Mother's Day Blues

Mother's Day, at least for me, never lives up to what I think it's supposed to be.

At this moment, in my current emotional and physical state, I should feel lucky for each and every Mother's Day I get to "celebrate".

I put celebrate in quotation marks because there's really no "celebration" here.  There's just Joacim and Izzy, and Joacim usually focuses on a present 3 days before the event, orders something last minute that doesn't arrive for the actual day, and is not necessarily something that I really even thought about wanting.  Then they'll go to Target a couple of days before and each get a card. That sounds harsh, but truth hurts sometimes.

My little Izzy came through today...she had made a book of poems in school and they're really cute.  There seems to be a strong theme about cooking and cookies throughout all of them.  I'm thankful that the theme wasn't sick and dying...glad she's not focusing on those aspects of life at home.

But dammit....it's the partner's job (in this case, Joacim) to teach Izzy why we celebrate Mother's Day, not just at the start of the day, but ALL DAY. It's a day to make Mom's feel special for everything they do.  For me on Mother's Day, I just want acknowledgement of these things.  I want to know that THEY know what I do that makes me invaluable to this family.  I'm really feeling the need to feel valued at home because I'm not contributing anywhere else, and if no one here values me, then sometimes it's hard to figure out the point of all of this.

I feel like I work on that with Izzy when Father's Day comes around.  I haven't asked Joacim if he feels I've been successful though, so that's something I should do.

Joacim's birthday is Tuesday and I asked him if he wanted a special dinner and he's like "nah"...

UGGGGGGGGH!

For PETE'S SAKE....we should ALWAYS be celebrating birthdays (all of ours) with fanfare!!!  The birthday person should be celebrated!!!  I want Izzy's birthday to be the best day of the year for her, every year....that's what I strive for.  I'll never be the adult who says, "No, I don't need any presents....."   TOTAL LIES!  I LOVE ALL THE PRESENTS!!!!! :)

I'm feeling a lot on edge today because my blood pressures have been at stroke level several times this weekend.  I've need to take a hard look at my daily sodium intake to see how much I'm really consuming daily and see where I go from there.  Hopefully I can get in early again tomorrow for a UF run before dialysis to pull off the extra fluid that I think is due, in part, to a new blood pressure medicine.  It's all kind of a nightmare and I'm scared to go to sleep with my BP so high (203/117 at last check at 9:21pm) so I'm going to keep taking clonidine until it goes down enough to sleep.  Wish me luck.

Still sucking in every way imaginable

So when I posted last Friday, I was in a dire place where I didn't know what I should do.  Sadly, I'm still at that place but for different reasons.

I woke up Friday morning still feeling like I was drowning in my lungs and started calling the clinic and my doctor's office.  I found myself in the vicious cycle of waiting on hold, leaving voicemails in general mailboxes and speaking with the nurse at my clinic who has a way of talking that leaves me frustrated.  My observation is that she's noncommittal in her answers.  What I mean by that is when telling her my symptoms and my frustrations with not knowing what to do, she'll say "well, you should probably go to the ER".  What in the hell does "probably" mean????  I think I asked her that but in a nicer way.  I missed my team at Mayo right then more than I ever have.  Mayo understands patient-centered care.  If I were at Mayo with these symptoms, my doctors would be actively working to create an action plan to attempt to address these immediately.  Now that I'm outside of that, I have to do all of the work and nothing feels immediate.

But my prodding and freaking out worked this time because my new nephrologist and clinic came up with a plan.  I went into dialysis an hour earlier on Friday, and for the first hour we just did ultrafiltration (which means I'm connected to the dialysis machine and it's only pulling fluid out of blood instead of pulling fluid AND cleaning it).  Doing this, they can remove up to 2 L/hr which is awesome.  After the ultrafiltration I'd do my regular run, where they'd pull another 2 L overall, and the combination worked.  The ultrafiltration part was much nicer than dialysis, and the only thing I noticed was that I started to get really really cold...small price to pay to be able to breathe again.  I felt a noticeable difference after Friday's run, but sitting in that damn chair for 4 hours nearly drove me batty.  This is a picture of the machine near the end of the run...at that time they had pulled 3845ml!

Even though I was nearly 4kg lighter (8.5 pounds) my legs and ankles were incredibly swollen.  The 2nd half of the run I sat with my legs down (instead of lying back on an incline) because it kept my blood pressures lower, but that meant that gravity became my enemy again and dumped all of the fluid in my ankles.

That night (Friday night) I'm particularly grateful that Izzy was still staying at a friend's house because I think I threw up 5-6 times.  And it really freaks her out when I vomit (who can blame her).  No idea why....it started about 2 hours after my run, and just continued intermittently for a few hours.  I remember sitting on the toilet, pooping and vomiting at the same time, with snot running down my face from the puking thinking "yes, this is the very definition of hell".  It's like my entire body was rejecting everything inside of it, all at the same time, which is why a bucket is now a regular feature in our bathroom.  I'm not sorry for talking about the graphic details, because it's the truth of what's happening, and I write this to capture all of the gritty details.

So after spending the evening vomiting and somehow drifting off to sleep, we had to get up at 5:30am the next day to drive to another center in Bloomington for a 2-hr ultrafiltration run to remove the rest of the fluid.    It was a nice clinic with upbeat staff.  And I have a feeling I'm going to make a lot of friends as my time on dialysis progresses, as most of the people in there are almost twice as old as I am, and they're pretty sweet.  This is a pic I took before, and you can still see all of the swelling around my eyes.

We were able to pull off another couple of liters of fluid at the end of that, so from the time of my initial weigh-in on Friday afternoon to my weight after Saturday's run, I was 13 lbs lighter.  A HUGE difference.  I felt human again....lighter....no headache.  Just an incredible difference.

Sadly, the giddy joy I was feeling didn't last long, because in addition to starting dialysis I've been fighting a sinus/upper respiratory infection all at the same time.  Fuck, I don't know what issue is caused by what problem anymore, but I was still having trouble breathing.  I sucked it up through Saturday, but by Sunday I really couldn't walk up and down the stairs.  I waited and waited for relief...took a bath...sat in a dark room and watched Netflix...anything to try to keep my anxiety from making it worse.  By late afternoon I started to get really worried.  I have been feeling lately like I'm breathing through a straw...you heard it on the video from my last post.  By Sunday, that straw had become a coffee stirrer, and I swore that something really bad was going to happen to me if I didn't go to the ER.  Again, I've covered how terrifying that could be, but this time I just didn't care.  I needed relief, and I was so afraid that I was overthinking it or being silly that I just drove myself there.

Now you may be wondering why I would drive myself to the ER.  Joacim and Izzy were both at home, and I could've wrangled them up to take me, but most people don't understand why I do it.  I just hate the fear that I could be causing in Izzy every time she has to see me in some medical distress in a medical setting, and I can't stand having people sit and watch me as I'm suffering.  Honestly....it doesn't do me good in that setting to have people around.  I can't really talk much as I'm having a hard enough time breathing....they're kind of anxiously looking around wondering what's happening and I know it's going to be a couple of hours before anything happens, and I just hate that scenario.  So I drove myself while they stayed home and had the most normal evening they could while I dealt with my shit.

So I went to the ER (one that I've been to before but not recently) and they were very nice and kind.  I felt better going there because I knew that this wasn't fluid-overload related (meaning I felt my issues could be separated from my kidneys, which made me feel safer).   They took me back right away because my BP was so high (170/110), did a chest x-ray and labs and I waited.  I waited for quite awhile, actually, which was frustrating because my BP was rising and my breathing became more labored.  Finally, after 2 hours of lying in that bed watching the Super Bowl, they came back and told me that they *might* have found the beginnings of pneumonia in one of my lower lobes (guess it's harder to tell on people on dialysis???) and were going to treat me right there with an IV antibiotic and change the one I was on at home to a stronger one.

They gave me a breathing treatment too to try to alleviate the issues I was having.  Sadly, that didn't do much.  I panicked a bit because I didn't want to be released from there feeling as bad as I was. I couldn't imagine trying to go home and sleep one more night in that condition, but that's exactly what I had to do.  I felt that the ER did a great job of addressing all of my concerns, but there are so many factors for me now that nothing is a quick fix.  Maybe I just needed someone to tell me I wasn't going to die in my sleep that night...because I swear that's what I'm fearing right now.  I fear that sometimes I'm "too" strong and push my body too much, because I just don't know where the bottom of this whole thing is.

I saw this following pic in my FB feed while I was at the ER on Sunday night and I literally laughed out loud at the absurdity that is my life.  Do you know how many times someone asks me how I'm doing a day?  It feels like hundreds. When I'm on 5-minute BP checks during dialysis, she asks me how I'm feeling every 5 minutes, and there are only so many ways to say "horrible".

Guess what? Even people like me are susceptible to cracks in the medical system.

After 11 years of dealing with this disease in one form or another, I feel the I'm fairly proficient at knowing exactly who to call when, yet there are times, like tonight, that I was at a complete loss.

Just a recap:  dialysis sessions #3 (which was on Monday) and #4 (Wednesday) were awful but in different ways.  On Monday (#3) I got a migraine 1 hour into the session that couldn't be relieved.  The tricky thing with dialysis is taking certain medications while you're actually getting a treatment.  Sometimes this will be ok, but for some meds, it doesn't really work because the dialysis machine cleans them out of your blood.  So when I get a migraine or my BP goes high, I have to wait until it's already full-on and 1/2 hour before the end of my procedure to take the meds, and those meds take 2 hours to really kick in, so it's a shitshow.  Thankfully, this time, I did NOT vomit on my ride home with a different friend (win!).  But I felt like my lungs were so full of fluid that I just couldn't sleep from all of the coughing.   On Tuesday I woke up feeling not right and was coughing quite a bit.  I went in and sat on our recliner and started coughing so hard that I actually starting vomiting mucus (which is just gross).  Well, that kinda freaked me out.  I mean, a lot of bad things happen to me, but that never had, so I freaked out a little and worried that I was getting pneumonia.  My weight had been on the rise because the 1st two dialysis sessions we didn't remove any fluid, and we only pulled 1.7L on Monday, so I was still on the heavy side by Tuesday.  After the vomiting, I decided to head back to Urgent Care to see if there was pneumonia or bronchitis developing.  Another low point happened when I got to Urgent Care because it was time to take my meds, and one of those meds that I've mentioned before caused me to vomit in the patient room.  But I seriously vomited for about 10 minutes, peed all through my pants and just sat there crying.  The doctor was kind enough to give me a pair of scrubs and the nurse gave me a bag to put all of my peed-on clothes in and give me time to get myself together.  I'm really worried about how labored and shallow my breathing had become, especially upon lying down, so she did a chest x-ray but it was clean.  She gave me a cough medicine with codeine in it to help me sleep, which it did last night, but I woke up this morning with a slight tinge of a headache still. I can handle a lot of things, as described in this blog, but headaches are not one of them.  I just want the world to go dark, silent and on pause when I get them.

I had an appointment scheduled at Mayo today for a 4-week follow-up for my fistula.  I guess we're just calling it a new fistula right now as opposed to a revision, but whatever.  I was so happy/surprised when Joacim said he'd drive me this morning, as it came out of the blue.  He didn't think I could really do it, but even though my stubborn self said I could, I was SO glad and comforted that he was there with me.  I had a REALLY difficult time walking around the campus with my breathing incredibly labored.  The ultrasound took longer (as always) and I had comments such as "wow, I've never seen that many scars before".....good thing I'm not sensitive about the way it looks at this point.

After the radiologist reviewed the films, we left and picked up some extra migraine and nausea meds at the pharmacy because trying to move things like that to a new doc is a lot of administrative energy that I haven't had since starting dialysis.  Then we met with one of the access nurse coordinators to review the results of the ultrasound and come up with next steps.  The dialysis access nurse coordinators are in the outpatient dialysis unit of Mayo, which is not run by a DaVita or Fresenius (major important difference!!!!).  But it still saddens me every time I'm sitting there waiting for an appointment.  As I watch these (mostly elderly) people being wheeled in and out, I just sit there and think about the shitty fate I have.

Yeah, I took the pictures in B&W, but they aren't any better in color.  It's sobering, and I encourage anyone, ANYONE that knows someone who is on dialysis to go sit with them, and watch what it entails.  See if you don't feel like you're going crazy after 3 1/2 hours of not being able to move.  Or just sit with them and keep them company.  I didn't think I'd like that, but I had a friend who did and it was the most enjoyable time I've ever spent on that hemo machine.

Anyway, appointment with the access nurse.  The good news is that the fistula is growing nicely, and the average flow rate overall is 1.297L, which is great!  The minimum is 800ml/min, so it's ready flow-wise.  There is one spot where the diameter of the fistula is smaller than necessary, so I've got to do some hand exercises that I've been neglecting in order to hopefully grow that section and make the entire vein wall stronger.

I'll admit it that I'm TERRIFIED of getting stuck the first time at a dialysis clinic by people who don't know me who don't have vials of lidocaine laying around.  TERRIFIED.  So I was a bit relieved when she thought we could wait another month.  Granted, it's another month with this crappy chest catheter that has gotten even crappier since being transitioned to DaVita.  Make no mistakes, DaVita is a FOR-PROFIT business, and they aren't interested in going the extra step for patient safety unless Medicare says they'll pay for it, and Medicaid doesn't seem to be all that interested either in some of, what I could consider solid safety practices (it's all about the dollars...not about my living or dying).  One of the things that's MOST perplexing is this chest catheter.  I posted a pic a couple of posts ago about what it looks like after a dressing change at Mayo:

See how nice that was with a great little biofilm around the catheter exit site and a tegaderm-like plastic secure bandage around it that's good for 7 days?????  The changes of infection in a chest catheter are high, but Mayo did a phenomenal job of minimizing that.  You know what my dressing looks like after one change at DaVita?

What purpose the gauze tapped round the lumens (that's the things hanging down) serves is unknown to me other than to add weight.  The shoddy piece of gauze with paper tape around isn't even secured properly.  Add to this that they'll take this off to change it every Monday, Wednesday and Friday, thus increasing my risk of infection by 3-fold every week.  Now, I could go in and request that I do my own dressing changes and purchase my own supplies and that might be fine.  But some clinics do not appreciate that, and I haven't figured out if this is one of them.  I've learned that it's important to build the relationships in order to get the best health care, rather than bullying them through like I used to do.  I can ensure my catheter stays as clean as possible in the meantime (but dayum what I wouldn't give for a shower), but I need to figure out if it's worth it too.  If we start using this fistula in a month, it may not be worth it,  but we'll see.

This was not the worst part of the day, though.  I've been steadily retaining more and more fluid since stopping plasmapheresis last Monday.  Each day it's a little more than a kilo, which adds up quickly over time.  I know that this is going to happen because I'm not getting that beautiful albumin anymore which has been helping keep my edema in check.  But it seems that my kidney has nearly completely stopped producing urine too, which is unexpected.  The first two dialysis sessions we didn't pull fluid, but we started to on Monday.  It's a slow process for fluid removal because it's harder on the body, and I'm already having my own share of difficulties right now.  I met with my new doctor on Wednesday, and she's great.  We've got a solid game plan where she'd start looking at alternatives to blood pressure meds (particularly the one that makes me vomit relatively frequently) and increase my Lasix and one other BP med.  So today, when I woke up and weighed myself I was at 66.3kg.  Not awesome, but not the worst I've ever been either.  Joacim and I went to Mayo, and I didn't really eat or drink much during the day, but I could feel the swelling in my abdomen, knees and lower legs/ankles.  When I got home I weighed myself (which was around 3:30pm) and I was already up at 68.3, which was a whole 2 kg gain in less than 12 hours!!!  I started freaking out, panicking.  I know I have dialysis tomorrow, but there's no way we can pull off enough fluid tomorrow to account for 2 days of no dialysis on Saturday and Sunday, and 68.3 is eclipsing the heaviest I've ever been since kidney problems began. In my brain, I'm thinking that I need to be checked into a hospital for a few days to do dialysis to get more fluid off, but how do I go about it?  I tried to get a hold of my new nephrologist, left a message with her on MyChart, called my nephrologist at Mayo, ended up at the nephrology center at the U of M and then called Fairview Southdale to be referred to the nephrology on call (which they didn't have).  All of this effort was in order to try to stay inside the medical system that my new nephrologist is in, which is not one that I've been in before but this was all happening after 5:00pm.  So then we (Joacim and I) were faced with making some decisions and here's what comes into play for someone like me:

• Option A.  I could go to the ER of the hospital affiliated with my new neph.  I spoke to the nephrologist on call there and he said it was unlikely that I would be dialyzed tonight unless I was having trouble breathing (which I was) but he sort of sounded like it probably wouldn't happen.  I told him that this wasn't my first time on dialysis (even though I had started again recently) and that this felt different, that I was having trouble breathing and lying down was impossible.  He was kind and said that I could come to the ER at the U, or I could go to Fairview Southdale (which is closer to me and a nice hospital) ER. He suggested I call the hospital there and ask to speak to the nephrologist on call, and the operator said that they didn't have one.  Um.  Then I asked if they have inpatient dialysis there and she said no.  So I knew that wasn't going to work...I didn't want to be sent to an ER because it was close only to have to be moved by ambulance to a different hospital....I'd rather go to my final destination.  The doc at the U that I spoke with gave me his pager number but I didn't call back.  It felt a little hopeless.  I didn't want to drag my family downtown to an ER we had never been to in the hopes that someone would hear my plea and not make me feel like this fluid thing was all in my head (because that happens).
• Option B.  I could go to the hospital ER where I went when I had internal bleeding from a biopsy back last Easter.  They are part of a different network than my new nephrologist and she doesn't have privileges there which is the biggest downside.  But they treated me well when I went to the ER and got me the care I need quickly and effectively.  And even though they didn't have the most updated records, I felt like I could communicate the last 3 weeks fairly effectively.  But then my new nephrologist was out of the loop, and maybe they'd start pushing drugs for high potassium (which we're trying to rectify via dialysis, and having it done "the hard way" in an ER setting is not pleasant).

In either scenario, I won't going to get there until around 8pm anyway, and by the time I got back for someone to see me, even if they DID decide to start dialysis, it wouldn't be until around midnight.  So I thought rationally for a bit (with the help of some of my FB friends who were out to dinner kindly giving me medical advice :) and decided to just wait it out.  I felt like I was going to suffocate, but I wasn't LITERALLY going to suffocate.  The panic becomes very real and palpable. 

We were worried about Izzy either way.  She has a math test tomorrow that I didn't want my problems to affect so another friend of ours (the newish one that had to hear me vomit) is watching Izzy tonight with her own kids and will get her on the bus tomorrow.  That way, if I do have a freak-out panic moment tonight, it's only Joacim and I that will have to pull it together and Izzy won't miss school.  I took the rest of my scheduled BP meds before Joacim drove her over to their house, and measured my BP when he returned.  It's still not ideal, but much better than it was getting so I feel comfortable in the decisions so far. It's very difficult to breathe and isn't getting better which is one of the most troubling things:

I just want you all to hear what it's like, having kidney disease and renal failure and dialysis and a husband who works a lot with a job that's changing requirements and odd hours and an beautiful 8-year old who we're trying to raise as normally as possible in the most non-normal environment.  Oh, and to cap things off, our dog Murphy made a huge pile of vomit as Joacim walked out the door.  Just awesome tonight.

It's rather late and I'm going to try to sleep.  My plan is to call the clinic first thing in the morning to see if they can get me in. Then I'll be able to speak with my doctor and maybe come up with a different plan over the weekend to remove this fluid quicker.  I didn't expect this to be such an issue so soon, but I also didn't expect this kidney to stop working nearly entirely.  Maybe tomorrow will be different.  I can only hope it is but prepare that it won't.

What I DO know is that we, the Trunk family, need more people in our village.  Many people have offered to help whatever we need, but that's vague and difficult to figure out.  We're working on things we need that will really help us day-to-day, but in the meantime rides to and from dialysis are appreciated, as well as anything that gets Izzy out of the house for some fun sometimes.

Thanks to all of you for listening and commenting.  It keeps the ghosts away.

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.  

Update since last Tuesday's surgery

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

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

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

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

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

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

This was my legs and feet covered in hives.

....and my hand

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

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

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

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

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

Today is 6-weeks post-transplant

It's been 12 days since my last post.  It's been 42 days since my transplant, and yet here I am, still going to Mayo 3-4 times per week.  I honestly thought I'd be on the road to healing by this point, but a continuous stream of setbacks keeps the future uncertain.

I had plasmapheresis a couple of times last week...the attempt is to slowly keep weaning me down and see how my protein levels change.  I had a session last Thursday, and my protein was around 1600 after that.  I was able to spend 3 solid days at home (yippee for small wins), and went back to Mayo on Monday for plasmapheresis, and it was up to 2300 by then.

I was talking to my doctor about the new side effects that I had been experiencing lately....well, since last Thursday, specifically.  I started to notice some pitting edema in my right leg, which continued to get more and more severe as the weekend wore on.  I ended up wearing my hospital-grade compression stockings 2 days in a row and that did seem to help a lot, but it also felt like it just pushed all of the fluid to my torso, and it was making it very hard to breathe.  My bowels continue to be an issue, and my blood pressure is skyrocketing (~170/100).  I also "felt" the kidney all the time...like there was a bunch of pressure behind it and it was pushing out.  I just generally felt pretty crappy.

When I had my biopsy a couple of weeks ago, they noted that there were a couple of fluid pockets around the kidney at that time, but they were considered small enough that my body would eventually reabsorb them.  After describing my symptoms and seeing my blood pressure readings (167/87 at plasmapheresis yesterday morning), my doctor decided to get an ultrasound done as soon as possible to see what was going on.  He suspected that the fluid pocket was larger, and was putting pressure on both my ureter (drains urine from kidney to bladder) and on the blood vessel that goes down my right leg.  Initially they couldn't get me in until Tuesday afternoon, but my doctor worked his magic again and was able to get me in yesterday afternoon.

It was probably THE LONGEST ultrasound I'd ever had.  The tech was clearly seeing things he didn't expect, but he couldn't tell me anything.  After about 40 minutes he was finished, and left me in the room to consult the doctors.  So I just laid there in that room, alone with nothing but my thoughts.  Eventually he came back and said I was free to go, and I just didn't know what to think.  My doctor eventually called me that evening and told me that they had found exactly what he suspected.  I was honestly relieved because mechanical problems have solutions and fixes, unlike all of the other problems I was having.  The solution was to drain the fluid.  The hope is that, by draining the excess fluid, there will be reduced pressure on the blood vessel and the swelling will resolve itself, as well as the back pressure my kidney is experiencing from the fluid pressure on the ureter.  This should lower my blood pressure eventually as well as hopefully lower my creatinine and protein.  It's going to take a few days to see any actual results though.

So, Joacim and I headed to Mayo bright and early this morning for another procedure.  We went to get labs done at Charleton first, and then headed over to St. Mary's (which I had actually never been to before) to have a drain put in my abdomen.  Awesome, right?  Another tube hanging out of my belly.  Now, they could've just drained the fluid using a needle, but there's a good chance that they would've had to do it again in a few days, so from a long-term perspective, having this JP drain put in saves me from future procedures.  The procedure went off without a hitch...I actually ended up having the same doctor that did my kidney biopsy, so it was nice to see a familiar face.  I have the drain in now, and it's already removed a lot of fluid....over 250cc's so far.  I think I can feel a difference near the kidney, but my leg is pretty swollen still.  I'm patient though...I know it'll take some time to resolve.

The plan is to keep this drain in for 4-5 days, and hope that the fluid pocket kind of collapses on itself.  Then they'll keep the drain in but cap it off for a couple of days to make sure no more fluid pockets form, and then eventually it'll be removed.

The drain is under the big square bandage, and that beautiful bulb in my hand is full of fluid.  Totally gross, I know.  And there's NO WAY of hiding this thing, so it looks like I'll continue to be a recluse for the next week or so :(

These are all of the supplies that I need to maintain this thing.  I have to empty it whenever it's half-full (which is about every 2 hours), and I have to flush the lines with saline two times per day.  I can take a shower (thankfully) but need to try to keep it as dry as possible (which will be impossible).  Luckily they sent plenty of bandages.

It's pretty clear that Joacim is nearly as excited as I am ;)

Honestly, this is not at all what I thought it would be like...not by a long shot.  I've been in this medical bubble for 7 weeks now (counting the week I spent at Mayo pre-transplant) and it literally is all I know.  I've run into a few people "on the outside" and I honestly just felt awkward.  Most of the time people have no idea what to say to me, and I totally understand that.  In their mind, they probably thought I'd be fine after transplant, never considering that this alternative was a possibility.  I'm sure my mind is playing tricks on me as well.  I'm so self-conscious right now because I think I have a bit of a moon face, and my eyes are pretty puffy from the fluid retention.  I think people just don't know what to think.  I find that I'm VERY uncomfortable in the land of healthy people right now.  I mean, let's pretend for a second to not talk about my kidney....what else would we talk about? I mean, I've been living in my medical bubble for a long time now....I haven't done anything that isn't somehow related to my kidney, which makes me a pretty shitty conversationalist at this point.

If you happen to see me out and I'm all hells-awkward, now you know why :)