Thinking about extended

[KatieV]

When I started my training on NxStage, my mom asked the nurse about Nocturnal Home Hemo and was told they don't offer it because no one is available to monitor the patients at night.  Well, I realize now that it's just an excuse - no one monitors me electronically as they leave about 5 pm and I start around 7!  A couple times we've started at midnight!

After reading many posts on this site, I'm thinking about approaching my Neph and home dialysis nurses about "extended" dialysis.  While I feel better on NxStage than I did on in-center several years ago, I am still tired all the time and the phosphorus/Renvela is kicking my butt.  My Kt/v is always around the targeted 2.0, so I'm considered "adequate".  Currently I'm doing 3 hours 5 times a week.

The biggest thing is the time restraints: I leave the house at 7:15 am for work and get back at 6 pm.  I start setting up the cycler immediately and am running by 7 pm usually.  We really can't extend the run length, as my husband does night barn checks at the farm we live at.  He is supposed to be in the barn no later than 11 pm.  I feel like I spend my whole weekend cleaning house, doing laundry, etc, as there isn't any time during the week.  Or sleeping as I feel worn out (then I feel like a failure as the house is a mess).

"Extended" dialysis while I sleep sounds like a good choice for me.  If I press "treatment" by 11 pm (the barn check can be any time from 9 to 11 pm), I could have time to do housework, eat dinner at the dining table (a novel idea!), and have time to go for a walk or work on a hobby project.  If dialysis is finished by 6 am, I'll have time to get ready for work.  35 hours a week of dialysis should make me feel a lot better than 15 hours.

Any advice on how to bring it up to my dialysis team (besides not mentioning the word nocturnal)?  Any words of caution?  I'm not expecting it to be a bed of roses, but it sounds like it could have the potential to let me live a mostly normal life. 
 

[M3Riddler]

When I started my training on NxStage, my mom asked the nurse about Nocturnal Home Hemo and was told they don't offer it because no one is available to monitor the patients at night.  Well, I realize now that it's just an excuse - no one monitors me electronically as they leave about 5 pm and I start around 7!  A couple times we've started at midnight!

After reading many posts on this site, I'm thinking about approaching my Neph and home dialysis nurses about "extended" dialysis.  While I feel better on NxStage than I did on in-center several years ago, I am still tired all the time and the phosphorus/Renvela is kicking my butt.  My Kt/v is always around the targeted 2.0, so I'm considered "adequate".  Currently I'm doing 3 hours 5 times a week.

The biggest thing is the time restraints: I leave the house at 7:15 am for work and get back at 6 pm.  I start setting up the cycler immediately and am running by 7 pm usually.  We really can't extend the run length, as my husband does night barn checks at the farm we live at.  He is supposed to be in the barn no later than 11 pm.  I feel like I spend my whole weekend cleaning house, doing laundry, etc, as there isn't any time during the week.  Or sleeping as I feel worn out (then I feel like a failure as the house is a mess).

"Extended" dialysis while I sleep sounds like a good choice for me.  If I press "treatment" by 11 pm (the barn check can be any time from 9 to 11 pm), I could have time to do housework, eat dinner at the dining table (a novel idea!), and have time to go for a walk or work on a hobby project.  If dialysis is finished by 6 am, I'll have time to get ready for work.  35 hours a week of dialysis should make me feel a lot better than 15 hours.

Any advice on how to bring it up to my dialysis team (besides not mentioning the word nocturnal)?  Any words of caution?  I'm not expecting it to be a bed of roses, but it sounds like it could have the potential to let me live a mostly normal life.

KatieV,

I would speak to your nephrologist.  If you cannot do nocturnal, ask if you can extend your treatments by 1 hour.  I believe adding an hour to your treatments, you will see change and feel better.  Do you think your husband would be able to extend by just 1 hour, or even 30 mintues for that matter. Any time added is going to benefit you in the long term.    Fight for your right for optimal dialysis.  I know your schedule may be hard, but remember, your kidneys work 24/7 when normal.  Of course you will never have dialysis that long, but we should try to get as many hours as we can.   You want to try to prevent any bone damage long term which happens when you have high PTH and phosphorus levels long term.   Fight for your right with your nephrologist. Extending the hours does not cost any more than what you are doing now.   You can do this by slowing the blood flow which is better for you as well.      What blood flow do you run at?

[jbeany]

If you have questions about extended on NxStage, Bill Peckham is the go-to guy around here.  He does extended without a partner.

Some of the posts you should check out...

http://ihatedialysis.com/forum/index.php?topic=7725.0

http://ihatedialysis.com/forum/index.php?topic=10124.0

[Bill Peckham]

When I started my training on NxStage, my mom asked the nurse about Nocturnal Home Hemo and was told they don't offer it because no one is available to monitor the patients at night.  Well, I realize now that it's just an excuse - no one monitors me electronically as they leave about 5 pm and I start around 7!  A couple times we've started at midnight!

After reading many posts on this site, I'm thinking about approaching my Neph and home dialysis nurses about "extended" dialysis.  While I feel better on NxStage than I did on in-center several years ago, I am still tired all the time and the phosphorus/Renvela is kicking my butt.  My Kt/v is always around the targeted 2.0, so I'm considered "adequate".  Currently I'm doing 3 hours 5 times a week.

The biggest thing is the time restraints: I leave the house at 7:15 am for work and get back at 6 pm.  I start setting up the cycler immediately and am running by 7 pm usually.  We really can't extend the run length, as my husband does night barn checks at the farm we live at.  He is supposed to be in the barn no later than 11 pm.  I feel like I spend my whole weekend cleaning house, doing laundry, etc, as there isn't any time during the week.  Or sleeping as I feel worn out (then I feel like a failure as the house is a mess).

"Extended" dialysis while I sleep sounds like a good choice for me.  If I press "treatment" by 11 pm (the barn check can be any time from 9 to 11 pm), I could have time to do housework, eat dinner at the dining table (a novel idea!), and have time to go for a walk or work on a hobby project.  If dialysis is finished by 6 am, I'll have time to get ready for work.  35 hours a week of dialysis should make me feel a lot better than 15 hours.

Any advice on how to bring it up to my dialysis team (besides not mentioning the word nocturnal)?  Any words of caution?  I'm not expecting it to be a bed of roses, but it sounds like it could have the potential to let me live a mostly normal life.

I think this is exactly right. Other than the barn check I have a similar schedule - out by 7:30, home around 6. Short daily with NxStage was a grind, every day was like a sprint - even going to the store for groceries could throw the whole schedule off and my treatment would go past midnight. 'Extended' addressed every issue. And you are exactly right, do not mention nocturnal, it's extended. The first rule of nocturnal is don't talk about nocturnal.

As far as what would you do to prepare or prepare your care team, I don't know, I haven't had to fight for my preferred treatment schedule. When I first switched to extended runs in 1/08 I thought I would do extended runs on the weekend and short during the week but I didn't fully appreciate all the time advantages of dialyzing while I slept so once I settled in to extended runs I never looked back. Some people take a while to get use to sleeping but I think the only way you can know if it is a good fit is to try it. If you can sleep, especially soundly sleep - I think most nights I sleep better in the chair hooked up than I do on my off nights in bed -  it is by far the least burdensome form of hemodialysis. You feel well and few of your awake hours are spent dealing with treatments. It's a revelation.

Hopefully if your team has doubts they can reach out to a center that offers extended, I'm sure their concerns can be addressed if they believe the information they're hearing. Or they could just treat you like an adult and figure it out  as you went along, working together. A heparin pump, some 171 cartridges, a leak detector, for the compulsory nod to safety theater, and away you go.

[lmunchkin]

I can tell you that as things begin to smooth out for us, I will do the extended hopefully in the near future.  If I could get hubby on board and figure out the sleeping with all the tape. That is one of my biggest concerns, is the taping.  I can sleep in a room next to his, but just don't know how that will fly.

I know when Im ready to do it, my neph will be no problem. She knows longer, slower is better. She is all for that. Its my schedule and convencing John of it.  He thinks, (he may be right) that doing it in the evening and finishing it up, he can go right to sleep.  But I think it is doable, but not in a bed.  He would have to have a recliner.

We'll cross that bridge when we come to it.

lmunchkin

[Desert Dancer]

Everything Bill said; I also do nocturnal - though not on a NXstage - and it really frees you up to have a life. Instead of your time on dialysis being enforced inactivity (something that would drive me right 'round the bend) you're unconscious anyway, so you're not losing any time!

It really is soooo much better and you will feel it! I wish you luck trying to convince your team. Just be persistent. And insistent.

Another thing? It's the same amount of setup time no matter how long you dialyze. I'd drop if I had to set up every single day just to get three hours. Feels more worth the effort if you're getting eight hours out of it. (That's just me.)

This?

a leak detector, for the compulsory nod to safety theater

 

[SugarBear]

I had to transfer from a Davita center to a competing center in order to do nocturnal, aka extended.  But this does vary by location, in NYC there are many facilities and several do offer nocturnal as an option. Some offer it as in-center, thrice weekly, while others offer at home so I was lucky to have choices available. This may not be the case for the area where you reside. 

Another concern is if you hang bags or use the pure flow.  The pure flow is much easier to use and requires less storage space.  But using it depends on the quality of water you have which they will happily test for you.  Hanging bags is an option but I would recommend getting an additional stand alone IV pole that can support the heavy bags.  The NxStage pole will only support 20 liters plus 5 liters on the warmer, but most extended patients have a dialysate prescription of 30 liters. Mine was actually 60 liters a night!  It defeats the purpose of nocturnal if you have to wake up in the middle of the night to change out one or more bags.

Lastly, you do not need a chair to do extended dialysis, if your center even offers you one as some will not pay for a chair.  One of the centers I went to did offer me a chair while the other would not provide one.  I did not take it as NYC apartments are very small and I could not fit the chair along with the NxStage machine and all of the supplies.  I sleep on my bed and had no issues, just make sure your treatment arm and machine are on the same side of the bed so the blood lines do not have to go across your body.

The effort to do extended is well worth it as nocturnal dialysis has been shown to be the only form of treatment that will put you in CKD stage 3 clearance; but only if treatment is done for at least 6 hours a night and 5 nights a week or more. In-center hemo, PD, and daily short hemo leave patients at stage 4 clearance.

Good luck with your journey. 

[KatieV]

I had to transfer from a Davita center to a competing center in order to do nocturnal, aka extended.  But this does vary by location, in NYC there are many facilities and several do offer nocturnal as an option. Some offer it as in-center, thrice weekly, while others offer at home so I was lucky to have choices available. This may not be the case for the area where you reside. 

Unfortunately, there is only one option where we live; it's run by the local hospital.  The state board of (something) turned down their request to sell the units to Fresenius last winter. 

I have hope that my center will authorize it.  My neph calls me and my husband "star patients".  Apparently we learned super quick.  I laid some groundwork today - called the nurse to get my Kt/v and said I was interested in it because I'm tired all the time.  I have a clinic visit in 2 weeks and want to present my "case" then.

[justjen321]

Hiya KatieV,

We went from PD to Short Daily in March, and have just in the last few weeks switched to Nocturnal. (That was our goal when switching to Hemo). We use a Wellbound center, so we've had NO fight to get to use Nocturnal at all. I gather from reading others that Wellbound is VERY progressive in this area, and from all I've seen of them, I'd say that's accurate.

I wanted to speak to the things that struck me most when we switched to Nocturnal. I'm still waiting to see how it affects our labs, but for us, it threw the switch to giving us our lives back. Our days used to revolve around Hemo. Timing it properly,getting set up, running, tearing down. Now, the most I do to prepare for my husbands treatments is try to make a SAK overnight the night before because it's nicer for me to have it running in the hours no one is awake.

My husband still dialyzes in a big recliner, so we spend one night in the living room on dialysis, one night in bed, etc etc.

If you get the okay, prepare for a few nights of disturbed sleep. We had oh, maybe two nights of getting over the worries and fears and then we both slept better. In fact, last week, I was shocked to be awakened when the machine actually was finished. It's the small joys!

Good luck, and I'm so, so very sorry that ANYONE has to fight for the right to do what's best for them.

Jen

[amanda100wilson]

I am hopefully going to switch to a new neph. A new dialysis unit, and hopefully to nocturnal once they get the approval from the State.  I can't wait to give it a go as SDHD is doing my head in.  My health has gone up but in some area I would saymy Q of L has gone down, because my life seems to revolve arou d trying to fit it in. Having been on dialysis for a good number of years, I am pretty sure that a lot of my aches and pains can be attributed to amyloidosis although when ever I raise this possibility with doctors they seem to poo-poo it.funnily enough, it has got a lot better since I have been doing SdHd so I am interested to see if it improves further when I am getting  even better dialysis.good luck, I hope you can get it to work out for you.

[M3Riddler]

When I started my training on NxStage, my mom asked the nurse about Nocturnal Home Hemo and was told they don't offer it because no one is available to monitor the patients at night.  Well, I realize now that it's just an excuse - no one monitors me electronically as they leave about 5 pm and I start around 7!  A couple times we've started at midnight!

After reading many posts on this site, I'm thinking about approaching my Neph and home dialysis nurses about "extended" dialysis.  While I feel better on NxStage than I did on in-center several years ago, I am still tired all the time and the phosphorus/Renvela is kicking my butt.  My Kt/v is always around the targeted 2.0, so I'm considered "adequate".  Currently I'm doing 3 hours 5 times a week.

The biggest thing is the time restraints: I leave the house at 7:15 am for work and get back at 6 pm.  I start setting up the cycler immediately and am running by 7 pm usually.  We really can't extend the run length, as my husband does night barn checks at the farm we live at.  He is supposed to be in the barn no later than 11 pm.  I feel like I spend my whole weekend cleaning house, doing laundry, etc, as there isn't any time during the week.  Or sleeping as I feel worn out (then I feel like a failure as the house is a mess).

"Extended" dialysis while I sleep sounds like a good choice for me.  If I press "treatment" by 11 pm (the barn check can be any time from 9 to 11 pm), I could have time to do housework, eat dinner at the dining table (a novel idea!), and have time to go for a walk or work on a hobby project.  If dialysis is finished by 6 am, I'll have time to get ready for work.  35 hours a week of dialysis should make me feel a lot better than 15 hours.

Any advice on how to bring it up to my dialysis team (besides not mentioning the word nocturnal)?  Any words of caution?  I'm not expecting it to be a bed of roses, but it sounds like it could have the potential to let me live a mostly normal life.

Katie,

I wouldnt even bring up the word Extended.  Just tell them you want to add an hour or so to your treatments... Will not cost anything extra... Explain that more dialysis is better ( which they should already know as well as the reasons) and you are looking out for your long term health on dialysis...

///M3R

[ianch]

Well I don't know your situation more adequately, i know that the private clinics operating in the US do not have a financial incentive to offer HomeD solutions as their income is derived from the patients.

We have a state based system where the facilities are public.  It works for both the patient and state to offer HomeD as the costs are significantly lower.

At the moment the machine of choice is Fresenius 4008B.  While initially looking a bit chunky, I think its the right choice for the health board.  I've found it very flexible and robust.  Can do 8.5 hours nocturnal with no problems and I think it could extend past 9 before the consumables run out.

Have just come off 7.5 hours and it never alarmed once.

I'm personally limiting my Kt/V at present as i have a consultant job in IT and I find the brain fries at a certain pump speed, but can exceed 2 if i choose to.

It does chew through a lot of water so need a good mains supply.