone with all of the medications, I've made sure I'm not hungry, that my bladder is empty, I've listened to mediation podcasts, and chill music.  I even took off my bra because the pressure makes me feel my heartbeat more.  In a last ditch effort, I thought I'd write this stuff out and post as a way of releasing any anxiety I have.

I know I'm anxious about the IVIG for many reasons.  Firsts of all, I get nervous during these infusions because of how my blood pressure gets.  Secondly, I've got a lot of hopes placed on getting this infusion and it making me feel better.  Deep in my subconscious, I'm totally fucking it all up somehow and I can't stop it. 

And now the anxiety I'm feeling over maybe having to postpone this AGAIN is awful.  They're talking about possibly doing this as an inpatient as an option.  Even just writing about it I start to get my anxious.

If I was ever worried about dying from kidney disease, it's quickly being eclipsed by dying from anxiety.  I swear, you guys, unless you have anxiety, there aren't words to describe how it feels inside and what it does in your head.  It messes with you.  It makes you feel inadequate.  It's stripped me of my self-confidence and left me feeling unsure of my mind and my body.  

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.

1st dose of Ritixumab

The process has OFFICIALLY started!!!  Yesterday, I went to Mayo to have my first dose of Rituximab.  We left the house at 5:00am (which was PAINFUL) but made it to Mayo at 7:00am for labs.  See how happy we are to be awake?

After labs, we went to Mac's to eat breakfast (of course).  Once we were done, we had an hour or so before the infusion started, so we walked around to some of the nearby hotels to start to narrow down where we'll stay for the transplant.  We weren't able to see the Gift of Life Transplant house because we didn't have an appointment, but we'll make sure to set it up for the next time.  All-in-all, I was pleasantly surprised by the nearby accommodations, and the prices were high but not awful.

My infusion was on the 8th floor of the Eisenberg building, which is a very nice, relatively new (or remodeled) area.  I had a private room with a bed which is great for a longer infusion.  They gave me Tylenol and Benadryl when I got there, and we had to wait a 1/2 hour to let the meds kick in.  There was also a 100mg dose of IV prednisone that came with the Rituximab, which is used to essentially shock the immune system in order to allow the Rituximab to work.

The infusion starts off very slowly with only 50ml/hour, slowly increasing over time to 400ml/hr.  Initially, there are blood pressure checks every 15 minutes to ensure I'm not having any negative reactions to the meds, then once every 1/2 hour after.  Each blood pressure check would increase the flow rate, and that's the info that's on the board in this picture.

Benadryl is awesome.  It makes me SO sleepy.

Joacim stayed in the room with me for awhile, but he got bored eventually so I asked him to go get me some food. I wanted Dunkin Donuts, but they were sold out, so he came back bearing a Cinnabon.  I wasn't horribly disappointed ;)

Neither was he when he got to eat the leftovers :)

All-in-all, it was pretty uneventful.  About an hour-and-a-half in, I started to experience a sore, scratchy throat, but it was fine by the time the infusion was over.  We headed home after it was done....what a LONG day!  The most exciting thing out the infusion was that I couldn't do dialysis last night.  A night of FREEDOM!!!!!

Unfortunately, I kinda need dialysis for fluid balance.  I pee very little now...about 800-1000ml compared to 3200ml+ previously, so most of the fluid I took in yesterday stayed in, and I went to bed pretty full.  I woke up with a pretty wicked headache this morning, so I got up to get some Tylenol, and I noticed that my face was swollen.

So I went back to bed.  Fucking hate a swollen face.  The same thing happened when I received a cortisone shot last year for my hip.  What I hate is how swollen the bridge of my nose gets...it's just strange.  It's mostly gone now, but my face still feels warm and is flushed.  I'm sure by tomorrow morning it'll all be gone (the swelling, that is).

I have another infusion scheduled for 2 weeks from now, and we'll also measure my b-cells to see if there's been an response.  My albumin is still on the rise (yay!) which means more of the drug will be staying in  my system.  I've begun the process to go on short term disability, so hopefully that'll start in the next week or so.  I really need some time before the transplant to rest and focus on being healthy.

Latest trip to Mayo

Finally back home after a SUPER long day.  Since I was getting my lipids done I had to fast, which I did a pretty good job of on the drive down this morning...until I found the stash of candy in my car.  Let's just say my glucose reflected a minor little binge.

But you know what?  Screw it.  A few jawbreakers aren't going to hurt my kidneys.

It's so very humbling whenever I go there.  Even though I'm going through my own struggles, and I don't want to compare mine to anyone else's, it's easy to see how much worse it could be.  I mean, think about all of the people all over the world that go to Mayo Clinic to see if they can make a miracle.  The amount of hope yet despair that the campus can contain is nearly palpable.

I don't think I've ever seen the Hilton Building lobby that full of people waiting to get labs drawn.  The phlebotamist told me this wasn't a busy day.  I beg to differ.  Again, I reiterate that Mayo is a well-oiled machine, yet I'm always treated with the utmost patience and respect.  It doesn't ever feel like a cattle call, and for that I'm thankful.

I had a ridiculous amount of time to kill between my blood draw and actual appointment with Dr. F.  I grabbed some breakfast to cure the hungry, and then walked around aimlessly in the sunshine for a bit.  I went back to the car and worked for about 45 minutes or so (brought my work laptop but didn't want to lug it around) as I had some things I needed to get done today, and then headed up to the penthouse of the Mayo Building (I kid....it's just the top floor).

Yup....hanging out with my iPad.  I was all excited to watch the last 2 episodes of this season's Game of Thrones, when I realized that I cancelled HBO last week without watching them, and now I don't have access to the recorded episodes.  Dumb dumb dumb dumb dumb....

I read a comment on this blog today that humbled me so much.  I feel honored and wanted to say "thank you".....you were a bright spot in my day.

So, anyways....results.  Well, nothing too new here, except that it's getting worser faster.  My creatinine is up to 3.5 now (creating clearance at 22 and eGFR at 15).  Dr. F says that I need to start being careful with my potassium levels now, as my kidney function is so low now.  I'm taking 3 medicines that technically increase my potassium, so I'll start doing an electrolyte panel every 2 weeks now to self-monitor.  If my potassium starts to go up, I'll need to stop taking the meds, and eventually start diet restrictions.  It's crazy how this is a complete switch from 4 months ago where I was in the hospital because my potassium was too low.  This ESRD stuff is such a HUGE balancing act!!!

My iron was low again, so I headed over to the infusion center for a boost and on my way I caught the end of this performance:

<iframe src="//player.vimeo.com/video/103390250" width="500" height="889" frameborder="0" webkitallowfullscreen mozallowfullscreen allowfullscreen></iframe> <p><a href="http://vimeo.com/103390250">IMG 1560</a> from <a href="http://vimeo.com/user1496827">Jenn Trunk</a> on <a href="https://vimeo.com">Vimeo</a>.</p>

I posted on Facebook "Expert advice and entertainment too!".  I LOVE it when I get to see something like this.  Some kid from somewhere walks up to a piano and knocks out THAT performance.  Inspiring.

While I was waiting for my iron to be delivered to the infusion center, a young volunteer walked by and asked if I wanted a hand massage.  Score!!!!  She did a lovely job, and was so personable!  What a nice way to have to get a shot (and that particular shot HURTS!!!)

Guess that's all that I have to report for tonight.  We're off to the U on Friday for Joacim's donor evaluation, and I have my follow-up at the U on Monday.  Such attention being paid to the defective beans this week!

Eeeeeek.....not feeling so hot

This day has sucked from the moment I opened my eyes.
Strike 1: Izzy slept with us last night and did crocodile rolls ALL night.
Strike 2: I woke up at 5:30am so I could actually be on time for my infusion. had my 2nd infusion today at Mayo.
Strike 3: I didn't make it on time because traffic issues caused the normally 2-hour trip to take 3 hrs 45 minutes.
Strike 4: the nurse had to stick me twice because my veins weren't cooperating
Strike 5: rolled down the window of my Ford to pay the parking garage fee, and then the window wouldn't go back up again.
Strike 6: it was -2 degrees (I did end up finding a service station where they were able to get the window up)
Strike 7: I drove 2 hours back to Hudson, WI, met my coworker, and then spent another 5 hours in the car to drive to Milwaukee
Strike 8: I reserved 2 rooms. They only had 1 under my name (luckily, this was also fixed)
Strike 9: I ordered a Caesar salad from room service, and they put 2 whole anchovies on it. It's now a fishy nightmare, so it looks like I won't be eating dinner tonight
Strike 10: I'm SO terribly nauseous and shaky. All I can do is lie in bed and chan scan. However, I need to work. I won't, but the guilt is there.

The only good things about today are that I made it everywhere safely, and I brought my heating pad and sequential compression booties. Score 3 for me.

Gawk, I hope I feel ok tomorrow.

Tired. Tired. But not-so-swollen.

Annnnnnddd...my weight is swinging the other day.  It started on Monday, and by today, I'm down about 10 pounds for the week.  I tried to start keeping track of everything (weight, food, mood, phase of the moon ;) to see if I could draw any conclusions, but honestly, if I'm feeling better, I forget.  Maybe SOMEDAY I'll come up with a sustainable system.  But I won't be holding my breath.

I had another iron infusion on Monday.  This time, I was able to do it at a local hospital, which worked out  well.  It was a craptastic winter day outside (the best word would be blustery) so a few hours in a warm room with a blankie and some iron is just what this girl ordered.

It looks like coffee, doesn't it?  Too bad it's not :)  I COMPLETELY fell asleep during this infusion.  The last one I had at Mayo was a push, but this was a drip that took around 2 hours, plus another half hour for observation.  No biggie...glad it's done, but I don't feel any different..not worse, but not better either.

I've got the clinical trial infusion that begins this Friday, so it's ANOTHER trip back to Mayo.  Keep your fingers crossed that I get the drug :)

Oh, and more good news.  My "friend" Matt from www.onekidneymatters.com is GETTING A KIDNEY!!!!  CONGRATULATIONS Matt!!!