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

[bevvy5]

Glad to see the latest chapter - it's a must check and read for me. 

Sounds like things are going not as well as you'd like but about as well as can be expected.  Lots of little glitches on the way.  Hopefully having him lie down will help.  We had to get to five hour runs during the day before we were "allowed" to go overnight.

And continue to be kind to each other, as much as you can.  Hubby and I had a big blowup last weekend where I went postal and told him to shut the F up and let me get this GD machine lined.  I never swear - ever - but had just had it.  However after numerous apologies, we are good.  But there will be those moments where the responsibility of it all can be overwhelming for each/both of you.  And he will start to feel so much better - we've noticed a huge difference in hubby's energy levels, appetite, feeling of wellbeing since we've started running five nights a week.  Makes it all worth it for sure.

You're doing a a great job.

[amanda100wilson]

Bev, we had one of thosethe other day, when my husbandhad probs. with thenew centrifuge and kept talking as I was trying to connect up, managing to leave the venous clamped.  When he used to connect me up, I wasn't allowed to say a word.  I am so glad that I do most of it myself now.  I find it far less stressful.  Anyway a few choice words were exchanged that night (well most of them came from me!)

Today, we finally managed to get them done.  A bit late but I had kept asking my nurse for the labels and finally got them at the beginning of this week.

[chook]

Great to read your story, Jen. Keep up the sharing . . . and the learning   

[flanbyjan]

Yes, lots of good thoughts coming your way.  You sound like you have a great attitude and I detect a sense of humor which goes a long way!  Good luck with the training. 

[boswife]

I just love reading this and wish i had the energy to input  (and im just the healthy caregiver..lol )  It's an amazing 'learning' and i wish i had ours on film..hehe  Hubby was solid and confident with me, and i was a trembling mess....  We made it, and roll along smooth as silk..........most of the time   your doing great with a great attitude..   

[Sue]

I am loving reading all this too! I am hoping to have home D when my time comes..... I have been to the home dialysis training unit to meet the staff, who seemed really great. I felt totally freaked out by the machine but know that the training you get is comprehensive and the support is there when you eventually get to do it at home.
You have a great attitude to the 'learning' Jen , good on ya !!

[lmunchkin]

Today, we finally managed to get them done.  A bit late but I had kept asking my nurse for the labels and finally got them at the beginning of this week.

Amanda, I know exactly when Im doing labs so I will call the clinic a week before (Give the exact date) so I could get them on time.  The clinic I take J to, said that they can't order labels for labs until 10 days before.  Something to do with the UPC code on labels.  I don't know, but I make sure to call a week in advance! I rely heavily on a my Planner for the dates of everything.  Don't know how I could have done without it!

I wish my J could do somethings himself, but he simply has too many issues.  He would probably try his level best, but Im sure he would leave a MESS for me to clean up. lol  So Ill just do it for him to cut out the "Verbal Abuse" from me!!!!!
Seriously, though, he couldnt do it with his issues.

God Bless,
lmunchkin

[kitkatz]

The blow ups is one reason we did not go NX stage machine at home.  I am not sure WE would survive it.

[justjen321]

Sorry for the delay!


Day 8 & 9
He's a trooper. It's just not comfortable to lie there with your arm perfectly still for three hours, but he managed, and we got another solid three hour run.

I set it up entirely by myself and asked them to check it before we stuck him. (Cheated and used my handy flip chart I made) They got the needles in smooth an easy. The run was uneventful, although we ran at a very low BFR because his Venous pressure was wonky. (BFR = Blood Flow Rate, or the speed at which the blood exits and enters the body) No issues today.

Day 9 - Today (I think I've decided to name our machine 'Vlad'.)

Today was another full run. I'm still not sticking his needles, although I'd really like to. Super Needle Nurse did them today, and in the early part of the run, we got some Arterial Pressure issues. His veins have done a dive farther down since his infiltration (bastards!) so the needle just didn't lodge right. She re-stuck him further down, and all went beautifully. I sat and went over the books some more, and kept his logs (I chart his vitals and such every half hour). Currently, the nurse isn't having to 'train' us anymore. It's more about repetition and hands on work. It's starting to feel more comfortable for me, and I think for him as well. Personally, I'm getting a better grasp on what the numbers mean, the lights, and the like. Which is important. I'll repeat, I need to know WHY things happen in order to feel competent to keep things running right, and to handle problems when they arise.

His buttonholes are slow going, because we've had so many fits and starts with his arm, so we'll be there through next week, even though we could likely be ready to be home before then. I'm surprisingly comfortable and not hurried about this. It's REALLY nice to be doing it at Wellbound, mostly by myself, but with support if I so much as raise my voice. In fact, while taking him off, the nurse and I forgot to hit the 'Mute' button on a meaningless alarm, and two of the other nurses poked their heads in to make sure all was well. That's pretty awesome.

I asked for, and was given, a fake 'arm' to fuss around poking needles into today. I know we are trying to make buttonholes, but I'm thinking the ability to stick him with sharps is gonna be a handy one if his access acts screwy at home. So today, I practiced sticking needles into a fake arm filled with red colored water. I only infiltrated a bajillion times. I asked to practice on my own arm, but got veto-ed. I'll just keep asking. I'd love for my fingers to know the feel of 'You've hit your target, STOP'. Seems a valuable bit of info.

They asked us today if a patient who is considering Home Hemo could come in while we were running, see our set up, and talk to us. It was almost amusing, because I feel SO damn new, and lost sometimes. But really, I think what they wanted was for them to see the machine in action, and for both of them to be able to ask questions of people in their shoes. Caregiver and patient alike. They sat with us for about fifteen minutes,  and we talked about the differences between this and PD (their current modality) and just generally tried to bolster their courage. Apparently, we did okay. They asked us if we'd be interested in being part of their mentoring program. Which I would actually LOVE. I am a huge fan of home dialysis, and I'll happily share that with anyone who asks.

So, the nuts and bolts today. I managed to safely get his BFR (Blood Flow Rate, remember?) to 380. When we run during the day when we come home for awhile, we'll want that more like 450. (We will run during the day at home for a few weeksish until I feel pretty comfortable. Waking to an alarm at 2am and feeling like you haven't a clue what's happening would not be fun.) When we switch to nocturnal, we'll drop the BFR WAYYYYYYY down, and run long, slow dialysis. The benefit of this is several fold:

It's easier on his fistula. Think about a hose, and how much longer the hose lasts if you don't run fire engine strength through it.
It's easier on his heart, and we know hearts last longer when you are kind to them.
It often will pull Phosphorous from the system, which shorter, quicker dialysis, NOR Peritoneal Dialysis can do.
Generally, the patients fluid restrictions can be lifted some, which makes for a happier patient.
Plus, doing it at night while you sleep, you lose NO moments in your life. You are free to do as you please.
If you are a dialysis patient who would like to do dialysis at home, under the care of a fantastic organization, speak to your Neph about associating with a 'Wellbound'. They aren't very widespread yet. I'm told that the way an area gets Wellbound to come in is to have enough interest from the Nephrologists in the area. Talk to yours. You could simply NOT ask for better, more EMPOWERING care. We are never, ever herded anywhere like cattle, we are always shown respect, and more importantly, they hold your hand until you are ready for them to take the training wheels off. Even then, they are right there, 24 hours a day, just in case ya skin your knee. It's lovely that instead of visiting them once a month and our Neph once a month, etc, we go there once a month to what we call 'Clinic Day' and our Neph meets us there. So, our entire kidney team discusses what's going on. The dietician, the social worker, the nurse who has our case, the Neph, and US. We are never rushed (in fact, it's usually US who is in a bigger hurry) and our Neph spends all the time WE need, which is a beautiful thing.

Okay. That's the end of my advertisement.

[justjen321]

@bevvy5 - I'm glad to hear we aren't the only ones. It's funny, we fight SO much less SINCE his kidneys failed a year + ago. I think it made us re-evaluate the small things.  I'd love to know more about your schedule. When I speak of nocturnal, they talk about every other night, because of the length of time. We'll do two on, one off when we first start doing the day times at home.

@kitkatz - It's hard, because really, it's stressful on both parties.  Sometimes, we get a little tense with each other, and use the drive home to clear the air.

@flanbyjan - Sometimes, a sense of humor is all ya can do! It can get a little morbid, and today when they brought in the people who wanted to check out the machine and such, I had to remind myself a few times 'Jen, that's really not appropriate at this time'. The nurses are used to us, but really, telling a new caregiver something like 'Hey. If he gets mouthy, show him an air bubble in a luer lock. That'll shut him up' really is a bad plan.

@the whole rest of the gang - thanks!

I sent the folks they sent in to talk to us here. Hopefully they'll show up and learn gobsmacks of information.

[bevvy5]

Greg does two on, one off.  He has blood work done next week and will see what's what then as this will be our first full month on nocturnal.  He pretty needs that much to keep his fluid down.  That's always been an issue and he drinks A LOT, partly because he know's it manageable with the schedule we have.

Your blood flow will be much, much lower - Greg runs at 250, he was running at 350 when dialyzing shorter daytime sessions.  We rarely see a venous or arterial pressure over 100.  He suffers from tingling in his hands at higher pump speeds, so the slower and longer is working well for that.

You wanted to practice on your own arm?  Wow, that's brave.  We are absolutely not "allowed" to use sharps at home, they're not even on the supply list. 

[boswife]

It gives me a chuckle when you speak of needing to 'know' why things and how things work type stuff.  I think i studied my brains out because i couldnt just go home and memorize the steps, (though!  i followed the dang book step by step for months i think.lol) i had to understand them.  heres how i learned to stick the hubs..  http://ihatedialysis.com/forum/index.php?topic=21176.0  You can scroll down and see the ARM i made to help me out.  I had to get over my needle phobia as well so i had double whammy...  This 'arm' was pretty neat cause you can cover with tape,(feels a bit like skin) so you cant really see the tube under it, and actually if you 'infultrate it, it does leak so you learn that too.  worked for me 

[big777bill]

"It's lovely that instead of visiting them once a month and our Neph once a month, etc, we go there once a month to what we call 'Clinic Day' and our Neph meets us there. So, our entire kidney team discusses what's going on. The dietician, the social worker, the nurse who has our case, the Neph, and US."
 
  My instructor told us that's exactly what they do is have a "clinic day". Pretty much the same thing as you described. How much longer before you start at home? I'll be coming home to start next Wed. or Thurs. I'll be ready to get it home. I still have to bring the pureflow and the cycler home yet. They have me running at 500 BFR and I feel great. The thing I have a problem with most is cramping in my left hand. My fistula is in my left arm so I think that has a lot to do with it. A quick bolus of 100 ml saline and I'm good to go. I'm still using a catheter so there is no problem with arterial blood flow. I will have to go back for a few days once my fistula is ready to have the RN start the buttonholes. Wishing you continued success with your training. God Bless, Bill

[lmunchkin]

Wow, a BFR of 500.  This is okay with your Neph, Bill!  I know the nurse that trained us wanted to run a higher BFR, but Neph told then not over 400.  It is risky for the heart & fistula.  With BFR of 500, over time, something will possibly go wrong. I generally run 350 to 380, not the higher numbers anymore.  Granted, he is on the machine 15 to 30 min. longer, but I do not mind.  He is in bed anyway and goes right to sleep when I pull him off.  It is nightime when its all over. Glad to hear you and Patty will be home soon.  I knew you guys wouldnt take long to catch on!

Jen, Im so glad you are getting the hang of this. I got to laugh, cause I think back to when I was in training, and you seem alot like me.  We had people come in too, while we were trained, full of questions! It was kinda neat.

God Bless,
lmunchkin
 

[big777bill]

 They are the neph's orders. I believe it is so high because of using a catheter instead of the fistula. When my fistula is ready it will come down, I'm sure.

[bevvy5]

500 seems really high, I guess they need it that high for clearance.  But we're running at 250 at home using Greg's fistula.  It might go up to 300 but our nurse has said the protocols are that it not go higher than that for a fistula.

Running that high, I'm not surprised you're getting some cramping in your hand.  Greg gets tingling in his fingers after dialysis, especially his left which is his fistula.  It's much better since we're running at 250 rather than 350 - 375 that we were doing during training using his permcath.

[justjen321]

@bevvy - I'm hoping to get closer to what you two are doing. I'd like him to have less fluid restrictions. I'm excited for the first time we can drop the BFR super low and just let him have the low, slow version. Does your hubby have to take binders still, or is the slower dialysis doing it for him? I did indeed want to practice on my own arm. If I infiltrate his, well, that's a pain. Mine, it's just nothing major. Still getting the veto on that, though.

@boswife - That's kinda how I was practicing at Wellbound! Their arm has moleskin over the tube, but the idea is very similar. Kudos to you!

@big777bill - Yay on graduating soon! We will likely be there all through next week at the LEAST, because we are still working on buttonholes. His arterial took a blunt today (WOOT!) but his venous is still tricky. She basically has to shoot STRAIGHT down to get to it.   And I can tell you from our PD experience that's -exactly- how Clinic Day works. I love, love LOVE it. The gangs all there, ALL the questions you need answered are answered, and there's a good brain trust there if there's a problem that needs addressed. What I love the MOST about it is that they are aware that while they all have many, many patients, I only have ONE. My input, and hubbys input, is very valuable to them.

[justjen321]

Days 10 & 11
Were both very good. Little technical difficulties, but those are actually GOOD at this point, because I get to learn how to deal with them in reality, rather than in theory.

We went in a little early today (Day 11) because the nurse who has been working on the buttonhole for his venous had an appointment, and we all wanted her to stick it. Which she did, perfectly. Although the damn needle goes STRAIGHT down. We were able to use a blunt in his arterial today! YAY! Now the venous, and we could come hoooooome.

We went over alarms and the like, but for the most part honestly, we just were there doing his dialysis instead of at home. Still love having back up, but I'm less afraid of the machine, and better at not getting too jumpy when it dings at me. We had odd '8' alarms today and yesterday both, that left us all scratching our heads. (For those who aren't familiar with NxStage, an '8' is yellow, and essentially means 'Hey, I've checked this out, and everything is going juuuuuuust fine.' It also doesn't typically make NOISE.) Our '8' is, from time to time, beeping at me.

I even got a '5' alarm, remembered what it was, and remembered what to DO about it. Magically, I knew to mute it, and to raise his dialysate because we were no longer pulling fluid.

We've taken off exactly 10 Kilos since we switched from PD to Hemo. I'm gonna call that another sign that this will be a better modality for us.

Hubby was once again a trooper. He even dozed quite a bit on and off during treatment, although he and I both worried he'd flinch his arm in his sleep, and we do still have that dratted venous sharp in. I played with the blunt a little today, because they still LOOK sharp, but it wouldn't pierce my glove with a healthy dose of pressure, so that's reassuring.

And now, for the weekend off.

[bevvy5]

You are doing so well.  Once you get to blunts, it's pretty much impossible to infiltrate, so once you're home, no worries.  Or at least that's what we were told.

Greg has been off binders for a while now, since we started doing extra hemo at home, even before he went to nocturnal.  So nice because dairy was the hardest thing for him to give up and he wouldn't give it up and was itching all the time.  Now, no more worries with that.

His weight dropped from 135 kilos when he ended PD to 121 Kilos, and has nudged up to 122.5 as he is eating much better since his urea levels are better - food tastes normal to him.

He goes for his blood work Monday after four weeks of solid nocturnal - we are anxious to see the results and what happens at clinic on the 3rd of April.

Have a good weekend.  Try to not think about alarms and stuff - you really can wear yourself out.

[justjen321]

@bevvy5 - I'm so glad to hear that he's been off binders. That'll be an exciting thing around here if we manage it.

We started our training three weeks ago, although we only trained M-W each of the first two, with fits and starts on those days, so we've had five really good days in a row. The weight is dropping off hubby wonderfully. We've taken off a little over 10 Kilos in just that short amount of time, and are still searching for a dry weight. I think we are in the vicinity, but it's good to see his legs thin and normal.

I'm working on the having a good weekend. I've started setting up my supply area, which is actually soothing for me, because I'll know that everything has it's place and is easily accessible to me.

[lmunchkin]

This is "Music to My  Ears" guys!  You are seeing the benefits of this NxStage!  I wish it was offered to us in 2004.  We would have gone with it!

Jen, he will still have to take binders, but maybe not as much.  Everything you eat and drink has phos. so just totally dropping them, may not be a good idea.  But I know since NxStage, over time his phos. levels dropped, and like Bevy, he doesnt take nearly as many!  And we do short daily in the evenings!

I just love to see people take a "Real" interest in their care and do it at home!  This is Wonderful! And you guys are great for taking this vital step in the Right direction!   

God Bless,
lmunchkin
 

[justjen321]

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.

[bevvy5]

There is nothing like seeing the flashback when you're first needling.  It's still a relief although it's becoming less of a stress every day for us.  Not quite same old same old but at least I'm not thinking about when I get up in the morning "Have to cannulate tonight, wonder how it will go."  And it really does get easier as the buttonholes develop.  I just imagine that pierced ear type track, the needle heading through, coming up against the vessel and it's in.  It's to a point where you can feel it, where there's no resistance then some resistance then that glorious flashback and you're good.

I still rely on the flip book but it's more just a quick check, done this, this and this.  We use a "full size" type machine here in Canada so if you screw up a step, it's a major hassle to figure out how to get things back on track.

[justjen321]

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.

[big777bill]

 Jen we got our first shipment from NxStage yesterday. The grand total came to 82 boxes with 75 being dialysate. I took another water sample and sent it off and don't you know it passed this time so we can use Pure-Flow. I'm gonna use up the majority of the bags before I go to pick up the pure-flow.  The only thing that worries me about using pure-flow is what you guys experienced. I do not want to wake up to a wet living room carpet. I haven't started using my fistula yet but the Dr says  it's ready to go. Next week I'll see when the RN can start the buttonholes. I can't wait to get the catheter out. It worries me to death thinking about the infection possibilities. Not to mention the no shower thing.  Wishing you smooth sailing, Bill