I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Spouses and Caregivers => Topic started by: looneytunes on February 01, 2012, 06:26:09 AM
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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.
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Oh, Looney.... :grouphug; :grouphug; :grouphug;
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.
:cuddle;
I know you will carry on, but I just wish things could be easier.
:grouphug;
Aleta
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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.
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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
:kickstart;
P.S. We need a smiley with a SHOTGUN!!!!!
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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 :pray;
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Can't elaborate on any of the above posts, but am sending some very special *huggles* in your direction.
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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.
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So sorry, Looney. Sometimes it seems like nothing can stay put for very long.
:cuddle;
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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.
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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! :rofl;
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.
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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. :cuddle;
Keep us posted on his progress.
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:grouphug;
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.
:grouphug; :grouphug; :grouphug;
Aleta
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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
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Loon, fingers crossed for to-morrow. I hope things go OK. Take care driving.
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Thanks friends. I'll let you know how it goes.
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Good luck. Hope everything works out. :cuddle;
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:grouphug; :grouphug;
thinking of you, Looney.
:cuddle;
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Looney, how did yesterday go?
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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.
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Oh, that sounds good. And I hope he gets used to sleeping during the treatment.
:cuddle;
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Looney that is good. Thanks for letting us know. You take care.
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thanks for checking in loon... I sure hope that this will be your 'answer' for a good while.. :pray;
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Sounds like a step in the right direction. I'm eager to hear more from you as time goes by.
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:thumbup; :yahoo; :2thumbsup; :clap; and of course :grouphug;
:pray;
lmunchkin
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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. :pray;
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Fingers, legs, arms all crossed.
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:grouphug; :pray; :grouphug; :pray; :grouphug;
Lots of hugs, Looney. Lots of hugs.
Aleta
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oh please let this be just a fluke and not something bad... :grouphug; :pray; :pray; :pray;
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Add me to the good thoughts coming your way. That sepsis threat is always nasty. Here's hoping the antibiotics gets whatever it is quick.
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Thinking of you both and hoping that things improve very soon. :grouphug;
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Well, night # 3 is over. He still did not sleep at the clinic so we are back home and he has crashed out. Blood cultures are clear so far but we have to wait another 48 hours for them to finish growing them out. Hubs is still not feeling too good.
Thanks to all of you for your encouraging words, thoughts and prayers. :grouphug;
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:thumbdown;
You both need some rest! :embarassed:
:grouphug;
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Do you know that when you want to stick with your neph. That as long as they are willing, that they can get privilages at dialysis units that they currently aren't with. My neph. Did that. I liked him but not the dialysis unit, so I stuck with him and he got admitting privilages at the one that I wanted to swap to.
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Looney, how are you holding up? What do you do while he is at the clinic?
Thinking of you,
lmunchkin
:kickstart;
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Oh Munch, I'm doing all right for now. Tired of looking at the windshield though! :rofl;
I drop him at the clinic at 8:30 p.m. and head for our vacation home which is about 40 minutes from the clinic. Get there around 9:30....Take a shower and fall into bed...up at 4:00 to pick him up by 5:30 a.m. So far, I am thinking he seems to be feeling a little better. May be wishful thinking but we'll see.
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Hopefully not wishful thinking. :cuddle;
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Looney thinking of you both.
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you've been on my mind too Looney. Sounds do-able for now and if it works, will be great!! We all wish you well and hubby too. Im glad at least he's in for a good amt of time. The 5 min drive too and from D (when incenter) even got to me :o But that was only when he started to feel so lousy that it was a drag to go as i knew i'd be dropping off a seemingly well man, and picking up an illish one :( I so hope this turns out good for you guys. It will make it all worth while... :cuddle;
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Hope everything is going okay in your world, looney.
*huggles*
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Thanks, my friends, for all your support. We have now completed week #2 of this "trial" period. Last night, our neph was in the clinic and in listening to he and hubby's conversation, it sounds like hubby may want to continue this indefinitely. He has had a couple of good days this past week (My definition means that he felt like doing something besides just sleeping or watching TV) and that's better than it has been for the past several months. His main complaint is that there is no bed for him at the clinic, it is a chair with some extra cushions. He feels like he might sleep better on D nights if they had beds.
We are starting to transition into a move to our 2nd home (which is only about 30 miles from the clinic) and though it will be a slow process, my mind will be more at peace to be closer to medical care for him.
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Im glad it still seems to be working for him . I think in time, once your closer and all, it will give you a whole lot of reliefe. It's hard to deal and accept our 'hand' when they're stable much less NOT stable as you have had to deal with. We too lived on our ranch an hour away from any town for 20 years and it was wonderful but to do it alone..whew! . Thank The goood Lord we did 'our' move closer in to town, because that drive to dialysis (before Nx stage) woud have been a bear!! I wish all the best for ou.
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all the best Looney,
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I know the farm was important to your husband. How is he taking to the idea of moving to the closer home? :cuddle;
If he is feeling better and able to do more, perhaps the trade off will be worth it for him. And for you, too. And perhaps there is a bed in his future.
:2thumbsup;
Keeping you both in my thoughts.
Aleta
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I think you are so right if you can pull this move off. You will feel better not having to drive all that way two or three times a week and as you said you are a lot nearer to the facilities. I say go for it. Will some one be able to look after the animals for you?
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It should make it easier on both of you being closer to the dialysis clinic. When hubby was doing in center dialysis he had about an hour and 15 minute drive to get there. He spent 4 hours 15 minutes on the machine and about 3 hours driving 3 days a week. He found the drive worse than the dialysis. If he hadn't started home hemo I would have applied for a teaching job in the town where the dialysis unit was and we would have moved.
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Can anyone explain to me why patients doing nocturnal in-center have to "lay" in a chair, and how that is done? How can you lay in a chair? You can recline, but its not like laying. My husband lays in his bed or sits up if he wants. I don't understand why they don't furnish beds. What if the patient brought their own beds, would that satisfy these people.
Jeeze, why can't they at least allow yall some leave way. Looney, you mean He has to wait for a bed to come up? That just stinks!!!!! Its a damn shame he couldnt do the NxStage. If he had had good access, it would have been good for him.
Hope all is well with you my dear. Think of you often!
God Bless,
lmunchkin
:kickstart;
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We have now completed week #3 and are starting week #4 tonight. There is no longer any doubt in our minds that hubby is doing much better. He is having more good days than bad days. Believe me, this is SUCH a welcome change. To see him with a little energy and a desire to be more active is heartwarming. He has now decided he will continue nocturnal indefinitely.
There are still some fistula issues and we have a fistulagram set up for tomorrow morning to see what can be done.
I'll keep you posted as I can. I hope to have internet service at our new location by the end of the week. Hugs to all of you! :grouphug;
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This warms my heart, it does.
I hope the fistulagram goes well. :2thumbsup;
Aleta
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Fingers crossed loony,
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Me three. When they start having more good days than bad, anything you have to do seems like a small price, doesn't it.
Don't understand the whole bed thing either. Don't they want you to sleep through nocturnal? I mean, gotta to be hard enough in a centre as opposed to at home, but I know I couldn't sleep reclined in a chair.
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:2thumbsup; Hope it continues like this.. So glad to hear it's doing 'its job' and he's feeling better. Oh i hope it gets even better and you can have a p;iece of your life back :) :grouphug;
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So glad the nocturnal is doing him well. I wish J. could do it at home, but with me working and doing him afterwards, it really makes it hard. I have been thinking about doing him 3 on 1 off, instead of 3 on 2 off, but his clearance is teetering, so maybe not yet. His labs are still good and he is happy! Besides, it will have to come from the neph or clinic, cause Im not going to stipulate anything to him.
Sounds like thats the ticket for your husband. At least you can get some me time now! :popcorn;
Congrats, Looney, :wine; I knew nocturnal would be much better!!!!
God Bless,
lmunchkin
:kickstart;
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Update....hubby has committed to nocturnal and is still doing great. The difference in him is amazing! He has done more in the past 3 weeks than he was able to for the past several months.
The fistulagram showed the same area in the SVC with narrowing, it was ballooned out and the flows are better. So life is good in Looneyville. :2thumbsup;
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Such good, GOOD news!
:2thumbsup;
:grouphug;
Aleta
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This is great newsI :) And............. i dont remember what his scheduling is as far as how many days does he go in. Im still thinking of stretching Bo's treatments behond the 4 hrs we do now to 6 if that would mean more days off :) we do 3 on 1 oFF and that was a GREAT incentive to go to 4 instead of 3 hr runs, now if it could get even better.... hum :)
Im sooooooooooo happy for you!!!
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Great news, Looney. Hopefully his access will remain open and allow good flow for greater cleaning! I know you are releaved now. Sooo happy for you and hubby!
God Bless,
lmunchkin
:kickstart;
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Just an quick update for those who have followed this thread. Hubby is still doing MUCH better on nocturnal than he did with home-hemo. His labs are great and his clearance (kt/v) is much better. He has gotten used to sleeping there and is now able to drive himself there and back most days.
And I also am doing much better without the constant stress of daily treatment at home. Though I would do it again in a heartbeat if that was what he needed, I must admit that always being on "alert" was more stress than I thought. Sometimes you have to step out of the hole to see how deep it really is and that's what has happened here.
We took our first trip last week and he dialyzed as a visitor in a clinic twice. Though he did not feel as good on the 4 hour run as he does after nocturnal, he still was able to participate and enjoy the time we spent away. We are looking forward to another trip in a few months.
Love to all. :grouphug;
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Oh, Looney! This is music to my ears. I'm so glad that you have found yourselves in this better place. :cuddle;
:2thumbsup;
Aleta
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Oh, this is just terrific news, it really is! You both must be so relieved! Well done! I want more updates, please! :2thumbsup;
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Brilliant news looney.
*huggles*
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AWESOME Looney! This is exactly what he needed and happy the two of you got away! Good eye & Good Job!!!!
lmunchkin
:kickstart;
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Looney, I am so pleased for both of you.
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Wonderful!!! :yahoo;
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Another update for all of my IHD family....things are still great. Nocturnal has given him his "man" back. He is SO much more active than he was before. He is able to do physical work several hours a day now and though he still can not walk any distances, he is doing so much better and I am continually amazed. Thank God for nocturnal! I know that the "other shoe" can fall at any time but I am so very thankful for the good time we are having right now. :grouphug; :grouphug; :grouphug;
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Wonderful, wonderful so glad things are going your way. Dont let him wear his self out.
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So thrilled to read this news. :grouphug;
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oh boy!! so good to hear this :bandance; Sure is a push for nocturnal!! It's gotta be super for him and YOU!! All this and his' going 3 nights?? wow! what ever it is, how wonderful :clap;