An update on my Nocturnal experience at the Emory Clinic

[BigRed]

Ive been on Nocturnal for three weeks now. Ive taken labs but have yet to seen them, yet...I presume that will occur this coming week. I'll have an update on that, when I can. Although I know some of the folks that have been in the program the full 5 weeks, so far, have been happy with their improvements. And I know the program's head neph has been very excited about the returns, so far.

First, the positives: Plenty of what I feel are knowledgeable, experienced techs and nurses. They're friendly, helpful, and put up with my constant questions. One nurse is having to leave us rather suddenly, which is a bit of a startling situation (she typically was the one to put me on and take me off)...and so tonight I'll start with her replacement, a new nurse. But he seems to ask patients lots of questions and I'm confident he'll be fine, too.   There are only about 13 or so patients and our time 'on' is staggered between 7 and 8:30pm, and so almost always, as soon as I walk in (whenever that may be, depending on the night) they are ready and able to hook me up at my convenience. They allow me to come in whenever works for me, during that time frame, which is tremendously helpful.

I am physically getting used to 8 hr treatments. And on average am taking off 1.4L per treatment, so by the end of things I'm feeling pretty good. Ive had a few small issues I'll mention in a moment, but again, the nurses are always very responsive and helpful and are great to help me understand. They have even gotten the temperature in the clinic at a comfortable level for me personally (although I fear it may be too cold for others-luckily, we all have blankets and I hope thats enough to keep us all comfy enough to sleep).

At this point, I am now sleeping a solid 2 hours every night. Ha, which doesnt sound like much, but thats a new development and I am glad to have it. My goal is to be able to sleep from 12 to 4am, every treatment. Go home and sleep another 3 or 4 hours. Luckily, I live just 5 minutes away in 5am traffic. They have just prescribed to me, trazadone 50mg. So we'll see how well that works out.

Some of the negatives: Having to switch up nurses, three weeks in. This will be old news soon enough, but I really liked my previous nurse. For the first 7 or 8 sessions, it felt like the air wasnt on. This is Atlanta, Ga and at night it was still running 75+ degrees at night.  For myself, it was way too hot to sleep. I would sweat, a lot, and that would add to general 8 hours of dialyzing discomfort.  But at this point it feels as if they have turned the a/c back on at night and we keep it cooler now. A tech also adjusted my temp on the machine to 36.4ish C. I am not sure if that helps or not, in reality, but I sure tell myself that.

8 hours is just a long danged time. And if you cant sleep, even if you're physically comfortable, its really rough. And makes the next day very difficult. I am very grateful that I am more and more comfortable and can sleep just a little bit more, every few sessions.

Honestly, I'm still a little uncomfortable simply wearing PJs to the clinic. Perhaps that will change, I'm sure it would add to my personal comfort level a lot. Other patients seem to come in with very casual clothing or even PJs on.

I seem to clot. A lot. And that presents issues occasionally. And for a newbie like me, is still fairly frightening. But the nurses and techs are great to notice and keep extra watch on my machine. They are always nearby, informative, and very reactive and initially proactive.  During lights on they are quietly talkative and social, which I appreciate. And try to be very quiet and (when needed) gently enforcing of the quiet time rules for patients that need a little occasional reminders.

My first night in nocturnal is when i received the news that my recent wrist fistula had died on me. That was a shockingly hard blow to take. I knew it was a potential outcome, but had not mentally prepared myself for such disappointment. But within a near week, I had had two diff docs take a look, with plans for a third...but my original surgeon could schedule a new attempt at my elbow within a week. So i jumped at it. And am now with a week old elbow fistula (whatever its called), that seems to be purring along. I am exercising it and trying my best to protect it...and hopefully this one takes and keeps.

Over all, I am becoming much more satisfied with the experience. I pray that the trazadone and time will eventually help me carve out a full 4 hours of sleep. I bring my ipad for work and entertainment and with the wifi and tv's that are provided, as well as the social time with other patients and staff, it fills my time well.

I use ear plugs and a sleep mask when I sleep...the plugs are not ideal to cancel out the sound of the machines, but they cut it down greatly and cost me 4 bucks for 6 pair. I bring a few altoids (all of these were ideas suggested to me) to suck on now and again and they're a great, cheap way to keep my mouth happy.

Once again, I must say that the community of this board, as well as the personal support, encouragement, and advocacy from individual members like NoahVale, have been very encouraging and helpful in the past three months of this process for me. My girlfriend/roommate/caretaker just moved to Va for a 3 month job with NASA. I'm proud of her, but its a tad awkward to suddenly be living by myself in this still new experience.

Anyway, I hope my experience helps provide some encouragement and comfort to others who hope to, or who are trying Nocturnal. It was very rough on me at first, but that turned around, with a little help, very quickly. And I am very glad I stuck with it. In time, this will make a huge difference in getting back to a normal life and in improving my labs even more. I'm excited for both.

Thanks again to everyone, especially NoahVale.

-BigRed

[Arcticat2000]

You just have to keep at it.  I was having trouble sleeping for the first few months, now i sleep at least 5 hours of my 7 hour session.  I've been nocturnal for 6 years now, and i have no desire to go back to daytime dialysis except for special occasions. (IE partying) 

[kitkatz]

I have been at nocturnal almost 2 years now. I sleep 6 to 7 hours regularly unless the BP crashes and they wake me up to check with me.  My tech and I have an agreement to talk to me before turning the macine down or off. My BP likes to play hide and seek.

[rsudock]

BigRed did anything specific happen to your fistula to make it stop working? Did you get a brand new one?

xo,
R

[BigRed]

The doc said that my artery was great, strong and large. But my vein was weak and once they did the surgery they were a less confident in the whole thing. It ran well for about two weeks and then I woke up and there was no thrill. The nurses agreed and so did the tests run at the vascular docs. Its failure seems to have not caused any issue at all, aside from an errant scar, for my arms vascular life.

That said, they went ahead, a week later, and tried again at my elbow. This thing is now about two weeks old and I can feel it running hard all the way up at my shoulder. The access nurses sound thrilled by it. Oh, no pun intended.  And that they will assess it for the beginning of button hole creation in a week or two.  As funny as it sounds, I know yall understand, this is really exciting news.

I greatly appreciate the affects of Nocturnal, as well as the freedom of scheduling that it provides. But I am still not sleeping at all most nights. The nurses at my clinic are now trying to get me on NxStage. All the first hand experiences sound great, and of course, so do the sales pitches from the company itself. I'm thinking about it.

I'd honestly miss the social aspect of the clinic, but would greatly appreciate the personal control over my treatment as well as the potential scheduling allowances and ability to sleep all 7 nights a week. Anyone here every transition from Nocturnal to NxStage? If so, why? How was your transition?  Thanks

-Daniel

[lmunchkin]

Well, I have not done nocturnal but hear of alot of great reviews about it.  I do however perform Nxstage on spouse for a year now!  Would like to do nocturnal on Nxstage machine, but want to wait till others on this site have perfected it and advise me on how to go about it. 

I do know that longer and slower makes for better dialysis!  Lower BFR does save your access.  I believe when patients go incenter 3x per week, they rush blood through the machine at a high rate to remove fluid in a certain amount of time.  Thus the low BP, washed out, or severe dehydration. 

I remember when taking husband to incenter for tx's, he would be just fine, but when picking him up, it was like he was a zombie!  I would be fearful for him, seriously! But with nxstage at home, he can dialysis everyday (5-6) about 3 to 4 hrs a day but a slow more gentle dialysis!  And because he is doing it more days, you do not have to take off so much each day!

I believe in this NxStage and believe they will have nocturnal in home dialysis, sooner rather than later! Heck, you can just about do it as long as you want now!  I know this doesnt answer your question, but any opportunity to give NxStage a plug, I will. It is an awesome machine!

lmunchkin     

[PatDowns]

For the dialysis center staff to be pushing NxStage, then first of all, you must be fully insured. This modality is not an option for patients who only have medicare or medicaid.  This is a plus.

Now the trade-offs and what to consider:

1) Do you have someone who is willing to be your partner in home dialysis?  While there are folks on here (Meinuk comes to mind) who do NxStage by themselves, it is the exception.  However, your partner should only be of minimal assistance and act as a back up if something should happen.  Treatment should be your responsibility.  Are you willing to assume it?

2) What schedule would you run on?  Many on here run 6-7 days a week.  Are you (and a partner) willing to make that commitment?   Side note: Since you are fully insured, check w/your insurance company to see if a home aide would be covered.  From my readings, every other day treatment for 3.5 hours could serve you adequately.  You currently get 48 hours of treatment every 2 weeks with incenter nocturnal.  Every other day NxStage (3.5 hrs.) would give you 49.

3) Both home dialysis and incenter take a mental toll.  Which one is the lesser of the two evils for you?  Are you comfortable with having to take the responsibility with the payoff being more independence?  Are you better at going incenter, having limited control and being at the mercy of the staff?   Even if you are in a good center, not all staff are committed to providing good care.  You willing to speak up when necessary?  Will your clinic allow for "limited" self care on nocturnal - ie: allowing you to cannulate yourself, set-up your station and monitor your treatment?

4) Is your ultimate goal receiving a transplant?  Do you have folks willing to be a donor or would you need to go on the waiting list?  If the former, you might want to stay on incenter nocturnal.  If the latter, then home dialysis would be more favorable since the wait times are so long.

5) How does each modality fit into your work schedule?  If you have to travel, NxStage can go with you!  It's much harder to set up transient dialysis (don't even think about last minute plans), and nocturnal even more so.

6) This might sound callous, but by saying, "missing the social aspects of the clinic," do you mean the comfort of having staff around?  You are doing treatment at night- when is there time to chit chat with other patients?  If you are needing support from others going through the same as yourself - especially being still new to renal failure - then come here to IHD for that. 

If I had full insurance coverage I would be doing home hemo.  I hate incenter, but have learned how to make it work for me.  You are fortunate to not having that constraint in determining a treatment modality.  remember, whatever choice you make doesn't have to be permanent. 

I greatly appreciate the affects of Nocturnal, as well as the freedom of scheduling that it provides. But I am still not sleeping at all most nights. The nurses at my clinic are now trying to get me on NxStage. All the first hand experiences sound great, and of course, so do the sales pitches from the company itself. I'm thinking about it.

I'd honestly miss the social aspect of the clinic, but would greatly appreciate the personal control over my treatment as well as the potential scheduling allowances and ability to sleep all 7 nights a week. Anyone here every transition from Nocturnal to NxStage? If so, why? How was your transition?  Thanks

-Daniel

[Bill Peckham]

Having Medicare primary is not a barrier to using the NxStage - at least it shouldn't be. Are there units not offering NxStage if people have Medicare Primary?


#2 rerun those numbers. In general an every other day, 3.5h per treatment schedule using NxStage would not give you enough dialysis. You'd need to go at least five days a week doing 3.5 hour runs.

For the dialysis center staff to be pushing NxStage, then first of all, you must be fully insured. This modality is not an option for patients who only have medicare or medicaid.  This is a plus.

Now the trade-offs and what to consider:

1) Do you have someone who is willing to be your partner in home dialysis?  While there are folks on here (Meinuk comes to mind) who do NxStage by themselves, it is the exception.  However, your partner should only be of minimal assistance and act as a back up if something should happen.  Treatment should be your responsibility.  Are you willing to assume it?

2) What schedule would you run on?  Many on here run 6-7 days a week.  Are you (and a partner) willing to make that commitment?   Side note: Since you are fully insured, check w/your insurance company to see if a home aide would be covered.  From my readings, every other day treatment for 3.5 hours could serve you adequately.  You currently get 48 hours of treatment every 2 weeks with incenter nocturnal.  Every other day NxStage (3.5 hrs.) would give you 49.

3) Both home dialysis and incenter take a mental toll.  Which one is the lesser of the two evils for you?  Are you comfortable with having to take the responsibility with the payoff being more independence?  Are you better at going incenter, having limited control and being at the mercy of the staff?   Even if you are in a good center, not all staff are committed to providing good care.  You willing to speak up when necessary?  Will your clinic allow for "limited" self care on nocturnal - ie: allowing you to cannulate yourself, set-up your station and monitor your treatment?

4) Is your ultimate goal receiving a transplant?  Do you have folks willing to be a donor or would you need to go on the waiting list?  If the former, you might want to stay on incenter nocturnal.  If the latter, then home dialysis would be more favorable since the wait times are so long.

5) How does each modality fit into your work schedule?  If you have to travel, NxStage can go with you!  It's much harder to set up transient dialysis (don't even think about last minute plans), and nocturnal even more so.

6) This might sound callous, but by saying, "missing the social aspects of the clinic," do you mean the comfort of having staff around?  You are doing treatment at night- when is there time to chit chat with other patients?  If you are needing support from others going through the same as yourself - especially being still new to renal failure - then come here to IHD for that. 

If I had full insurance coverage I would be doing home hemo.  I hate incenter, but have learned how to make it work for me.  You are fortunate to not having that constraint in determining a treatment modality.  remember, whatever choice you make doesn't have to be permanent. 

I greatly appreciate the affects of Nocturnal, as well as the freedom of scheduling that it provides. But I am still not sleeping at all most nights. The nurses at my clinic are now trying to get me on NxStage. All the first hand experiences sound great, and of course, so do the sales pitches from the company itself. I'm thinking about it.

I'd honestly miss the social aspect of the clinic, but would greatly appreciate the personal control over my treatment as well as the potential scheduling allowances and ability to sleep all 7 nights a week. Anyone here every transition from Nocturnal to NxStage? If so, why? How was your transition?  Thanks

-Daniel

[PatDowns]

Re: #2 - Thank you, Bill.  My mistake. 

I'm saying if a patient has only medicaid or medicare as primary  and no secondary coverage for the remaining 20%, NxStage will not be offered unless a patient can afford to pay out of pocket each month.

Having Medicare primary is not a barrier to using the NxStage - at least it shouldn't be. Are there units not offering NxStage if people have Medicare Primary?


#2 rerun those numbers. In general an every other day, 3.5h per treatment schedule using NxStage would not give you enough dialysis. You'd need to go at least five days a week doing 3.5 hour runs.

[rsudock]

For the dialysis center staff to be pushing NxStage, then first of all, you must be fully insured. This modality is not an option for patients who only have medicare or medicaid.  This is a plus.


6) This might sound callous, but by saying, "missing the social aspects of the clinic," do you mean the comfort of having staff around?  You are doing treatment at night- when is there time to chit chat with other patients?  If you are needing support from others going through the same as yourself - especially being still new to renal failure - then come here to IHD for that. 

I believe what BigRed means about the "social aspect" of nocturnal D is the  comradely of the patients who become like your friends. I know my bro does nocturnal D and he tells me that people bring in movies to share with the entire unit. Most people do not sleep the entire time they are there. Usually from 7 to 9 is a staggered setup putting people on the machines. So people do have time to talk and chat.

xo,
R

[Simon Dog]

I'm saying if a patient has only medicaid or medicare as primary  and no secondary coverage for the remaining 20%, NxStage will not be offered unless a patient can afford to pay out of pocket each month.

There are two "private insurance" issues that are distinct and different:

1.  If you are on Medicare and have coverage for the 20%, you are governed by what medicare will pay.  for example, you cannot get "staff assist home hemo" where a tech comes to your home.

2.  If you are on private insurance without medicare, a much higher rate is paid, and there is more flexibility as to what is covered (depending on the policy).

It's like the truckers bumper sticker "cash, grass or ass - nobody rides for free"