Otto's going to try Nxstage

[flip]

Hey Lola.....I bet you'll look good in scrubs....gotta keep it sanitary   

[lola]

Otto's thinkin fishnet and heels but I don't know if they have his size

[mark m]

Congrats.    It can be overwhelming, you just have to take it one day at a time. It gets easier...

[kitkatz]

If you get Otto in fishnet stockings and high heels, we want pics!

[jbeany]

I felt better the first week of training.  The frequent, short runs made a huge difference in my health right away.  Hope it works the same for Otto!

[petey]

I felt better the first week of training. The frequent, short runs made a huge difference in my health right away. Hope it works the same for Otto!

Marvin, too, had a drastic change after just the first week of training on home hemo (NxStage).  It was similar to the week after his transplant -- really!  He had renewed strength, energy, stamina, etc.  He felt great -- and continues to feel great -- doing home hemo.  Best of luck to Otto.  We're right here if you have questions.

[del]

   Good luck with the training. He should feel much better really soon!!

[lola]

Today was Otto's 1st day and he's amazed at how good felt after, usually he felt like crap after D but not today They did everything for him today but tomorrow he'll be taught his 1st step. Thanks for all your support xoxoxox

[petey]

..and the next day, they'll teach him another step, then another, then another, etc.  It sounds like it would all be overwhelming, but if they take Otto through it step by step, it's a piece of cake!

So glad it went well and he feels good today after tx.  I was thinking about him and worrying about him.

Go, Otto, go!

[monrein]

First day good, each next day better and better.

[pelagia]

So happy to hear that it went well today, Lola. 

[lola]

#2 and still feeling good Today they had him "watch" the steps. I hope you don't mind me posting, but I thought maybe it will let others see what Otto's doing and see another option. It's so great to see him come home not sick on D day.

[G-Ma]

I am glad you are posting.  I think I am brave enough to go to the NxStage center on Thursday and check it out.

[pelagia]

post every day!  that's what we're here for.

[Meinuk]

Lola, it is great that you are posting Otto's progress, it really is inspiring.  And t will help when you look back on everything a few months from now when he is settled in at home.  Some times, I go back and read my training posts and really laugh at how much easier it gets.  You are giving us a real life perspective that is priceless.

[flip]

Lola, who's going to do the sticking? I've been working on doing my own and it seems pretty easy once you get the feel.

[lola]

Otto is learning how to do things himself. My biggest fear is he's become WAYYYYYYYY to dependent on me and I need to step back in case I'm hit by a bus. he he

[jbeany]

If you get to the point where Otto feels comfortable sticking his own needles, then you can train other family members and friends to help with the rest of the hands on stuff.  It's nice to have options when scheduling conflicts come up.  My mother-in-law can't stick the needles, but she is willing to do anything else that needs to be done.  It really helps to have an alternate person to help.

[lola]

Today when Otto got to clinic they were kinda busy, so he looked at the machine and thought how hard can this be to set up. 10 minutes later his nurse came and about fell over because this is something he has not been taught yet and he did it correct she told him they might as well just send him home with WALL-E(kids named it) and he can teach himself. They are betting Otto will be done in record time I'm going with him tommorow so I can start watching and learning also. Again he felt great today. If anyone is thinking about doing this DO IT.

[lola]

OK so now I'm a little freaked, Otto just told our neighbor he's having 2nd thought's on doing home-hemo He says he's not gaining any "time" since now he's doing it for 5X's a week and his time is for 3 hours. He said even though he feels better he just is thinking it's not worth it I'm going with him tommorrow so I'm gonna talk with them and him about it then. I'm just upset because I can see he feels better and I don't understand since I'm not the one on the machine H E L P!!!!!!!!!

[flip]

Does he have to do it 5 times a week?

[lola]

Yes 5x's a week for 3 hours

[Meinuk]

His concern for time is valid, but he can schedule any time to dialyze.  (I've done it as early as 7am and as late at 11pm)  And there is no waiting for a chair or travel time.  I couldn't imagine being so young and on dialysis.  (I whinged that it cramped my style at 40)

In the end, all you can do is love him, respect his wishes and hope for the best.

[flip]

I guess I don't understand the time difference. Is NxStage less efficient than a regular dialysis machine. I was hoping for 3 days a week if I switch over.

[petey]

lola,
yes, time is a factor in home hemo.  Marvin does treatments 6 x week, and each treatment lasts between 2:45 and 3 hours (depending on how much he has on and how much we set the machine to take off).  Let's just round it up to a three-hour treatment.  Marvin sets up his machine (takes about 30 minutes) every day, and I clean up (about 5 minutes) -- but this is not "extra" time for Marvin because he's also holding his sites while I do the break-down and clean up.  If you add it all up, it's about 3:30 every day.  Now, multiply that times 6.  Marvin spends about 21 hours a week either setting up or running.  Throw in an extra hour a week for inventory, re-stocking, etc. = 22 hours a week on home hemo.

When Marvin was in-center, his run time was 4:45 there at the end (one time during in-center, he did have to run as much as five hours).  But, let's use the 4:45, times 3 (in a week).  It was a fifteen-minute drive to and from the clinic.  Once he walked in the door, it was about 15 minutes of pre-treatment stuff (weighing, bps, etc.), and another 15-minute hold when he came off.  IF (and this is a great, big IF) he went on as soon as he got there, this procedure took 5 1/2 hours (times 3) = 17 1/2 hours per week on in-center.  (This hardly ever happened because the clinic never took him back as soon as he walked in the door).

If you figure it like this (with the best-case scenario at the clinic), he spends an extra 4 1/2 hours every week now that he's home hemo with his treatments.  (This figure is not quite accurate, as I pointed out above, because in reality we added about a half hour each in-center treatment -- sometimes more -- for it to be his "turn" to go back.)  So, subtract 1 1/2 hours on average a week (half hour x 3) from the 4 1/2.  That puts us at 3 "extra" hours a week.

What do we get for our additional 3 hours?  Marvin feels sooooooo much better on home hemo.  He has more energy, no more peaks-and-valleys (full the night before, dry the afternoon after, over and over).  He is much more comfortable here at home in our place with his "stuff" around.  He's able to drink more (because we take it off every day -- not much build up between treatments).  His labs are much, much better -- which, to us, means his overall health is better.  And, he's in control (which is a biggie to us).  We think we're getting an awful lot for that extra 3 hours every week because it makes the hours when he's not running so much better.  Other people may not like the trade-off, but it works for us.

I will say, however, that this home hemo wouldn't work for Marvin and me if we didn't BOTH "buy into it."  If Marvin didn't think it was worth it for him personally, we'd go back to in-center tomorrow.

This is a big decision, a big commitment, and a big responsibility for Otto and for you.