Otto's going to try Nxstage

[flip]

I guess I'm trying to figure if it's really worth it. I'm 5 minutes from the center and my run time is 3:15. I don't have to set up or clean up. Plus I have no supplies to store and a nurse if I need her. Where is the advantage?

[petey]

flip --
We see the main advantage in how much better Marvin feels every day (not just "off" days).  Home hemo has literally made all the difference in the world concerning how he feels, how much more energy he has, how much healthier he is, etc.

Also, I'm the nurse (well, not actually a nurse -- but you know what I mean).  In-center, there was one nurse -- but usually just a tech -- assigned to a row of patients, usually around 1:8 ratio.  Here at home, I have one "patient" -- Marvin, and he gets all my attention and immediately when he wants/needs it.  The ratio here is 1:1.   (Some might argue that I'm not as trained as an in-center nurse, and I'm not.  But, I have as much training now as the techs who worked at his clinic.  Usually, there was one RN and the rest were techs on every shift.  That means he almost always had a tech put him on/monitor/take off.)

Also, I am the only one who has cannulated him in a year (even when he was in hospital), and from what we've read, that should increase the "life" of his fistula.

Marvin NEVER waits for his time to "go on."  The machine is sitting there waiting on him!

We also like the total control that we have -- not just in setting his treatment times but also in making sure everything is safe, cleaned properly, set up properly, etc.  (I'm not saying he didn't have some good nurses and/or techs over the years of in-center because he certainly did.  But, we KNOW everything is clean, set up, etc. by the book -- we know because we're the ones doing it.)

Also, on home hemo, he gets a "new" kidney/filter every treatment (his in-center was big on re-use --some times as many as 20 times!)

Then, there's the issue of Marvin being "exposed" to germs, colds, flus, etc. when he was in-center.  That doesn't happen here at home.  No one is allowed in our home if they have a cold, a fever, the flu, etc.  (thank goodness I'm not a "sickly" person -- I haven't had a cold, flu, etc. in years -- If I did, I keep masks handy for just that purpose.)  I keep bottles of Germ-X (waterless, antibacterial -- alcohol-based -- hand sanitizer) in every room, with a big one by the front door.  Our friends and family all know that the first sign of a cold (fever, flu) for them means they can only contact Marvin by phone.  Am I overprotective?  Yes.  And, here at home, I can do that.  At the clinic, I couldn't control that.

There's also a factor of comfortableness here at home.  Marvin has his treatments in his "sleep" pants, a tee shirt, and his bedroom slippers.  He's in his house, his chair, his TV, etc.  His clinic didn't allow a drink, a cup of ice, a snack.  On home hemo, he can have these things if he wants them.

There's the flexibility issue for treatments.  When he was in-center, Marvin's "on" time was 6:30 a.m.  If he got to the clinic before 6:30 a.m., he didn't go on any earlier (sometimes later if they were running behind -- this happened often because other patients had difficult sticks, emergencies, etc.).  If he got there late (and he NEVER did, but others did often), his treatment was cut short so he would still come off at the scheduled time, so as not to throw off the patient who had his chair behind him.  In-center meant his Mondays, Wednesdays, and Fridays were controlled by the times set at the clinic.  On home hemo, he picks the time every day when he wants his treatment.  7 a.m. tomorrow, 9 p.m. the next day, etc.  If he has something he wants to do that day, we move the treatment time to fit his schedule.

The more frequent treatments allowed Marvin to come off all BP meds (he was on several different ones before -- NONE now).

He can drink  more each day (an extra glass or two makes a difference).

Travel is much easier with NxStage.  We traveled when he was in-center, but we always had to schedule ahead of time to get into a clinic.  Now, we just take it all with us.

Marvin's clinic was a DaVita clinic.  To save money one way, they cut the "chucks" (those throw-away, blue pads used under the arm to protect clothes, chair, etc. from blood) into THREE pieces.  To use a whole chuck in-center would have been a waste -- so they said.  The 1/3 chuck that they put under his arm was not as  big as a sheet of paper.   I use TWO blue chucks with every treatment here -- whole chucks at that!  Marvin's insurance pays for the supplies, and I see now that his clinic was "stretching" the supplies to save money.  I just didn't like that.  If they'll skimp on something like a chuck, what else did they skimp on that I didn't know about?  The last year or so Marvin was in-center, DaVita also devised a system for the nurses/techs to be more efficient.  They were under heavy pressure to "put on" a patient in 6 minutes (from the time the patient arrived at the chair until they were actually running); someone up the line determined that was all the time required for a connection.  I'm not rushed here at home when I'm putting Marvin on; if it's a difficult stick day, I take my time.  I'm not rushing from one chair to the next to be more cost efficient for the company!  Marvin is my "company," and I only have to serve one chair -- his!

These are some of the advantages we see; I'm sure there are others.

[jbeany]

lola, wouldn't Otto rather be at home with the kids, even hooked up to the machine, than stuck in-center watching bad tv?  He could use the time to read, help with homework, play board games or video games with them. . . .

petey has most of the advantages covered there.  Might I add a few?
 Like - No listening to the patient in the next chair puke. 
No smelling the patient in the next chair using the porta-potty with only a curtain for cover. 
I do a 3 on, 1 off schedule, so I have even more days off than Marvin. 
I like that my butt doesn't get numb from those horrible chairs in center.  No sticking to the vinyl on hot days! 
I like that I never have to wait for a nurse to check on me when I think that my BP is dropping.  (First you have to get their attention, then they have to check your bp, because your word isn't good enough - they need numbers, then, finally, they might get you some saline, and maybe think about resetting your UF goal - maybe.)  At home, if I feel my bp drop, I can immediately stop the UF, give as much saline as I feel like, and I never have to wait for anyone.  I also set my own goals here, with no arguing needed.
My potassium clearance is so much better I no longer have to restrict those foods - potatoes, tomatoes, OJ, bananas - all are back on the menu. I still have to watch the phos, but it's certainly easier to follow a diet without so many restrictions.
I feel so much better on home hemo that I was able to go back to work part time - I haven't worked in almost a decade.
I can have company, do big, messy craft projects, watch what I want to on TV, thanks to my DVR, talk on my cell phone, answer my land line, eat and drink whatever I want without silly rules about it, even sit and talk to my cat if I feel like it.  (She's been trained not to come in the room while the machine is running - but she sits at the open doorway, and meows at me to see if I'm almost done and ready to come out yet.)
I also saved time switching to home hemo, but then my closest center is an hour's drive from my house.
Over all, it turned dialysis into some boring, repetitive chore that I do at home after the rest of my day is done, instead of some tremendous hassle that I had to drag myself out of bed to face 3 days a week.  Now that I have energy to do things, I have days that I think - "Finally, time for dialysis. I'm ready to sit down."  I don't dread it anymore.  This version doesn't make me sick, tired and wobbly.

[lola]

Today Otto did well except they at first had him set to run for 4:55 Otto about had a stroke so they pulled him off after 3:00. He only had to have .3 taken off for fluids and that happened in the first 30 mins. He is just not sure this is what he wants, so my hands are tied since this is his life. It's very hard to keep my mouth shut since I see how much better he looks and feels. It's getting him past he's now gone 5X's a week and feeling like he never sees the kids. I have so much to do before his machine comes home and now he just asked me to stop and wait till he makes up his mind.

[G-Ma]

Today I empathize with Otto....so much....  I spent a couple of hours at NXStage in Charlotte this morning.  A couple of NXers talked to me and are really happy with what they are doing.  One man said has used NX 2 years, loves it, travels when he wants, has had no health problems, some minor equipment problems but always got help so I was really pumped when they took me in the conference room and once everyone got done talking to me I REALLY DON'T KNOW.  I asked about dialysing every other day instead of 6, I don't even care if I have to sit 3 hours at a time, just am not sure about 6 days a week and they emphatically said no, said "possibly" in 4 months I can cut back to 5 days a week, and want me to start on the 28th of July and besides the 2 needles I also will have to give myself my EPO subq...grrrr...  I at this time feel great, numbers are very good, all except PTH and I started Sensipar today so what will HHD give me??  This is a super huge decision now...I don't want to start and then stop...I am hmmm not depressed but really want to sit in a corner and cry......I also saw surgeon today who said my fistula is great and ready to use so I can start learning to self canulate.  Any and all suggestions will be appreciated, also a huge thanks for just listening.

[Meinuk]

Ok, now I feel like a NxStage pusher, but why not give it try for a month or two at home.  You can always go back in center. 

Lola that may work with Otto.  I feel that you'll never know until you try, and the training is just a taste of the therapy, things are so different when you are in the comfort of your own home.

NxStage isn't for everyone.  But for some, (me included), it changes everything. 

[flip]

I guess that answers my original question. I was hoping I could do NxStage on the same schedule I have now. I guess I'll stick to my 3x3 in the center. I don't want to give up any more freedom.

[skyedogrocks]

Lola - Rob had the SAME concerns that Otto has now.  What size needles does he use?  That makes a big difference in the speed he can use, which goes hand in hand with time.  At first Rob had a long dialize time because he was using smaller needles and only running at a speed of 350.  As his fistula matured he was able to go to size 15 needles and run at a speed of 450 with a filtration rate of 32.  That brought his time down to 2:30 - 3:00 depending on how much fluid he had on. 

He didn't think it would be worth his time at first because he felt he was spending more time on the nxstage than in center. After 4 months he felt that being at home really was worth it.  He felt like he slept, worked, then dialyzed and had no time to himelsf.  He is now able to spend time with my son, he doesn't have to wait to dialyze, can do it at any time.  It does take time to adjust, but definitely push him to try it out.

Truly, this was Rob last year at this time and now he is so much happier!

Good luck!

[lola]

Today they started to use the 15 needle and speed of 450. I don't want to push to hard since this seems so much for him, and really it's got to be his choice so he can't point the finger at me. I'm praying he can get past the training and get home and then make his decision. I also want to see his labs on nxstage so I can show him there is a positive difference. Thanks guys for everything.

[lola]

Otto was trained yesterday how to do his labs, he's going to start sticking himself also this week. Otto is going to wait to get the machine home and try it for awhile before he makes his decision about home-hemo. I think part of the problem is he's sick of getting up at 6:30 every morning to go to training. The couple next to him are from out of town and the sweetest people (60-70's), they are on week 6 and it still took them over 2 hours to set up the machine yesterday. Otto is feeling so bad since he has his setup down, they think Otto will be done with training next week he's pretty happy but feels really bad for the people next to him since he started after them and will probley be done before. I told them about IHD but they don't have a computer.






EDITED: Fixed smiley tag error- kitkatz,moderator

[jbeany]

Some people just have a longer learning curve with mechanical things.  It took me longer than it did my tech-geek hubby to get the hang of things.  After a year on it, I only need the manual when we get some odd alarm.

6:30 sounds lousy to me, too - but it will be worth it in the long run!

[lola]

We jsut found out WALL-E (kids named Otto's machine) will come home August 1st. He will do his 1st run on the 3rd at home as long as everything keeps going well.

[petey]

We named Marvin's machine "Hercules" and had a BIG party when we brought him home.  Good luck!

[petey]

lola,
we need an update on Otto and the NxStage training!

[flip]

just bring it to Chicago and we can all use it

[lola]

Otto is doing everything himself except the poking part, he thinks either tomorrow or Monday he will do that. He is really wanting to be done, WALL-E comes home next Friday. Today they used blunt needles for the first time and he said he didn't even feel them . He is wondering why they don't use Nxstage in center since he feels so much better and his labs are looking better. Otto is so glad he can start drinking Coke again. They do want him to start a vitamin called Dialyvite, are any of you guys on it? I wish we were able to bring WALL-E to Chicago we both REALLY need a vacation, but we're still just newbies. Otto is starting to accept home-hemo a little bit better, I really think he was over whelmed with the training and getting up at 6:30 every morning, and once again being the "baby" in the center. I will let you know if does his own button holes in the morning.

[monrein]

I take Renalvite which is a renal vitamin much like Dialyvite.

[petey]

Lola, This is sounding more optimistic.  I was worried about Otto.  Tell him to keep thinking, "One more week... one more week..."  It really does get easier when you're done with the training and you start actually doing treatments at home!

[KR Cincy]

I'm on Dailyvite 800 +Zinc...it's very reasonably priced, ships right to your home, and seems to be doing a good job for me.

[annabanana]

Lola, I have just found this thread. I'm so glad you continue to post Otto's progress. Very informative in so many ways! Sounds like he's going to be ok with this.

[flip]

I'm also on Dialyvite. Mine is Rx and I have a $10 co-pay.

[lola]

Well today is the end of week 2 Today Otto was going to stick himself but he was working till 5am and only got an hour of sleep so he said he was to shaky. Monday they will teach him how to stick himself, next week I have to learn the emergency procedure and also how to stick him. Do you have any problems on Dialyvite? We are getting them tru Snyders and then I'll use reciept for tax write off since ours is not an Rx.

[flip]

I've never had any problems on Dialyvite. Mine are Rx because they have extra folic acid.

[cherpep]

Hi Lol!  I just discovered this thread and found Otto's journey with NxStage pretty interesting.  I've been doing home hemo now for about 5 months, using NxStage.  For me, the charges are lower to do home hemo, much lower than they charged for in-center treatments.  But, I also switched dialysis providers. 

It sounds like you guys are doing very well with the training.  By the time we completed our 3 weeks, my husband & I had it down.  We named our machine Mary (Bloody Mary, he he).  I think the other posters have done a great job in naming several of the benefits of doing it at home.  For me, I love it because of the extra time I get with my family.  I would never go back to in center, unless I had to. 

We just travelled for the first time with machine Mary.  I loved not having to arrange for dialysis as a center near our vacation place.  They shipped the dialysate and cartridges directly to our cabin, so we didn't have to haul all that.  However, hauling the machine and saline did add a bit to our regular vacation bundles.  Although I was nervous at first, performing dialysis away from home went beautifully.  It is great to know that we have this option.  We made treatment packs of all the little supplies we would need - gauze, needles, alcohol wipes, syringes, etc; we put them into separate ziploc bags - one for each treatment.  Then, I threw in a few extras of everything in a separate box.  That way, we knew we had everything we needed plus some.  Anyhow, I think this is a great advantage to home hemo with NxStage - being able to take it on the road. 

Since everyone has told you about the upsides, I thought it might be helpful to hear a couple of the downsides.  Everything has its ups and downs, and for me, the ups definitely outweigh the downs.  But, it might help you in making the final decision and what to expect.  First of all, it can be a lot of pressure on the care keeper.  I am very thankful for my wonderful husband, he never complains.  He loves having me at home and loves the changes in me since home hemo, including the lab results.  However, it used to be that I would have dialysis, and besides dropping me off or picking me up, he maintained a normal life.  Now, he is right there with me during the entire treatment.  He might leave the room for a moment or two (we have a baby monitor, he takes the remote), but he is tied to the treatment almost as much as I am.  I feel bad that I've added to his daily pressures, but he says its all worth it.

My husband and I love each other very much.  We are in our early 40's.  After becoming his nurse everyday and being concerned for him, and being such an integral provider of his care, you may have to work through some different feelings.  It may take away some of those feelings you have in the bedroom, if you know what I mean.  We've been able to work through those feelings, but I still feel like he treats me like something very fragile and is sometimes afraid.  This changes a lot for the caregiver.  We know how much better it is for the patient, but you really should be aware of the changes it will require from you.   As I said, my husband and I feel it is completely worth it, but have had to work through a few things in the meantime.  I still feel guilty for what I've done to his life, but he has never made me feel guilty.  Does that make sense? 

Anyhow, thought I'd share a couple of my feelings.  I hope everything works out great for you & Otto.  Bless you for being with him. 

[lola]

I have been with Otto since I was 18 and I have been thru more with him then most in a lifetime. I love taking care of Otto, wether it's been with his Kidney or having both hips replaced 2x's I am ready for this new challenge although as scared as I might be at first the benefits I've seen already are so worth it. Cherpep as for the "other" thing you mentioned since he started home-hemo it's like we're teenagers again since he has energy