Week 3 dialysis - transition from Hemo to PD

Whew...this week went fast.

On Monday, I woke up early to get Izzy on the bus, and then logged onto my work computer to start sorting through my emails (I'm sure no one envies THAT particular task :), and the afternoon was spent at the dialysis center doing my hemo.  I was actually excited for that one, as I didn't have to pull as much fluid off as I thought I would, which meant that the treatment would be a bit easier.  I noticed that it was getting easier to recover from the treatment in the evening.  I would still come home and lie down most of the night, but I wasn't as bone-tired as I had been the first week.

On Tuesday, Joacim stayed home to help with the delivery of the PD supplies.  It seems that we are 2nd on the route, which means the delivery will come early.  My PD nurse says we usually get the same driver, and some people build such a relationship as to allow access to their homes for their deliveries.  I'm not so sure that I'll ever be that comfortable, but I do think that I'd at least like to leave him a little something occasionally.  He tried to bring the first set of boxes through the inside of the house down to the basement, but it's a tight fit, so the remaining delivery he went outside, down the hill and into the basement from the back of the house.  If this continues, he'll HATE it come January when there's 2 feet of snow out there, and I'll be a guilty mess.  Guess we'll jump off that bridge when we have to!  Here's the picture of a monthly supply delivery, in case you didn't see it in the last post:

On Wednesday, I worked a little more.  I sent an email to my coworkers letting them know how I was doing as I don't know if they all know about this blog.  Can I just throw out a "Thank You!" here too?  My coworkers have totally picked up everything that was left hanging, and I can't thank you enough! I had what is hopefully MY LAST hemodialysis treatment.  My friend, Nita, drove me and stayed the whole time.  It's amazing how fast 3.5 hours go when you're talking to a friend the whole time :)

On Thursday, Joacim and I began training on home PD (peritoneal dialysis).  I was a bit nervous, because honestly, how weird is it that I'm filling my belly with a crapload of water through a tiny tube that comes out of my belly?  I mean, wrap your head around it.  It's AMAZING that someone came up with this as a treatment for kidney failure.  And the science behind it....well, it's definitely cool.  Joacim and I ask a ton of questions each day (we also did it today), and there are always more.   We've had 8 hours of training so far, and we've learned how to do a manual exchange (without the cycler machine) so that I can do dialysis even if the power goes out, or if I'm on a long road trip and don't have anywhere to power my machine.  We've learned about sterile technique, fluid balance, how to set up the cycler, exit wound care, and a little on nutrition (I need to eat a LOT of protein while on PD, because protein molecules cross the peritoneum quickly and easily, so I'll lose more protein on PD).

This is what fluid overload looks like.  You're all familiar with these pictures, as I've posted a ton of them in other posts. 

This is something I still deal with, but it's what I'm working on lessening

I think I may become a bit of a freak out my weight, and how much water I'm pulling off with each night.  You see, dialysis not only cleans your blood, but it also helps pull off excess fluid...how much fluid is the mystery that I'll be trying to find the answer to.  I'll use several things to help manipulate it to achieve my optimal dry weight (this is my weight assuming no fluid retention), including:  dialysis solution concentration, dwell time, extra manual exchanges in addition to nightly cycles, diuretics, and diet.  It'll take awhile to figure out the formula, but that challenge is something I'm looking forward to.  I mean, this is something I can totally do!!!

Today, after dialysis, we went to The Container Store (otherwise known as Nirvana :) to get organizers for my cart.  This cart is needed to keep all of my PD stuff together, and I'll use it to set my machine and associated supplies on it.

Things I need to store include:  blood pressure machine, thermometer, gauze pads, sterile caps for my catheter and the PD cartridge tubing, PD cartridges, drain bags, cleaning solutions, antiseptic gel, and face masks.  I'm sure there's more that I'm forgetting, but that's a decent list.  I haven't gotten everything organized yet...I think that's the task for tomorrow, but at least I have all of the stuff.

So, that's been my week in a nutshell.  Overall, I still think I'm feeling better than I was.  I'm VERY anxious to get this chest catheter out, and I actually think that can happen the 1st week of December.  I meet with my nephrologist in the clinic on Monday (where we're doing more training), and I'll talk to her about it.  The site is a bit irritated right now, and it's itchy and annoying.  Plus, getting this out brings me one step closer to being able to start up yoga again.  I was THRILLED to learn that I can do hot yoga with this PD catheter....I was worried that they'd say no, but that's not the case.  Granted, it's going to take months to build up my strength again to be able to go to a class at Lifetime, but it's a motivator :)

How do I thank you enough?

Before I go any further, I want to make sure that I say a great big "THANK YOU!" to my neighborhood.  This has been the most supportive place, and there is absolutely no way that Joacim, Izzy and I would've made it through these last few weeks without you.  From the rides to and from dialysis, to the meals delivered to our doorstep, to the countless hours of playtime for Izzy....there are just not enough "Thank You's" in the world to express my gratitude!!!

And to my wonderful friend, Sarah, for sending the gift to help me occupy my time....we're taking advantage of it right now ;)

And to the countless people that have shared my blog (2100 view in 1 day!!!).....how can I tell you how much that means to me?  Strangers even....sharing my posts.  It's so very humbling.  And all of that sharing has lead to an uptick in all of the other posts, so that means that people are taking some time to go back and read previous posts, which I can only think means that people care and are interested in learning more!!!  Wow!

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....

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....