Annnnnnd... we're rolling.

After what felt like a million fits and starts, home hemo is starting to work for us. :)

One of the last days we were down at Wellbound to dialyze and to continue learning, they called me into a room with another patient and her daughter. The woman has had her fistula for two years, and self cannulates. Her daughters are there as her back up. She filled me in on the fact that fistulas are just finicky. Even now, she'll have days where she has to use sharps. (Which wasn't what I -wanted- to hear, but WAS what I -needed- to hear.)

We had some struggley days upon returning home AGAIN, but the waters are so, so much smoother now. I no longer have to poke around for ten minutes in the buttonholes to hit the vein. I no longer have that super stressful feeling in my belly that I'm forgetting something important. I do keep the flip chart of set up out, but really only check it to double check myself. I love, LOVE that most of this is feeling more and more second nature.

We are finally able to get two blunts into him, and our runs are largely uneventful. What's even more exciting is that the few times we've had some bumps, they weren't terribly scary. I've lost a system (which is losing the cartridge and all the blood that's in it during a treatment.), I've forgotten to close a clamp and ruined a great pair of white capri pants with his blood, and I've decided to scrap a treatment for the day when his venous pressure just would NOT get under control no matter what I did. And all of those things were just okay. We are adjusting, and we are learning to make dialysis work FOR us.

Used to, when I began the set up of the machine, I would start the set up of my own stress. (He had his own stresses too. ) 'Will I get the needles in? Am I setting this machine up all for naught? Are we going to have to drive back and forth to Wellbound more because we aren't doing it right? Am I going to root around so long he suffers lots of pain?" I don't really have that anymore. I can confidently set the machine up, prepare my little rolling table with all the things I need to cannulate him, and move through this process a TON more comfortably. And for me, that's hugely important.

Today, we drew his labs at home for the first time. I called down to get a refresher because I've not had much practice with it, but we did indeed get his labs drawn, including his transplant bloodwork, and with our handy dandy centrifuge, it's all spun and ready to go to the lab. I'm super excited because next week is our clinic. And usually, you get your blood drawn AT clinic, so you are actually working off labs that are from the prior month. I told myself that now that we control when they are drawn, I will draw them in time to have NEW, FRESH, up to date labs each clinic.

And so, onward!

Oh yes we did!

So, let me go back to Friday.

We'd run the second half of the week in clinic, because his access buttonholes were just being super finicky. Well, not both of them. I could easily stick the Arterial (the lower buttonhole, and the one that pulls blood out of his body to be cleaned.) but the Venous was really, truly not cooperating. Not at ALL. So anyhow... Friday...

Super Needle Nurse hung out with my while I was placing his needles, in case it just wasn't gonna happen. We hadn't successfully had two blunts in him in ages. AGES. So, I confidently head for his arterial, because it's easy peasy for me. Or it was. No dice. I prodded, literally, at the arterial for 20 minutes. Then, the FLASH! YAY! Finally!! Except no. The flash died. No dice. Okay. Pull the needle. Place a new one. Bang. In like Flynn, flushed, and taped.

Now, I'm feeling a little anxious because his venous (the upper, and the one that returns the clean blood to his body) has never liked me. Never. I swear it sees me coming with a blunt needle, laughs, and rolls away to hide under muscle or something. Great. It took me AGES to get the normally easy arterial line in, NOW it's time for the 'hard' one? Just great. My jaw is slightly clenched as I take the longer blunt needle provided (1.25 inches, versus the usual 1 inch) and brace myself to NOT get frustrated when this takes me 6 days. As I'm working this all through in my mind, I have the needle at about half it's length in his arm, when I am so shocked I almost jump in surprise. Flash? What? That just isn't possible. It just isn't. But yeah, that's really the flash I see, and I really should flush it, and hook him up to his fake kidney. And so, I do. I then proceed to yell so loud I startle other patients training in other rooms, and stroll out into the hall to make our training nurse come out from the room she's in to fist bump me. Yeah. I was pretty damn happy.

Saturday, we are not doing dialysis, because his arm is rather sore from my marathon rooting around session. So, the plan is to stick him anyway, without running dialysis, just to keep the tunnels open and such. And then, that night, to make a batch of dialysate in the PureFlow so that on Sunday we can give it a whirl on our own.

Well, the needles didn't get stuck Saturday. Okay. Not the worst. It'll be okay, right? Of course. Uh huh. Yeah.

Saturday night, I make up a handy dandy batch of dialysate, and Sunday, I set the machine up. The entire time I'm setting the machine up, I'm pretty sure I'm going to be wasting this entire set up. And that tomorrow, we'll be back down at Wellbound trying to get his silly access working.

So down I sit, supplies at the ready, he gets as comfy as he can, and I work on the Arterial. Nope. Nothing. Nada, zip, zilch. After ten good minutes of poking around, I decide to take a break from searching for this one, and work on the Venous. Cause Friday had to be a fluke. But no. Venous, in in 10 seconds. Okay. Back to the Arterial. What? In? Seriously? Freakin A. Flush em both, grab my set up, and away we GO.

We did a complete run, I managed to get his vitals and numbers every half hour like I'm supposed to, and we took him off when we finished the dialysate prescription (25 Litres). No blood spurts, nothing exciting at all. :)

Holy cow, it felt GREAT. :)

Damn Venous!

It's been awhile since I've written here. Because it's been awhile since we've done Hemo dialysis.

Last Wed was our first day at home. The nurse came, we wound up having to do a sharp in the venous, we ran for two hours, and called it a day. She made plans to come back the next day until I got him needled, then leave.

Oh, what fun that was. She arrived to a fully set up machine, and we went to work with the needles. Arterial was beautiful, Venous, not so much. 8 needles later, we decided to pack it in for the day and simply try again the next day. Our issue was an odd one. We were getting IN to the Venous, with a blunt even. BUT, we were drawing a clot. Every. Single. Time. The way it behaved, we were drawing a clot laying on TOP of the vein, not in it, and frankly, there just isn't a lot you can do about that. We pulled hard with syringes to try to encourage the clot out, but no.

And so, on Friday, I stuck him again. Clot. Saturday. Clot. We really felt like all we needed to do was get this clot out, but weren't able to do so. Sunday, FINALLY, I got a flash and got the blood almost all the way up the end of the catheter. Then, clot. BUT, I think it was the bulk of the clot, and so, today, we will try again. I'm not setting the machine up prior, since we've had so many failures and I'd prefer not to waste so many supplies. I'll just flush him back with saline and a weensy bit of Heparin and set up real quick if I'm successful today.

Thankfully, we are fortunate in that he still has his PD catheter, so we can do Peritoneal Dialysis when this one fails. Once we hit some smoother sailing, we'll have that removed.

Wish us luck!

Batch? What? Are you baking cookies?!

It was pointed out to me more than once that sometimes I don't do a good job of explaining the 'Shop Talk'. :) So, here's an attempt at explaining what a 'Batch' is.

This is our system. It is resting on a wheeled flat cart that we purchased because it makes this so much easier to move if you have to. On top is the dialysis machine. the NxStage System One. Below that, the great big nightstand looking piece is the PureFlow Pro, and that's what makes the dialysate. 

dialysate [di-al´ĭ-sāt]

1. the fluid and solutes in a dialysis process that simply flow through the dialyzer and do not pass through the semipermeable membrane, being discarded along with removed toxic substances after they flow back out of the dialyzer.

When doing dialysis, either Peritoneal, In center Hemo, or Home Hemo, you have to use dialysate. It's what pulls the toxins from your blood and moves them to the discard line. 

Traditionally, dialysate was always used from bags that you hung and connected to the machine. This method is a pain, because you have a LOT of boxes delivered to you each month, and the bags are heavy, and cumbersome. I had to use bags today, and had to hang 5, 5 Liter bags. Lifting them high enough on the IV pole time and time again is just yuck. 

The PureFlow shown above makes a BIG batch of dialysate. It holds 60 Liters, and is good for 72 hours. It's WONDERFUL to simply connect up to your PureFlow and have fresh dialysate. 

Because purity of the fluid is an issue, it's taken quite some time for something like this to come out, but many, many long time home dialyzors let out huge whoops when it was introduced. 

And that, my friends, is a 'Batch'. :) 

Home, at last!

So the first two days of this week were interesting. We were still at Wellbound, but largely on our own. Monday, the Venous buttonhole was a ... butt, and wouldn't let us use a blunt. Tuesday, I'm grumbling about it on the drive down, and hubby is trying to kinda cheerlead me into being positive about it. We arrive, and we are all alone during set up completely. (This is good, very good). I prepare, and pop his arterial in like flynn, and reach for the venous, knowing it won't work, but going to give it the old college try. I'm all prepared as I'm sliding it through the track to call for a nurse so we can go with a sharp when what?! Wait. Is that a FLASH I see in is tube?! Blood? How the...? Nevermind.

So I get him hooked up (by myself) and we have a fairly uneventful run. Minor alarms, because the bags were not balanced well (PureFlow wasn't happenin today.) Nothing major. So, HOME. We decide it's time to go home. That's where the adventure begins. :)

First, I must pack up ALL the stuff we've carted down there. A large camping cot. A big comforter. An egg crate mattress pad. A few small throw blankets. Pillows. Jackets. Books. A few more supplies. But enough of that.

Tuesday night, my Dad sets up the water tap under the kitchen sink. We get all manner of fancy, drilling a hole so it can come through the bottom rather than having to just hang out the door. Then, we set up the drain line. There is NO good way to get it from it's temporary location in my living room to a drain without it being tripped on all the time, so, we drill a hole in the floor, and drop the line down into a drain in my basement!

Great! Now, to prime the PAK. I whip out my trusty manual, and in the allotted 2.5 hours, my PAK is happy and ready. SWEET! Now, to make a batch.

I'm SURE at this point I'm gonna fly through this stuff with flying colors, a breeze, really. No trouble at all. So I open a new SAK, situate it in the tub, make the connections, etc etc. And hit 'Go'. And go, it does. I happily listen to the sounds of it making a new SAK for a few hours before bed, then, go to bed. That's when my dreams of all this ease were shattered.

At 3:30 am, hubby pokes me and says 'Is that the machine alarming?' (It's not in our bedroom, so it's slightly distant.) I kinda rouse, and yep, yep it is. So, out I go to see what's going on. I have a fluid leak error. Okay. Flip the book open. Flip to handling this error. 'Check for leaks'. Okay. When I open the door to the PureFlow, I know something is wrong, because water drips just a wee tiny bit onto the floor. When I tug on the tub to pull it out some so I can have a gander, I REALLY know something is wrong when water SLOSHES out on the floor. My tub is full. Half the fluid is in the bag, half in the tub itself. Oy. I decide since I have to use bags the next day anyhow, I shall return to sleep and deal with it in the morning. That didn't work out so well. It took me awhile to fall back asleep, and then, because I hadn't thought to turn the PureFlow off, it reminded me a few times that it had a leak. Back up for good at 6am.

I work at taking it down, lugging the giant bag out, and bailing out the tub. Then decide to call NxStage. When I tell her what happened, she tells me to check my connections REALLY well when I put a new one in, and call if there's trouble.

And trouble there was. Sorta. :) This time, when I put the SAK in, I watched for awhile. Imagine my surprise when the water was dripping from somewhere that doesn't HAVE a connection.

For those who've never used it, on a new SAK, there are two lines that have been crimped, on purpose, during storage. You uncrimp them, and slide this little piece over them to keep them straight.

Well. I looked at them closely, and looked at the other one that was still in the sink, and lo and behold, BOTH of those were damaged. The crimps were just there too long, or what have you, but both SAKS had  damaged tubing! So, when the nurse arrived today (she was aware of the issue) I hollered from my porch 'HEY!!! It was NOT me! It's was bad SAKS!!" Cause, somehow, that makes it all better, dontcha know?

So. She arrives and I finish connecting the bags. (Hanging those bags sucks, really bad.) and we get ready to put Johns needles in. I put his Arterial blunt in with no problem, and flush it back with a wee tiny bit of Heparin because it's been known to clot while I'm dorking around with the venous. But the venous, oh that damn venous. John was a super trooper while I poked around with not one, not two, but THREE blunts. No dice. Then the three of us decide that -I- will do the sharp, because well, I'm gonna have to, aren't I? No dice.

Finally, the nurse put in a sharp, and we were off with fantastic pressures. We only ran two hours because his positioning was really  uncomfortable, and with sharps, you just can't move. She's going to come tomorrow just to be here while I get him needled, then she's leaving, because the rest is pretty much cake.

And you'll be thrilled to know that the PureFlow is humming happily to make a batch. :) So no bags tomorrow and hopefully, no 3:30 am alarms!

NxStage delivery is tomorrow, and we are expecting 35 boxes. Which is not bad, since your first delivery is always bigger. The NxStage lady even said we could store the extra bags in the garage, since we won't use them often. But the box says not to store them above 86 degrees, so I'm unsure.  I shall post photos after all the supplies are in. :)

Oh, Friday....

So, Friday started out pretty good. They'd gotten the machine through the prime process, and I was able to use my handy flip chart to figure out where we were in the process, and what I needed to do to complete it. In short order, we were ready to attempt using blunts on both buttonholes.

Success on my first one. No success on my second. John was a trooper while I poked and prodded, but alas, no. The track is there, but the vein did not want to let me in, so the trapdoor just isn't formed enough yet, OR, I don't know the exact correct angle to hit it. It's a deep one, so perhaps shortly, with time, my angle will be correct.

We ran uneventfully until we were down to about a half hour left. He felt off, and his blood pressure told the story. It was 71/40, which just isn't healthy. I gave him a quick saline bolus (small infusion of saline) and took his pressure again, but no, still down. At that point, I got his nurse and she decided to teach me to do an emergency rinseback. All total, we gave him about 1000 mL of saline before his BP climbed back to where we  felt comfortable pulling his needles. I did his take off, and we kept him lying down while we cleaned up the machine and got our final numbers.

We decided that this weekend, I'll poke a few blunt needles in his fistula, just to keep the paths open. Monday and Tuesday we'll go to Wellbound to dialyze, and then the hopeful plan is that Wed, our nurse will come to our house and we'll do our first home run. :) So, if it all looks good, Tuesday, when we get home from dialysis, I'll make a batch in the PureFlow!

Day: "Too Many"

So we are on day... well, day 'A lot'.

Currently, it's mostly boring, because we aren't doing much 'training' and are mostly just dialyzing in the center while we wait and wait and wait for the top buttonhole to finish. Speaking of buttonholes: My mom mentioned that I didn't really explain what they were. She googled, but (here ya go Mom)

A button hole for a fistula is a LOT like piercings in your ears. It's the same nurse sticking the exact same path every single time. Eventually, a 'track' forms. Then, inside your arm, the vein actually gets a 'trapdoor'. It's a flap, that pushes open when you push a blunt needle in, and slips shut when you pull the needle at the end of treatment. Blunt needles make a HUGE difference in your mobility during a treatment. Why, you ask? Because unless you exert a LOT of pressure, the blunt needle will NOT pierce the vein. (Which causes the dreaded infiltration.)

His lower buttonhole is happy and working. And we KNOW this because not only have the nurses been able to use blunts there, but today, for the first time, -I- stuck his lower buttonhole. I was nervous about this, because I'm nervous about anything I don't feel I have hands on knowledge with. But it was fairly simple, and I frankly felt pretty darn awesome when I got the 'flash'. (Flash: the pulse of blood that throbs in the tubing from the needle when you hit the vein.)

So yay! She tried to put a blunt in the top buttonhole, and was able to do so EXCEPT for piercing the vein. So we had to go back to a sharp. BUT, I got to see first hand that the blunts really just don't pierce the vein. So ya for more knowledge.

I also managed to forget to take my flip book with me, so setting up the machine was an adventure. As were the two nurses and I trying to chase out LOTS of air bubbles from priming improperly. :) We didn't need to toss the cartridge and start over, but it was time consuming.