Slowly on the mend

Being home is DEFINITELY better than being in the hospital.  The first couple of days were ROUGH, though.  The first night home (actually the first thing I did) Joacim had to help me shower.  I can't get the catheter in my chest or my stomach wet, but I also need to wash this crazy hair of mine,  so thankfully he was willing.  I asked him if, 10 years ago when we said "in sickness and in health" that it was literal, and he laughed :)

Izzy is most definitely happy to have me home.  I'm starting to see the effect that this is having on her.  I bet it's really hard to see her Mommy this way.....not being able to walk much and spending most of the time in a recliner (at least that first week).  She's scared to hug me because she's afraid she'll hurt me, and that's gotta be tough, but we're doing the best we can.  

This is what the catheter looks like in my chest.  The initials and date are on there to indicate the last time the dressing was changed, and it gets changed before every dialysis session.  

 This is what the PD cath looks like (at least under the dressing).  There will clearly be no more bikini wearing in my immediate future.  The two holes above and below my belly button were where the laparascopes went in, and they used my belly button to insert the camera for placement.  These are now covered in glue which will eventually fall off.  There's still another piece to this catheter that I'll get Thursday from my PD dialysis nurse when I start training, and it will attach to the end of the tube.    Until it's healed, I can't get it wet at all, but once I'm given the all-clear, I'll be able to shower as long as I don't directly spray the area (it's okay if water washes over it though).  Guess that doesn't really matter though because still now showers due to the chest catheter.  That will be removed (via surgery) once they know that PD dialysis is adequate enough for me.

Joacim, bless his heart, spent the entire first in-center treatment with me, reading the training manual on PD, and sitting in a hideously uncomfortable chair with a back that he threw out 3 weeks ago trying to get his boat securely on the trailer (hey, ask him why he didn't just back it up and reset it...I wasn't there :).

This is what dialysis looks like (at least for me).  I spend 3.5 hours lying down, watching the little TV that's part of the machine/chair, while my blood gets cleaned.  The residue you see on the floor is the crystallized remains of the dialysis solution that's used in the dialysis machines.  These things leak like crazy (the hoses, that is), and the floor is usually kinda crunchy.  I don't have a picture of the entire dialysis unit (out of respect for my fellow unfortunate visitors) though.

I also received my first month's supply of dialysate for PD.  That's a LOT of boxes (enough for 30 days), with varying quantities of bags and concentrations. It's a real hodgepodge at first, but I think we'll start to figure out what works for me, and then future deliveries will be more uniform.  These deliveries are monthly, with Baxter bringing in all of the boxes, and rotating the supply to ensure everything is fresh.

 I've done in-center dialysis 4 times so far, (7 sessions total including those at the hospital) with (hopefully) my last one being tomorrow.  I start training on home PD on Thursday.   Joacim is training with me, so pretty much Thursday through next Tuesday is all booked up with both of us at the dialysis center getting trained on how to run the machine, and what to do if something goes wrong.  We'll also be trained on how to do "manual exchanges" that will allow me to dialyze if we lose power, or if I'm in a place where I can't take my machine.  I think I'll do one fill/dwell/drain per day initially, and then work up from there accordingly.

I don't know how people do it for years and years on end.  I really don't.  In-center dialysis is life-changing....it sets the tone of every single moment.  It decimates my quality of life.  On dialysis days (which are M, W & F) there isn't a lot of time in the morning to do much, and my session starts at 2:15, which means I'm typically leaving the house at 1:30.  I usually get home between 6:15 and 6:45 when it's all said and done, and then I'm so wiped out that I go straight upstairs, turn on the heating pad and sit in my recliner and stare until I go to sleep.  On off days, I sit in the same recliner and recover and make a bunch of phone calls to coordinate something kidney related.

I'm happy that I'll be switching over to doing dialysis at home....everything I've heard and read tells me that this will give me more freedom because I'll be dialyzing in my sleep.  I also hear I'll feel better, as it's a gentler form of dialysis.  Granted, every single day I'll be hooked up to that machine for 8-10 hours, so it's no walk in the park.  I want people to understand that this is life on dialysis.  It's not a cure, just a treatment, that affects every single aspect of my life.  Honestly, it feels like this is only the beginning of my journey....