Home Hemo - Nocturnal Questions

[justjen321]

Hey kids!

My husband and I will be training for home hemo in the next month or so, and I'm reading everything I can get my hands on, but have a few questions that experienced users can probably easily answer. I know we will be using a NxStage, but have no idea if it will be bags or PureFlow yet. He will be using a left upper arm fistula, and we are hoping like crazy to establish buttonholes during training. Currently, we do PD with a Baxter cycler. Anywhoo. The questions:

Our Baxter delivery guy is fantastic. He brings everything, stacks it all and rotates it all. Will whatever company delivers our new supplies do that as well?

Hubby is wondering how you sleep without moving your arm too much. (He has in center experience, and says he had to stay pretty still, although that was also in an IJ chest cath)

I've seen pictures of people doing it outside, on the beach, etc. I'm wondering how that can be, as we would nevah have been allowed to do PD connection outside.

Jen

[Adam_W]

Usually the delivery person will put your boxes where you want them. I've never done nocturnal, but I don't have any trouble as far as movement goes, and I have a left upper arm graft. I've dialyzed outside twice on my NxStage, and I never had any problems. Some people have dialyzed in the woods or on the beach using a gasoline generator to power their machine! Infection isn't quite as big a risk with hemo as it is with PD, but you still have to be careful. Hope this helps.

[lmunchkin]

May I ask why the change from PD to HD? Is PD not working for him?  Just wondering.

First, your Nxstage supplies will be considerably less.  My Nxstage is delivered by couriers and are left on my front door.  I leave a dolly (converts to a cart) out there so when they deliver and place on my cart, when I get home from work, I just wheel in my supply room and do my own rotation. Mind you Justjet, these are nowhere near as heavy as the PD boxes.  You will see the difference immediately in your supply room.

Secondlly, my husband is in his bed sitting up while he dialysis's.  I tape his needles so that the chances of them coming out is nil.  It would have to be a deliberate tug to get them out.  That is a good question, cause if one should come out unnoticed, he could bleed to death in literally minutes.  It takes a lot longer to put it back in than it does to let it out. To give blood transfusions takes time, but to bleed to death takes seconds, I believe our very own Doc on IHD said this. (Correct me if Im wrong Hemodoc).  That is why it is so very important to be close to them while D-ing. Especially, when they fall asleep wile doing it, but I have learned by others here, to tape it securely so that the chances of that happening are slim to none. Your NxStage Nurse will train you the proper way to secure those needles.

Third, that is the beauty of this NxStage.  It is very portable.  Travel friendly.  We have taken it with us on one vacation and it worked beautifully!  Now, I would not Dialysis him on the beach, too much sand and no electricity.  Wouldnt want to chance that, but we have wheeled the cycler out on the deck using hanging bags.  We just let it drain in the yard.  That is something you and him can enjoy together, we certainly did.

Fourthly, You can use either Hanging Bags or the Pureflow.  They are just different ways of using Dialysate.  The bags, as you probably know, are Pre-mixed Dialysate that you just hang and connect. They are wonderful, especially in case of something going haywire with whatever!  But I like the convenience of the Pureflow.  You make or mix your own dialysate with tap water.  It generally is made in a huge cabinet that sits on the floor that has a sizable tub in it to make a 2 or 3 day supply.  Once it is made, then you just run a line up to meet your cartlidge line and wayla, that's it.  Now you have a few more things to learn with the Pureflow because you are makeing the dialysate (which has certain tests) which is okay for cleaning his blood. Im afraid to tell you much more about the testing for fear of discouraging you, but you will learn how & why those tests are necessary.  I personally, like the Pureflow for the ease and it is less room for storage, than the hanging bags!  If you do this, you will see what Im talking about!

J. did PD for 5 years too, but infections stopped that form of modality.  So then we tried this NxStage, and for him, he says he feels better than when he did PD.  It is different for everybody.  No two are alike.

When did you plan on doing this?  I hope that you do, cause it is so much better dialysis than what they get in centers!

lmunchkin

 

[Desert Dancer]

My delivery guy puts everything in the room where I keep my supplies, but that's it. I do believe he offered to arrange everything for me once, way back, but I have a system and keep everything organized myself.

As far as moving, I think that largely depends on the technique you use to secure your lines. I posted a step-by-step pictorial of how I tape my lines not too long ago. I toss and turn, toss and turn, read, crochet and even have mind-blowing sex while on the machine. I never get any alarms.

[kporter85db]

... and even have mind-blowing sex while on the machine. I never get any alarms.

Wow, I need to get me one of these machines!   

[Desert Dancer]

... and even have mind-blowing sex while on the machine. I never get any alarms.

Wow, I need to get me one of these machines!   

I'll tell you what, for a while there it seemed like we were having sex every time I hooked up to the machine. I started teasing Andy about being turned on by my bio-mechanical half!

[MooseMom]

Andy must like to assimilate!

[Desert Dancer]

Andy must like to assimilate!

 

I think that's a safe assumption!

[justjen321]

@AdamW - Thank you!

@lmunchkin - It's 'working' per se (although we ALWAYS have to use a large bag of red in our setup as he doesn't take off fluid well without it), however, we want to switch for two reasons. The first, and most important being that my husband is diabetic, and weighs 330 lbs. He -has- to drop 30 for a transplant (he accrues time, but wouldn't be able to accept a kidney right now). The PD dialysate gives him a rather large amount of calories per day, which makes the fight harder. Add in the fact that right now, he has a wound on his foot we are healing up which has forced him into a wheelchair till it heals, and losing weight is an extreme struggle. The second, from ALL that I can tell, Home Nocturnal Hemo is simply the platinum dialysis, and I want what's best for him. Third - He HATES the PD tube in his belly, and wants to get into a hot tub someday.

I'm glad to hear the supplies should be less. For some reason, I thought more, and I was already in there looking and plotting on how to get more space in there.

We will likely begin training in February. We have 3 kids, two of whom are in college, and they will be home soon. We didn't want to spend a healthy portion of every weekday training while we had them here. Plus, at the end of Feb, we go on our first cruise since ESRD, and I'd personally prefer to be using a method I know super well, versus hemo, with no support right out of the gate. With PD, I feel very confident in handling glitches or problems. With hemo, I'll need time to work into that.

Please, don't EVER feel like you will overwhelm me with information. I simply cannot possibly get enough.

@Desert Dancer - While I don't think the crocheting will interest him much, I'm pretty positive the mind blowing sex will.  

Jen

[lmunchkin]

Thanks JJ, cause the last thing I want to do is Discourage anyone!  I also know about the Diabetic side of ESRD.  And the number one thing with Diabetics is to keep an eye on their feet. As you see by my profile, we were fighting gangerine in his feet all the time.  PD is definately a problem for the diabetic due to the glucose (Dextrose).  So Nxstage would probably be a better fit for him too.

As far as moving, I think that largely depends on the technique you use to secure your lines. I posted a step-by-step pictorial of how I tape my lines not too long ago. I toss and turn, toss and turn, read, crochet and even have mind-blowing sex while on the machine. I never get any alarms.

JJ, this is exactly what I was referring to about others on this site having helped give ideas on taping up. DD does Nocturnal, but her taping techniques are excellent.  We do regular D. 3-3.30hrs each session, so I got ideas from her pictorial, and added a few more tape.  You should read her post on this!

I understand getting things out of the way before starting a new adventure. Smart & Wise on your part!

lmunchkin
 

[mcclane]

i don't have a nxstage, so I can't comment on the delivery part.

however, with buttonhole, i move around quite abit, and in most cases it runs fine, sometimes the needle may go up against the vein causing blood restriction (machine will alarm).

To secure the line, I use the tourniquet the hospital gave me, I fasten it around my wrist with the tube underneath.  at the needle insertion point, i use a steri strip to fasten the butterfly portion of the needle to myself.  I used tape initially to secure the tubing to my forearm, but it didn't work at all, the tubing gets too heavy for the tape.

[amanda100wilson]

If you use bags and not Pureflow, you will have more boxes with Nx Stage, not less as someone else said.  I am currently using bags and have just had my first delivery.  60 cases of dialysis fluid (2 cases per treatment rather than one for PD). In addition, no big cassette box like PD but several small ones.  Good luck.  It has transformed how I feel and I have lost quite a few pounds in fluid weight.  It is possible tham some of your husband's weight may be due to fluid trapped in his tissues

[justjen321]

@lmunchkin - I just went and looked at your profile, and I'm sorry to see the struggle with gangrene. I learned the hard way to be focused on his feet when we had a couple of sores get really deep because they were buried under callouses and I couldn't see them. Those took TWO years to heal, and we were incredibly fortunate to not have infection issues. He was also living with un-diagnosed ESRD, which can't have helped him heal. Shortly after diagnoses, he got a huge sore on his heel, which caused me a great deal of stress, thinking that we were looking at several years to heal. The podiatrist put him on 'essential movements only' walking, but the foot was slooooooow. A physical therapist came out for a balance issue, and strongly urged him into a wheelchair while this healed. I am not STUNNED when I change his dressing at how fast it's healing. At the rate it's healing now, it's likely a 3-4 month heal, which is lightening fast for him. 

Got any advice from your considerable learning on anything I should be doing that I might not be?

@mcclane - Thank you. We have to pop into our Wellbound unit tomorrow for some IV iron, and I plan to pepper my nurse with questions. I'm going to ask her about the method you found.

@amanda100wilson - I'm glad to hear it's improved your quality of life. I'm hoping for that for my husband.

Jen

[The Noob]

this is one month of supplies and a few extra boxes of "sundries". we use bags, 5-6 treatments a week, 5 bags each time. told we can't use pureflow. there is a centrifuge on the shelf there. use that 3 times a month maybe. no biggie. plug in, turn on, spin what you need to 15 mins., put back on shelf.
hope this doesn't scare you off. HH in my opinion is easier than PD. but thats just my humble opinion.

[justjen321]

Hey there, The Noob,

The supplies don't look too bad. Two questions:

Why can't you use PureFlow?

And why is HH easier than PD for you? Enquiring minds wanna know!

Jen

[The Noob]

bathroom too small. no way to connect it. well water they can work around.

pd was nerve wracking because you had to be so very careful of all the germs. and then you got a big belly of fluid for 4 hours. and we were doing transfers in the day. and when on night cycler, it was 9+ hours, then another tx in the daytime. and i almost think the supplies were more. maybe not, just different.

the machine is great. i have not been impressed with the supplies though. the connectors break, the bags i open sometimes have leaked all out in the box.
our nurse gives us syringes to use that have afety on them and they are akward. sometimes we get a box of syringes with no needle (3cc) that we need to have the needle on.
the little alcohol wipes are miniscule.
the lab tubes have no info on them o it ha to be written on. tiny space, lots of info.
calling fedex is a nightmare most of the time.
the courier who brings the nxstage supplies send 1 person for all this, who wants to bring in 3 boxes at a time, and leave front door open. then slams boxes on floor which breaks bags and we don't find it till later.
this past month got nurse to okay extra $178.00 pmt to have additional person help with delivery. but this is a one time good deal.
the first time i really needed to call nxstage, i was put on hold for 15 mins.
baxter does not bring their part of supplies, they send UPS, who cannot enter your home. so they leave all 9 heavy boxes of saline on the porch.
the machine has some "known" problems, like the spike that goes in the saline bag will sometimes leak air.
the cartridges sometimes do this no matter what you may do.
its alot of trash. there is no trash service out here so we burn it. the dump is 25 mile one way and will not recycle dialysis supplies.
at our last appt they were out of large sharps containers, we were told to improvise our own. we used a coffee can which filled quickly.

now the doc is pushing to get the chest port out, which was just replaced a month ago. the fistula is new and he has not established it high enough so he can bend that arm and use both hands. so he will use the catheter at time to give me a break.

all things considered though, it is much better than in center. 

[justjen321]

@The Noob - I'm sorry to hear of all the delivery issues. I'll have to wait and see how it is out here.

[The Noob]

make sure also that the tubes you get for lab draws are pre-printed. or they will dump them when recieved.
the tubes we get from transplant clinic were not marked, no insturctions, just 2 boxes sent. when i called they said we had to lable tubes ourselves and get vacutainer and needles from clinic. clinic does not want to give these in more than 2-3, so have had to go there and get more. 35 miles each way. stuff like that, you got to be vigilant and catch it.

[boswife]

oh my goodness Noob!! how awful...  We have NONE of those issues.  Over the year, we went through what many went through with some weard lines on the sak's but they have been AMAZING with having corrected it quickly. other than that, i think one other 'issue' and they have been quick to reslove.   Our baxter and nxStage both load everything into the house, The tech support was speady and absolutly increadably helpful... I wouldnt have made it without them..... How could it be so different???  Im amazed!  Im glad you've still made it ...geesh

added
my head isnt in this tonight..... no energy to even read over what i wrote but i think it's kind of 'off' a bit... will hopfully explain or hopfullier..ha.. it made sence in the first place. 

[rocker]

I have to chime in here that everyone's experience is different and we have experienced almost none of these problems in 2.5 years.

well water they can work around.

We have been using the Pureflow with well water for over two years.

the machine is great. i have not been impressed with the supplies though. the connectors break, the bags i open sometimes have leaked all out in the box.
our nurse gives us syringes to use that have afety on them and they are akward. sometimes we get a box of syringes with no needle (3cc) that we need to have the needle on.
the little alcohol wipes are miniscule.
the lab tubes have no info on them o it ha to be written on. tiny space, lots of info.
calling fedex is a nightmare most of the time.
the courier who brings the nxstage supplies send 1 person for all this, who wants to bring in 3 boxes at a time, and leave front door open. then slams boxes on floor which breaks bags and we don't find it till later.
this past month got nurse to okay extra $178.00 pmt to have additional person help with delivery. but this is a one time good deal.
the first time i really needed to call nxstage, i was put on hold for 15 mins.
baxter does not bring their part of supplies, they send UPS, who cannot enter your home. so they leave all 9 heavy boxes of saline on the porch.
the machine has some "known" problems, like the spike that goes in the saline bag will sometimes leak air.
the cartridges sometimes do this no matter what you may do.
its alot of trash. there is no trash service out here so we burn it. the dump is 25 mile one way and will not recycle dialysis supplies.
at our last appt they were out of large sharps containers, we were told to improvise our own. we used a coffee can which filled quickly.

I get a leaky bag maybe...once every six months or so?

The connectors can be fussy, the trick is to check everything as you're opening it.  I often find loose collars on the cartridge, and loose caps on the SAKs.  The key is to check them immediately, and simply tighten down whatever is loose.  I've never seen the tubes actually come apart.

Syringes with safety collars suck, fortunately I've only ever seen that on the 3mls, which we no longer use.

Cannot say anything general about our courier, as it is a different person for literally every delivery.  Never had the same person twice.  But none of the couriers have had a problem with bringing the boxes to the back hallway where I store them.  I do my own rotation.

I drop my Fedexes off, as it's an excuse to go to town. 

I have always gotten answered within seconds for technical issues.  Once or twice they have asked if they can put me on hold.  If the issue is immediate, I say "no" and they continue the call.

I've never seen an air leakage problem with a cartridge, though once in two years I did see a fluid leak!  The leaking fluid was not, however, colored red.

One issue with the Pureflow is that it has a couple of connections that can seem to be connected - but aren't "really".  You get used to checking this.

I'd say I get three treatments to a trash bag.  And only once did we not have a sharps container, I think we used a few Gatorade bottles.

all things considered though, it is much better than in center.

This part, I agree with completely.

[lmunchkin]

Sorry Noob for all the troubles you have had!  Apparently every area is different.  The only problems I ever had were from me not doing somethiing right.  When we first got home, I would get so frustrated that I made things harder on myself and even threatened to put him back incenter because it was just "TOO" much.  Well, Im glad I didnt, cause it started to make sense and therefore alot easier to do.

Now that being said, J had his fistula established already, so I didnt have to wait on that.  He is definately an easy "stick".  But I agree, it is much better than incenter.  They definately get better dialysis and clearance than incenter!  My supplies are about 1/3 of yours, but I do the PureFlow which does not require as much room.

JJ, I think you are doing an excellent job with his feet.  You are so right, it does seem like forever to heal, but know that it takes patience cause they dont get the circulation that you & I get down there.  Without good "blood" flow it is very hard to do.  So he is more or less at the mercy of specialist to help. And there is no guarantee in that either. There is one thing they did that helped quite a bit, but was offered way too late, the HyperBarack Chamber!  It is very expensive, but it made the healing faster. The draw back is, he has to have a certain level of flow in his feet. The number needed exscapes me, but J did not meet those levels.  So the VS put stents in to help the flow, and J barely met the levels required.  They put him in and after about 15 sessions, healthy skin over his wounds.  But as time went on he just developed more sores and so on and so on.  Just ended up losing in the end!  Its sad JJ, really sad to watch, but we tried!

Just continue to be supportive of him and know that you are not alone.  Continue to come here for the support. I did not find this site when he went through all the stuff he went through.  I wish I had, cause I truly believe, he may still have his leg had we found it.  I also truly believe that PD did not help the diabeties part of this disease, but did the kidney part!  Just my opinion.

Hang in there gal and learn everything you can.

God Bless,
lmunchkin
 

[justjen321]

@lmunchkin - Thank you so much for all your info. It's really useful. Believe me, I'm taking in a lot from around here, and it makes me better prepared to ask questions BEFORE I might actually need the answer.

I'm taking in water when we pop into clinic next week. They are going to pre-emptively test it.

Jen

[lmunchkin]

Thats good to hear Jen.  I do want to clarify that PD is a good modality too, but with the diabetes, it is much harder to control.  Hemo is a little more to learn, but for a diabetic it would be much better dialysis than PD. Keeping the BS in check is sooooo important!

Keep us posted,
lmunchkin
 

[The Noob]

he is not diabetic, its not his feet. i am diabetic and it is my feet, spine. there is nothing wrong with him except he needs a kidney.

yes, please do blame the exhausted caregiver. gee i have been strong, caring, supportive to him for 2 years. i have put everything on hold all this time. including seeing my dear sweet grandma who raised me and was my best friend and the only mother i really had. she passed away friday night. i am leaving monday to drive down to the funeral. 900 miles. no money and exhausted but gee i get to go to her funeral. if i hear one more person tell me to stay strong for him, and anything that went wrong must be my fault when i have done nothing but put him first and take care of everything all this time at any cost to myself and my son, i will scream.

better not have too many romantic ideas about home hemo. its work like the rest of it. no one tells you the real truth about it. it can be done but its work.

[justjen321]

Hi there, Noob

I don't think anyone was blaming the caregiver. Merely stating the issues that they had tun into all centered around their own errors.

I think all the chatter about diabetes and feet came from some statements about my husbands diabetes, the effects of PD on it, and some issues we are having with his feet.

I wish you a very safe, uneventful journey tomorrow. I'm sorry you have to make the journey, and my thoughts go out to you.

Jen

he is not diabetic, its not his feet. i am diabetic and it is my feet, spine. there is nothing wrong with him except he needs a kidney.

yes, please do blame the exhausted caregiver. gee i have been strong, caring, supportive to him for 2 years. i have put everything on hold all this time. including seeing my dear sweet grandma who raised me and was my best friend and the only mother i really had. she passed away friday night. i am leaving monday to drive down to the funeral. 900 miles. no money and exhausted but gee i get to go to her funeral. if i hear one more person tell me to stay strong for him, and anything that went wrong must be my fault when i have done nothing but put him first and take care of everything all this time at any cost to myself and my son, i will scream.

better not have too many romantic ideas about home hemo. its work like the rest of it. no one tells you the real truth about it. it can be done but its work.