1 year kidneyversary

 Today marks one year since I received a second kidney transplant, and the thing people will wonder is "how am I doing"? And, as has always been the case on this blog, the answer isn't simple. When I first started writing this blog, it was so easy to sit down and pour out my thoughts, but now it seems almost impossible. I don't know if it has something to do with my inability to focus much right now, my absolutely "too many tabs open in my brain", or if I'm just emotionally dead inside.  

How can 365 days past seemingly so quickly? I'm going to venture to say it's because, as the last time, I'm still under transplant care. Over the last year, I think there have only been 4-5 weeks that I haven't had an appointment at Mayo Clinic. I just read the last post on this blog, when I was 11-days post transplant and had to laugh a little. This was clearly written immediately before we saw the recurrence of FSGS again.  Back then, 2 weeks post-transplant, Joacim and I were just talking about amazing it felt to not have any protein in my urine. And literally the next day I did labs and they showed protein in my urine. So that's why all of the appointments...we're still trying to keep it at bay and protect the function of the kidney.

I'll try to recall everything we've done so far, but it's been a lot:

• a kidney biopsy to confirm FSGS recurrence
• an infusion of obinitumumab to knock out my B cells in the hopes that it would work to beat down the FSGS, which did knock out my B cells but not the FSGS
• 9 weeks of LDL Pheresis (2 days a week of 3 weeks, and then 1 day a week for 6 weeks). Initially this was to be part of a clinical trial where the principal investigator was my transplant nephrologist, but the company sponsoring the trial with to dis-include me due to me taking thyroid medication. This was annoying and stupid, but I was still able to complete the course of treatment, but it didn't have a significant effect on the amount of protein I was spilling.
• so then we started plasmapheresis again. This didn't work much for me the last time, but this time it makes a significant positive impact on my protein spillage. So much so that sometimes my team has gotten a little over-confident with my results but also given me a much-needed break from Mayo (sometimes 3-4 weeks at a time), only to have my protein soot right back up
• After every plasmapheresis treatment (of which there would be 2-3 per week) I would do a 2 hour infusion of IVIG. After my last transplant we did a lot of plasmapheresis too, and a few IVIG infusions, but likely not enough as I became quite ill with a lung disease/disorder similar to something called bronchiectasis. So now we do IVIG after every plasmapheresis treatment to ensure I stay healthy, which has worked very well so far.

All of this was before Christmas

• I had a nice break from Mayo over Christmas...4 week in fact. But my protein levels got quite high, so we hit plasmapheresis hard after New Year's. We started out with 5 per week for 1 week, and then 3/week for 3 weeks, then 2/week and then 1/week for a couple more weeks, with a 2-hour infusion after each one of those.
• Somewhere in the middle of that we started a new medication called daratumumab. When my doctor talked to me about this medication and how it was to be administered, he said 16 weeks of an injection, however that was not the case. The first infusion was 6 hours or so, and it started on a Friday after plasmapheresis and IVIG. I was not prepared for this, hadn't had lunch and by the time I left Mayo at 9:30, every thing was closed. I didn't return home until 11:30pm that night, and I was enraged and exhausted. I even called the Mayo Patient Experience number to complain about this...the lack of communication from my team. I'm not exactly satisfied that it affected anything, unfortunately.
• Somewhere in March I got another break. I was literally in remission from FSGS....a place I hadn't been since 2008 if. you can believe that. but after another longer break, protein shot back up and I was back to plasmapheresis and IVIG.
• It gets a little fuzzy in my memory here, timelines and all, but most recently I think we're still trying to dial in exactly how much plasmapheresis I'll need and how often. I had another dose of obinitumumab a couple of weeks ago. I've been having my labs checked at Mayo in New Prague (a 30 minute drive as opposed to a 2 hour drive), as well as having my site dressing changed on my catheter and IVIG infusions. When my protein gets too high, I'll do 1-2 sessions of plasmapheresis. The plan for the next few weeks is to do labs Monday mornings and then plasmapheresis/IVIG on both Monday and Wednesday.  

I feel like I'm suffering from a case of whiplash, going between periods of intense treatments to periods of home life, and it's been difficult. When someone asks me how I'm doing, I have no idea what to say. I'm happy that my kidney is still functioning, but it is requiring a lot of me to keep it that way. There was an intense fear that I would have to go back to work. Both my long term disability and my social security disability start a clock 365 days post transplant to see if I'm healthy enough to resume working. I have some confidence that it'll be delayed now, but it's always looming. Honestly, when I first stopped working, I hated it. Didn't know how to fill all the time because if my available time was endless, then nothing was important. Now, after 11 years, I've figured that out and can easily fill a day. I carry a lot of the household things, plus my own health and Izzy's school stuff, and it fills the days quite easily. And, if I'm being honest, I don't really want to work anymore. And I can't imagine there are a lot of companies in today's environment that want to hire a 51 year old woman who's been unemployed for 11 years.

I've still tried to exercise as that's something that's always important to me, but it's not been easy because I've have this damn chest catheter since August (it was put it to start LDL Pheresis), and you can't really sweat with it because the bandage comes off and there's a risk of infection. I still sweat....it's getting to be that time of the year where it's inescapable unless I never want to go outside. Plus I'm perimenopausal now and suffer from frequent night sweats, so there's that. But hopefully next week I'll be able to get this chest catheter out and have 2 Apheresis PowerFlow ports put in. These are very similar to ports that someone on chemotherapy would have, but this one is designed for plasmapheresis access and flow rates. They are larger and buried under the skin, so the advantage is no dressings to change, normal showers where I can let the water run over my head, swimming in the summer and hot yoga classes. I'm worried that they'll stick out of my skin and people will notice them, but I had the same worries when I got my fistula and got over it pretty quick. Here's what the ports look like (I'll have 2 placed (one on each side of my chest, above my breasts, for supply and return):

Speaking of fistula, mine died. This one really pisses me off. I've been trying since my transplant to get a fistulagram (roto rooter) scheduled because my fistula has a tendency to want to close on itself. While on dialysis I'd get one done every 3 months or so because it did actually clot off one time. I had a revision done to widen the vein and had then done preventatively after that. But the thing about fistulagrams is that they require contrast dye to be injected during the procedure for visibility, but that dye is very hard on kidneys, especially newly transplanted ones, and there was no way my doctor was willing to risk it. So I understand the reason, but am still devastated that I lost it. I think my neph, and maybe transplant doctors overall, don't really concern themselves with fistula care because they don't think someone who had a transplant will need it. But I live in my real world with all of my real world experience, and it seems ludicrous that no one except for me was concerned about it. And no one really seemed to care about it after it died. I even went so far to have a fistula gram scheduled at Mayo for it, so Joacim took a day off to go with me, and I sat in pre-op for 2 1/2 hours past my appointment time, only for the doctor performing the procedure to walk in and say he wouldn't do it. I can't even go into it....it still makes me so very angry, but that's what happened. And so now, sometime in the future, I'll need to go through that whole terrible process of getting another one. More scars, less ideal locations....it all sucks so much.

Yes, of COURSE I'm happy that I'm not connected to a dialysis machine for 8-10 hours a night 4 times a week, but that doesn't make all of the rest of this okay. We still mostly determine my care on a week to week basis, so it's back to the terrible land of limbo, and wondering what'll happen next.  And communication at Mayo has been a mess as compared to the last time. The administrative burden of being a patient right now is tremendous....the number of phone calls and messages to get appointments scheduled, or times corrected, or to explain to scheduling the treatments I'm supposed to be getting has been insane, and easily the biggest source of my frustration. Just the other day, when I went to bed I showed 5 appointments in my portal, but the next morning there were 29. They keep trying to schedule things out weeks/months at a time, but we LITERALLY go week to week.  So that's 20+ appointments that are going to need to be cancelled/resheduled/moved, and that'll easily take 5 phone calls. And if I don't have to travel to Rochester and can do something in New Prague, then I'm going to go with that option. But in Mayo's system, that's a different geographical region which requires my doctor to write a separate order for.

And on top of all of this, I'm STILL actively managing my potassium and taking the same medications I took while on dialysis...ditto with my hemoglobin. Having Medicare this tine as my primary has been an experience. Mostly positive, but because of billing issues created by Medicare my secondary insurance company denies to pick up the remaining costs of 3 or my immunosuppressant mediations. That I'll take for the rest of my life.

I had hoped I would've taken a few trips that I dreamed about while on dialysis, but that hasn't happened either. I've only been to Tampa in August (steamy) to tour a college, and then to Indiana in January for a funeral. No Italy or Greece anywhere in sight. We've a trip planned for Norway this summer, but are concerned that the war in Iran will wreck that too, but still trying to be a little optimistic on that one.

And to wallow a little bit, I miss having someone to celebrate this momentous day with. Adam was my ride or die with our transplant (which we still celebrate in our own little way). I'd thought I could celebrate this with Joacim since it DID happen on his birthday, but he's on his annual fishing trip (the same one he was on last year). I was with my daughter all day but she didn't mention it. Thank goodness for  a good friend who sent me a sweet message today or else it probably would've gone completely unnoticed by the universe.

I'll admit that I haven't written a letter to my donor's family yet. I feel terrible about it, but I keep waiting for good news to tell them, so that they felt good about their decision to donate their loved one's organs, but I just haven't figured out what to say. I keep thinking something will come to me, and it will, but I'd like to write something more than "Thank You".

As always, I wish I had amazing news to write. But also, as always, I'm giving it to you straight, warts and all. But I do want to convey that this kidney is so much happier and healthier at this time in the process than Adam's kidney was at the same time. Why it's so different is anyone's guess, but the FSGS seems to be less aggressive this time, and I've had 2 different medications that I didn't have the last time that could be making a difference. It'll always be a mystery, but it's entertaining to hypothesize on what's different.

Okay, I think that's about all I can write at this time. Thank you for your kind thoughts, your prayers and for reading this far :) I'm still fighting and not about to give up.

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.  

I should be...

...in a beautiful dress at the NKF Orange Gala taking place right now with my Adam, Noel, Jen & Pepper.

...feeling better.

...able to write anything legible.

...able to plan for something next.

...enjoy a good day when it comes.

...able to tolerate dialysis better.

...myself again.

But none of these are coming to fruition.  I'm not able to check a single one off of the list today, or any day recently that I can recall.

I stop blogging because the thoughts in my head get so jumbled up now that it's hard to keep grasp of all of them before they slip from my memory.  If I think back to when I started dialysis in January, I'd say that most of the days just kind of blur together...I have this "fog" that seems to have settled in and made itself all comfy in my brain and I just can't shake it.

Some days I wake up and my brain is razor sharp again....I can feel my "edge".  I feel witty and wise and hopeful.  But then I sleep, and wake the next day to find that the fogginess has returned.

I talked to my friend Amy about it yesterday....she's really the only one that gets anything I'm saying anymore :)  I'm worried about the side effects of Xanax, which I take to keep myself somewhat sane. I started taking it when I started PD because it was SO difficult to sleep with all of that fluid initially.  I'm taking the XR (extended-release) version and it's not supposed to be as "addictive" but I'm not so sure.  I honestly haven't tried sleeping without it recently...it's just become another pill.  But I'm experiencing significant memory gaps that I can't quite explain, and it's honestly frightening.  The great thing about Xanax is that, in regards to dialysis, it alleviates a lot of the symptoms I have after treatment (i.e. complete attack on my central nervous system).  They'll go away eventually, but I swear I don't think I'd ever fall asleep waiting for the symptoms to fade, so I take the Xanax.  I've started to do a little research, but I think this is certainly something I need to address.  I'm going to take up my friend's advice and try to work on getting to the point of taking Xanax on dialysis days, but it's going to take some time.

Anxiety is like this velcro creature that seems to be wrapped around my chest.  The battle in my brain feels like the biggest fight I'm in.  I spend SOOOO much time in my own thoughts...feeling every little weird sensation that happens in my body, and then I run wild with all of the worst thoughts.  It's impossible not to.  This sucks every single day.  I hate it.  And I'm scared that this is all there is now.  I'm REALLY scared of that.

There's always been something in the future to look to (even though it wasn't always good).  But there's always been SOMETHING.  Now there just isn't.  Every day is just swimming into the next.  It's the end of April now.....summer will be here soon, and then all of a sudden it was last Christmas.  I mean, seriously...that's how it feels.  I'm here for everything but missing out on it all.  I just can't seem to re-engage.  I can't envision what the future holds.  People talk about living in the moment more, and I gotta say I'm not all that much a fan.  I want a future to imagine.....I want to think about a dream vacation that doesn't involve the nightmare that is dialysis.

Dialysis is working according to my labs.  My clearance is good, my electrolytes are within range, my hemoglobin is going up and so is my albumin, but I feel worse now than I did on plasmapheresis. I had pneumonia in February that landed me in the hospital, and I have it again now.  I caught it early this time, going to Urgent Care the moment I noticed the grumblings in my chest.   Pneumonia is a big damn deal, and it's really difficult to function.  I feel fortunate that I stayed out of the hospital this time as they gave me stronger antibiotics in Urgent Care, but I've gone through 2 rounds now and I'm no better, nor will I be until I get an IVIG infusion.

I had one scheduled 2 weeks ago, so I drove downtown to the U for my 3:00pm appointment.  When my doctor's assistant scheduled the time, I messaged her and expressed concern that they couldn't start it earlier as I told her this was usually a 5-6 hour infusion for me.  She negated my concerns and told me that the infusion center told her it would take 2-3 hours.  But I went anyway...once there I told the nurse how my previous infusions of IVIG went at Mayo (usually takes 5-6 hours because of uncontrolled blood pressure) and we both agreed to postpone it, so now it's set for next Tuesday.  Until then, I'm just trying not to get any worse.

I bought tickets to Wicked for Izzy and I this Sunday.  Fingers crossed that I'm going to be able to keep up my end of the deal on that one and actually take her.

I'm putting a lot of hopes on this IVIG infusion....that it's going to be the mystery cure for the weird yet all-consuming things that plague me.  I have severe issues with my sinuses that aren't seasonal anymore and I've got everything crossed that an immune-system boost will alleviate a lot of it.  I have a sleep study scheduled for next Wednesday that I will probably have to cancel because I can't sleep lying down right now (which kind of makes that time spent studying my crappy sleep useless). This sucks in SO many ways because they are renovating the sleep center right now, and they're only down to 4 beds.  I've been waiting 2 months to get in to this appointment because apparently my snoring is hideous (enough to make Joacim willingly sleep on essentially a glorified futon for 3 weeks in March), and it's certainly not better with pneumonia/sinus-y issues.  Fuck, I'm an awful mess right now.  And in the back of my head I'm wondering what to do next if the IVIG doesn't work.

I AM FULL OF GRIT (word of caution....I'm terrible at proofreading.....)

Grit:  firmness of mind or spirit : unyielding courage in the face of hardship or danger

(Merriam-Webster.com. Merriam-Webster, n.d. Web. 26 Jan. 2017.)

I've had a million blog posts running through my head since my last major update at the beginning of December.  That was the beginning of everything going wrong.  You know, no matter how much planning you do, or how ready you think you are, it always sucks at the end.

Most, if not all, of you have no idea what's been happening the last nearly 2 months, but it hasn't been good.  I am pissed at myself for not documenting it on this blog, because it was brutal, but I was just too sick.  I wish I would've had someone who could've sat with me and watched it all and blogged it for me from their perspective.  I wonder what it's like for people outside of my body to watch it all happen.  I know what it feels like from the inside, and it's simply awful.

The last 2 weeks, I swear nothing but sheer grit kept me going.  I can remember many times thinking, "Oh, this is what dying feels like."  And I'm sure there are people who would be eye-rolling at that statement, but it's true.  Listen, here's the thing about my illness ... if I stop treatment, I will die.  It's not being dramatic, it's being factual.  It wouldn't take all that long ... a few weeks, it would be probably not a pleasant death, but that's exactly what would happen if I just stopped everything.  Some might be wondering why I just took such a morbid turn, and I guess because I am angry that most people outside of the kidney community don't know anything about dialysis, angry about the fact that they think it must be an acceptable way to live because your heart is technically still beating.  I'm just so sick of it.

If you don't believe me, follow me around for a week.  I have an extra room in my house.  You can stay here and watch what it's like to live in my world.  It's a great way to gain some perspective on your own life, that much I can be sure of.

I have the attention span of a goldfish.  Just in trying to write this post, I've gone from making a grocery list to attempting a meal plan, to entering receipts in our money management program, to looking up my med list—and that's in the last 2 minutes.  I am not able to focus on anything right now, and it's incredibly frustrating.

You don't know this, but I just took a 7-hour break because ... well ... life, I guess.

Anyway, back to my ramblings.  I'll try to do a quick recap of the last 2 months:

So I had two IVIG infusions and a blood transfusion back in November. I had been able to get away for a weekend for a friend's birthday, but I remember that being the beginning of the cold I got. The IVIG was necessary to bring my IgG (immunoglobulin G) levels up enough to fight off secondary infections (your body produces IgG, but it's in your plasma ... and since I do frequent plasmapheresis, most of my IgG is removed and can't replenish in time for the next procedure). The blood transfusion was because my hemoglobin was very low, near 8.0 (for women, 12.0 to 15.5 grams per deciliter is the normal range, per Mayo Clinic's website). The blood transfusions for me are very slow, as are the IVIG infusions because of the size of the molecule itself. If they go too fast, sometimes they can overwhelm your heart (I think I've talked about this before but never hurts to review), so the infusions start out at a low flow rate and increase based on time, blood pressure and temperature. The problem is that we never get past the first or second flow rate increase because my blood pressure starts going up pretty quickly and dangerously, so we just have to take it nice and slow. So 2 units of blood will take 7 hours for me, usually ... 6 hours if I'm lucky. Then there's the 2-hour drive to Mayo and back ... a super-long day. I've just had so many of these days the past couple of months.
My cold just never seemed to get better.  My creatinine kept rising.  We increased PP (plasmapheresis) to 3 times a week for a few weeks, but at that point, there wasn't all that much that could be done.  We made arrangements for the fistula surgery and I had that on January 4th.  


It was a SUPER early surgery (7:30 am, I think) so we had to leave the house around 5:30 am.  Thank you to Ellen and Norah and family for hosting Izzy for a couple of nights to keep our girl happy and unaffected!


I wanted to show a picture of what my original fistula looked like before it grew. It was a good little fistula, but the problem is that it was too little. Volume-wise, it was phenomenal. Normal blood flow through veins is ~85 mL/min, and my fistula pumped 2 L/min! Just freaking weird and amazing all at once. The problem was that it was too small (lengthwise) to put two needles in, which is what's needed for dialysis. And hey, we all knew the time was near. So I asked Joacim to take these pictures the right before. The fistula itself is around and behind that bandaid you see on my arm. All of the other veins in my hand are where the fistula had grown to (you can see that large one going down to my pinkie finger). We wanted the fistula to grow upwards (that is, towards my elbow) but it was choosing a different path and we had to surgically correct it.

The plan was to try to connect the fistula to the large vein in my elbow.  The surgeon believed that it was long enough to be able to do that, but wasn't going to be sure until he started surgery.  He planned to travel that vein from my elbow, see where it went, and lift it and move it over to connect it to the existing fistula. At the same time he would tie off the veins that were growing in my hand and other areas.

If that vein wasn't long enough or if it was damaged in some way, then he was going to harvest this doozy on the back of my right arm (which would mean another long incision) and place it in the front to connect everything.  I swear, these surgeons are meticulous magicians.

I think I was just bored at this point and was waiting for the nurses to come and get me.  Joacim was napping I'm guessing.  Everything is pretty calm at this point, as this is the fifth surgery I've had in the last year so we're just hanging out, waiting.

The surgery itself wasn't nearly as bad as I had worked up to thinking it was going to be.  The surgeon didn't have to do anything to the tendons in my wrist, so that made a big difference in the pain and how fast it's healing, I think.  The anesthesia and I didn't get along this time at all.

I believe I'm probably a pretty stubborn patient when coming out of general anesthesia.  I remember waking up in recovery, and thankfully the breathing tube was already out by this time.  That was one of my biggest fears, and the worst thing that's ever happened is waking up with a tube in my throat.  It is absolutely terrifying, and your entire body and mind want absolutely nothing other than for it to be out of your body.  Anyway, I was lying on my left side (I'm a lefty fetal-position sleeper) and nurses kept walking past asking, "Why is she on her side?" and then I'd hear someone else say "She really wants to be on her side so we'll leave her there."  It's my go-to state when I'm sleepy or when I don't feel well—purely involuntary.  And I think the first thing I asked was "How many cuts???"   I got back to my recovery room after a few hours in post-op, but it still took me a while to be able to speak coherently and make sense (it's really weird coming out of surgery; it would probably be fun if I didn't know it was going to suck when I really woke up :O).  I vaguely remember Joacim asking how long I was going to stay "like this" and the nurse said anywhere from a couple of hours to a day.  It didn't take all that long to regain my brain—but once I did, I started throwing up.

I started throwing up red fluid from the Jell-o after that. There was no food in my stomach since I hadn't eaten anything since the previous evening.

Then I tried a cracker, but that didn't stay down long either. I have no idea where all of the fluid was going from when I was vomiting, but it was very Exorcist-like. In this video, I think I'm saying to Joacim, "Good job, baby."

I think you can tell here that I wasn't feeling like a rock star or a warrior. More like dead fish on a platter.

After a few more rounds of vomiting and pissing myself all over, because that's what happens when I vomit (damn, I sound soooo sexy), we thought it was safe to drive home. It was late by this time, around 8 pm or so when we left Mayo, and we were doing good until literally 2 miles away from our house, where we had to pull over so I could vomit again. And then there were a few more times at home. It was an ugly scene that night.

Here's what the fistula looked like 2 days post-surgery:

And here's what it looks like tonight:

I won't be winning any forearm beauty contests at this point, but I'm just going to tell people that I was attacked by a shark, or maybe a pike would sound more realistic since I live in Minnesota.  When the fistula grows and there's this snake-like thing underneath, I'm going to tell kids that I have a dragon that lives inside me.  Hopefully it won't be too noticeable, but if it is, I hope to make people feel at ease about it.

Which brings me to the next awful part of this story. Yesterday, I started dialysis. We'd been dancing around it for a few weeks now, and most of my numbers (electrolyte-wise) were okay enough for me to delay and continue plasmapheresis, and it was going to kind of be up to me to decide to start based on how I was feeling. That's empowering but scary—I mean, I already felt like death, so how much worse would it get? Would Izzy be with me and suddenly I'd pass out? Shit, what was the worst-case scenario??? So I did another week of PP at Mayo, but by Friday, my nephrologist called and said that my hemoglobin was dangerously low at that point and he wanted to avoid another transfusion. He was also worried about acidosis (too much acid building up in the body) because the meds I was taking for that weren't effective enough any longer, and it was time to start. I was prepared. Incredibly sad, but prepared. I had visited a new nephrologist here locally with the help of my team at Mayo, and she's wonderful. I visited a new, small dialysis clinic closer to home to get familiar with it. And I started yesterday afternoon. No fanfare, no crying (okay, a little crying beforehand at home), but I just went in and did it. My friend Julia dropped me off and I got started. This nephrologist is very kind and wanted to start me off at a slow speed for a shorter amount of time rather than shock my body with the real thing right away, so I ran 2 hours last night at 200 mL/min. The first hour was fine, but the headache and tingling started right at the beginning of hour 2 and it sucked just as much as I'd remembered. This video pretty much shows what I think about starting dialysis.

But after I was off the machine, I was able to walk around, and I actually think I could've driven myself home, but I was happy that Izzy and Joacim were there to get me anyway.  This will be important long term as I've got to find a way to drive myself there and back.  Transportation is not included in any type of insurance I have, and I've watched driver companies treat these patients with the respect of a wadded-up paper towel, and I won't be one of those people if I can help it. 

Before we got home, we stopped at Lund's (grocery store), got some fried chicken, mashed potatoes and gravy (my most favorite meal of all time) and candy (Izzy has student council mini-speeches and I was told candy was a winner!), and headed home because I was weirdly ravenous.  I hadn't eaten much before dialysis because I'd expected to vomit since that had happened every other time I started, but the gentler start seems to have negated that (win!). I did end up getting a terrible and rather sudden migraine about 4 hours after I got home, so that sucked any joy out of the first day.  I have these horrible tremors that I've mentioned before, but they're worse after dialysis.  They might also be related to a thyroid issue, but that's for another post.

But I'm not going to blame this on dialysis entirely.  I've had a chronic sinus infection since November, and it's time to see an ENT because my Eustachian tubes are now getting blocked and it's hard to hear anything.  Whenever my left ear gets totally blocked, I start to get a headache.  I guess now that I'm on dialysis, I can finally start scheduling things like this.  Apparently I also need to schedule a sleep study because I now snore, according to Joacim.  It must be serious because he's gleefully moved into the spare bedroom for now :(  I'm going to blame it on the chronic sinus infection, but I will do a sleep study.  Can you imagine walking into our bedroom one day, both of us on a CPAP, and me connected to a home dialysis machine???  It's like automation at its finest!  I finally scheduled a therapy appointment for me next week (yay!!!)—everyone knows I need someone to talk to since it's pretty lonely in my world.  We're also going to see a family therapist to focus on Izzy to make sure she's handling everything OK too.  And at least I know what every Monday, Wednesday, and Friday will bring for the foreseeable future (hopefully not for forever, but that's the plan for now).  That's good and bad because I can plan, but I can never be spontaneous.  A weekend at a cabin in northern Minnesota seems harder now than it did, but I'll figure it out.  And I'm going to start working now on a way to travel to Sweden either this summer or next year. This will not stop my life.

A lot of people will wonder what they can do or how they can help, and I'm trying to come up with realistic things that can really help us, so I promise I'll let you know. When emptying your own shredding bin seems like a Herculean task, it's hard to point people in the right direction. But I'm working on it, because I know people want to help and because I know we need it. Joacim's job is changing and might require more travel. He and I are both terrible at asking for help because we have huge guilt complexes for some reason, even though we're both burning the candle at both ends. The only thing right now that helps us for certain is making sure Izzy is happy and occupied. It doesn't take much to keep her happy, but staying inside with both of us all day isn't it. So that's my guidance for now.

This is shitty news, but I'm not going to wallow in this right now. I 100% reserve the right to do it later though, because this is my life and I can. But right now I'm back in a state of logistical planning, and there are things that I want to do. Dialysis will, eventually, help me feel better, for at least 4 days out of the week I hope, which is 4 more good days than I've been getting.

I miss the nurses on the apheresis floor dearly, and hope to keep in contact with all of them. I'm going back next Thursday to have an ultrasound done on my fistula and meet with the access coordinator to see if it's ready for use, because that means that I can get rid of this bad boy that I also had to get when I had the fistula revision surgery on the 4th:

I may be smiling, but I have every single minute of having this thing in my chest, and I'm missing showers already.

I hope that there will be many more posts coming up ahead.  You may guess that I'm a liberal person when it comes to politics and what's happening in Washington, DC, and around the country right now is terrifying me.  But it's not paralyzing me.  If anything, it's motivating me to take action.  I'm going to be telling you about some of the things that are coming up that I'm participating in, one of which I'll need your help with right away (but I have to get the damn page set up first).  So stay tuned if you want to know how you can help because what's happening to my healthcare will affect yours at some point too.  I know that there are a lot of people who want to bury their head in the sand, but that can't happen. The time for action is now.  I was probably at my sickest point ever last Saturday, but I still made it out to march with my fellow people striving for equality and healthcare.  If I can do it, you can too.

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.

23-days post-transplant

I thought my reality post-transplant would be different than it is.  There have been so many ups and downs, and I can't possibly keep track of them all, but I'm going to try to bring everyone up to speed.

First off, I'd like to say a huge "Thank You" to everyone that is still hanging out with me on this journey.  I know that a lot of you are looking for frequent updates because I'm usually pretty good at it, but everything that I've been through has definitely pulled the rug out from under me.  There has been several times that I wanted to write something, but I didn't think I could find a single positive thing to write about, and after awhile I just sound really depressing, so I stopped writing entirely.  I was also worried that Adam would somehow think that I didn't appreciate his amazing act.  Believe me, I do.  This is still SO MUCH BETTER THAN DIALYSIS.  I'm not sure if I'm a whole lot better off, but I figure it's time to dig my heels in again and keep moving forward, and getting it out of my mind and into this blog usually helps, so I figured I'd give it a shot.

Since October 29th, I've had the following tests/procedures:

• 21 blood tests
• 21 urine tests
• 1 kidney transplant
• 15 plasmapheresis treatments
• 2 IVIG infusions
• 3 thymoglobulin infusions
• 1 blood transfusions
• 1 kidney biopsy on my transplanted kidney

Yes, it's a lot.  Every day that I have a blood or urine test is fraught with fear and anxiety over what the results will be.  A bad result will wreck my entire day, and maybe the next day if I don't have another blood test scheduled for the following day.  And the longer this goes on, the harder it is to pull myself up by the bootstraps and look forward to what's next.

My FSGS is back.  It's mild so far, but it's definitely back.  When I came to Mayo, I was spilling over 40 grams of protein a day.  Right now, I'm spilling 2.5 grams, which is a HUGE improvement, but my brain can't get past the fact that I remember the course my disease took the last time, and it wasn't pretty.  Around 5-6 grams was when I started swelling severely......anyone that I worked closely with at Lilly will remember the days when I could hardly wear shoes.  I think about that, and I get so scared I can't even stand it.  And no one knows what course the disease will take this time, or how long it will take, and that unknown has stripped my spirit.  I've talked at length about how awful the state of limbo is for me, and guess what?  I'm right back in it.  I thought after transplant that I would at least have a significant period of time where I didn't have these worries, but I only really had 2 days before FSGS reared it's ugly head again.  I was totally robbed, and will spend the rest of this transplant worrying or wondering if the end is near.

On the plus side, my creatinine is 1.3 (pre-transplant it was near 18) and that's an amazing, which means that my new bean is handling all of the stress the rest of my body is putting on it with elegance, grace and determination.  I don't know how long it will last, but I'm incredibly thankful for it right now because it's the one source of hope.

I had a biopsy done on Tuesday, which was unplanned and honestly terrified me.  I got preliminary results and was able to speak with my doctor on Wednesday afternoon.  Great news is that my glomeruli (filters) look completely normal (i.e. unaffected yet by the FSGS).  This is great news because once the scarring starts, it can't be repaired, so we're definitely early in the game which means a better opportunity to reverse this.  The bad news is that the biopsy showed some mild rejection.  This isn't totally abnormal but it is something I'm worried about.  This might explain why, even after 15 plasmapheresis treatments, that my protein spillage is still above 2 grams.  All of those plasmapheresis treatments probably removed most of the thymoglobulin (IV anti-rejection medicine) that I received during and after the transplant.  The current plan is to increase my prednisone to 60mg for 3 days (I was at 15) and then slowly wean down again.  I'll do blood and urine labs tomorrow morning, then plasmapheresis, and then I'll do a thymoglobulin infusion after that.  That particular infusion is a longer one (~4 hours) so it sounds as though all of us are going to Rochester tomorrow.  We'll drive back home after that and spend the weekend here, and then Annika and I will go back to Rochester early Monday for more blood and urine labs, appointment with my PA (physician's assistant) and Dr. and then do another plasmapheresis treatment.  The hope is that the thymo will have a chance to work over the weekend, and combined with the plasmapheresis on Monday that we'll start to see my protein decrease.

That's the plan for now, but it can change at anytime.  I should get the EM (electron microscope) results of my biopsy tomorrow, so that may change things a bit.  We've hopefully checked out of the hotel for good, and will be able to drive down for the days where I have appointments.  My prograf level seems to be fairly stable right now, and the tremors aren't awful but it is difficult to do any handwriting at this time (which is why I'm such a fast typer...I had to compensate because my handwriting is dreadful on these drugs).  Don't be surprised if my Christmas cards seem completely impersonal because I'll be using pre-made address labels :)

What to say....

So....it's 824 more minutes until go time (okay, 13 hours, but I have a flair for the dramatic :)

Today has gone surprisingly well.  My day started at 7:00am, and we've been going ever since.  In fact, I'm STILL here at Mayo at my last appointment, which is the IVIG infusion.  Here was my schedule:

• plasmapheresis
• on-call nephrologist
• surgeon
• dialysis
• IVIG infusion

This is the machine that I had today for plasmapheresis.  The glass bottles are the albumin that is replacing the plasma that they removed.  I'm not sure why albumin is in glass bottles, but I'm guessing it has something to do with the fact that albumin is a protein.

After plasmapheresis, Annika and I went back to the hotel to have breakfast with Joacim and Izzy.  I still have my PD catheter to take care of, so here I am emptying my peritoneal cavity and flushing the catheter.

The appointments with the nephrologist and surgeon were uneventful.  The surgeon was a smaller man, so I'm guessing he had smaller hands.  Win.  He did say that they won't be using staples (another WIN) and that the surgical opening would only be 4-5 inches long (and the TRIFECTA of wins!!!!).

We then had a break for lunch and went to Jimmy John's.  For those of you at work who are reading this, you can commiserate with me.  Just kidding...it's close by, and not too heavy of a meal before dialysis.

Dialysis today was also, thankfully, uneventful.  We only pulled 1.5L of fluid off because they want my body to be well hydrated so Adam's kidney has something to work on tomorrow :)  Adam, Noel and Adam's dad stopped by for a visit and I was able to catch up with his adventures today.  I'll admit that I was a little weirded out (for lack of a better term) last night when we met up with them all for dinner, but seeing Adam walk around the corner with that infectious grin alleviated any weirdness I had.

And last, but certainly not least, is the IVIG (which stands for intra-veinous immunoglobulin).  Essentially, it's fake plasma with some great antibodies in it.  This is actually what I'm hooked up to right now as I type.  Another glass bottle means another protein.  They gave me benadryl before the drip started to ward off any reaction to it (just like the Rituximab treatments) so I'm a bit sleepy but still hanging in there.

So that's about it for me today.  Once I'm done here, I'll go back to the hotel to see Izzy and my parents (who arrived today), and then off to bed.  I'll check in to the hospital at 5:30am, which means I have to get up around 4:30am so I can shower with the special soap and get myself together.  Surgery is scheduled to start at 8:00am tomorrow, so be on the lookout for a post around then.  I've asked Joacim to post from my account when the surgery starts, and then again when the kidney is in.  Any other posts are all up to him :)

And lastly, but most certainly not the least, I want to send out a HUGE, immense, never-ending stream of thanks to all of you that have taken a moment out of your day to send Adam and I prayers/karma/juju/wishes for a successful #operationrelocation tomorrow.  Even in my best days did I expect this amazing outpouring of love and support.  I'm not going to go getting all gooey now as I'll save my babbling tears and emotions for tomorrow :)  Adam, you have amazing family and friends.  You aren't so bad yourself :)