I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Nocturnal => Topic started by: justjen321 on March 04, 2012, 09:02:45 AM
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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
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Good luck to you and hubby, jen! Sending good thoughts your way!
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Lucky you to be with Wellbound, one of the more progressive dialysis companies.
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@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
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:2thumbsup; :2thumbsup; :2thumbsup;
That's great, Jen!
Congrats!
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GOOD FOR YOU! GLAD TO HEAR!
lmunchkin
:kickstart;
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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 :)
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@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.
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Better luck for your next run. Jen, you sound so determined to be on top of all this that I find it admirable.
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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
:kickstart;
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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
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I like that analogy, Rocker. Will keep that in mind in case I need it in the future.
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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.
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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.
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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.
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Sounds like you are gettin' the hang of it! :2thumbsup;
You'll be a pro before you know it.
Aleta
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Sounds like you are gettin' the hang of it! :2thumbsup;
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
:kickstart;
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@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!
:)
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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!
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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.
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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.
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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.
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I'll definitely take a photo of our home set up once we are ... well.. home. :)
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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.
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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 :kickstart;
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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.
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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.
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Great to read your story, Jen. Keep up the sharing . . . and the learning :)
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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.
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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.. :2thumbsup;
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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 !!
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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 :kickstart;
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The blow ups is one reason we did not go NX stage machine at home. I am not sure WE would survive it.
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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.
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@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. :)
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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.
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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 ;D
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"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
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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
:kickstart;
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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.
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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.
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@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.
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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. :)
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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.
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@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. :)
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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! :bandance; :cheer: :yahoo;
God Bless,
lmunchkin
:kickstart;
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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.
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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.
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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. :)
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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
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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
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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
:kickstart;
P.S. J. has no problems with sharps! He can move, sleep or whatever, but I tape them very well, too!
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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.
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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.
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@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.
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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!
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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!
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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
:kickstart;
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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. :)
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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 :pray;
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You'll do fine, Bill! Just relax.
God Bless,
lmunchkin
:kickstart;
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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!!
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@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. :)
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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
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sorry to hear that, Bill. any idea when they are going to try again?
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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.
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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 :banghead; 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 :)
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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.