Switching to nocturnal!

[Caroline85]

Hey guys! I have some questions cause I am planning on switching to nocturnal once school ends and I have more time to learn stuff.  Ever since I researched dialysis I wanted to do nocturnal but my center didn't offer it. I currently do short daily with Nxstage and my neph is fine with writing my a prescription after he learns more about it. So here are my questions. After a long battle with my fistula...(Well not really long....like 10 weeks hahahha) I can finally use botton hole needles in both my venous and arterial. My arterial is great needle slides right in and then I can tape it down flat. My venous is a whole different story. Up until last week I was using 1.25 in sharp needles in the top cause my fistula is deep and weird at the top. My venous one basically has to go in at a 90 degree angle and then toward my heart so it sticks up and out. I sit up in my chair during all my treatments so it's not an issue for me at this time but i am worried that when I lay down it might be an issue. So here are some questions that I have.  How do you guys tape down your needles? What kind of needles do you guys use? (I read something about plastic needles?) Do all of you guys have remote monitoring? (My nurse is worried about me doing it without someone remotely monitoring me although I have a room mate and I know you have leak detectors around your arm in case you needle pops out....I had that experience my first time alone at home!)  For those of you on Nxstage what is your prescription and parameters?(like BFR, FF, how many liters of dialysate etc) Right now I use 25-30L of dialysate each time and I run at 450 with an FF of 35. It usually takes me 3-3.5hrs. Do you guys have any special setup of pillows etc in your bed? Thanks so much! I am sure I will have more questions soon but those are the only ones that I can think of at the moment.

[thegrammalady]

sorry i can't really be of help. i do nocturnal incenter so i don't really have any of those issues. but i can tell you than nocturnal rocks!!!! my blood pressure is back in line, no meds. my labs are outstanding. i can eat pretty much anything i want. and i actually feel and look healthy. and if the government would just get with the program i could go back to work. but maybe i'll just stick with my job is playing with my grandkids.

[kitkatz]

I do nocturnal in-center so I'm useless answering your questions.  Suffice to say I love doing nocturnal dialysis. I feel so much better.

[Treasure]

An update: I have switched back to regular in-center hemo for a bit. I'm selling my house and moving to Texas, and trying to finish up my degree and I just don't have the time to devote to nocturnal right now (I actually need sleep right now to get everything done in time).

I had kinda forgotten how hard regular in-center sucks! The patients are sicker...they are missing limbs...the cramps...the crowded waiting room. But I gotta say, there's better internet connectivity during the day shift, hehehe.

I will have to think long and hard if I want I do day or nocturnal after my move to Texas. I don't know how many more years I can go without getting adequate sleep 3 times a week.   The lack-of-sleep issue had gotten so bad that I've been considering another *gasp* transplant!

M

[coorsbob]

I too am considering home nocturnal dialysis as i understand it is vary gentle treatment and i seem to have trouble with the uf rate being set at a high rate to keep up with my fluid gain, it not excessive but with nocturnal it will slowed way down and done in 8 hours instead of 33.5 hours.from what i can gather all it is  that you do is calculate for a 8 hour treatment and slow down your uf rate and treatment fluid to span for the 8 hour treatment to dialyzes over 8 hours instead of 3.5 your naph will set up the paramiters for you but that all that is. Anyway I'm going to talk to my neph to see if that is an option for me. All I would need is a Heparin pump to space the heparin dose out over a longer period of time. I will keep the board posted as to how it goes after talking to my neph.

[mogee]

I've been on nocturnal home hemo for six years.  To secure my lines I use a product called "IV 3000 1-hand" by Smith & Nephew.  It is an ingenious product that secures my catheter and line better than any tape could.  I also secure the line at my wrist with plastic tape, and at my hand with Medipore tape from 3M.  My needles have never worked loose.  I dialyse five times a week for eight and a half hours.  I use a 17g catheter called a Supercath, which is a flexible plastic catheter with a steel needle in its centre.  Once the catheter is in place the steel needle is removed and thrown away.  The plastic catheter will not damage the fistula wall if I toss and turn while sleeping.  I recommend home nocturnal for many reasons.  My bloodwork is comparable to transplant recipients, I take no medications (save vitamins), I eat and drink at my pleasure, and I feel healthy and normal.

[fearless]

mogee,
Are you in the USA?  Where?  Sounds like you've found yourself with a great care team, using progressive tools and practices.  (I'm jealous)

[SugarBear]

mogee,
Are you in the USA?  Where?  Sounds like you've found yourself with a great care team, using progressive tools and practices.  (I'm jealous)

According to his profile, mogee resides in Toronto.


I am kind of new to nocturnal having start July of last year.  I use a Medisystems 15 gauge blunt needle for my button holes.  I have no set prescription, there main concern is that I use the full 60 liters of Dialysate per treatment five night a week.  The minimum treatment time the center wants is six hours per night, but most nights I do about eight hours.  The max for my BFR is 330 but I mostly run at 280.  I find a slower rate doesn't get my heart pumping which tends to keep me awake!  My UF goal is around 2 liters and the UF rate is 0.33 which is great for my blood pressure.

Where is your fistula located?  Mine is halfway between my wrist and elbow.  I ask because you may not like my advice to you.  You may have to remake your venous button hole.  I had a similar problem, before I got my button holes and the techs stuck me my venous needle would stick up as well due to the fistula being so deep up there.  I found when forming my button holes, if I went in at an 80 degrees and halfway in turn the needle to go toward the heart I was able to form the hole with a natural curve.  It can be problematic to insert the blunt if I'm not precise in my technique, but after two and half years I'm pretty much a pro at it.

Any questions please feel free to ask.

[amanda100wilson]

Mogee, do you have a fistula?  It sounds like you do, but I just wanted to check since I would like to try those dressings that you use to secure with.

[del]

I've been on nocturnal home hemo for six years.  To secure my lines I use a product called "IV 3000 1-hand" by Smith & Nephew.  It is an ingenious product that secures my catheter and line better than any tape could.  I also secure the line at my wrist with plastic tape, and at my hand with Medipore tape from 3M.  My needles have never worked loose.  I dialyse five times a week for eight and a half hours.  I use a 17g catheter called a Supercath, which is a flexible plastic catheter with a steel needle in its centre.  Once the catheter is in place the steel needle is removed and thrown away.  The plastic catheter will not damage the fistula wall if I toss and turn while sleeping.  I recommend home nocturnal for many reasons.  My bloodwork is comparable to transplant recipients, I take no medications (save vitamins), I eat and drink at my pleasure, and I feel healthy and normal.

Can you post a picture of the IV 30001-hand you use.  Hubby has been doing home hemo nocturnal for over 5 years and we are in Canada too so it should be available to us if we need it.  What type of dialysis machine do you use?  WE use Fresinius 2008@home machine.

[fearless]

I want those non-needle needles! 

[lmunchkin]

Has anyone heard from Mogee since he posted this Aug. 2010.  I don't remember if he has been heard from!
I will try to PM him!

lmunchkin

[mogee]

I am in Toronto, Canada where patients are prohibited from paying for medical care.  When I posted about the materials I was using I had a fistula.  It has since failed and I now have a central line.  The standard of medical care in Toronto is generally very high and the hospital I'm connected with, the University Health Network, is an internationally respected teaching hospital.  One of the unique benefits provided by the hospital is a weekly support/therapy group for dialysis and transplant patients moderated by a psychiatrist and a social worker.

[bevvy5]

I've been on nocturnal home hemo for six years.  To secure my lines I use a product called "IV 3000 1-hand" by Smith & Nephew.  It is an ingenious product that secures my catheter and line better than any tape could.  I also secure the line at my wrist with plastic tape, and at my hand with Medipore tape from 3M.  My needles have never worked loose.  I dialyse five times a week for eight and a half hours.  I use a 17g catheter called a Supercath, which is a flexible plastic catheter with a steel needle in its centre.  Once the catheter is in place the steel needle is removed and thrown away.  The plastic catheter will not damage the fistula wall if I toss and turn while sleeping.  I recommend home nocturnal for many reasons.  My bloodwork is comparable to transplant recipients, I take no medications (save vitamins), I eat and drink at my pleasure, and I feel healthy and normal.

I did a google search on this type of dressing.  I'm researching different ways to secure needles as we will be doing our first nocturnal run using Greg's fistula this weekend.

Basically it looks like a Tegaderm but I think it "breathes".  Here is a link.

http://global.smith-nephew.com/us/product21774.htm

A big thanks to Desert Dancer - she sent me a series of pictures that was super.

Bev


Can you post a picture of the IV 30001-hand you use.  Hubby has been doing home hemo nocturnal for over 5 years and we are in Canada too so it should be available to us if we need it.  What type of dialysis machine do you use?  WE use Fresinius 2008@home machine.

[Whamo]

My neph doctor at my hemo clinic says nocturnal is the best way to go.  Too bad my insurance doesn't cover it.  I'm going CAPD instead, but I might go this way after I have to go on Medicare.

[Bill Peckham]

My neph doctor at my hemo clinic says nocturnal is the best way to go.  Too bad my insurance doesn't cover it.  I'm going CAPD instead, but I might go this way after I have to go on Medicare.

What insurance do you have Whamo?

[Sleepyhead]

I have been on nocturnal for just a few weeks.  Single needle, double pump on a Gambro AK 200. 
8 hours a night  - sometimes 9 - 4 times a week
Mean blood flow 200
Fluid flow 300 (otherwise the machine will use it all up before the 8 hours is complete)
Heparin - bolus of 2 - hourly infusion of .6
Also reduced the bicarb from 34 to 30 as get quite a lot in the course of 8 hours
Have a shallow fistula so I'm afraid I can't help with needling problem except to suggest single needle - although not sure you can do this with an NXStage
Blood results are very good.  Still have to watch the potassium a bit
The hospital also ordered me extra-long bloodlines in case I turned over at night.
I found a needed a larger duvet as the long lines meant the blood got quite cold before it reached me and made me quite chilly!
Good luck with everything!

[M3Riddler]

Hey guys! I have some questions cause I am planning on switching to nocturnal once school ends and I have more time to learn stuff.  Ever since I researched dialysis I wanted to do nocturnal but my center didn't offer it. I currently do short daily with Nxstage and my neph is fine with writing my a prescription after he learns more about it. So here are my questions. After a long battle with my fistula...(Well not really long....like 10 weeks hahahha) I can finally use botton hole needles in both my venous and arterial. My arterial is great needle slides right in and then I can tape it down flat. My venous is a whole different story. Up until last week I was using 1.25 in sharp needles in the top cause my fistula is deep and weird at the top. My venous one basically has to go in at a 90 degree angle and then toward my heart so it sticks up and out. I sit up in my chair during all my treatments so it's not an issue for me at this time but i am worried that when I lay down it might be an issue. So here are some questions that I have.  How do you guys tape down your needles? What kind of needles do you guys use? (I read something about plastic needles?) Do all of you guys have remote monitoring? (My nurse is worried about me doing it without someone remotely monitoring me although I have a room mate and I know you have leak detectors around your arm in case you needle pops out....I had that experience my first time alone at home!)  For those of you on Nxstage what is your prescription and parameters?(like BFR, FF, how many liters of dialysate etc) Right now I use 25-30L of dialysate each time and I run at 450 with an FF of 35. It usually takes me 3-3.5hrs. Do you guys have any special setup of pillows etc in your bed? Thanks so much! I am sure I will have more questions soon but those are the only ones that I can think of at the moment.

Caroline,

If your vein is that deep and you are having issues, there is a procedure called a vein transposition. Thiis is where they can bring the vein towards the the surface. This is something you would need to speak with your nephrologist and vascular surgeon about.
Many that do nocturnal with NxStage frun a bloodflow between 200 and 250 for approx 8 hours. Flow Fraction will vary between centers.  The center I am associated with does not use a flow fraction but rather base it off of time.  You can turn the flow fraction to 100% which is basically turnhing the water faucet on all the way so the treatment is based off of the amount of time you wish to dialyze.     Many use 30 liters, but some use up to 60 liters.
If you are having issues with needlles coming out, you want to make sure that you have them properly secured before you start nocturnal. 

Hope This helps....

[mogee]

This is my status update since someone mentioned that I haven't posted in a while.  On November 6, 2012 I received the gift of a deceased donor kidney.  It is now six months since the Tx and the kidney and I are both doing well.  In my mind I am still a dialysis patient even though I no longer need dialysis.  I think it will always be a part of me.  I calculated that I spent nearly 20,000 hours on dialysis.

[Bill Peckham]

This is my status update since someone mentioned that I haven't posted in a while.  On November 6, 2012 I received the gift of a deceased donor kidney.  It is now six months since the Tx and the kidney and I are both doing well.  In my mind I am still a dialysis patient even though I no longer need dialysis.  I think it will always be a part of me.  I calculated that I spent nearly 20,000 hours on dialysis.

Great news Mogee. Now you are a urinator, accept it 

[bocallaghan]

Hi!

My husband does dialysis at home in ATL. We heard about nocturnal dialysis using the NxStage cycler at a home dialyzers conference and we really would like to switch from 5 day weekly treatments, lasting about 3 1/2 hours to overnight.  We called Nextstage and were directed to the Georgia contact, who told us she could not give any info since the FDA hasn't approved that treatment using NxStage.  The nephrologist said he would be fine helping us switch if he could get info on the parameters, etc.  Can someone tell me where you received the info for this?  I cannot seem to find anything except for statements that others are doing it at night. Thanks so much for any help!

[amanda100wilson]

 NxStage Dosing Calculator which is accessible to doctors from the NxStage website. He will prescribe it off label and essentially assumes responsibility  because it is not FDA approved for nocturnal use.  What dialysis company do you use? 

[JohnJ]

.. and if the government would just get with the program i could go back to work. but maybe i'll just stick with my job is playing with my grandkids.

You CAN go back to work right now. I was told by SSI that I can make up to 1200/month for at least 9 months before you will evaluate you for full time work. OF course with our dialysis schedule there is no way we can go back to work full time unless you have a desk job. I work for FedEX so it's pretty exhausting and to be honest I'm only doing that so I'll stay in the best shape possible for my transplant.