Hemodialysis....it's just as bad, if not a little worse, than I remember..

It's Sunday morning as I write this.  I'm sitting here at the kitchen table where it's quiet.  Joacim is still sleeping and Izzy is still at a sleepover, which is all great because I feel just crappy.

One week without plasmapheresis is making a big difference, even though I've had 2 dialysis sessions so far.  Now that I'm not getting the regular infusions of albumin that I was getting with plasmapheresis, I'm starting to retain fluid ... quickly.  I've gained 5 kilos since last Wednesday, and today I feel like I'm drowning again.

I'm familiar with this feeling, and the associated panic that starts to set in my brain.  It becomes this weird shitty game where I lose every time.  I've stopped drinking the 3L of water a day I was drinking while on PP because I knew that we were't going to pull any extra fluid off during the first 3 dialysis sessions, so pretty much most of what comes in my body stays in my body.  I even gain a little during dialysis right now due to saline, so that's also adding to it.

I'm vacillating between anxious and nauseous and full-on panic, and it sucks.  I'm hungry, but waves of nausea make me cautious.  I need to take my morning meds but I'm trying to get some food down so that my blood pressure medicine doesn't make me vomit.  I have a chronic sinus infection that has, once again, moved into my chest  for a full on crackly chest cold.  This isn't living.  But it feels as if this is going to be my normal, and I'm having a hard time accepting that.

I reached a new low on Friday after dialysis.  I had a newish friend drop me off and pick me up as I can't really drive home after the session is over (yet).  I did a 2.5 hour run at 250ml/min (so a bump of 30 minutes and 50ml/min from the 1st session)  The first hour is usually okay, but my blood pressure starts to rise at the 2nd hour, and continues to go up and up and up.  When I got off the machine it was 190/120.  I don't know if anyone's ever experienced that, but it feels awful.  I was dizzy, sluggish, had a migraine, and felt like my head was just full of fluid.  I had been taking my BP meds at 9am, 3pm and 9pm, but since BP meds dialyze off, I've been instructed by the clinic to not take the 3pm meds because they don't want my pressure to drop too much (which won't happen but that isn't something I wanted to fight on Friday), but to take them after the run.  Sounds great, until I actually have to do it.

So I did this on Friday ... no BP meds before the run ... get off the machine at 190/120 and then take the meds.  I didn't want to take them right there at the clinic because my stomach was empty and I wasn't feeling well and I knew there was a chance that I'd throw up from them, but I took them anyway because I didn't want to be labeled non-compliant right away.

My poor friend ... I'm not sure if she knew what she signed up for when she offered to pick me up.  She walked in right as I was getting my stuff together, and I was having a panic/crying attack because it just felt so awful, and I imagine it's really hard to see someone you like going through what I'm going through....like actually WITNESSING the panic.  It's uncomfortable and weird and a very strange way to get to know someone.

I was getting hot flashes so it felt good to walk outside.  She helped me in the car with all of my stuff and we headed home. I don't feel much like talking after dialysis, and it was a pretty quiet ride but I could feel the hot flashes getting worse.  And then I could tell that I was going to throw up.  It's literally 8.3 miles to my house from the clinic, but it felt like a lot longer due to hitting every red light on the way.  She rolled down the window for me because I needed a blast of cold air to try to slow everything down, but it didn't work.  In the end, I had her pull over on a busy highway with no shoulder (only a guardrail) so I could vomit.  It was in my hair and on my coat, and my body worked SO hard to get that pill out of it that it was the literally definition of gut-wrenching.  And embarrassing.  I mean imagine...it's 6:30pm on a Friday night, lots of people are driving, and I'm standing on the side of a highway with a newish friend throwing up outside of her car.  I had to drive by the scene of the crime yesterday and take a picture.

I was so embarrassed yet I knew that there was absolutely nothing that I could've done to stop it.  She was so kind though....she got me home and into my house and stayed with me until Joacim and Izzy made it back home.  I felt better after vomiting but the migraine was getting stronger so once my friend left, I headed up to my bedroom, took some migraine meds and laid down.  I kept one small light on but no sound, and laid there for 2 hours waiting for it to subside.

Slowly, it went away.  I started to get hungry so Joacim (sweet man that he is) brought me something to eat (fried chicken, mashed potatoes and gravy from Lund's ... my favorite) and I was able to keep it all down.

I was so scared that the migraine was going to come back that I just stayed in bed the rest of the evening and because more horrified and anxious as I watched the news, so I switched to catch up on some DVR recordings.

I think I ended up being in bed for 14 hours overall, and woke up Saturday morning to this face

Great.  We're back to puffy face.  When my eyes swell like this, all of the fluid in my eyelids leaks out all day, so it's a day where my eyes are CONSTANTLY watering with a thicker than normal eye mucous.  So fucking annoying.  My sinus infection isn't helping at all.  

I have multiple things to tackle when it comes to making this better:

1. fluid balance - this will take time, and this is the one I'm LEAST patient on because it feels icky inside my body.  Once we start pulling extra fluid off, I'll have a better idea of how this will go.  I still take a diuretic but it's a pretty low dose.  On the flip side, pulling off fluid is usually a much harder run, physically, and I'm pretty sure I'll vomit.
2. blood pressure - we were limited with BP meds prior to dialysis due to potassium issues, but that may not be as much of a problem now so hopefully we can play around with them to get my BP lower overall and hopefully change out the one that frequently makes me vomit (labetalol).
3. chronic sinusitis - I think I need to go see an ENT for this one as I've had this since the beginning of November.  I'm now also having trouble with my Eustachian tubes, so my balance is a bit off and my ears are plugged 70% of the time.

I'm told that my new nephrologist will be at the clinic tomorrow during my run, so we'll have lots of things to cover.  I'm going to feel even more awful tomorrow because I'll add another 1-2 kilos on today probably.

I know that, eventually, I'll get this all sorted out, but it's so fucking hard to wake up in my body every day.

My current state is: WORRIED

I have been retaining more and more fluid as the days have gone by, and my usually steadfast solution hasn't worked to start fixing my problem.  Usually, when my weight inches up, I take 40mg of lasix (20mg in the morning and 20mg in the afternoon) and the water starts getting pulled off, but not this time.  I actually GAINED weight when I did it this time.  Even 3 days at 40mg haven't done anything.  I think my perception of weight is horribly messed up now.  Since I started PD almost 1 3/4 years ago, I've had to take my weight every morning and every night, so I'm VERY in tune with small fluctuations in it.  But sometimes these small fluctuations seem to grow insanely large in my head.  I think I can sometimes get into a situation where I see the weight shift over the course of a day or two, and I start freaking out.  It's hard not to, because I know how hard it can be to pull the weight off once it's there.  Then I start doing stupid things like restricting what I eat in order to make sure that the number on the scale isn't freakishly high when I weigh myself before bed.  I know it's wrong, and I'm glad I can self-correct it before it gets out of hand, but that doesn't change the mental battle that's happening.  I just wish this was one thing I didn't have to worry about, but apparently my Genie is locked in a damn bottle somewhere and not granting me any more wishes than the one I received on November 3, 2015.

My blood pressure has been weirdly high since last week also.  No matter what I do (go for a walk around the neighborhood, or even the normal lowering that occurs during plasmapheresis), it's not budging, and is running pretty high 160s/100s.  My diastolic is rarely below 100 anymore, and I can feel the physical affects.  And the only thing that's really changed is that I'm on an antibiotic for a sinus infection, I started taking Flonase and my doctor has me re-start taking sodium bicarbonate to level out the acidity in my body (because if your acid levels are too high, your body starts to leach calcium from your bones to remedy).  I feel pretty confident that the antibiotic (amoxicillin) isn't having an effect, but I stopped taking Flonase temporarily because I've had trouble with some post-transplant approved allergy meds (I'm talking about you, Claritin), and I reduced the sodium bicarb because it can cause some fluid retention.  Nothing is helping and I feel like I'm drowning from the inside.

I noticed my urine output has been decreasing the last couple of days, which is easy to notice if you drink 3L of water a day.  I was a little shocked when I realized it had been almost 4 hours since I last went to the bathroom, and I usually can't go more than a couple of hours.

At plasmapheresis today, I was able to see my doctor and talk about it with him.  He noticed that my prograf trough on Tuesday came back at 10.9, which is a huge jump from the previous Tuesday's level of 7.1.  That may explain why my creatinine also rose (from 2.3 to 2.5) during the same time frame.  My doctor believes that, by lowering my Prograf dosages from 4mg 2x/day to 3mg 2x/day, it'll be enough to jump-start the kidney again, lowering the creatinine and assisting in fluid removal.  He said that if I don't see results by Sunday, that I can take more lasix.  Because I completely trust and respect him, I'll wait, but it's hard to not feel like I'm dying right now.  I'm not being dramatic either.  It all feels very, very awful.  The swelling is not only in my belly, but it's around my ribs and lungs, and moving into my limbs.  I had to loosen my watch today, and most of you know how skinny my arms are.   I'm sluggish, confused, and unable to focus or have a conversation.  At this point, I can pretty much just lie down, which is what I did when we got home today.

Oh, and did I mention that we have friends visiting us from Sweden right now too?  Luckily, they are fantastic and completely understand, but it's still frustrating to me to not be able to perform BASIC human functions like parenting and communicating and enjoying an evening on he deck on this BEAUTIFUL evening having a chat and a glass of wine, or a bike ride to the ice cream store after a lovely day.  Things I excel at right now are sitting, lying down or staring.    Izzy and I started watching a track and field competition on TV, and there was a 41-year old man getting ready to run the 10,000m race.  This guy is my age getting ready to compete for a spot in the Olympics.  I'm 41 and lying in bed at 8:00pm on a Friday night.  I'm not saying I'm comparing myself to an Olympic athlete.  I'm just comparing myself to anyone in my age bracket that's able to live their happy normal life.

My doctor scheduled an ultrasound for next Tuesday to see if these might be signs that I have another fluid pocket near the kidney ureter/blood supply like I did earlier this year.  If that's the case (and I hope above all hopes that it's not) then it's an easy fix for the surgeon but another surgery recovery for me using the same incision (that would make 4 surgeries in this particular area).  I will try very hard to not get ahead of myself and focus on Sunday.  This may be very hard if I wake up tomorrow morning feeling like I do tonight, because it doesn't get better during the day which means tomorrow night will suck even more and I'll miss out on even more....okay, deep breaths...

I wanted to end this post on a positive note, but then when I figured out what I wanted to write about, I realized that this would be an extraordinarily long post that most people won't read, so I'm going to break it out into another post following this one.

Living by the numbers....

I feel like I'm letting "numbers" dictate my life right now.  Between the scale and my blood pressure cuff, I feel like numbers dictate everything about my day.  More specifically, it's affecting how I feel physically.  I may be having a good day, but then I'll step on the scale to see how the diuretics are working, and when I see that I've continued to gain weight, I freak out.  That makes me want to take more diuretics, which are inherently bad for my new bean.  And then I start to feel like I'm drowning in fluid, even though I felt find 5 minutes before.

I swear, all of this shit is really starting to mess with my head and I need to figure out how to get in front of it because I'm sick to death of reacting.

The weight really bothers me, I can't lie.  I think I should be lighter than I am because of all of the muscle tone that I lost after surgery.  And I also only eat half as much as I used to, so I don't understand why my weight is nearly the same or a little more.  I know that I'm retaining fluid, but it feel like it's set up residence in my torso lately and it's uncomfortable.  I've spent a lot of time this weekend lying on the sofa with my heating pad because it's unbelievably cold here in Minnesota right now, and it feels like I feel worse the longer I sit here.  Once I get up and move around, I feel a LOT less pressure in my chest and lungs.  But at the same time, I've been sitting a lot trying to keep my legs up to prevent swelling in my lower legs.  It's gotten a lot better since we switched up the amlodipine (blood pressure med) on Friday, only taking it in the evenings now as opposed to mornings and evenings.  That's made a HUGE difference in my ankle swelling.

With all of the protein I'm still spilling (which is certainly less than it was but not as little as we'd like) I'm bound to have some swelling, but it's hard for me to deal with any of it.  My expectations after transplant are to have a normal life.  No one goes into a transplant thinking about all of the sacrifices they'll have to make, or the substandard parts of their life.  I sure as hell didn't.  I don't want to be a whiner, but my expectations after transplant are to live a completely normal life (except for all of the meds....I can deal with those), but I don't want to have to watch how much potassium or phosphorus I consume, and I don't want to have to freak out about salt because I'll retain fluid.  I just want to live like a freakin' normal person.

Since we stopped the amlodipine, my swelling in my legs/ankles has gone down, but my blood pressure has gone up, which I'm sure will make my numbers shitting tomorrow when I go to Mayo.  I can't get into plasmapheresis until 1:30pm any day this week which makes for long days when you have to get blood work (which has to be done by 8:30am).  Luckily, tomorrow I only have urine labs, and I can do those at any time, so I won't have to drive at 5:30am!!!

I was talking to my doctor last Friday, and mentioning that both Izzy and Joacim were showing signs of getting a cold, and he then wanted to do an IVIG infusion (bleh), but with plasmapheresis being so late, I'm not sure how we're going to fit it in, so I have absolutely no idea what I'll be doing this coming week except for tomorrow.  The rest is totally up in the air.

Right at this moment, I'm just not feeling great.  I can tell when my blood pressure is high, and I can feel every kilo of weight that's extra.  It makes every breath noticeable, and a constant reminder that I'm still not OK, and that there's still not an end in sight.  I wish I could go a whole week without having to check my weight or blood pressure....to see if it would change how I feel physically.  I mean, I wonder how much of this is in my head and how much is real.  I honestly can't tell anymore.  And what's in my head can be manifesting physically too, so I don't know if I'm ever going to know.