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.

2 years.....maybe?

I REALLY wish I would be more consistent posting here.  I used to block off an hour every Thursday night to write a post on my other blog and it was great.  For so many reasons I find that habit nearly impossible to stick with on this blog, and it's immensely frustrating.  So much happens between each post that I am daunted by the task of trying to remember and document it all.  I honestly wish that I'd stop putting myself in this spot, yet I continue as it's been nearly 20 days since my last post ;(

I've been continuing along with regular plasmapheresis since my last post.  I was at 3 days per week, and now we are trying to wean down to two days per week which is better, but it's still 8 hours of driving every week.  My schedule is Tuesdays and Fridays at this time because we're finding that Mondays are starting to get difficult to get me scheduled in PP.  As I've explained earlier, they have to do stem cell patients first, and there are apparently a lot of them lately.  Actually, there are a lot more people seeking help at Mayo right now than ever before.  Even the doctors and nurses are saying that they usually see a dip in the winter because people don't want to come to Minnesota then, but that wasn't the case this year.  So a schedule of Tuesdays and Fridays works right now.

We've been noticing that my hemoglobin has been really low the last few blood draws...hovering around 8.4.  I had one weekend where we were shuffling Izzy around to multiple birthday parties on a Saturday and all I could think about was the sofa at home with a blankie.  If there was an app where I could change the channel on the TV with my mind, I'd be all over it because my arms were tired.  Everything was tired.  And no matter how much I wanted to go go go, my body kept saying no no no.  My doctor ordered 2 units of RBC's (blood transfusion) and I had them on March 4th at the infusion center.  The infusion center has become one of my least favorite places lately because the infusions I get are long and boring, and now something always seems to go wrong with my body while I'm there, and this was no exception.  My body does not like blood products.  At all.  And the more I get them, the more extreme the reaction, which usually includes hives and super-high blood pressure.  The nurses started the first unit, and within the first 20 minutes I could feel something happening, but it wasn't awful and I was tolerating it, so I went on with it and made it through the first unit.  Then they hung the 2nd unit, and things started to change.  The nurse took my blood pressure and it was higher, but within my crazy bp range so I wasn't too worried.  I was warned by my doctor that my bp would rise a little, so I still felt okay.  But then I started itching a little, and I felt a hive on my left upper torso.  Just one, but it was a relatively big one, and that's all it took to stop everything.  It's protocol, but it's still frustrating.  We ended up losing an hour of time waiting on calls to doctors and meds (IV benadryl and solumedol (steroids).  Eventually things started rolling again, but slow, and I didn't end up getting out of Mayo until 7:30pm that night.  It ended up being an 8 hour infusion, and I ended up being there for 12 1/2 hours that day.

Somewhere between the infusion center and Applebee's (where I stopped to get something to eat because I hadn't had much that day) I realized that I lost my debit card, so I spent the snowy and windy drive home trying to convince my bank that I was who I was saying I was and to cancel the card and send me a new one.  Since Joacim has taken over the banking, I couldn't answer the simplest questions, and I was starting to think they thought I was a fraud case, but eventually I made it through the list of 7 questions and apparently answered enough right that I passed the test.  A pain in the ass, but I'm glad for the precautions.

Getting IV solumedrol is no picnic.  I'm glad that it stops the reactions I get.....SUPER glad, in fact, because they're miserable.  But the next 3 or 4 days after receiving the solumedrol is not fun.  Let's revisit some of the side effects:

• high blood pressure
• sleeplessness
• noticeably red face that feels very hot to the touch
• facial swelling

In previous cases it's looked like this:

red face, but not too much swelling

Can you see the difference in the width of my nose?

 Here's how I looked 2 days after the steroids this time:

No red face, but nose swelling again.

I didn't take a picture of my red face this time because we took Izzy to a movie (Star Wars, finally) so I could get out of the house but hide my weird face.  I'm glad it all goes away, and I'm glad that this drug is available to me and that it works, but MAN, I wish the side effects were less invasive to everyday life.

The great thing about all of this hassle is that my hemoglobin went up to 12 by the following Tuesday.  I.  Felt.  Amazing.  On Monday (March 7) I had a stupid amount of energy, so much so that I finally took some of the Christmas lights down.  That task has been completely out of my reach.  The subtle taste of spring we were experiencing didn't hurt either.  Even Tuesday, at Mayo, I did a lot of walking around during my waiting time, just soaking in how good I felt.  Last week was, by far, the best week I've had since Nov 3rd.  Absolutely no doubt in my mind.  I had also been getting weekly Aranesp injections at Mayo, but the waiting time was killing me at the infusion center, and I could totally do these at home, so we got that switched around now which is just one more thing within my control.

The one that doesn't appear to be fully within my control yet is my blood pressure.  I had a biopsy scheduled this past Monday as protocol for 4-months post transplant.  We also wanted to see if the FSGS was visible in the biopsy slides now, as I've been spilling a lot of protein for a while now. The last biopsy I had was on December 22nd when I had my peritoneal window surgery, and no signs of FSGS were there.  We know it's back because of the protein spillage and my history, but when it shows up in the biopsy it means it's more advanced, and we're all wondering if it has.  Logistically for us, it's a nightmare.  We have to kennel the dogs, find a kind soul (thank you Jessica and Blake) to watch Izzy, get her on the bus, take her to gymnastics, feed her and nurture her, and Joacim and I have to stay in a hotel in Rochester due to the risk of bleeding.  After working through all of that, I had it scheduled for Monday.  I did labs early in the morning, and then met with my PA to review them (but they weren't ready yet), and my biopsy was scheduled for 12:45pm.  We had checked my BP in my PA's office, and it was a teeny bit elevated, but it normally is at Mayo (I have an EXTREME case of white coat syndrome now :(  ).  When we checked in in the pre-op area for the biopsy it was a little higher, and each subsequent reading got higher, until it was 171/100...in other words, TOO high to do the biopsy because the bleeding risk is even greater.

I was frustrated, which doesn't help my blood pressure.  I went back upstairs to talk to my PA, he prescribed a quick acting BP med, and I took my regular 2:00 meds plus a Xanax, and went back at 3:15 to try again.  Blood pressure EVEN HIGHER this time.  So the biopsy was cancelled for the day.  We did get an ultrasound done though, and that turned out good.

I felt so guilty for all of the people I inconvenienced.   I know the whole BP thing is out of my control at this point, but it's MY body that keeps failing on me at every point, and there's no escaping the guilt I feel when Joacim misses work and my neighbors have be inconvenienced.  I honestly don't know what happened with my BP.  It's been well controlled at home for the last 2 weeks, so I don't know why, which frightens me because I can't say it won't happen again.  We're going to try again next week (I think) and I'm going to double up on BP meds, take the xanax earlier and ask for sedation (which sounds like a stupid amount of overkill from a couple of big needle pokes) but it's necessary.  We NEED to see what's happening with the kidney.  I could be experiencing rejection and not know it yet because it isn't showing up in the labs, so that's another source of worry.

I did a 24-hr urine this weekend, and I'm currently spilling 14 grams of protein.  It's awful, but it is what it is.

I had a blood draw and random urine this morning.  I have really great veins (not to brag or anything :) but phlebotomists tend to use them...a lot...and they're tired now.  It hurts when getting poked, and I'm having it done two to three times a week now, and they're just tired, so I asked the phlebotomist to use a different vein and showed her the one I wanted to use.  And then she said "but this is a good vein" and did exactly the opposite.  It was a misunderstanding at the end I realized, but it still sent me reeling.  I literally had to go find a quiet corner after it was done to just cry.  I am a walking a tightrope of emotions and sometimes, unpredictably and usually inconveniently, get the best of me.  There's no use fighting the tears and crying, because it just builds and my bp rises and bad things happen.

My doctor and I had a good amount of time today to discuss the status of things, and we both agree that the numbers aren't encouraging.  I'm slowly spiraling and the kidney is starting to show it.  He's has been and continues to be very nervous about my chest catheter, and I continue to be annoyed by it.  I've talked about a fistula before a few times, but he wasn't ready to discuss.  I think he truly fears that I feel like he's giving up on the kidney if we talk about things like that, but nothing could be farther from the truth.  I have such admiration and respect for him for trying so hard and being so invested in my long-term outcome.  I've realized he's a wildly optimistic man, and that has been exactly what I need as events unfold.  I continue to need that, but I also need a dose of realism and a plan.  He said today that I'd probably get a couple of years out of this kidney. He's can't predict it...no one can, but we both know that this beautiful kidney will fail sooner than any of us want and I'l be back on dialysis.  Peritoneal dialysis won't be an option for me this time, sadly, so it's a life of hemo for me.

I miss working out.  I've been slowly starting yoga, but I can only go so far because I start sweating, and that's kind of a no-no with the chest catheter due to risk of infection (at least the kind of sweaty I want to get with hot yoga eventually).  I can't swim with it..hell I can't even take normal shower or bath with it.  And wearing a bra is so hideously uncomfortable because I have to tuck it in the bra, and there are some really sharp edges.  It's also a huge source of infection, even though mine still looks great.

I will be able to use the fistula for plasmapheresis, and there's something appealing about getting use to using it at a lower run rate(60-90) than what's typically done for dialysis (300-400).  I'm terrified of fistulas, of course, because the pictures I've seen are absolutely hideous, but you're all going to have to help me get the hell over that because it will become my lifeline.  Somehow I'll have to embrace it, and you all are going to have to look at it because I won't hide it.  So I have an ultrasound scheduled next week to map my veins for the best location, and I'll be meeting with a surgeon to discuss the surgery itself and what the fistula will look like because, even though I look like hell most of the time, I'm still vain deep down inside.

Also, my hair is falling out at a pretty good amount now.  I posted about this the other day, but here's a comparison from 2 weeks ago to today:

 


Things are tough, no doubt about it.  But when I physically feel better, as I have the past week, I am MUCH better at handling all of the adversity.  A fistula will allow me to go swimming with Izzy this summer.  They take 6-8 weeks to mature, which means I'll have this chest catheter a least that much longer, but I'd rather get this moving right now as opposed to starting in June and missing out on another summer.

I saw this on Instagram today (@elephantjournal) and it sums up how I feel perfectly.  I want to get to the point of being healthy enough to enjoy that beautiful place.  And I've realized that the best word to describe me is not "strong" or "warrior"...it's resilient ((of a person or animal) able to withstand or recover quickly from difficult conditions.).  Yes, that's definitely me.

A photo posted by Elephant Journal (@elephantjournal) on Mar 15, 2016 at 8:41pm PDT