Another Turn in the Path

[looneytunes]

Well, after just under 2 years on NxStage, hubby is not getting adequate D again.  So starting next Monday he is switching to in-center nocturnal.  While this seems to be just another turn in our path, it is a little more complicated than it appears.  The only clinic offering this modallity is about 120 miles away from our home.  So for a month (trial period to see if it makes him feel better) we will be driving back and forth.  We do own a 2nd home a little closer and I will sleep there the nights he is in center.  If he truly feels better and thinks this is the way we should go, we may have to sell the cattle and move to the lake house.  While that may sound really attractive to some, he is not so inclined.  I know that whatever happens, happens.  But for him, this is a pretty big thing.  Farming is his life and dream and even though he is not able to do much of the actual work, giving it up has a "finality" to it that he is struggling with.    The other options for us are to switch to a K and continue to do home hemo or go back to clinical hemo which has always made him feel really bad.  And that one would still have to be in a clinic 100 miles from home if he wants to stay with the neph he has always had.     

The choices are his and he knows I will support whichever route he chooses but right now it's just a huge elephant in the room.

[willowtreewren]

Oh, Looney....   

What a hard thing to have to face.

What if the nocturnal does the trick? Any chance of doing that with your NxStage at home? If your neph would support it, he could write the script for NxStage.

 

I know you will carry on, but I just wish things could be easier.

 

Aleta

[MooseMom]

I agree with Aleta...do you think doing nocturnal at home with NxStage could be the answer?  Like she said, all the doctor would have to do is write a script for it, and you would probably need a heparin pump.  Other IHDers would know more than I do.  I can't see where he could ever get adequate D in clinic unless it was true nocturnal.  Sometimes the clinic will label it "nocturnal" but it really isn't...it's just a bit extended and it is done at night.  It's not nocturnal in the say, say, Desert Dancer does it.

[lmunchkin]

Oh Looney, I hate this for you and hubby.  Yall been through the ringers for sure.  I would love to "Shoot that Damned Elephant" trouncing all over your lives!!!!  You know good and well we are here for you through it all.

You have been a pillar for him & he knows it.
lmunchkin
 

P.S. We need a smiley with a SHOTGUN!!!!!

[boswife]

Doggon it loony, How much more huh?  I hope that mabie just mabie you could do the 'extended' at home be it night or day..  I am going through some of the awful "giving up on thing" THING with hubby.  Were finding theres just things we cant do or have anymore and it hurts him BAD.  Me, i go with the flow way easier but i hurt so awful bad for him.  It's so up and down right now so im having some of the same issues and it's hard... Im so sorry and hope you find some answers that will suit him and you both..  Bless you and 

[Poppylicious]

Can't elaborate on any of the above posts, but am sending some very special *huggles* in your direction.

[billybags]

Looney, I am so sorry to hear this. I don't really know what to say. You have both been through so much, how are you going to cope driving all that way and back, I want to scream for you. So OK I know you will cope with this, as you have coped with lots and lots of things.I really hope it makes him feel better. You take care my friend. Sending lots of hugs.

[drgirlfriend]

So sorry, Looney. Sometimes it seems like nothing can stay put for very long.
 

[bevvy5]

What an appropriate title for your post.  The US systems are different than ours here in Canada - no NXstage here but nocturnal is definitely the treatment modality of choice.  I hope you can work out a way for extended hemo. 

But it seems we're all always waiting for the other shoe to drop, doesn't it?  Take care - drive safe - that's an awful lot.

[looneytunes]

Thanks for all the encouragement.  Doing nocturnal at home at this point is not working for me.  Hubby is a very active sleeper and I don't think I could sleep at all with him hooked up and thrashing around with needles in him.  He takes meds to help with this but it does not stop all of the activity.  He has thrashed himself out of bed more than once in the past few months.  What a rude awakening for us both...him on the floor and not sure how he got there!      

NxStage is pretty well over for us per the neph unless hubby wants to run 6 days a week.   As of now, he has been running 4 hours a day, 5 days a week, 30 liters.  And that's a lot of chair time. 

The nocturnal as we understand it right now will be a full 8 hours of run time on a K machine.  Total time in the clinic is supposed to be about 8.5 hours with hookup and rinseback, disconnect.  So...come Monday, we'll see how it goes. 

[MooseMom]

Well, that sounds pretty hopeful.  I sure hope it works out for you.  Home hemo isn't for everyone.  You gave it a shot; that's all you can do.

Keep us posted on his progress.

[willowtreewren]

 

Carl never really wanted to do nocturnal with NxStage, either. I'm sorry it didn't work out.

I can only hope along with you that this new process does the trick.

 

Aleta

[lmunchkin]

Man, I really hate to see you have to drive so far for In-center, but if nocturnal doesnt do it, girl, you have no other choice!  Damn, Looney, I really feel for you and hubby. Be praying the nocturnal works.  If they are going to have you do Baby K, doesnt it require different hook-ups in the plumbing & electrical?  Our clinic offers it, but we're doing real well with NxStage.

I just feel sick for you guys!
lmunchkin

[billybags]

Loon, fingers crossed for to-morrow. I hope things go OK. Take care driving.

[looneytunes]

Thanks friends.  I'll let you know how it goes. 

[del]

Good luck.  Hope everything works out. 

[willowtreewren]

 

thinking of you, Looney.

 

[billybags]

Looney, how did yesterday go?

[looneytunes]

Well, we are home now (back at the farm) after our 1st night on nocturnal.  He slept a little but not much but overall the experience so far is good.  I am so hopeful this will make a difference in how he feels. 

[willowtreewren]

Oh, that sounds good. And I hope he gets used to sleeping during the treatment.

 

[billybags]

Looney that is good. Thanks for letting us know. You take care.

[boswife]

thanks for checking in loon...  I sure hope that this will be your 'answer' for a good while..   

[MooseMom]

Sounds like a step in the right direction.  I'm eager to hear more from you as time goes by.

[lmunchkin]

       and of course 

 
lmunchkin

[looneytunes]

well, last night was #2 in our nocturnal trial.  Hubby still was not able to sleep in the chair.  Also, he had a temp and an elevated heart rate.  Blood cultures drawn and a big dose of Vancomycin given.  I sure hope we are not in for another round of sepsis.  Maybe the Vanco will do this trick early and no run to the hospital is in our near future.