FINALLY We Started NxStage Training !!

[fearless]

Wow!  Go Hemodoc!

I would like to do longer slower dialysis.  But first I need to get "out there" on home hemo.
i have a lot of questions about it, but hopefully they'll be answered in training. 

I guess, once again, I'll be spending time here to learn about the "right" way to do things! 

For those who are concerned about people defying their clinics: I would just say, if it's me or them, I'm taking me!  And what I've found is that the people who are actually one-on-one with me (nurses, doctors) they actually WANT what's best for me, but they are having to work within a certain paradigm that actually forbids them from changing anything.  However, I've never once been threatened or punished for doing anything that ends up improving my lab readings.  Everybody likes good lab readings!

[Hemodoc]

Most home hemodialysis clinics just continue the American faster and faster way of doing dialysis when patients go through NxStage training. I believe the data does not support this approach. Defying your clinic is not a winning solution in the end since we can't prescribe our own dialysis. We are stuck in this relationship. I have instead tried to work with my team, not in defiance, but in the end they let me do what I want to do anyway.

[lmunchkin]

Most home hemodialysis clinics just continue the American faster and faster way of doing dialysis when patients go through NxStage training. I believe the data does not support this approach. Defying your clinic is not a winning solution in the end since we can't prescribe our own dialysis. We are stuck in this relationship. I have instead tried to work with my team, not in defiance, but in the end they let me do what I want to do anyway.

This is exactly what Im doing Doc!  I have been doing him for so long at home that they allow me to do within their perimeters. We have a very good relationship with Neph and our clinic.  They know that I will do what's best for him! My neph is like yours, she has a clear understanding about High BFR. If I ran J at 450 to 500, I really don't believe his heart could take the pressure.

God Bless,
lmunchkin
 

[Lindia]

chiming in here.
we also put 2cc of heparin in the filter before priming, works great! use the bigger syringe and leave it on there to aspirate the air in filter when the prime is done.



I'm curious about this --  does he also get a heparin bolus - thru his venous needle ? ?   -   Or is this the only heparin used.     And when you say that you put 2cc of heparin in the filter -  do you mean the cartridge ? ?  This is kinda confusing.

[Lindia]

oh - and Noob -- thanks for telling me all this --   every little bit of information helps -  and we will certainly demand the "conscious sedation" as he has those stents changed every 3 months...     

[Lindia]

Hemodoc, how did you arrive at 350?  Was it just trial and error, or had your neph suggested this BFR?

I run 40 L of dialysate, pretty much double the recommended dosage I was advised. 20 L just wasn't anywhere near enough for me. I almost gave up on NxStage. I went to 30L and then came back a month later and asked to go to 40L. Thankfully, my nephrologist understands that more is better.

   

thanks for taking the time to tell me all this Hemodoc  --   when you say that you almost gave up -  what were your symptoms ?   Were you really tired ?    Will we be able to tell from his  bloodwork in a month - how this is working for him ? ?      Hubby still has residual function, so we hardly pull any off.   Today is our 6th day in a row, and we only pulled 0.1.     Thanks again for all your help and insight.     

[amanda100wilson]

Haemodoc, whatheperin bolus do you use?  I generally run at about 400 ,but would like to slow it down.  The other week I did! And I was quite worried about how long the heparin would last.  I know that it's half life isn't that long.

[tyefly]

When I started training with Nxstage  I was told to run at 450 too..... and they wanted  me to use 20L..... run 2.5 hours ......   I question that because when I was in center I was running 350  and was concerned about the speed....they told me that Nxstage was different..... so  I did that  and after about two weeks  I started feeling really bad.....sick agan....like I felt before I started dialysis...... so I talk to my doctor and the clinic and requested that I could do 30 L and run at a slower speed.... Clinic said NO......My doctor said yes..... let try it and see how it works out....   I did give him all kinds of information that I had gather from IHD, Hemodoc, and Bill Peckham to support my request......  I started running 400 and did 30 L for the next two weeks...and I really started to feel much better...... alot better.....when training was done   and I went home   I made another request...I requested that I could run at a slower speed......  and the reason I wanted to was because my pressures were always at the high mark and alarms were always going off......  again  the clinic wanted me to go get a fistualgram  and I did and they told me that there was nothing wrong with my fistula....run at a lower speed....  my doctor supported my request and I slowed my blood flow speed down to 350 or 370 and then my blood pressure were good....no more alarms...... I could move around and do projects and enjoy the 4 hours on dialysis....I felt great...... I am thinking that sometime people are running too fast and not using enough dialysate to get good clearances...... just my thought......

[boswife]

Im going to go back and read the rest of these posts, but just after reading that it 'was' your nxStage team saying that about the 'having to be running at 350 BFR) , im thinking that they want your fistula mature enough to "handle" that speed.  Not necessarly use it once on NxStage, but they want it to be running at that so they know it's mature???    Just what im thinking...

[The Noob]

on the heparin int the filter question: when we first started we got some tips from the pro's. this was one of the best.
what we do is when we open the bag with the cartridge, before its put in the machine, take a 10cc syringe and inject 2 cc heparin into the filter via the little port on the top. for us, this keeps the filter from clooting too much and improves rinseback.

when he puts needles in, each line gets a 2cc heparin into that first before hooking up.

on the longer slower treatment, he will sometimes have the clot issue, so one of us does a 50-100 cc of saline via the white saline clamp line. this usually clears it up.
don't want to give too much heparin as that makes the bleeding take longer to clot when he is done.

oh, last month also, to see Doc, his pth has always run high. i asked about sensipar, so he is on that now.
but in the meantime i had him running 4.5 hrs instead of 3.5.
this was for 5 days prior to the labs we did. it got his phos down to normal. nurse says oh thats from the sensipar..
uh no..he had only had 1 pill 3 hrs before the lab, so i doubt that had anything to do with it.
i believe without doubt it was the longer slower treatment.

[Lindia]

Hi all --   here is my one month at home update.   We are still hanging in, and it is getting easier, most of the time.  I'm not a fan of drawing the bloodwork ---  I made some kinda rookie mistake, and couldn't get the tubes to fill.   Finally got frustrated and used a syringe to pull out some blood.   Talked to the nurse, and got new tubes to try again.   2nd time went better - and now I'm curious to see the results.

I'd like to say we are doing great, but hubby is still having problems with his chronic bladder infections.  They have gotten a lot worse on the daily diaylsis -  maybe its a fluke,  but its really a drag to be putting in all this work and time, and he feels bad almost every day.   He had about 10 days of Cipro, and started feeling better - but the NEXT day after he stopped taking it, he started feeling off again.    He is getting better and better with his buttonholes -  tonite they just popped right in, didn't take more than a minute.    We're running late tonite,  because we took our grandaughter,  Ron's daughter, her hubby, and new baby to see John Carter on Mars --   In IMAX 3-D ---  thought it was fun - and we are enjoying the flexibility of doing NxStage.

[Hemodoc]

Hi all --   here is my one month at home update.   We are still hanging in, and it is getting easier, most of the time.  I'm not a fan of drawing the bloodwork ---  I made some kinda rookie mistake, and couldn't get the tubes to fill.   Finally got frustrated and used a syringe to pull out some blood.   Talked to the nurse, and got new tubes to try again.   2nd time went better - and now I'm curious to see the results.

I'd like to say we are doing great, but hubby is still having problems with his chronic bladder infections.  They have gotten a lot worse on the daily diaylsis -  maybe its a fluke,  but its really a drag to be putting in all this work and time, and he feels bad almost every day.   He had about 10 days of Cipro, and started feeling better - but the NEXT day after he stopped taking it, he started feeling off again.    He is getting better and better with his buttonholes -  tonite they just popped right in, didn't take more than a minute.    We're running late tonite,  because we took our grandaughter,  Ron's daughter, her hubby, and new baby to see John Carter on Mars --   In IMAX 3-D ---  thought it was fun - and we are enjoying the flexibility of doing NxStage.

I had difficulty getting the tubes to fill one time and found out it was from a clot. I now routinely pull a very small amount of blood into a syringe before hookup and before drawing my blood tubes from the blood line. That sounds like that may have been the problem in your first attempt. You may wish to consider that after discussing it with your medical team. It did work well for me.

By the way, I still hate drawing my labs and have put it off for the last two days, but tomorrow is the day.

[amanda100wilson]

Was it all the tubes?  Someime if the vaccuum has gone from the tube, they won't work.

[lmunchkin]

Was it all the tubes?  Someime if the vaccuum has gone from the tube, they won't work.

This was my thought too, when I read this!  It has happened to me, because the tubes may have gotten old.  I guess they just lose their vaccum.

Linda, Im so glad to hear it is getting easier.  I believe once he gets his bladder issues cleared up, he will begin to feel better.
I too, do not like taking labs.  Its not the drawing of them per sa, but the labeling and packing and shipping, is really what I don/t like to do.

Thanks for updating us on how it is going for you and hubby!  You did it Linda, and you should be proud of yourself. It is not an easy thing to do, starting out, as Im sure others will agree!

God Bless,
lmunchkin

[Lindia]

Well, we are into our third month -   the last couple of weeks have been hard.   He started having cannulation problems, and we went several days without dialysis - and when we would get cannulated, we would then have YELLOW 14 errors.   I have come to hate YELLOW 14 with a passion.   Twice, after long sessions with tech support, I had to rinseback and end treatment more than an hour early.

Our nurse really helped us out, and came to the house 3 days in a row to help him sort out his cannulation problems.  She said he had gotten "off" on his technique.  He was pushing to hard with the blunts, (out of frustration) and making multiple tracks.  And today - NxStage sent a new cycler.   I was suprised and worried that it wouldn't help -  but - so far tonite, there haven't been any YELLOW 14's -- and this cycler sounds so much quieter than the other one.    Our first one was so loud, you had to crank up the TV to hear it --  this one is so much quieter it is kinda strange.

I haven't been handling the stress very well, and it is affecting me and our 9 year old.  Hubby hates in center so much, I feel like I'm between a rock and a hard place a lot of the time, and I hate feeling on edge and on the verge of tears all the time.  I told hubby I would give it 6 months, and I hope it gets better.  Its rather ironic that he would have never heard of NxStage, if I hadn't researched and tried to find a good modality -- a classic case of  --- Be Careful What You Wish For --  you just might get it.

[amanda100wilson]

I am confident that it will get better.  I have been doing NxStage for getting on for six months.  It hasbeen a steep learning curve with some bumps on the way.  I do it completely on my own now with my husband in the background if I need help. As each went on, I took over more and more so that now I am completely self-sufficient.  Would that be an option for you?  May give you some breathing space.  I was much more syressed when my husband was helping me.

[Lindia]

I don't know how much more he can do -  he has kerataconius (sp)  and doesn't see that well.   He does set up the machine, and gets it to 23 - and cannulates himself,  I do everything else.  I was up at 4 this morning - after the sak drained - putting in a new pak - and then up again at 6 or so putting in a new sak. - and then heading into work for 8 hours.   We didn't do dialysis tonight because his bladder infection had gotten a lot worse during the day, and the doctor was going to admit him to the hospital tonite if he wasn't able to urinate and pass some blood clots.   He finally used a large enough catheter and feels better, but now its to late for dialysis, since I have to go to work tomorrow. 

I realize now that if I were retired, things would be a LOT easier.  But I don't think my hubby could have lasted several more years in center, as that place was the pits.   

[Hemodoc]

Well, we are into our third month -   the last couple of weeks have been hard.   He started having cannulation problems, and we went several days without dialysis - and when we would get cannulated, we would then have YELLOW 14 errors.   I have come to hate YELLOW 14 with a passion.   Twice, after long sessions with tech support, I had to rinseback and end treatment more than an hour early.

Our nurse really helped us out, and came to the house 3 days in a row to help him sort out his cannulation problems.  She said he had gotten "off" on his technique.  He was pushing to hard with the blunts, (out of frustration) and making multiple tracks.  And today - NxStage sent a new cycler.   I was suprised and worried that it wouldn't help -  but - so far tonite, there haven't been any YELLOW 14's -- and this cycler sounds so much quieter than the other one.    Our first one was so loud, you had to crank up the TV to hear it --  this one is so much quieter it is kinda strange.

I haven't been handling the stress very well, and it is affecting me and our 9 year old.  Hubby hates in center so much, I feel like I'm between a rock and a hard place a lot of the time, and I hate feeling on edge and on the verge of tears all the time.  I told hubby I would give it 6 months, and I hope it gets better.  Its rather ironic that he would have never heard of NxStage, if I hadn't researched and tried to find a good modality -- a classic case of  --- Be Careful What You Wish For --  you just might get it.

You have to be very gentle with buttonholes. I have used the Touch Cannulation method developed by Stuart Mott for the last two months where you push very gently from the tubing, not the wings of the needles. IT WORKS like you can't believe. You must be gentle. If it seems to stop, pull it out just a bit and then advance very gently observing the right angle and trajectory. Works like a champ every time.  You simply cannot strong arm buttonholes.

In addition, you should be familiar with using sharps on the rare occasions you can't get in with a dull needle. Using the Touch Cannulation method, just be patient with it and it will work.

As far as the alarms, once you learn how to set up the machine, I essentially never get any alarms at all. One thing I spend a lot of time doing is snapping and tapping twice. I snap and tap, then I do my heparin, pick my scabs and then I come back and snap and tap one more time. I always check yellow to yellow, white to white and green to green. If  the needles are placed correctly, thank the Lord, I never have any alarms at all except on very rare occasions. It all goes back to careful and deliberate set up following a check list every time. The machine is finicky, but when set up correctly, it works well.

Keep at it. You may consider going to bags if the Pureflow is causing too much trouble. You need more supply area, but you can set up, take a shower and then do dialysis while it is running to let the machine "cook" for a while. In prime, the air bubbles are generated from the rapid priming action. It takes a while for the bubbles to come together and be able to remove. I also do a rinse of 3 liters to get rid of some of the plastic taste from the warmer.

Lots of ways to approach all of this. Bill Peckham works full time and dialyzes at night. The last time I checked, he uses the bags to set up. With the bags, it takes about 30 minutes to set up and prime. If he is losing sleep to set up the Pureflow machine, that is another option to consider.  I hang 40 L which is more than NxStage recommends and you have to be careful not to tip the machine since it is top heavy in that configuration, but I only did that once if you know what I mean.

There is more than one way to skin a cat.

Keep at it, going in-center is a death sentence in many ways. Home dialysis is a lot of work, but it is manageable once you get used to the system.

Good luck and I hope you are able to get used to the system and get some sleep and good dialysis as well.

God bless,

Peter

[lmunchkin]

I agree with Hemodoc about the buttonholes being a problem, then use the sharps.  You are doing great Linda, just try to relax and don't let this get to you.  I know what you mean about working and setting up for D.  My job is in the busy months now and I am working tues through Sat, 7:30 to close (6:00).

I have also found that the more rushed or frustrated I get, the worse things can be. Just take it slow and easy! 

I agree with you, I don't want him going in-center!  This Nxstage is a commitment, but it is one I don't mind taking!  If I may suggest, you and him get in bed together and you take some brief naps beside him.  You would be surprised at how that helps.  But do tape him down real good, just in case!  I do lay beside him in bed and just rest while watching tv.  Just get relaxed with it.  But if you all are having trouble with the blunts, then please, use the sharps!  He must get the cleaning he needs.

Man, he has been dealing with this bladder infection for awhile, hasn't he?  Are they saying anything about that and what will get rid of it?  Poor guy. That on top of his Dialysis!

Will be praying for him & you!  Hang in there girl! 

God Bless,
lmunchkin

P.S. Only reason Im on line today is because I went to a Seminar and got to come home afterwards! Yea 

[Lindia]

Its HARD to believe, but we will soon be starting our fouth month with NxStage.  Ever since we got a new cycler, we haven't had a single error ! !            I've had to make a minor adjustment now and then, but its been much smoother sailing for us.  Most of hubbys blood work is better than in-center.   When he started at home in January, his KdT/V was 2.19 --  His April 19th KdT/V is 2.57 -- and that increase was during a lot of short runs and cannulation problems causing days off because of inability to stick.

We still have the same problem with the chronic bladder infections --- as soon as we started daily dialysis, the chronic problems became pretty much a CONSTANT problem.    There is one change in his blood work that isn't positive.   His albumin has been dropping.  When we started daily, his albumin was 4.3 ---  it is now  3.9.  He eats a lot of protein and we are now adding in Proteinex pills.   I'm thinking the lower protein may have some bearing on not being able to fight off the chronic bladder infections like he has for the previous 10 years.  I went online today and ordered the 18 grams of liquid protein in the 1 fl. oz drink bottles.    We are going to try really hard to get his protein back up to 4.3- -  and see if that helps fight off his infections.

If anyone has any advise about chronic bladder infections (he has urether stents that collect biofilm)  we would love to hear it.  He already drinks "pure" cranberry juice and takes cranberry pills.   His uriologist says at some point - the chronic infection will become so bad that his kidneys, bladder and ureters will need to be removed.   We have tried to put that off for years, since he still makes a lot of urine, and the surgeon says the surgery would be "major"  and he might not survive it.     Cross your fingers for us that bringing up his albumin will do the trick.   oh -  and also that the smooth sailing will continue   

[amanda100wilson]

his albumin may be dropping because of the bladder infections

[boswife]

  on the new cycler being nice to you    We went for a year on our first and there were a few things about it that we just accepted but our second one was/is so much quieter as well, and well, theres a few things better about it so im glad you got that stratend out..  I also agree with the albumin being low because of the infections, and what can happen too is the hemoglobin may drop so keep an eye on that too.  Bos albumin seems chronically low and it upsets me.  The 'shots' of protien finally bumped it up, but we've droped again so back on the extra protien.  Seems like it's an all day feeding protien frenzie huh..  All in all, it keeps getting better and i hope it's setteling in as 'just what ya do'.  Im sure glad we made it. I laughed at the first part of your post about 'be carful what ya wish for'.  Oh i curssed myself for 'searching out the best modality for us'... I was so excited then fear struck and i about lost my self in dread...  It was HARD getting through one day much less knowing the same for tomorrow...  Now, it's just fine   I wish you all the best

[fearless]

hemodoc (if you read this) how do you flush your nxstage cartridge?