A week in the hospital and now dialysis

Radio silence once again, peeps.  Certainly not intended, but unavoidable considering everything that's happened.  I kind of "fell off the cliff" in regards to my health a couple of weeks ago.  My last post talked about my nephrologist visit and how he said that "I'd know" when it was time to start dialysis.  I guess "I knew" the morning of Monday, Nov 3rd.  The weekend before that I just felt awful....I could NOT get warm enough (we're talking 3 shirts, heating pad, thick fleece blankets and a space heater), and I was too nauseous to eat anything.  I started seeing my weight drop drastically, and by Monday morning I was down to 138 pounds.  I called my nephrologist on Monday morning and told him about the weekend and the symptoms I was experiencing, and he suggested I come to the hospital.

Now this was something that I'd thought a lot about.  I tried to find a nephrologist with local hospital privileges, but they weren't seeing new patients until January, so I was never able to follow-through with that.  I could either take my chances and go to the emergency room of a local hospital, or I could make the hour-long drive to a hospital in Maplewood and get admitted.  I chose Maplewood, simply because I knew my neph had privileges there and the surgeon he preferred for the PD cath placement was there.  Looking back now, I'm SO glad I made that choice.  Medical professionals in a typical ER setting see someone like me, and a whole lot of unnecessary time is spent trying to get a handle on my situation.  By going to Maplewood directly, my neph was able to get a room for me, and get all of my surgeries lined up before I even got there.  

This picture is of me right after the neck catheter placement procedure (which I was horrifyingly awake for).   Yeah, I'm not looking too good in this one.  

The reason we had to do this temporary catheter in my neck is that I had taken my blood thinner the night before, and there was no mechanism to reverse it's side effects, so we had to wait to put the tunneled catheter in.  But I desperately needed dialysis, so this was the option I had.  Can I just tell you that this was horribly uncomfortable, and I just started to get a bit freaked out knowing that there was this catheter thing essentially IN MY VEIN and sticking out of my neck.  Holy hell...it freaked me out.

But I DID receive dialysis that first night around 4:30pm.  It's kind of amazing that it all worked out.  This picture below shows what the dialysis machine looks like (that's my blood in the lines getting cleaned).  I had no idea what to expect, but I did experience a significant headache, with some crazy-painful cramping at the end.  We didn't end up pulling any fluid off due to the cramping (not that I had any fluid to give as I was severely dehydrated).

This picture was taken Tuesday during my dialysis session.  These were flowers and a balloon from my co-workers, hand delivered by 2 of them (my co-worker is my nephrologists brother :).  Such a happy surprise!

The second session of dialysis left me feeling like a zombie.  I felt like my life-force had been sucked out, along with all of the toxins, and there was this residual vibration in my entire body, like there were a bunch of happy cats trapped inside, purring away.  I make it sound pleasant with the cat analogy, but it was anything but pleasant.

By Wednesday I was feeling pretty cruddy.  I had been taking sponge baths each day (can't get catheters wet), but one of the nurse aides offered to try to help me wash my hair.  They have these shampoo caps that they use for patients that are bedridden, so I gave it a go.  They heat it up in a microwave first to activate the "shampoo" and then they're supposed to put it on your head, lather up and then use a towel to dry (sort of like a dry shampoo).  You can see that the aide is having some difficulty fitting all of my hair in that tiny cap, but she somehow managed it.  I tried to rinse the stuff out, but it ended up making my hair feel even grosser.  Then I promptly called Joacim and asked him to bring me some shampoo and conditioner :)

This is what dialysis looked like for me out of my neck.  These two tubes (one is where the blood is pulled from the body and the other is where it is returned....the colors don't necessarily matter in this case).  You can see that they're both empty here.

Now you can see one of the tubes slowly start to fill with my blood, which is then going to the machine for cleaning.

And now both are filled, as the blood on the blue side is what's returning from the machine (all nice and clean) and back to my body.

I could't stop taking selfies of this thing.  I was intrigued yet horrified all at the same time.  My neck started to REALLY bother me because of the tape (you can see it pulling on my skin).  They also cover the ends of the cather with gauze, so it gets heavy, and it kept pulling on the tape that was pulling on my skin.  The only way I was comfortable in regards to this part was to lie down, because then I could at least use gravity to position it in the least annoying way.  But after awhile, lying down all the time just sucks, and that hospital bed was awful (not to mention the 9 blanket that were piled on top of me.....if you ask for a warm one, they just put it under all of the others so it's closer to your skin, but don't remove any of the ones on top, so they build up over time).

This pic was taken on Wednesday as I was getting wheeled to the procedure room to have the neck catheter removed and a tunneled chest catheter placed.  I had been fasting (no food or drink) ALL day, and by this time it was 3:20pm.  As soon as we got into the suite the procedure was cancelled.  The doctor was running over with the previous patient, and then he had to be out of the building by 4:00 for a prior commitment.  I get that these things happen, but why even bother wheeling me down from my room if they knew he was running over????

I was lucky enough to get some visitors during my time at the hospital.  Izzy and Joacim came one night (I think it was Wednesday).  I was feeling pretty awful at the time, but I tried so hard to appear well for Izzy so she didn't get freaked out by everything.  She seems decently at ease in our selfie ;)  I also had several co-workers and my boss take time out of their busy days to drop in and visit.  Sometimes I wasn't the best company, but their visits were such a huge mental help!  And they brought food too!!!

Here was my nightmare of a bed.  I am not an organized patient...there were cups and papers and crap all over the place.

I was still being starved every morning at this point.  One of the days, I returned to my room after dialysis and saw this happy little surprise!  It's good to have friends that are nearby :)

By Thursday, the neck thing was really bothering me, so the nurse wrapped an ace bandage loosely around my neck in order to support the weight of the catheter.  MUCH better after that.  She adjusted my tape a little too, which finally allowed me to look up (I was starting to feel like the Hunchback of Notre Dame!)

 I FINALLY had my chest cath placed sometime Thursday (this pic was taken right after I returned to my room).  Thank DOG I was drugged up for this one, because it hurt like HELL when I woke up.  The catheter is tunneled under my skin, but over my collar bone, and apparently bones are pretty tender.  I felt like I had an elephant do the hokey-pokey on my collar bone.  SO.  INCREDIBLY.  PAINFUL.  Thankfully, no dialysis that day.

There wasn't much space left on my arm to do anything, but they still managed to draw blood from it every morning around 5:30am.

This was one of my nurses (who were al fantastic) named Rissy!  She'd the kind soul who wrapped up my neck, and really just fought to make sure I had the best care possible.  Nurses are a gem.  The amount of shit that they have to put up with is frightening and sad, so I tried my best to be a good patient.

I'm pretty sure I took this pic right after the surgery for my PD catheter (judging from the stoned look on my face).  I'm pretty sure I tried to call people on FaceTime because I could not move, and the phone somehow was in my hand.  Wow, PD cath surgery was also stupid painful.  I can't describe it.  Just awful.  Normally it's an outpatient surgery.  Either I'm a wuss, or all of the crap that my body had already been through that week was taking it's toll.

I asked the dialysis nurse on Friday to take this picture, because I wanted to remember what it was like at my worst.  This was my last day of dialysis in the hospital, I had a MASSIVE migraine that I was fighting, and the guy getting dialyzed next to me had MRSA and was vomiting and moaning throughout the whole session.  Quite possibly one of the worst 3 hours of my life.

And, amazingly enough, I was able to go home the next day.  Joacim came and picked me up around 4:00pm, and we were off.  I was terrified, honestly.  I was terrified due to the pain I was still in, and being home meant no IV dilauded (which is an INCREDIBLE pain drug), but there really was no reason to keep me there, and I probably did recover faster being at home.  I left the hospital with a chest catheter and a PD catheter.  The chest catheter is used for the in-center hemp dialysis that I have to do until the PD catheter is healed, which takes about 2 weeks.  While in the hospital, I found out that I was approved on the waiting list for PD with DaVita/Baxter, so things were pretty much in-place.

More follow-up posts coming....