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.

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!

1/week plasmapheresis is apparently not for me

It's been a rough few weeks for me.  I posted before about that I was going down to 1/week plasmapheresis to see how well my body handled the reduction and we've been doing it for 3 weeks.  The first week I did PP on Wednesday and had labs done....all was god, but I couldn't help notice that my chest and throat were getting a little scratchy.  That Friday I knew that I was pretty sure I had a sinus infection.  Weirdly enough, that evening I took my meds like normal, but 30 minutes after it I started vomiting (several times).  I have no idea why other than it happens sometimes when meds hit my stomach and there's not enough food in it.  I don't know about you, but I don't eat OR drink enough when I'm sick, and that was probably the reason why but who knows with this wrecked body.

I woke up Saturday for Izzy's soccer game and felt like a hammer had hit my face because the sinus infection was in full swing.  I just suffered through it over the weekend because I assumed I was going to be told it was viral and there was nothing that could be done.  By Monday I was pretty sure I had developed pinkeye, and Tuesday I woke up with my eyes crusted shut, which equals confirmation for me.  I DID go to urgent care for the pinkeye, and she also gave me a prescription for amoxicillin just in case I needed it, but she did think it was viral.  Honestly, I didn't want to take it if it wasn't going to do anything except contribute to antibiotic resistance, so I headed to CVS and bought a sinus rinse kit.  It's like a neti pot, but without the whole "HELP!!!  I feel like I'm drowning!!!" thing.  And I just rinsed the HELL out of my sinuses, which honestly DID make me feel a little better that day.

I went to Mayo the next day (which was a Wednesday) and saw my doctor.  I told him about my sinus infection/pinkeye and the prescription that the urgent care doctor gave me, and he told me to take it, so I high-tailed it to the pharmacy after my session was done.  I was feeling pretty miserable and my labs reflected it as my creatinine had risen to 2.4, which is a pretty significant jump.  My doctor assumed correctly that I probably hadn't eaten or drank much, so he instructed me to stop taking the lasix and to seriously hydrate, so I've been making it my mission to drink a minimum of 3L of water a day.  Stopping lasix terrified me because of the swelling that I knew would soon follow.  I've been pleasantly? surprised that the swelling hasn't occurred in my lower legs/ankles/feet like I had imagined.  But I'm also disgusted to report that it has relocated to more undesirable locations, namely my abdomen and my face.  I'm not swelling anywhere else.  And I've gained 5-6 pounds since we started (and 13.2 pounds overall since the fistula surgery 7 weeks ago), and it's all sitting in my belly.

It's been an interesting week of facial swelling as well.  Every day it gets a little bit rounder and my eyes get a little bit puffier.  Two days ago, I woke up feeling like a hammer had hit me across my left sinus cavity, and when I looked in the mirror, I was horrified to see that JUST the left side of my face was swollen.  My cheek was noticeably round, so much so that my upper lip drooped, and my left eye was nearly shut.  It took nearly an entire day of gravity to make my face look not-so-horrifying.
Sometimes, when I'm lying on the sofa surrounded by my thoughts, I wonder if I'm imagining it all.  I think, "Well, maybe if I just suck it up and go for a walk, I'll magically feel better."  And then I go outside and walk, and feel even more miserable when I'm done.  It's so typical to want to push yourself....to try to disprove your illness' grasp on your life, but it takes a smart person to know when you should pull yourself up by the boot straps or wrap up in a blankie and stay horizontal.  Luckily I'm smart ;)

Fuck, I hate it.  I hate how it feels in my body right now.  I can tell it affects other things like my memory and ability to focus.  Hell, it's taken me an hour to write 2 1/2 paragraphs!  And don't even get me started on the heat.  It was a really hot weekend here.  Izzy had a soccer game on Saturday, and it was in the upper 80's before noon, and fairly muggy.  I couldn't sit in a chair because I'd start sweating through my clothes, and the sun felt like fire.  I had a golf umbrella that I stood under, covered in sunscreen and sweat, and it sucked the life out of me for the rest of the day.  I came home and did nothing by lie down, and it seems like every day I wake up with just a little bit less energy than I had the day before.  It all feels very reminiscent of how I felt the month before I started dialysis.  I mean, this is a tired that's indescribable, but yet I keep trying.

I had plasmapheresis this morning as well, and my labs haven't improved, even after hydrating and stopping the lasix.  My blood pressure has been steadily rising the last week or so, and today it was super high at 171/91 (which didn't decrease like it normally does during the session).  My creatinine is 2.3 now, and my albumin has tanked to 2.0 which explains the abdominal swelling.  At this point, we could increase the lasix and pull off the extra fluid, but that would increase my creatinine.  My doctor could increase the prograf dosage, which helps by limiting blood flow to the kidney.  He'd probably try this if my creatinine were below 2.0, but it would be dangerous at this point because prograf can be toxic to the kidney as well as being an immunosuppressive.  So our plan is to do PP again Thursday and Friday, and schedule it for M, W & F of next week.  I'll do labs on Monday to help solidify the plan.  We want to get back to 2/week but that will depend on how quick my body responds to getting slammed by PP this week.  Fingers crossed for a quick response, because at this point I'll be driving to Mayo 4 times next week.  I have my 8-week follow-up appt for my fistula which includes another ultrasound that hopefully doesn't take an hour this time, and I'll also meet with the surgeon to see what interventions need to be made to get the fistula where it needs to be to start using it.

I've definitely taken 2 steps back since the last post, but I sincerely appreciate my doctor's quick response and pulling together a plan quickly.  He has another patient that is just like me which I find oddly comforting for me but horrifying for the other patient.  And my doctor must find it all extremely frustrating.

113 days post-transplant update

How do I begin to cover everything that’s happened since my last post?  I know that I'm going to regret terribly the fact that I haven't been blogging frequently throughout this period of my life, but I just need a break.  It's funny that I think of blog posts in my head all of the time, I'm just too tired to sit in front of the computer and put my thoughts into words.

Today, I'm 113 days post-transplant.  I wanted to do a post at 100 days, but that was the first day of normal after a 3-day migrant so I just didn't.  My last post at the end of January was right when I got the second dose of Rituximab and we were going to take a break from plasmapheresis to see if the drug worked.  It was a nice break....a MUCH needed break.  I did labs locally, and as expected, they couldn't do them correctly.  I did it 3 times at my local clinic, and my protein came back at 7352, then 920 2 days later, and then back to 4587.  Needless to say, all of that variability gave us nothing useful to go on, and the experiment turned out exactly as I had suspected.

So, I went back to Mayo on Friday, Feb 5 for a follow-up and labs with my doctor.  My blood pressure was creeping up again and I was having some discomfort around the kidney.  I swore I had another fluid pocked, so my doctor ordered another ultrasound.  Luckily it came back ok (meaning no fluid pocket), but it put even more doubts into my mind about my own body and my ability to recognize when something was off.

My protein that day was up to 7314, so we decided to start back up with plasmapheresis that day, and we were going to be intensive about it.  I did it Friday, Saturday, Sunday, Monday, Wednesday and Friday.  I took a break over the weekend (thankfully) but went back on Monday for more PP and also some IVIG.  This time he increased my dose 3-fold, but kept the infusion time the same.  IVIG infusions start slow, and they do frequent vitals checks and then start increasing the flow rate, but it didn't go so well for me that day.  Within the first hour my bp shot up to over 180/100.  We slowed it down, got me a couple more bp meds and then restarted but didn't speed up the rate this time.  This made a 3 hour infusion take 7 hours.  I left my house that morning at 5:00am, and didn't get home until 9:30pm, and I had to drive in a windy snowstorm on the way home.

When I got home, my migraine hit.  And it was intense.  I stayed in bed the entire day that Tuesday..didn't eat anything and definitely didn't drink enough.  The Imitrex wasn't even touching this one, and eventually I ended up throwing up.  I didn't feel much better after that like I usually do, so I just took a bunch of meds to try to help me sleep.  I had PP that Wednesday, and I had to have Joacim drive me this time because I just didn't think I could do it.  I had lost a lot of weight over those couple of days and was pretty dehydrated, so they gave me a bag of saline during PP to help out.  As you can tell, things have generally sucked.  A lot.

I'm dealing with a shit-ton of anxiety right now, and it's manifesting into heart palpitations.  I don't know if any of you have ever had them, but its truly awful.  I feel as though everyone in the room can hear my heartbeat.  Like if you set a bunch of glasses of water around me on a wood floor, you'd see my heartbeat in the glasses of water.  And the worst thing is that they happen at night.  So I lie there in bed, feeling like I'm going to die of a heart attack before this kidney thing takes me.  It's even worse on my left side (and of course I'm a left-sided sleeper) so I lie on my back and ponder the state of my life, which adds even more anxiety.  I find myself googling all sorts of awful things to explain the palpitations, like congestive heart failure and lovely things like that.  Google is my best friend and worst enemy.

I have discovered, however, that if I take my Xanax at 8:00pm with my evening meds, then I'm pretty drowsy by 9:00 when I turn in, and the palpitations are not nearly as bad.  I would usually take my Xanax right when I went to bed, but it clearly needs a little more time to work than I was giving it.  It's working for now...hopefully that continues.

I tried to do some yoga the other day, but I clearly overdid it because the incision area hurt the rest of the night.  And this wasn't a tiny twinge of pain but pretty intense.  It was much better by the next morning, but made me realize how truly fragile my body is right now.

I'm taking keyexalate to help pull more potassium out of my body.  I currently have hyperkalemia (elevated potassium) which effects the functioning of the heart muscles.  One of my bp meds makes the body hold on to more potassium, so in order for me to take that bp med (which is one of the better ones for me to take) I needed to reduce the potassium.  I've been working on it with diet, but I need a little more help.  The probably with this medicine is that it can sometimes induce H.O.R.R.I.B.L.E cramps and diarrhea (yippee....) so timing of the medicine is an issue for me right now.  And I can't imagine how in the hell I'm supposed to manage this, along with everything else, and go back to work.

Speaking of work, I found out a couple of weeks ago that the position I had when I left has been discontinued and now they're creating new ones.  I'd have to apply for this job, but the only way I can do that is if I terminate my leave (which I'm clearly incapable of doing right now) so my company is going to post a job and hire someone.  They say they'll have an equivalent position for me whenever I return, and no doubt they will because legally they have to, but it doesn't have to be a position that I'd actually want to do.  So, another spec of shitty news.

My employer's long term disability company (Prudential) is questioning whether or not I’m actually ready to come back to work.  Back in December I had been working really hard to start walking, and was trying to walk a 1/2 hour to an hour a day.  Some days I was up to 3 miles, and my doctor noted that in his notes.  To both he and I, this was a good sign.  To Prudential, it is apparently the equivalent of "okay to return to work".  Ummmm....if my job was solely doing nothing but walking 3 miles a day then I might understand it, but clearly that's not it.  How in the HELL would I return to work when I spend so much time at Mayo still?  I mean, is ANYONE thinking here?  And I just found out that they're trying to make this decisions on my future based off of doctor's notes from December.  They've never reached out for current notations (which is dumb..honestly...should I have to be the one to tell them to get updated notes??????).  Fuck, this frustrates me to no end.  I'm terrified that they're going to force me to go back to work.  I can't handle it. I'll fail, and then I'll get sick, and this will all be for nothing.

I feel, by far, more week and pathetic now than I ever have in my life. 

I’m battling what feels like depression.

My labs are getting more awful now…protein up over 8700…it might be higher but the range for the lab only goes so far.

So now what do we do?  What other tricks have we got up our sleeves?  Well, there really is only one at this point, and my doctor is trying to convince himself that it’s worth the risks.  There was a paper published in the NEJM (New England Journal of Medicine) in 2013 that talked about a drug called belatacept.

I’ve had a LOT of things done since transplant…a lot of medications, all with some inherent risks.  Adding another heavy-duty immunosuppressive adds even more risk to my already fragile state, and there isn’t a lot of evidence that it works.  That’s the thing about my disease, and I’ve mentioned this plenty of times before, but most of the papers that are written and published use REALLY small sample sizes….nothing that is statistically significant.  And this disease is probably not just one disease, but most likely a host of diseases, so there’s just no way of knowing whether it will work or not unless we try it.  I’ve watched my doctor closely over these last few months, and it’s made me realize that nephrology is a combination of science, art, and whole lot of hypothesizing and experimentation.  I’m sure it’s that way with a lot of other disciplines, particularly transplants, but it’s still cool to watch the method behind the madness unfold (unless you’re in my shoes and none of the art, science, hypothesizing or experimentation works to kick your disease to the curb).

So now we’ve got to decide whether the risks are worth it.  As a patient, it’s hard to imagine not trying something that might have a chance of working at this point.  I mean, I’ve tried everything else.  The thing that stops me is that I’m just so tired of feeling so awful all of the time.  It would be so nice to have a break from all of this…to gain some strength back, lose this catheter and just pretend that I’m okay for a little bit.  To go swimming, sit in a hot tub, take a freaking NORMAL shower.

But there are risks from stopping everything and just letting nature take it’s course.  If we were to stop plasmapheresis right now, my albumin would drop within days and I’d swell up like a ballon.  Albumin is the magical stuff that keeps me from severe edema like this:

When I’m doing PP,  my albumin is within range, my weight is stable, there’s no swelling in my lower extremities or my back.  The negatives about PP is this chest catheter that I’m still sporting, and the effects of the calcium depletion that occurs for me.  It’s a feeling of tingling that starts at my nose and spreads across my face, sometimes moving to my chest.  My head feels like I have an instant sinus infection (no mucous, just the swelling) and my eyeballs are all wonky.

We're going to try to wean down PP to 2 times per week to see if the swelling stays in check and the albumin remains stable.  I think I need to start giving myself EPO injections at home again because the exhaustion is overwhelming.  Fuck, I just want some good news.  Something worthy of a celebratory dinner or something.  Is that too much to ask after all of this????

I'm sure there's probably more to say, but I have to get up early for PP at Mayo tomorrow, and I'm just beat right now.  I'll try to get better about post frequency as I know some people are actually reading this, although not nearly as many as were reading it when I was going through the transplant which saddens me.  

After 2 days of Lasix.....

I've been feeling pretty poorly lately, no doubt about it.  I feel full and swollen to an extent that I can't quite convey.  It feels like my lungs are getting squished under a bunch of water.  I feel swollen in my feet, ankles, lower legs, abdomen, chest, neck, nasal cavity and eyes.  Seriously, nearly everywhere.

I spoke with my doctor during plasmapheresis on Monday and voiced my concerns/symptoms.  I was thinking that this was caused from either the Cellcept (immunosuppressant) or the amlopidine (blood pressure), but my doctor could see that I was really swollen, and suggested we start up the Lasix (diuretic) again, and I could not have been more thrilled.

I started it yesterday as soon as I was done with plasmapheresis, and took another dose around 4:00pm.  When I woke up this morning, I felt like a new person.  I mean, I could BREATHE and I had energy and I wasn't so damn shaky and unsteady.  It was awesome!  So I totally took advantage of it and got my hair done, went to the grocery store and the dry cleaner, back to the grocery store (because I forgot my bags at the drive-up window...idiot move) and then the pharmacy and finally back home in time for our new treadmill to be delivered and assembled.

I'm sure people are wondering why I did all that, and the answer is because I COULD.  I know that the weather is going to make a MAJOR shift this weekend, and it's going to become extremely cold and extremely dry, which means people are going to get sicker and sicker as the week progresses, which means I'm probably going to end up being inside most of next week.  Of COURSE I'm worried about germs.  I'm ALWAYS worried about them, but I also want to live my life, and when an opportunity presented itself this morning in the form of me actually feeling human, I decided to live like I was one.

The tiny little problem here is that, when Joacim got home, he said that I looked swollen, and ever since then I've FELT swollen.  I've appreciated Joacim's honesty when it comes to the swelling because it was validating how I felt.  But today I wasn't feeling swollen when he said it, yet it totally affected how I physically felt after he said it, and I've been miserable ever since.  I had been wearing compression stockings since I got home because my ankles and feet were enormous, and those things work really well but tend to make me feel....well....full, for lack of a better description.  I just took them off and feel better, but my abdomen is still pretty puffy, so I don't know what's going on.

I feel like something's still not quite right.  I thought that 2 days of Lasix would put me back where I wanted to be and get my blood pressure under control.  My weight has lowered, but my blood pressure is still as high as before (160/100), and that's with 2 bp meds currently.  I have labs, plasmapheresis and an ultrasound scheduled tomorrow to see if anything is going on with the kidney (more fluid pockets????) so please keep your fingers crossed for a drama-free day and drama-free results.  Thanks all!

I forgot about the Rituximab

In my haste during yesterday's post, I totally forgot to mention that I had another Rituximab infusion last Wednesday.  Remember, there are 2 problems we're working on right now:  high blood pressure and proteinuria.  Lowering the blood pressure should help with the proteinuria, but it won't completely solve it, so my doctor decided to do another Rituximab infusion.  

This is the same drug that I had 2 infusions of last summer prior to transplant to get my body ready for transplant.  It is a chemotherapy drug.  I was much healthier last summer when I took it than I am now, and I can tell a difference in how I feel.  I am COMPLETELY wiped out.  I'm tired of being so damn boring and seeing the inside walls of this house, but I don't have much energy for anything else.   I believe that the blood tests I'll do on Monday will include measuring the amount of B-cells I have, as the intent of this drug is to wipe out all of my B-cells to help reduce the proteinuria. 

I tried to get some cleaning up done this morning, but then spent 2 hours on the sofa watching people build stupid tiny homes so I could recover.  I don't remember Rituximab affecting me all that much last year, but I do believe it's because of everything I've endured the last couple of months.

Tonight was the first night in 4 nights that we had Izzy back all to ourselves. and I really wanted to go out to dinner.....you know, do something different, but by 4 o'clock I was ready for bed.  Luckily, Joacim gave me little pep talk, I put some clothes on and forced myself out of the house so we could 

take Izzy to get a cheeseburger :)  We're back home now and I have no intentions of leaving the house again as I can hardly lift my arms :)

Another problem we're working on is my high blood pressure.  I wrote yesterday that we changed my blood pressure medicine from Losartan to amlodipine, and we did that last Wednesday.  We also added labetalol to the mix to help lower it.  And since then I've just been feeling really awful.  I wanted to attribute it to the surgery recovery, but it's different.  It's hard to describe, but I feel very full again around my torso, and my legs are swelling.  My eyeballs are doing their wackadoodle thing that they do sometimes, and I'm so out of breath that it's making me nuts.  After looking at the side effects of amlodipine, I believe it to be the culprit of my misery, and it's something that I'll address with my doctor on Monday when I see him again.

1st dose of Ritixumab

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

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

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

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

Benadryl is awesome.  It makes me SO sleepy.

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

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

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

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

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

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

Cortisone is the devil

So, here's an update to everything.

As far as the IUD goes, I have the surgery to remove it scheduled for February 20th.  I've gotten my pre-op physical and spoken to my thrombosis doctor about when I need to stop my warfarin, so I THINK I'm good to go on that one.

I was also able to get the contrast MRI done on my left hip a couple of weeks ago.  The procedure itself was relatively painless, considering how awful it sounded when described to me.  I went back to a room that had a portable X-ray unit that was very specific...it looked like this:

So, they wheel this think over to the stretcher that I was laying down on.  The anesthesiologist came in to describe the procedure, which included washing/sterilizing the area, preparing the sterile gown, a topical (very similar to what you'd receive when you go to the dents).  Once the area was numb, he would then inject the needle, add more numbing medication, and then the contrast dye.  I'd then walk back to the MRI machine and get the images taken.

Now, I'm NO fan of MRI machines.  I think this is the 3rd one I've had in my life, and I hated them all, but this one was the most pleasant of the 3.  I'm EXTREMELY claustrophobic, so putting me in a big metal tube is about the last way I want to spend my morning.  Anyway, they're clearly prepared for nut jobs like me, because the technician had warm blankets, a washcloth to put over my eyes, and noise-cancelling headphones to help block out all of the knocking from the MRI.  She was even kind enough to put some "zen" music on in the headphones to help me relax.  All in all, it went pretty quickly, and I actually fell asleep near the end, as I woke myself up by my own snoring!

I met with the orthopedic surgeon the next day, and he confirmed that there is a small labral tear in my hip.  I could go into specifics, but it's really not necessary.  At this point, he gave me 3 options:  cortisone shot, a surgery that would have me on crutches for 1 week, and another surgery that would have me on crutches for a month.  Now, I don't know about you, but I can't imagine being on crutches during a Minnesota winter, particularly THIS one, so I decided to hold off on the surgery until it was warmer an try to find some relief with the cortisone shot.  I'd never had one before, and I'm not a fan of any steroid, but the surgery just wasn't an option this time of the year.

I had the cortisone shot this past Wednesday.  It was a very similar procedure to getting the contrast MRI, just without the MRI.  All went well...it was a little painful when he injected the cortisone...kinda felt like he hit a nerve or something because there was a shooting pain through my butt and down my leg, but it subsided rather quickly.  All was well, or so I thought.

On Thursday, I had a breakfast meeting in St. Paul, and then a customer meeting in Hutchinson, which meant a decent amount of time in the car.  I noticed that I was feeling a bit "thicker" in the middle, but kinda pushed it aside.  When I got home at the end of the day and took my boots off, I noticed how swollen my legs (especially my knees) were, as well as my torso.  I was cold and worn out, so I decided to soak in a hot tub since no one but me was home yet.  While in the tub, my face started itching a bit, but I just figured that was because the change in temperature.  I was mistaken.

The next 24 hours were pretty much awful.

This picture was taken Thursday night.  Do you see that my face is kinda flushed?  Yeah, it felt like it was ON FIRE!  I ended up getting up in the middle of the night to get a cool washcloth to put over my face, and to take some Tylenol.  The swelling that was occurring was putting SO much pressure on my sinus cavity and my jaw....so painful!

The next morning was worse:

Very red, and VERY swollen (especially through the bridge of my nose).  I was just completely miserable.  It was very hot to the touch, and painful to do much movement.  This was pretty much the only relief I had:

Now, I realize that this doesn't seem like a big deal, and in the end, it really isn't.  It's just that, every single thing regarding my health is like this.  This really shouldn't have happened, especially since it was a shot in my joint.  I mean, if I was taking oral cortisone (is that even an option), then yeah, I'd think something like this could happen.  My body CLEARLY recognizes the devil that a steroid is, and went into hyperdrive.  I had my pre-op physical yesterday, so the doctor checked everything out.  My sugars have been skyrocketing, so she ordered an a1c to see if everything is OK there, but otherwise I just need to wait it out.  If it doesn't subside in a week, THEN I should be concerned.  So that's that.

It's much better this morning than it was yesterday, so hopefully it was a quick reaction, followed by a quick recovery.

Today, I'm off to spoil myself by getting a pedicure with a new friend, while Izzy has a playdate (said friend's daughter) and Joacim stays home with them.  :)