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

[justjen321]

So we've just come back from our first cruise on PD (Success! Although hand carrying ALLLLL hubby's supplies was... interesting) and tomorrow we start home hemo training with the end goal being nocturnal.

I'm told we'll likely be at Wellbound for three weeks, five days a week. Our nursing team says that's the shortest training time allowable, so we'll have to do at least three weeks. They feel I'd (It's me who does all the dialysis work) be ready more quickly, but frankly, I'm okay with having extra time, even if I just do it ALL soon and they just watch and cover me. Plus, then my first bloodbath can be there. Heh.

I've spent some time today scanning the boards here on the look out for pertinent questions I want to ask. I've been doing that for a few months, so thank you y'all, I feel pretty prepared, and our team is stellar, so I have no concerns at all about getting as much information as I possibly can to prepare myself.

So really, this post isn't overly useful, except to say ... send learning, cleaning thoughts our way!

Jen

[Traveller1947]

 Good luck to you and hubby, jen!  Sending good thoughts your way!

[amanda100wilson]

Lucky you to be with Wellbound, one of the more progressive dialysis companies.

[justjen321]

@Traveller1947 - Thank you.

@amanda100wilson - We do feel lucky. I loved them from the moment I left hubby doing in center dialysis (Fresenius) and went over to start talking about home training. Instantly, I felt like we were in control of his health, and they were the team standing behind us. ALL of them, from soup to nuts. They each check in with us when we go to clinic, we see the whole kit and caboodle. I hope that Wellbound becomes more and more of an option for all dialysis patients because they have a fantastic, no nonsense, common sense, patient focused approach that is a true blessing to their patients.

We drive almost an hour to get to Wellbound, and I'd drive tons more. Anyone in the near vicinity of Lafayette, Indiana, go there. Trust me. I'm picky, and exacting when it comes to my husbands medical care, and they are right there with me.

Jen

[willowtreewren]

 

That's great, Jen!

Congrats!

[lmunchkin]

GOOD FOR YOU!  GLAD TO HEAR!

lmunchkin
 

[boswife]

wow,,, you are GOOD!  it's super neat seeing someone so confident right at the get go and already on a cruze... so happy for ya!  keep intouch on your training,, I sure wish i felt so good with my trainer    There was a language barrier to start with, and culture differences was kinda interfering at times,,, I question everything and they just wanted me to listen and do....  But we got it and now were all good

[justjen321]

@boswife - Thank you. I think the confidence comes from Wellbound. They make me believe I'm a renal nurse!

Thanks folks, for all the support!!

Below is the short post on our Day 1.


So Day 1 wasn't nearly as useful as I would have liked.

Johns BP plummeted all nasty like the moment the machine started whirring, and we fought it for awhile before calling it quits for the day. So, he got about 50 minutes of dialysis. We were all comfortable with knocking off that way since we can still easily do some PD tonight. We won't run on the cycler, because that's probably partly why his BP was so wonky today, but really, when we got a reading of 65/30, it seemed time to say, 'Not Today'.

His blood pressure meds are being adjusted, so we shall hope for more success tomorrow.

For now, I can tell you that damn machine intimidated me. Today was not a day of learning about all it's pieces and parts, so our nurses were sorta sharing bits and pieces here and there, and I felt a little lost in the whirl. I know that'll go away, cause they are extremely thorough, I have a big ole book, and I'm a good learner once I get my hands on things. But damn. There are eleventy trillion tubes. For serious.

I'm also thrilled to announce that his fistula rocks. We used it last month to do his iron, because that's how we decided to see if the bugger worked, and by golly, it sure does. Didn't seem tooooo painful for him and our BEST NEEDLE NURSE EVER banged em both in first try, like butter. (So there, doctor who said he'd have to have another surgery to lift the veins).  We also have Emla cream for tomorrow, and the buttonholes are a work in progress. I'm tickled to death at the idea of moving to blunt needles, tickled, I tell ya.

Best yet, our nurses at Wellbound 'get me'. They teach me in the way that I learn. I often will have really random questions pop up, and they are always patient and answer em, even though they have absolutely nothing to do with whatever task we happen to be working on. Wellbound rocks, and I highly encourage ANYONE who wants to do home dialysis to go there, fast. Run, don't walk. Our unit is just the bomb. They literally put us back in control of our lives when failed beans sent it spiraling out of our control.

And so, tomorrow begins at the god awful hour of 8:30am.

[chook]

Better luck for your next run. Jen, you sound so determined to be on top of all this that I find it admirable.

[lmunchkin]

Awe Jen, that is just great!  It always helps to have a good center behind you!  They sound very supportive and they should be.  You hang in there, dear.  You will get this in no time!

God Bless & keep us posted. We are here if you need us!
lmunchkin
 

[rocker]

Heh.

So many people ask me if I'm totally intimidated by the machine.  So scary!

I have a degree in engineering.  I love the machine that goes ping.  The machine that has all the red hydraulic fluid in it, though.....that one scares me!

But that's how I cope.  All that red stuff running through the tubes?  Hydraulic fluid.  Every good machine needs it.  If it starts to leak, figure out where it's leaking from and fix it.  No biggie.

As long as I can keep everything in mechanical terms, I'm good.

  - rocker

[chook]

I like that analogy, Rocker. Will keep that in mind in case I need it in the future.

[bevvy5]

Also sending good thoughts your way.  Hubby just started in home hemo in October, training was through to mid December - some breaks as our nurse was away, etc.  Then back for buttonhole establishment and cannulation training for 11 days in February.  Started with the blunts at home last week!!  I do his cannulation and was pretty nervous.  Greg, thankfully, was steady as a rock and very encouraging.  Still a bit stressful but it defintely gets easier every time.

Honestly, it was overwhelming at times but once the switch clicked in my head that I need to woman up, learn it and get my act together, things ticked along fine.  You're miles ahead of where I was after a day.  And the benefit is that Greg is feeling so much better even now, and once we ramp up to whatever our nocturnal schedule will be, it should get better and better.

We also had an excellent training nurse and a full team that is very holistic and patient oriented.

Keep up the great work.   

[amanda100wilson]

I had low bp issues when I started HD while still doing PD.  I used to have to make sure that I used  lower strength bags for PD so that less fluid was taken off so that there was some there for HD to take off.  Saying that, the machine can run at a zero UF so that it just does blood cleaning.  That way then, there should be no need to do PD  and then there willl be more fluid in the body for the next treatment and hopefully then there will not be BP issues on the next run.  Just my thoughts on this.  There are days even now when I either don't pull fluid, for example, I do dialysis laye one night, and the next day do it first thing in the morning, or, if my BP falls, I just alter the settings and stop pulling flyid.

[justjen321]

It's nice to come home after training and read the stories of the rest of you!!

Day 2 was much better.

They hadn't set up the machine yet, so I got to d it this time. It's rather mind boggling to me that I don't have to deal with Alcavis, masks, air flow, etc, but I'm tickled about it.

I feel a little more capable after setting the machine up, although I -know- my OCD triggers are gonna fire off ALL the time with so many tubes. I still don't fully grasp the cycle of WHY I'm connecting what tubes to what, but I think that will come with time. I did it with no issues, and that, for me, was heartening.

We got through lots of the book, and while the info is overwhelming in it's vastness, I remember feeling that way with the PD cycler too, so I'm just gonna be patient and move right along.

I did not cannulate him,cause well, it's Day 2, and Super Needle Nurse is creating buttonholes. I did, however, pull his needles myself, with no blood spatter! Yay me! Super Needle Nurse once again slid em in like buttah!

I had a brief moment of 'click' today while we were working with the buttons of the machine. I'm comfortable now in documenting things each half hour, but I wasn't really grasping the numbers on the front panel of the machine until it occurred to me that Red= Blood, Yellow = Pee, and well, if we could dye the dialysate green, I'd just be good to go, now wouldn't I? It -is- almost Saint Patricks Day. I think I shall call NxStage with a customer suggestion.

Sadly, the chairs at Wellbound aren't terribly comfortable for a big ole guy, so at one point, we popped some headphones and music in for Hubby and went on without him. His vision isn't good enough to allow him to do most of these things anyhow.

I'm oddly sad to be losing our Baxter delivery guy. He was SO good, and I know from my nurses and from IHD (ihatedialysis.com) that NxStage isn't dedicated carriers, and it typically isn't so great. But, my nurse took me today to show me what our supplies will be, and I will NOT miss having SO. Very. Much. Stuff. I was all agog at the idea of this little pallet of stuff!

We'll be running a water line into our bedroom, because frankly, it's not that big a deal, and the ease with which it will allow me to fill the PureFlow will be wonderful. My father and I ran a drain line through my bedroom floor and into my basement for the Cycler, so that's already in place. You can't see it there, but it saved me from lugging those darn buckets!

Now, to begin rethinking how things are set up in the Medical Bay (aka our bedroom) because the NxStage machine and PureFlow will take up more space, and make it less simple to set up his BiPap machine.

We won't be coming straight home to nocturnal, as our nurse thinks (and I agree) that it'd be easier to first do short daily, then move to overnight a few weeks later. I'm okay with that, and if we get home and feel ready sooner, by golly, that's what we'll do.

Booyah for a successful day 2.

[willowtreewren]

Sounds like you are gettin' the hang of it! 

You'll be a pro before you know it.


Aleta

[lmunchkin]

Sounds like you are gettin' the hang of it! 

You'll be a pro before you know it.


Aleta

Absolutely!!!!!

Word of Advise, Jen, on that PureFlow Cabinet, you want to put it on wheels!  Once you get 50 to 60L of dialysate in that puppy, you aint gonna move it.  If you have carpet then platform with wheels will be fine, but if Hardwood or linoleum you want those wheels that lock.

Also, what J & I do during the warmer months is we wheel the cycler out and hang bags to dialysize. We got those drain line extensions and run it off into our flower beds or just in the ground.  Talk about fertilizing!

How is Hubby feeling? Do you think he is going to like this too!

You are doing great Jen, and you will soon be so glad you went this route.

Cant wait to hear bout day 3!!!!  Good Job, my friend!
lmunchkin
 

[justjen321]

@lmunchkin - You know, I saw pictures of a guy dialyzing by a pool once, and I thought, 'How in the HELL did he manage that?!'. But, we were doing PD then, when you get all manner of jumpy about things like air flow and such.

I think he's going to like it, but in the early phases, I think it's reminding him a little of being in center, and of course, that was early in his diagnosis, so... I think he is bringing some of that back. Personally, I think once we get training done, and a few weeks at home on short daily, then switch to nocturnal, he's gonna love it. And since he needs to lose weight for many reasons, I'm positive that not taking in all the calories from PD fluid will be a big WIN!

[MooseMom]

Oh, this is great!  I love hearing about your training sessions, and I am practically certain that you and John will be pros in the very near future.  I so admire anyone who takes their dialysis into their own hands; it gives you so much more control over your life, surely.

Thanks so much for sharing this experience.  I am planning to train for home hemo once I start dialysis, so I am always grateful to anyone who takes the time and makes the effort to talk about training.  It seems so overwhelming!  But as you've probably learned, it's a good idea to just take each day, and each lesson, one step at a time.  And it is all so worth it if it results in better health!

[bevvy5]

Definitely you are doing well.  I was like you, took the manual home, studied it, was able to set up the machine on day three, but didn't really understand how it all worked until about the third week.  But it will just start to click in and it makes it much easier when that happens.  You understand WHY you have to set it up this way and WHAT the various things are doing.  Now, while I have the set up manual out, I really just do the set up and run through it quickly at one or two points through the process.  It's totally logical how the lines and tubes run to make up the circuit.

Definitely agree about doing some runs during the day at home too.  We did that and when we had our first middle of the night thing - basically the water treatment plant packed it in - alarms ringing, etc. etc., it wasn't nearly as intimidating as if it had been our first or second run at home.  And you've got a feel for where to keep your supplies and stuff - definitely want it as easy as possible after you scrape yourself off the ceiling when the alarms start at 2:00 a.m.  Thankfully that was a one off and both of us sleep pretty well.

We're still quite tense about the cannulation part.  Hubby is great and we're down to about 10 to 15 minutes to get the needles in, get him taped up six ways to Sunday and on.  Last night was a bit slower on the venous one, but it's just patience and practice, not getting tense and thinking about the feel of the buttonhole.  His perm cath was left in as a "backup" although we have both agreed that it's basically a no go zone and we haven't been tempted at all.  And every time we're successfull with the needles, it relieves a bit of the stress for the next time.

You are off to a flying start.  Can't wait to read the continuing saga.

[justjen321]

Yeah. We did. Infiltrate, that is.

I set the machine up again this morning with LOTS of supervision from Ruth (Our rockin Nurse) and Super Needle Nurse popped right into his fistula again, ever vigilant of creating lovely buttonholes. I also learned how to draw his labs, and play with the centrifuge we'll be bringing home. Learned to tape the post tube to his machine so I won't forget to draw that one too before I pull his needles.

Hah. I just noticed the hot pad in the photo. It looks like we were baking while we did dialysis but no. It's for the 'Snap N' Tap' where we work all the air out of the lines because you know, air bubbles in lines going directly to your veins is rarely good for ones health. So the dialyzer (the fake kidney part of this whole shebang) get some good bangin on that hot pad.

So he's dialyzing away....





We went over more book stuff, toyed around with power outages and the like, and went over alarms. (See the serious book learnin' photo below.)





We'd reached the point of just hanging out while he dialyzed when he shifted too much in the chair and BAM, infiltration. So currently, we are working on icing it, and will only be going tomorrow for our regular clinic visit. The chairs there are vinyl (because really, when you are spewing blood sometimes, like we did today, cloth is not a good option.) and he slides in them badly. He was trying to adjust himself, and sadly, adjusted the needle right through the wall of his vein.

Not the worst thing in the world, just kinda icky after having Day 2 be better. I'm an over achiever, and really, I just wanted to finish up the buttonholes, move to blunts, and be all like 'We've never had an infiltration! I'm the best pseudo dialysis nurse EVAH!' But alas, that will never be.

We also talked about respite. Wellbound offers respite, and that bit of information really helped ease my brain. When we were doing Peritoneal, it wasn't a difficult thing to imagine someone could cover for me if I got sick, or had to leave town for some reason. With Hemo, that really just won't be an option. However, you CAN set it up with Wellbound if scheduling allows and they will come out and run him if need be. I always worried about something happening to my mother, or what have you, and it's helpful to know that if I have to go somewhere, I can.

So. I got to learn sort of how to deal with an infiltration, although frankly, at that point, MY learning takes a backseat to the nurses fixing the problem, so I have vague notions. He's got a verra healthy sized lump on his arm, and I'm -hoping- like crazy we can get back into his fistula by Friday.

Now, on to planning the water tap in our bedroom, and how to re-arrange to make the best use of space when we bring home the hulk that is the NxStage machine and it's buddy PureFlow.

Ohhh. Pictures didn't post here. They are, however, on the blog.

[MooseMom]

A lot of people who post about training for NxStage draw comparisons to learning to drive a car.  I think it is an apt analogy.

I don't know if you remember learning to drive, but so many of the lessons were not so much about how to operate the car but, rather, what to do when the unexpected happens.  What to do when the weather is bad, when the roads are unsafe, when another driver is faffing about and not paying attention, when there is an emergency, etc.  Same goes for NxStage.  You first learn how to work the machine, but a lot more of your subsequent training is geared to learning what to do when weirdness occurs.  So while it is surely disappointing that your second session might not have gone as smoothly as the first, that doesn't mean it was a useless exercise. 

You are a very smart and efficient lady, and your husband is lucky to have you on his side!

I'm glad you approached the subject of respite; it's important for caregivers to have peace of mind and to know that their loved one will be able to still have their treatment if you're indisposed.

Thanks for posting the pics on your blog!  Very informative!  Will you take photos of your set up once you get home, please?  I love seeing how others set up their NxStage bits and pieces.

[justjen321]

I'll definitely take a photo of our home set up once we are ... well.. home.

[justjen321]

And we're back in the saddle after four days off from training. We still have a big fat juicy hematoma, but his fistula is doing it's job. His cannulation (Getting the needles inserted) hasn't gone quite as smoothly because of the swelling and such, but all in all, that part has been okay.

What's not okay is that he simply cannot sit in the chair long enough, still enough. We have YET to complete a full 3 hour run. This isn't the worst thing in the world, because we've been mixing in some PD as well, but we need to get his sessions during training longer, so I get the learnin' time I'm supposed to have to become successful as a Hemo Nurse. So, today, we tried doing it in his wheelchair. Fail. Tomorrow, we are taking a heavy duty camping cot to try having him lie down while he dialyzes. Keeping still is so important when you are using sharp needles, but if you have to fidget, well. Can you say infiltration? So, to try to keep from doing it again, we are changing things up.

Yesterday, our machine came in to the clinic. They loaded it all up in the back of our truck, and when I got it home, my Dad and I brought it in, and worked on setting it up. Below is a photo. This isn't the complete set up just yet.



I drive a huge Nissan Pathfinder, and the boxes -barely- fit. Barely. And it wasn't ALL the boxes. (I learned this today when Ruth brought me a whole other stack of boxes.)

What you see above is actually more than one machine. In days past, home hemo dialysis patients had to hang big bags of saline fluid to use, because you need high quality water. Now, the big base you see above makes it for us. It's called the PureFlow Pro SL, and you mix your saline in that in bags they provide. Saves lots and lots of lifting, for which I am extremely grateful. On top is the 'cycler' or NxStage System One. (Called a cycler because it cycles your blood through.)

I couldn't figure out all the connections (without all the pieces and parts, that makes sense, yes?) so today, I promised myself I'd take a photo of the machine we use at Wellbound. Or rather, the back.



So tonight, when I go to finish setting up ours, I'll have a roadmap! Yay me!

Anyhow, back to training. I set the machine up myself, with guidance from Ruth. It's important to me at this stage that I do as MUCH as humanly possible, with them looking over my shoulder and thumping me on the head from time to time when I ask silly questions repeatedly. (They don't, but they probably should. I'd likely remember better.)

I decided while we waited for the machine to prime (this part takes 15 minutes of non working time) I would set up the stuff Carol would need to stick hubby. I wasn't really sure I remembered it all, but this is what I gathered whilst the ladies were helping a patient in the next room.



It sort of sounds silly, but I was pretty thrilled that I was able to do it. For me, it's important when I am learning something that I don't just learn it by rote. I need to understand WHY I am doing what I am doing, and WHAT I need things FOR. Today, I was able to think through the entire process of cannulation, and gather the right items. Score!

When it was time to start hooking tubes up, I asked Ruth to simply watch me, and talk to me about them. I didn't want to know 'Hook the blue to the blue'. I wanted to know 'Hook the blue to the blue, because that's the venous line and it'll take the blood in to clean it.' And bless her, that's exactly what she did. I asked endless questions, and I may even remember an answer or two.

His pressures stayed great during todays session, until his heart rate jumped to 151. BP was a little low, so we gave a saline bolus and the world was again right. (Saline Bolus: Small infusion of saline given into the bloodstream to help raise his blood pressure. See, Mercedes, I do listen to you!)

We rolled along with the book learnin' until John was just too uncomfortable in the chair to be still, and unhooked him. I did it mostly myself today, until my fingers get used to holding and pulling and such all at the same time. I have no issues at all pulling one needle, but pulling them both is a bit more difficult. When we pull his needles, we have to hold a gauze pad on the hole for ten full minutes to allow both the outside and inside to form clots. (Because really, no one wants to have a Carrie moment if they don't have to.) The needles also have a guard on them, that you slide on as you slide the needle out to keep from sticking yourself, and it just adds a bit of dexterity to the whole thing.

I asked far more specific questions about the numbers lights and bells and whistles today, because again, I don't just want to know what to do for a certain alarm, I want to understand WHY I am doing it.

John and I are working hard at being good to one another. We find ourselves growing frustrated with each other through this process, and I think it's less about either of us doing anything wrong, and more with each of us struggling to get through this. For him, he feels like a burden, and helpless to not be a burden. He feels like he lets me down when he can't sit still long enough. For me, I don't learn from books as well as I learn from DOING things, so when it's time for book learnin', any distractions cause me to completely lose my train of thought. So I don't seem terribly patient when he needs something, because I really want to make sure that I get this right, and I feel sometimes like it's too much to take in. I felt the same way when we learned PD, and the PD cycler, so I -know- I can do this, and I KNOW they won't send me home if I'm incompetent, it's just a matter of patience and time. So we talk about these things driving home, and so far, we're doin' okay. (Although I tease him a LOT about 'hey, one little air bubble buddy. Just ONE!') Probably morbid humor, but it's who we are.

Tonight, we'll be doing some of NxStage's online training, and taking some tests. Big fun! Grab some popcorn.

[lmunchkin]

John and I are working hard at being good to one another. We find ourselves growing frustrated with each other through this process, and I think it's less about either of us doing anything wrong, and more with each of us struggling to get through this. For him, he feels like a burden, and helpless to not be a burden. He feels like he lets me down when he can't sit still long enough. For me, I don't learn from books as well as I learn from DOING things, so when it's time for book learnin', any distractions cause me to completely lose my train of thought. So I don't seem terribly patient when he needs something, because I really want to make sure that I get this right, and I feel sometimes like it's too much to take in. I felt the same way when we learned PD, and the PD cycler, so I -know- I can do this, and I KNOW they won't send me home if I'm incompetent, it's just a matter of patience and time. So we talk about these things driving home, and so far, we're doin' okay. (Although I tease him a LOT about 'hey, one little air bubble buddy. Just ONE!') Probably morbid humor, but it's who we are.

Boy does this not sound all to familiar.  I like the bubble buddy!  I had to chuckle at that!  Once you guys get home and settled a bit, it should be fine.  You are still in the "Terrified" mode. Like you, I learned PD first, though hemo is different and harder to learn, you will still get this done Jen. 

I love reading your experiences.  It is not so much that it is hard to learn as it is so much to do!!
You doing great, Jen!!!!

God Bless,
lmunchkin