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.

AV Fistula update: 8- 11 weeks out

I realized that I never blogged about how everything is going with my fistula, so that's what this post is about.  Back in the middle of June, I had my 8-week follow-up appointment to check on the progress of my av fistula.  First off, we started with an ultrasound, which was a MUCH shorter appointment than it was for the 4-week one.

This is what the ultrasound room looks like.  For my fistula, I lie on my back and my arm is outstretched over the technician's lap.  The ultrasound goes from my hand all the way up to my neck and shoulder.

I had an appointment with the surgeon as well and I was nervous about what he'd this of his handiwork, but he was actually pleased with the development.  I'm up to 740ml/min which is a good enough flow to start attempting to use it during my next plasmapheresis treatment.  Because my fistula is pretty small, the doctor wanted to put the return needle the vein in my elbow (just like an IV), and the blood would be pulled from a needle in the fistula.

I wanted to take a few photos of the fistula before we started using it to remind me of what it looked like.  The more use it will have means the more changes it will undergo (i.e. growing larger and possible more gnarly :(  You can see in these photos already how the veins have already started changing on the underside of my wrist.

Honestly, it doesn't look NEARLY as awful as I had feared (yet, that is).  It's still pretty easy for people to completely miss that I even have it, which is a relief at this point because I still have my chest catheter.

My next plasmapheresis appointment was actually the next day, which would've been a Wednesday.  I was nervous, no doubt, and I had Joacim take me down to Mayo that day so that I could take a Xanax before we tried it.  They give me local lidocaine at both the access and the return, so I don't feel those needles going in, only the short painful pinch of the lidocaine (think about like whenever you've gone to the dentist and had to have a numbing agent in your gums).  The return was accessed without any issue, but we DID have problems on the fistula itself.

I was pretty upset by all of it.  I had the WORST thoughts running through my head, and Joacim took this picture at the exact moment when I felt that all hope was lost.  I was already (in my head) at the point where I was going to need a new fistula and it was going to be ANOTHER surgery and another 8 weeks of waiting.  That's just how I'm wired...I go to the very worst case scenario first, feel out all of the emotions associated with it, and then figure out how to process and get through it.  I'm fortunate in that it wasn't as I had feared.  What happened in this case is called an infiltration, which is essentially when the access needle goes all the way through the fistula instead of stopping within it.  The hole that's created on the other side bleeds a lot internally and internal bleeding is incredibly painful.

This can happen to anyone, and will most likely happen again.  I have a very shallow fistula that requires a smaller angle of entry.  I think a lot of nurses are trained to start at 45 degrees, which is too much for mine.  In order to get plasmapheresis done, we kept the return in my elbow and used one of the lumens from my chest catheter as the draw.

My wrist and hand were pretty tender to the touch, so the nurses got me some ice packs to use during the rest of the treatment.

You can see how the swelling starts right above the fistula.

The swelling became really noticeable once I removed the gauze wrap at home.

The bandaid that is used is a compression bandaid that also has some medicine on the pad that helps coagulate blood.  The square mark on my wrist is where the pad of the bandaid presses on the whole created from the needle to help the site close.

I wanted to show the difference between my fistula hand (on the left) and my other hand (on the right).  You can see how the veins are much more prominent on my other hand due to the swelling on the fistula hand.

Thankfully, things finally took a turn for the better 2 days later when we tried it again.  The video is a little long, but shows the process.

And this is what it looks like when it's working.  The blood is being pulled from the fistula, processed through the machine and returned in my elbow.  SUCCESS!!! 

I wanted to show how big the needle is that goes in the fistula, but the pic is a little blurry.

Compression bandage but reduced swelling.

The next few photos show the progression of the bruising.  It's been 19 days since the first time it was used, and there's still a little bruising along the forearm, but not near as bad as it was.  I'm glad that, even though it looked awful, it wasn't painful (well, for the most part).  I mean, I had bruises in the strangest places, from the lower knuckle on my thumb, to the outer wrist bone.  It was interesting to watch it all develop, but I still hope it never happens again :)

So, that's about it for the fistula.  The BEST news that I've had in awhile is that we're FINALLY talking about getting my chest catheter removed!!!  It looks like we'll shoot for the week after this coming one, so wooohoooo!  Having this chest catheter in the summer has been so difficult.  I mean, any amount sweating can loosen the tegaderm bandage covering the exit site, thus essentially rendering the coverage useless.  It happened today while I was outside talking to our neighbors.  We were just standing there, enjoying the day, but when I got home a few hours later, I noticed that the bottom of the bandage was completely detached from my skin.  I quickly covered it with some tape, hoping that's good enough until I have a dressing change on Tuesday.  I'll be SO happy to be rid of it!

I dread tomorrow....

Tomorrow, I'll be going to Mayo for a planned AV fistula surgery in my right wrist (hopefully).

I've been dreading this day since the middle of 2014 when I realized I'd need to be on dialysis.  It was the fear of a fistula that was probably the primary reason I chose to do peritoneal dialysis (among several other factors).  Go ahead, I dare you to Google AV Fistula and look at the images and not freak out a little.  They're mostly horrifying, and I just couldn't handle the thought of that in my body.

But things have changed now and it doesn't seem as though I have a plethora of choices.  Before I explain, please understand that my transplant is STILL working, and I AM NOT on dialysis at this time, and HAVEN'T been since the transplant.  I do, however, do plasmapheresis twice a week right now, and that requires a large access, which is why I still have a large access via my chest catheter that I've had since the middle of October, 2015.

The catheter itself is still functioning very well.  The staff at Mayo do an EXCELLENT job of taking care of it, and I do a good job of doing the same while at home, which includes a rather arduous pre-shower routine and a significant amount of saran wrap and tape.  This catheter hasn't bothered me so much in the winter because I've been able to keep it covered so no one can see it.  It doesn't bother me that people can see it, but what DOES bother me are the strange looks or the awkward, sometimes intrusive conversation with strangers that I have to have.  Most of the time I'm happy to engage in any conversation about the transplant, but there are times that I just don't want to, and there are enough of those to make me consider the fistula.

When someone sees this thing sticking out of my chest, they can't help but look.  Hell, I'd do the same thing if I were in the other person's shoe.  It's just that I don't want that to be the very first thing people see, and it usually is.  And I hate it.  It makes it IMPOSSIBLE for me to be anything other than a sick person in their eyes, and I'm just done with it.

That's not to say that people won't do the same thing with the fistula, which they will, but it's location won't make it the first thing that people see (hopefully).  I'm having it put in in my right wrist which is good for the convenience of it.  Having a dialysis access point that isn't easily accessed in every season isn't ideal, and having one in my upper arm in winter is dreadful, because I ALWAYS have to plan what I wear around it, and honestly, I don't want to have to do that.  Normal people don't have to do that, and I don't want to either.

In my wrist, it should be relatively easy to access no matter the season.  Another good thing about starting in my wrist is that once this fistula fails, then they can still try other locations on the arm further up, which is good because I'd like to avoid my left arm as long as possible since I'm left-handed.  And ANOTHER good thing about getting it now is that the nurses on the aphaeresis floor will be the first ones using it.  Plasmapheresis is run at a MUCH slower rate than dialysis (800 ml/min vs. 400 ml/min), so I'll get to sort of "ramp up" I guess.  Plus, the nurses on the floor are amazing, kind and gentle, and they'll do everything to get me comfortable with it.

But the MAIN reason I'm going forward and doing this now is because of Izzy.  I lost a lot of fun time with Izzy while I had my PD catheter and previous chest catheters because I couldn't get in the water (I did on vacation but that required herculean efforts sometimes).  Anyway, I don't want to rob Izzy or myself of another summer of pool time and the lake and whatever else.  I'm tired of missing out, and I'm tired of her paying the price.  

I guess I should try to explain what a fistula is.  According to Wikipedia, an AV fistula is an abnormal connection or passageway between an artery and a vein.  So I guess it's not quite accurate when I said I'm having my fistula put in; it's more accurate to say I'm having my fistula created tomorrow.

Image from:  Blausen.com staff. "Blausen gallery 2014". Wikiversity Journal of Medicine. DOI:10.15347/wjm/2014.010. ISSN 20018762. - Own work, CC BY 3.0, https://commons.wikimedia.org/w/index.php?curid=31339214

I worry about several things:

• the surgery itself (I have PTSD after the last surgery I had, which I haven't blogged yet as a lot of things have happened in the last 6 weeks and I've felt crappy through most of it and haven't felt like blogging)
• the way it will look - the point of the fistula is to create a high blood velocity so that I can adequately dialyze (normal velocity is 85-115 ml/min....a month after the surgery it'll be 700-1000 ml/min), which means BIG VEINS.
• I will be able to FEEL the blood flowing...it's called the "thrill" (which makes it sound so much better to some but makes my stomach churn).  There will never be another peaceful moment in my body, as I will always feel it
• I will be able to HEAR it - fuck, this just messes me up
• I'll "kill" it by accidentally putting a ponytail holder around my wrist like I've done a bajillion times before.  That action alone could cut off circulation enough that the fistula essentially collapses, which would require me to get another chest catheter while waiting for another fistula.
• that it won't work at all....sometimes fistula's don't mature (the process takes 1-2 months) but for some people it just doesn't work.  What if I'm one of those unlucky people???

This is what my right wrist looks while I'm sitting with my arms essentially parallel to the ground

And here's how it looks while down by my sides (horizontal to the ground)

Do you see how that being pops out?  And that's only at 85-110 ml/min!!  What the hell is it going to look like at 700-1000 ml/min?????  Fuck, I don't want to find out, but I guess I will soon enough.  My check-in for surgery is at 9:30am, and I'm sure I'll be a mess.  I'll get the fistula tomorrow, and in 1-2 months it'll hopefully be ready to use, which is just in time for Minnesota's summer to kick in.  Once we know it's working, I'll be able to get this chest catheter removed and on to some fun in the water again!!!  And no more arduous showers!!!

Please, send the good juju my way tomorrow, and to my surgeon.

Update since last Tuesday's surgery

I've been so sick of living the life I'm currently living that I sure as hell didn't want to blog about it.  But then again, a year from now or 5 years from now, I'm sure I'll wish I had, so here goes.

Last Tuesday I had a surgery to put a peritoneal window in my abdomen.  You may recall that I had a procedure the week prior that put in a temporary drain to remove fluid from the fluid pocket that had formed around my kidney, which was putting pressure on the artery to my right leg and my ureter from the kidney.  This surgery is the permanent replacement for that temporary drain.

The surgeon told me that it would probably hurt more, so I thought I was prepared, but boy was I wrong.  This was, quite possibly, the most painful thing I've ever had done.  More painful than transplant, more painful than drug free natural childbirth.  Just hella painful.

The surgery itself was apparently a success, but I've been suffering in one way or another every since.  It took 8 days after the surgery to have a bowel movement, and I've been experiencing some pretty significant edema and high blood pressures as well.  It was originally a one-night stay in the hospital, but I was in a significant amount of pain and having difficulties with vomiting from the dilaudid they were giving me, so they gave me a pain pump again like after the transplant and I ended up staying another night, checking out on Christmas Eve.

It took me a 1/2 hour to eat the corners off this cracker before I got sick again.  Food was not my friend at this time.

Prior to checking out, I had another plasmapheresis treatment and they added FFP (fresh frozen plasma) to the end of it (I can't even remember why at this time).  I'd had FFP 1 time before and developed hives, so they pre-medicated me with IV benadryl before they started the FFP at the end of the plasmapheresis, but nearly immediately I started having problems......severe itching and hives that ended up covering my entire body.  I have no idea how much medicine is in IV benadryl, but I ended up having nearly 3 doses of it, and the reaction slowed but didn't stop.  I was like a drunken idiot with that stuff, not really sure if I was awake or asleep when talking.  The doctors on the floor where I was were, well, awful.  I mean, who the hell asks a drunken sailor how they're feeling when I can't even tell if I'm awake???  I was so freaking annoyed.  They would come in and do rounds, and all of a sudden there were 5 doctors with no personality staring surrounding my bed and staring at me.  So I just stared back at them.  Their bedside manner was truly awful.  I couldn't wait to get the hell out of there that time, even though I was in so much pain.

This was my legs and feet covered in hives.

....and my hand

What I absolutely love about my doctor is that he approaches my problems like an engineer would.  We have many problems to solve, but trying to solve all of them at once won't work.  We pick one, work on it, solve it, and then move on to the next one.  It takes an incredible amount of patience, but its the right way to problem solve.  The surgeon did a biopsy while putting the peritoneal window in (which was great because it's one less separate procedure I'd have to endure) and the kidney looks great.  My doctor said that if he didn't know it was my kidney, he'd look at that biopsy and think it was a perfectly boring, normal kidney.  So it appears that the rejection episode that I was experiencing has been resolved, and the kidney is functioning beautifully.  The last creatinine I had was 1.2, and my GFR FINALLY hit 50 again!!!

So now, the 2 problems we have left to work on are my high blood pressure that the proteinuria.  For the blood pressure, we switched blood pressure medications while I was in the hospital last week due to my potassium being too high (I was on Losartan), but a side effect of that new medicine (alpidoline) is swelling around the ankles.  Awesome.  That medicine hasn't been working nearly well enough so we also added another one (labetalol) this past Wednesday.  It works really well, dropping my bp by 20 points within 1/2 hour, but I'm only taking it twice a day right now and at a low dose.  The first day I thought it was working, but yesterday and today's bp readings don't look as good.  It could be because I'm retaining a lot of fluid right now, but I'm honestly not sure why.

Yesterday was the first time that I actually seriously measured what I was drinking.  I took an old milk jug and marked off 1, 2 and 3 liters respectively with the goal of me drinking 3 liters a day.  I don't know how many of you have actually tried to drink 3 liters, but that's a HELL  of a lot of water. I felt like I was floating yesterday, and I wasting urinating out nearly enough water, so I continued to swell as the night went on, gaining nearly 3 kilos yesterday.  Miserable is really the only word to describe it.  But overnight, I got up 4 times to urinate, and woke up this morning to a more normal weight.  It's like the kidney couldn't keep up with all of the water I was intaking.  We'll see how today goes.  I could take a Lasix and get some of this fluid off, but I also want to see if this is something that's going to resolve itself.

I tell you, living this post-transplant life is scary and exhausting.  I'm sure most people think I'm a hypochondriac at this point, but screw that.  No one knows their body better than a person with a diseased body, and I know that something is still not quite right.  I feel fragile, like I'm always waiting for the other shoe to drop because it inevitably will.  It's a frustrating and lonely existence, but one that I can't really share with anyone because they all want to be hopeful, while I want to be realistic, and those things usually collide when it comes to chronic disease (in my experience, anyway).  My next appointment is Monday where I'll see my doctor again and do another plasmapheresis treatment (no FFP this time).  We'll also do another urine sample to see what my protein looks like, as the last lab showed 6530mg/g of protein leakage.  That's the highest it's been since transplant.

My doctor is telling me that part of the reason my protein is higher is because my kidney is working better, filtering more urine and thus showing my protein.  I'm not sure if this makes sense because I would think that this is a ration, thus volume is taken into consideration, but it's something I need to follow-up with him on.  I trust him completely, and he always answers my questions in a way that makes complete sense, so I'm sure I'll get the answer I need.

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 :)

It's less than a week now!!!

It still doesn't seem real yet but it's only 6 more days until transplant.

My friend, Annika, arrived yesterday from Sweden and even that didn't make it any more "real".  She's more like family though, so maybe that's why (but MAN is it good to see her).  She'll be the one taking care of me after I'm discharged from the hospital but still in Rochester.

I have dialysis from 3-6pm today, and then we'll be driving down to Mayo.  I tried to call the center this morning to see if there were any spots open earlier, but no go today which is a complete bummer.  I'm pretty useless after dialysis, and I usually feel pretty awful, so sitting in a car for 2 hours AFTER dialysis, driving in the snow sounds SUPER FABULOUS (said with as much sarcasm as can come across in written form).

This is my catheter.  You cannot BELIEVE how much this thing itches.

I usually put an ice pack on it through dialysis to help with the itching.  It's this and a Benadryl that get me through.

And this is what I deal with when not in dialysis.  It's pretty big and difficult to hide...I guess I should be happy that it's scarf-weather now because that's the only way I'm able to do it :)

I'm going to spend what time I have left at home making sure I have everything that I think I need, packing it up and getting it in the car because we'll probably leave directly from dialysis.  It's a shit-tastic fall weather day, complete with rain, wind and the chance of snow tonight.  We'll arrive pretty late tonight to the hotel in Rochester and I imagine I'll be exhausted.

The day starts bright and early tomorrow;  I have appointments starting at 7:00am through the early afternoon, and they include blood draw and urine test, transplant coordinator, transplant pharmacist, research coordinators, x-ray and EKG.

Have I mentioned how excited I'll be to have these tubes out of my body?  Granted, I know it won't be right away, but the best thing will be a proper shower without having any catheter's to worry about!