And Here. We. GO! (Training starts tomorrow)

[justjen321]

Hey Bigbill! My fellow graduate! (I don't know about you, but I didn't get the big pile of graduation cards filled with money!)

82 boxes! Holy Doodle! Bet that's cause you weren't cleared for PureFlow yet.

You absolutely can wake up to a wet carpet, but you can be pro-active and avoid it as well. One of the key things my nurse, and then NxStage told me was 'Make SURE you check ALL the connections. Tighten them.' It's actually what they thought happened to me, but it was defective SAKS.

I just finished making a batch, and my heart dropped when it failed the connectivity test. BUT, I followed the book, it retested, and it passed. So tomorrow, when the nurse arrives, we can indeed be using PureFlow.

YAY on the buttonholes!!! One of his is working beautifully and I -LOVE- it. Like, I wanna do a happy dance when I see the flash from it love it.

Brief advice (We learned this by making them on a cot and him being in a chair today.) Plan -how- you want to sit when you do dialysis on a regular basis. Cause switching positions after buttonholes are made can be tricky.

Jen

[lmunchkin]

Bill, so glad you get to do PureFlow.  It probably won't happen to you, cause I believe Jen got a Defective box apparently!  I have only had that happen 1 time in almost 2 yrs and it was where my "wedding ring" poked a hole in Sak and I was unaware of it. Needless to say, I was not a happy camper about that!  Pureflow is just so much easier to deal with.

Like yall, that first delivery was a bear!!!  But now I have it so minimal with 2-3 day extras.  I keep a 7 day supply of hanging bags for the simple fact, we will D outside on the deck some.  With this pretty weather were having, we want to take advantage as much as possible. Soon it will be too Hot!

God Bless,
lmunchkin
 

P.S. J. has no problems with sharps!  He can move, sleep or whatever, but I tape them very well, too!

[bevvy5]

We don't use NxStage up here north of the 49th but don't you use any sort of leak alarms?  We have three or four of them placed strategically around so that if there's fluid/water that starts leading where it shouldn't we'll know.  They're just little portable battery operted things about the size of a deck of cards.

[big777bill]

 Bevvy5 I have the exact thing you described on the base of the NxStage cycler. I don't know for a fact but I would assume the same would be available for the pureflow.

[justjen321]

@Bevvy & Bill

It does have a leak alarm. It's in the tub. I have no idea why it took so long to wake me. I'm not even sure if it was maybe going off for a long time before I heard it, since it was two rooms away, but it did finally wake me. We also have the small alarm that Bill speaks of.

I'm sure, when I'm in the same room with the thing, I'd catch it earlier.

[big777bill]

   Jen you don't want the small alarm on the cycler to go off. I got ours wet when I was priming the filter on the cartridge. It was so loud we could hardly stand it! Patty had to get her hair dryer out to get it dry enough that we could put in back in. I had to take the battery out in the mean time to shut it up, lol. Believe me it is extremely sensitive. If the alarm on the pure-flow is anything like that you would be able to hear it across the street. Now when I prime the filter Patty holds a cup under it to catch the overflow.     God Bless, Bill

P.S. I didn't get any money filled cards either!

[amanda100wilson]

When my leak detector has gone off on my NxStage machine my husband threw it in the drawer on one occasion and in our closet wrapped in a towel on the next. It is pretty loud!

[lmunchkin]

Oh Bill, that sensor on the cycler is a Bomb!!  Sounds just like a smoke alarm going off!  Very, very loud!!  In your manuals that you brought home, it shows every where that sensors are located.  You know about the one on the cycler that lays down to the left at the base (facing the cycler).  Then there is the one in the bottom of tub.  There is also one on the actual control unit in the PFlow, I believe it is in the back, but not sure exactly where.  Then there is one where you put your PAK in, sitting on the bottom where you slide PAK.  They have sensors all over this "Baby" so if something leaks or something is not right, it will let you know!

One time I was placing a new PAK to prime and the sensor immediately alarmed the minute I put water to it, it leaked.  Pak was defective.  Im just so thankful for those sensors.  They may be aggravating, but they can really save you time!

God Bless,
lmunchkin
 

[justjen321]

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.

[big777bill]

 Jen you got me all nervous now! We go to start my buttonholes on Tuesday. Finally going to give this virgin fistula a go. I sure hope it's easier than what you describe

[lmunchkin]

You'll do fine, Bill!  Just relax.

God Bless,
lmunchkin
 

[bevvy5]

We are so new and know exactly how you feel.  We've been just coming up to two months at home so it's getting to be not nearly as stressful.

Just be prepared that sometimes it's hard to find that stupid vessel, good nights and bad and from folks I've talked to, it's never an absolute slam dunk.  Greg and I call the tough ones "Where's Waldo" nights.  I literally envison his fistula laughing and saying, "Can't catch me."

But you know the buttonhole is there, it didn't disappear overnight, so it's just patience and trying a bit different angles, bit differnt position, roll the arm a bit.

But you're away - great job!!

[justjen321]

@bigbill -

All fistulas and accesses are different. You may have no trouble at all. Your nurses will help you make the buttonholes. When there are sharps in your fistula, just don't move. Period. At all.

But, you MAY have issues. Trust me, we've gone through lots of frustration with these buttonholes, and still do to an extent, although I'm more confident and he's more comfortable because there ARE tunnels, which makes it less painful. But I promise you, when all is said and done, even if you have to fuss like I do, it's gonna be SO much better than a cath. For him, he hated the cath, the showering issues, the fear of it getting pulled, getting infected, etc. So, it may give ya some fits, but you'll get through em, and when you do, you'll go take a long, LONG hot shower and relax.

[big777bill]

 Thanks Jen! I went up today to start the buttonholes. The verdict was no buttonholes for now. The Rn tried but she couldn't get a flash. She didn't want to poke too much so she stopped trying. She said the fistula isn't mature enough yet. I guess sometimes it can take a year or longer for one to mature. It figures I would be one to have a slow maturing fistula. The Dr told me to not get upset about it and just wait a little longer,sound advice. I'll have to wait a while longer to enjoy that nice hot shower, lol. If I let all the little things that go wrong bother me they would have me in a rubber room. It really helps talking to someone like you who has walked this path. God Bless, Bill

[amanda100wilson]

sorry to hear that, Bill.  any idea when they are going to try again?

[big777bill]

 Amanda,  she said she will give it another look when I go to kidney clinic the 1st week of May. That's only 2 weeks away though so I can't see it being that much better in such a short time. The thrill is very noticeable so I thought it would be easy. Shows you what I get for thinking.

[boswife]

hi guys, im prety 'out of it' latly, but............  i always enjoy anything NxStage    So, im guessing Bill that your using the squeese ball thing? Bo was real good with that i was proud of him .  And... his fistula  was good very early (i think 7 weeks) but!!!!!!!!!!!!!! they had the head tech/nurse start him and he was the only one who touched that fustula for the first 3 months.  I couldnt believe that it was all so smooth and then the very day they moved him to the 'rotating' area of the room and another tech stuck him, he infultrated    Im glad that the nurse that was canulating stoped and didnt just keep at it!!  very thoughtful and very well may have saved you a lot of pain!  Hang in there, it'll all come together..  Other than that,, how are ya 'newbies' to nxStage doing???  All of ya

[bevvy5]

Don't want to pile on the nagging but do your exercises as much as you can.   Watching TV, be squeezing that rubber ball.  Greg's was a miniature rubber kidney - very appropriate - LOL.