AV Fistula surgery follow-up and other odds and ends (contains some graphic images...you've been warned).

I've got a whole bunch of emotions that I'm dealing with right now, and I don't even know where to begin.  Whenever this happens, I turn to the photostream on my phone to help me get started (which explains why this post is so picture-heavy :)  I figure that (maybe) if I start writing things about these photos, then all of the other emotions may come to the surface and slowly seen out.  This blog is my therapy and I'm in desperate need of some.

This is my friend Mindy.  We "met" a fear years ago on a blog of someone we both followed.  I don't even remember the exact way it happened, but we discovered we were both in Minnesota, and our friendship grew slowly from there.  We've had lunch a few times here in the cities when she and her family come down (they're in the northern part of Minnesota), but this time she offered to come and help out with my fistula surgery (since I was so hammered from my nephrectomy), and I took her up on it.  It's never easy for me, or us as a family, to accept help, but it's something we know we need to work on.

Mindy is the kindest soul...what I love about her is how positive she is and how openly appreciative she is of her friends!  She's a transplant here too (from Vegas), and I've often marveled at how easy it is for her to make friends, which is something I've struggled with here.  Anyway, it was really great having here here...Joacim and Izzy loved her as well, and we're all looking forward to seeing her again soon!

These are pictures from surgery day.  The original plan was for general anesthesia, but I had had one terrible experience with that prior, and that was enough for the anesthesiologist to think differently, and I ended up with a nerve block.  This is the doctor using an ultrasound machine to find the nerve in my neck/shoulder to block the full length of my arm.

I'll admit that I was REALLY nervous about this surgery.  Partly because I wasn't even healed from the one I'd had 8 days prior, but also because the last time I had a surgery on my fistula was incredibly painful....I mean the WORST.  But having this nerve block changed everything.  I woke up happy and smiling and requesting a popsicle :)

And I was amazed that I could use it the next day. I had started creating new buttonholes the week before in preparation for the surgery, and they worked fine the day after surgery, even though one of them was SO close to the incision.

The surgery scars initially after are pretty ugly.  This was the first time that I'd had actual stitches in all of the surgeries I've had in the last 2 years...usually it was just stern-strips keeping everything closed.

This is the vein they took to repair the actual fistula.

Random addition to this post, but we finally had a real snow day....around 9" of beautiful snow!!!

Ahhh....and here are my buddies....I love these pups....

Our neighbor brought over her old snowboard for Izzy to try....she's quite a natural athlete, but the gymnastics training she's been doing for the last 5 years has been superd-helpful for her balance.

NOW FOR THE GRAPHIC IMAGES PART!!!  DON'T LOOK ANY FURTHER IF YOU'RE QUEASY AT THE SIGHT OF BLOOD......

So the other day while dialyzing, I noticed that the venous (return) needle was starting to "back out" from the pressure.  I didn't have it secured properly and needed more tape, so I reached over my arm to get the roll of tape, and the whole needle came out while the machine was running.  I spent a good 4-5 seconds panicking and then just starting closing any clamp that was close.  That wasn't working so I just stopped the machine entirely.  Holy shit, that was a lot of blood.  The venous site was spewing blood, as was the dislodged needle....all over the chair, heating pad, my face and hair.  There aren't a lot of things grosser than being covered in your own warm, sticky blood.  Ahhh...a day in the life of a dialysis patient.  Luckily I usually only make these mistakes once ;)

Post-op from nephrectomy

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



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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Another surgery this Friday

I met with the vascular surgeon yesterday and things are moving quickly.  I've got a revision surgery scheduled for this Friday morning.  The plan is still the same.  I'm creating 2 new buttonholes because the angles I had the needles in before seemed to be causing a lot of machine alarms during dialysis, so I just decided to create new ones all around.  I did it last night and my arterial numbers were a lot better.  We also agreed to run at a blood flow rate of 400ml/min, instead of my prescribed 450ml/min, and that makes a difference.

I'm overall feeling better, but the incision used for the removal of my kidneys is so sore.  The random vomiting isn't helping (happened again last night as I was standing in the kitchen talking to Joacim about dinner).  I started getting nauseous today which sucks, but "yay"...at least some warning to take some medicine to prevent it.  I have no idea where it's coming from or why.  I'm not eating or drinking much.  My blood pressure was really high yesterday, so I added a second dose of the one BP med I had started.  I'm just keeping my fingers crossed that it eventually works.

It annoys me when people asked if the surgery worked, and I tell them I'm not sure because my blood pressure is high, and they respond as though I said "no, it didn't work".  Ugh, drives me fucking nuts. I didn't say it didn't work.   I said that my blood pressure is higher than it was in the hospital.  Did it work?  I don't have a clue.  No one does.  But I'm not going to throw in the towel over a few high readings.  If I've learned anything through all of this crap I deal with, it's patience.  And I don't understand why or how, but I know that sometimes these things just settle out over time.  It makes no sense to me that you take a pill and don't see immediate response, but experienced it more times than I can count.  So I'm just not going to freak the hell out about anything right now.  I had a major surgery, I'm still in pain, and time will tell.

This brings ups something else that I feel like I need to get sometime off my chest.  At this time, I'm not looking in to pursuing another transplant.  I'm not listed.  I don't think about it.  But I always feel like I need to defend this decision.

There are other people with FSGS that have had it recur, only to go on to get one or two other transplants.  Honestly, when I read their stories, I just wonder "Why in the hell did they do it?"  Some of these people didn't have it recur for a few years....some people had the transplant when they were younger, had FSGS recur, went back on dialysis and now are adults and want to try again...some even think that maybe everything wasn't done in order to prevent a recurrence in their case.  Whatever the reason, the one thing they all have in common is some hope that things will be different.  And maybe that's where I'm different...I mean, I don't really have that hope anymore.  I'm not trying to be all melodramatic or anything, I just don't.

I'm confident that my team and I did everything possible to prevent recurrence of my disease.  When I look back on those days, there isn't one single thing that I'd change...other than the outcome, of course :)  I mean, I did Rituximab, and then switched to hemo from PD, and then plasmapheresis before transplant, and then plasmapheresis after transplant, and more Ritximab, and IVIG.....and just every single thing that I put my body and my mind and my family through, and yet this is my reality now.

I don't know if that helps, but maybe someone will get it and not secretly wonder "for me" whether or not I'm making the right decision.  You have no idea how you'll handle it unless it happens to you.

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.

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.

4 weeks post AV fistula surgery update

It's been 4 weeks since I had the AV fistula surgery in my wrist, and things are actually going fairly well.  The first two weeks were ROUGH.  I didn't think it would hurt as much as it did, but I was woefully mistaken.

Of course, I need to catch up on the last 4 weeks, starting with surgery day.  I was really nervous for the surgery, as I had written about in the previous post, so I took a Xanax on the drive down (don't worry...Joacim drove me ;).  My surgery was at 9:30am which was nice because it didn't force us to leave at some ungodly hour and freak out about what we were going to do with Izzy before school.

This is the band that they put around my wrist when I checked in for surgery.  It's done to protect my arm from anyone mistakenly trying to put an IV in it or use it for a blood pressure cuff.  Ever since I had the initial ultrasound done to plan for the surgery, this arm has been off limits to any usage for blood pressure or blood draws in order to protect the veins.  It was good to get used to it prior to the surgery, because it's now a forever-thing since I have the fistula now.

After everything I've been through, one of the things I hate most is getting an IV.  I mean, GEEESH they hurt.  But I'm glad I had it this time because it meant SEDATION DRUGS, and I needed them.  I was fairly calm due to the Xanax during pre-op check-in, but once I was on the gurney and being wheeled down to the OR, all of the awful fears kicked in.  I went to the same OR that I had been in the last surgery (which I haven't written about yet, but it was an emergency surgery and it was scary as hell).  The hallway to the ORs is completely deserted of people yet filled with equipment.  The staff waiting in the room are always wonderful to me, and extraordinarily considerate of my fears.  I start to panic once I'm moved to the OR table....it's so narrow and hard and cold.  When they put the arm wings on to the table is when my fear REALLY kicks in and I ask to be put out.  Thankfully, they do it quickly (yay for IVs) and I don't remember anything else.

 This is what I saw when I woke up from surgery.  It didn't look nearly as bad as I had envisioned, but I was covered in a thick, sticky iodine surgical wash.

It went from my wrist of my right hand, all the way up my arm, into my armpit and across my back and chest.

And this stuff does not wash off.  It's supposed to wear off, which it does eventually, but every hair on my arm was trapped in it and pulling and it was generally awful.  Thankfully the aphaeresis nurses rescued me once again by giving me these cleaning packets specifically for the iodine wash.  It took a whole bunch of them, but I was able to get all of the iodine off by the 3rd day.

We were encouraged to get was a stethoscope after the surgery in order to check the bruit, which is the sound of blood flowing through the access.  I have this awesome audio clip that I took of my bruit using my iPhone (guess I could've saved money on the stethoscope had I known the iPhone microphone would pick up the sound), but it's too damn complicated tonight to be able to share that on this blog, so here's a link to a YouTube video of one to give you an idea of how it sounds.

This is what it looked like 2 days after surgery.  The bare spot in the middle of my arms is where the hair was violently ripped out when I removed the tape keeping the bandage on :)  The dotted line drawn on my arm by the surgeon shows the mapping of the vein that returns blood back to my body.

Here is a close-up picture (sorry if it grosses you out).  I don't think it looked all that bad.  The surgeon did an amazing job of closing it up evenly, and I'm thankful that they use stern-strips to hold the wound together instead of stitches or staples, as they don't create any additional scars.

DAYUM.  This surgery hurt.  A lot.  I denied a take-home prescription of oxycodone like I was some kind of warrior (I clearly must've still been under the influence of some drugs), and it was a big mistake.  I denied them because they COMPLETELY mess up my GI tract...like for weeks, and it's so difficult to get things back to "normal".  But I regretted it about 2 days in....I was in HELL.  It hurt to do anything....you're supposed to walk a lot post-surgery (to help keep things normal) but walking was painful because GRAVITY.  Ugh...I don't think I went anywhere the first 2 weeks without an ice pack.  I just sat a lot and iced a lot, and started to get REALLY nervous that this was how things were going to be.  I tell you...when I'm in THAT kind of pain for THAT length of time, my brain thinks some pretty terrible things.

I took this picture 2 weeks after the surgery.  The scar healed REALLY well, but I'll always remember how painful those stern-strips were when they fell off.  The area around the incision was extremely sensitive, and my long-sleeves kept rubbing against it, tugging on the hair on my arm, adding to the awful.  I was SO happy when that last strip finally fell off!  You can see the fistula best from this angle...it's the raised surface right above the stern-strip.

Honestly, I don't think anyone would really notice it at this point.  It hasn't really gotten much bigger yet, which means I probably need to do more hand exercises in the near future.  I'm at a point now where I have full use of the arm/hand again, but the wrist is still a little weaker than I'd like.

I had an ultrasound yesterday morning on the fistula..actually the ultrasound covered my hand to my collarbone, but they were focusing on how the fistula was developing.  So far, it's going fairly well, but as my history dictates, there are some things that are happening that are a bit rare.  In the above photo, you can see a slightly raised area on the right of my forearm (midway between the sleeve and wrist).  That particular area is where the problem is.  The flow is being directed down 3 separate branches down my arm, and that's reducing the overall flow rate, which is on the low side at 670 ml/min.  The plan is for me to come back in 4 more weeks for another ultrasound, and possibly a plan to have another procedure done to ligate one or more of the branches (ligate means to cut off blood flow) in order to "force" the blood to go a different direction.  This isn't a certainty, but seems the most likely course of action.  And the reason we're waiting 4 more weeks is because it takes 8 weeks in order for the vein wall to be thick enough to do anything with, so we wait.

The good news is that I've been cleared to start doing yoga again, and ride my bike...essentially all normal activities, which is what I was hoping for.  I've been going a little stir crazy in the house lately and I need to direct it somewhere.  It'll be tough to find the balance between working out and not sweating (due to chest catheter).  We've had a few rather warm days lately, and I've found it difficult to go for a walk without sweating because I am THAT out of shape, so I'm not sure how yoga is going to go, or bike riding for that matter.

I've noticed that my body isn't as able to handle the heat as it did before.  I sweat quicker, and feel light-headed so I need to be careful.  I am absolutely hating putting on sunscreen, because that means I have to shower every day.  And I hate showering due to the chest catheter.  So I find that I stay inside a lot because I don't want to deal with it, and that sucks when the entire state of Minnesota is outside once it gets nice enough :)  

I was freakishly skinny post-surgery, and having a very hard time getting my appetite back.  I got down to 58 kilos at one point (that's 127 pounds), and although it looked good on the scale, it felt awful in my body.  I was just so weak, and even yoga pants would slide right off.  That's just wrong, no matter how much I wish that number was my normal weight.  I'm back to where I should be, and even though I'm not necessarily comfortable with how it looks sometimes, it physically feels better.  Unless I'm retaining fluid, because it seems that I'm retaining it in my belly right now, and I dread the day that someone asks me if I'm pregnant.  I wonder how I'll laugh that one off and try not to make the unsuspecting offender feel awful.  

We're also going down to 1/week plasmapheresis treatments to see how my kidney handles it.  If we see that I'm retaining more fluid and my creatinine rises (it's currently at 1.9) then we'll go back to 2/week, so keep your fingers crossed that this works, because that puts me one step closer to my new normal.