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.

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.