FINALLY We Started NxStage Training !!

[Lindia]

Hubby started training on Monday, the 16th.  He is already feeling better.  The last week at the clinic was CRAZY.   He crashed, which he had never done before -  felt like someone was standing on his chest.  He felt he was having a heart attack, and was going to die.  The ONE time he didn't take his cell, this happened.  He was really scared, and was asking for the clinic cell phone to call me.   They would not give him a phone !!  After they had pumped in at least 2 kilos of fluid, the clinic called me, and said he would need a ride home.  When I found out what had happened, I took him to our family doctor, who consulted with his heart doctor, and they feel he is OK.     All this has tipped him into an "anxious" state, and he started having panic attacks ----   Why did this have to happen his last week at that crappy DAVITA clinic in Wichita, KS    ? ! ?   

   Anyway -  he is out of there,   into another clinic, where they are training him.   They have determined that his dry weight was WAY to low, and for the last 2 days, he has been instructed to drink as much as he wants (he still has residual function).  The old clinic had his dry weight at 86.5,  the new clinic is still trying to find out what his ACTUAL weight is -    it only took us NINE MONTHS to get into a class --  I hope all you people wanting to get into home hemo training get in much faster.     

Since hubby can stick himself,  I won't go in for training until Friday, which helps, as I still work full time, and we have a 9 year old adopted daughter.    Thanks everyone for all the information on this site,  you have no idea how much the knowledge here has helped us.  I will chronicle his training as much as possible, to maybe help someone else.   

[amanda100wilson]

 That is great news.  Sounds like the newclinic is better. 

[willowtreewren]

OH, I'm so sorry this crash happened! 

You will be so much better at home! 

Great news! 

Aleta

[ESRD Survivor]

I start training this coming Monday the 23rd.  My husband took off 2 weeks to train with me (He has a lot of time) I am nervous since I haven't learned to stick myself as hubby is not interested in that part.  I hope it works well for you and look forward to hearing about it.  I understand the first day is pretty overwhelming, so i am preparing for that.

[MooseMom]

I am always very eager to know how it goes for all of you who are starting NxStage training.  It sounds so overwhelming.  Actually, I'm sure there are times when it IS overwhelming, but anytime you are trying to master a new skill, you have those sorts of days.

I just keep reminding myself of all of the people who do home hemo, and they are not all medical professionals nor rocket scientists.  If you keep screwing up or having a hard time, they're not going to let you go home until you are ready.  So, that's a good thing to keep in mind!

[Lindia]

I start training this coming Monday the 23rd.  My husband took off 2 weeks to train with me (He has a lot of time) I am nervous since I haven't learned to stick myself as hubby is not interested in that part.  I hope it works well for you and look forward to hearing about it.  I understand the first day is pretty overwhelming, so i am preparing for that.

How long have you been on dialysis  ?   Ron did say the first 3 days have been FILLED with information.  He brought home two DVD's for me to watch,  I tried tonite, but we have 3 little ones running around, and I couldn't really concentrate.   Will watch them again tomorrow - when we just have one kid underfoot.

[Lindia]

That is great news.  Sounds like the newclinic is better. 

Yes Amanda --  at the new clinic, he has an RN, who used to be a surgical nurse, with him all the time he is there.  He feels a LOT better about dialysis where someone is paying attention and focused on him, thinking about his old center just aggravates me.

[lmunchkin]

Yes, that is so true Moosemom.  They will not let you go home until you are ready and in some cases, not at all.  Of all the people they have trained Nxstage at our clinic, only "one" was denied.  The reasons, of course Iam not prevy to, but that is some pretty good stats.

Linda, Im so happy that you guys are doing this.  I must tell you, as a spouse to one who has this,  I was willing to give up the 1st day when the nurse who trained me, told me about IHD.  He said just go and pull up this site and read it.  I did.  I went to the NxStage section and read the founders post and others.

The next day (2nd) I told that nurse, "lets do this".  He said, " you must have gone on IHD last night."  I told him I did, and would continue to do so for future encouragement.  I cannulate my husband now, and its like second nature! I have learned more about this disease since doing NxStage than any other modality we have done.  I am so thankful for that.

My team of professionals work with me to meet his needs, not they tell me what he needs.  We are in charge of his care, they work to accommodate our needs, not theirs.  We go to clinic for check ups only.  We do everything else.

Granted, there is alot more to learn with the Hemo side of Dialysis, but once it "clicks", you can relax and be proud of your accomplishments.  This is no easy feat!  It takes commitment, but Im so very glad I stuck with it, cause now, I GET IT!

You can and will do this, Linda.  And your husband will feel better than he has felt in a long time.  I know, most don't want to Dialysize more, and that is a given!  But understand, the more dialysis the better you will feel.  Now that you are at home, on your own terms, you can work it in to your schedule.  He may have to do it 5-6days a week, but who knows, he may be able to do it like we do, 3 on & 2 off. If his labs reflect so, then he could very well do fewer days.  But then I do him longer sessions too!

ESRDSurvivor, if my husband could stick himself, he would! I use to worry that I may be hurting him, but now, he is so easy to stick. He doesnt use any numbing creams or sprays (never has), he has always had I high tolerance for pain.  It would be best, IMHO, if the dialysor did their own cannulation! Im sure you can't wait till the 23rd, but I do want to say one more thing, please Linda & ESRD, listen to everything they train you.  You will be overwhelmed at first.  But just stick with it, it will be worth the effort, and please, get yourselves some ME time!  Take care of yourselfs too!

I do Love this NxStage.  It is a AWESOME invention and NxStage Support is Excellent!  You will learn that they know more than your actual training nurse once you get home on your own.  I can't brag enough about Tech Support, they know their stuff when it comes to this kick butt machine.

Know that I and others doing Nxstage at home will gladly type you through anything you need to know! And God Bless you caregivers who are
doing this on your loved ones behalf. This disease does affect us too!

This machine is very portable too!  Very easy for traveling.  I do wish it weighed a little less, but 75lbs is not too bad. LOL


lmunchkin
 

[Lindia]

I just keep reminding myself of all of the people who do home hemo, and they are not all medical professionals nor rocket scientists.  If you keep screwing up or having a hard time, they're not going to let you go home until you are ready.  So, that's a good thing to keep in mind!

One of the last reasons we were given on our LONG delay in training - was the elderly gentleman in front of us ---   we were told that he took a long time,  had heart problems, and then returned for more training - and they waited until he could return, rather than start someone else---I hope it works out for him, as I SO despise in-center ...

[Lindia]

You can and will do this, Linda.  And your husband will feel better than he has felt in a long time.  I know, most don't want to Dialysize more, and that is a given!  But understand, the more dialysis the better you will feel.  Now that you are at home, on your own terms, you can work it in to your schedule.  He may have to do it 5-6days a week, but who knows, he may be able to do it like we do, 3 on & 2 off. If his labs reflect so, then he could very well do fewer days.  But then I do him longer sessions too!

I often think of you - you are so encouraging to newcomers interested in NxStage -  I have been mostly lurking here for 9 months, and there is a TON of stuff to know.   My hubby's 1st degree is in microbiology,  so he understands a lot more about "fluid compartments" and "molecules" etc.  More dialysis makes sense to him,  and we want to have as many years together as possible.

[lmunchkin]

Well the thing is Linda, I push this modality, because we have done them all (except nocturnal).  I truly believe in this machine.  Linda, once I got it home on my own (We were excited) I set the perimeters (according to his prescript). But over time, I found that you can tweak here & there and get the same results.

I really have to give my J his dues too, cause he sticks to his regime, that now it is like nothing. Linda, just go and stick with it, if you can't do it then you can always go back to the dreaded Incenter.  As others can attest, WE ARE NOT FANS OF THE INCENTERS, PERIOD!!!!!!  I did not like the way my husband would come out all drunk and barely able to stand up!  They took too much off in a short amount of time.  Thus, the "Washed Out" feeling, the low BP, the cramping ect.....

We just love the home experience and really enjoy each other while doing it.  I can get up in the bed with him and lay beside him and watch TV or play cards or whatever.  You can't do those things in center!  Sometimes, if Im running late from work,  we have dinner while he is on D.  That doesnt happen very often, but at least we know that WE CAN!

I can almost guarantee you Linda, you will not regret doing it at home!  It is just a totally different experience!!
And yes, I will help you with anything I can.  Even give you some really good suggestions one you are home and familiarising your self with it. Just take it one day at a time, and you will be fine!

lmunchkin
 

[rocker]

Yes, the other day someone asked me how I could give up so much time to do this as a caregiver every day.

I said that I think of it in terms of the hours I gain by having a spouse that's functional, instead of living with an in-center zombie.

  - rocker

[lmunchkin]

Good point Rocker.  And isnt your spouse feeling much better?  It was like day & night with mine.  I was literally shocked at the differents it made.  I wish we had started with NxStage long time ago.  He did PD at first, but I really believe, as he is a severe diabetic, that that may not have been the best choice.  But when he was first diagnosed, they were not offering NxStage. But I would choose PD over In-Center anytime.  I know that not all In-centers are bad, but know that they are limited as to what they can & can't do.  Just the way it is!  We just want to be HOME period!

We may never know if he had started with NxStage, if he could have saved his limbs.  But he is sooooo much better now, trust me, I can tell. If he ever passes, it will not be for lack of Dialysis, this Iam sure of.

God Bless,
lmunchkin
 

[MooseMom]

Yes, the other day someone asked me how I could give up so much time to do this as a caregiver every day.

I said that I think of it in terms of the hours I gain by having a spouse that's functional, instead of living with an in-center zombie.

  - rocker

This just shows how people don't understand how ESRD affects spouses, too.  I tell my husband that if he will train with me, thus making it possible for me to dialyze at home and take care of myself, then I will have more energy that I can use to wash his socks, tend the garden, make his meals, entertain him and generally be a much more pleasant person to be around.  Can't argue with that sort of logic!

[lmunchkin]

This just shows how people don't understand how ESRD affects spouses, too.  I tell my husband that if he will train with me, thus making it possible for me to dialyze at home and take care of myself, then I will have more energy that I can use to wash his socks, tend the garden, make his meals, entertain him and generally be a much more pleasant person to be around.  Can't argue with that sort of logic!
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You see what I'm talking about Moosey!  This is a prime example that you WILL DO WELL!  This cracked me up! 

lmunch
 

[Lindia]

I had my first day of training on Friday.  There was a LOT to learn about all the different connections.  I may be going back Tuesday.    I feel like we haven't been able to give our full attention to training, my husbands brother died on Saturday night (he was diagonised with AML leukemia in May)   He was only 55, a mailman, and up until the leukemia, was VERY healthy.  Ron, who is 7 years older, never thought he would outlive his brother.  Its been hard- trying to help him and knowing the end was coming.  He didn't have a caregiver for support, and that made a big difference. I wish I had been able to help more.   If we hadn't been so tied down and unable to be with him for doctor appts- etc  - due to the in-center dialysis and having to focus so much time and energy on that, perhaps he could have had more time.

I am hoping to feel less stress, and be able to pick up more about the machine.  Of course, these next few weeks are the busiest of the year for me at my job, so YEAH !             I can really say that my hubby  feels a LOT better since he started training on Monday.  The daily hemo is much easier on him.   He is drinking a lot, but his weight is going down, one day they didn't pull off any fluid, just purified his blood.  I will update later in the week, and let you all know how the second week of training is going.

[MooseMom]

I'm so sorry to hear about your BIL.  What a terrible thing.  I can certainly understand how that could distract anyone from NxStage training.

I'll be eager to hear about week 2!  I'm thrilled that your husband is feeling so much better!  That's the whole point!

[lmunchkin]

Linda, sorry for your loss! Very sad!!! That has to wear on Ron Im sure because he is the big brother! My younger brother passed away too, & there will always be this emptiness inside. I miss him so much!

Take care Linda, and again, so sorry for the loss!

Prayers to you & Ron,
lmunchkin

[Lindia]

Haven't given an update since the 2nd week.   On Wed. of the 2nd week, we had my brother-in-law's funeral, and then a family get together at our clubhouse.   The next day, around 3:00 - my hubby starting having severe pain, and really bloody urine.   Off to the emergency room we go, and he is admitted to the hospital at 1:00 in the morning with a really bad UTI.   He has chronic bladder infections - and they flare up occasionally.     He had noticed some swelling in his tummy area, and didn't realize what it was --   he had an bacteria that was producing gas, and it was swelling up his bladder ---  this was a new one !!   

The most unfortunate part of all this (other than the pain)  was that he was dializied in the hospital for 2 days, and he was infiltrated ---   we had been starting new buttonholes at training, so didn't want someone else sticking them,  they tried to stick his old buttonholes, that hadn't been used for 2 weeks, and couldn't get them,  etc.    So- now his arm is a bruised up mess.  Got released from the hospital on Sunday afternoon,  went back to training on Monday,  and tried to run, but never could, due to high venous pressures --  was able to run today, but had to stick high up, to get around the infiltration and bruising.

We did go to the vascular center, and they did a sonogram of his fistula to check it and give suggestions on places to needle, but it seems like a crapshoot for the moment.      Things were going well -  until the hospital infiltration.     

Has anyone had buttonholes close up in 2 weeks  ? ?    His old ones seemed to,  we thought the track would stay, but he is a quick healer.     Anyways -  in the 3rd week,   the training seems to be going good, but we wouldn't be able to handle all this complicated needling from the infiltration if we were already at home,  so that is a little worrisome.   

[lmunchkin]

Yea, I bet that is worrisome.  His infiltrated fistula will get better with time though.  I really don't believe they will release him to home, or they will come to your house to cannulate him until you or him get comfortable with it. 

Venous pressures always seem more difficult to get right.  I know sometimes I will get a yellow 21 alarm on mine, and just back the needle a little out and it seems to clear it up!  Hang in there Linda.  You are going to get through this, just be patient.  You see, even some nurses can't needle, so you know if they goff up, then yall can goof  up sometimes.

It is so very overwhelming at the start, but will get better over time.

Hope todays training went better!

lmunchkin
 

[Lindia]

We are in our fourth week of training.  The NxStage machine was delivered on Friday, and we had a plumber hook up the connections for us on Saturday.    We are now waiting for an electrician to put us a new outlet on the wall in the master bedroom, we only have one outlet on that wall, and I want to have a new one just for the machine.  We are getting more comfortable with the machine.   

The new buttonholes that were started after the hospital infiltration worked nicely on Monday.  Yesterday, hubby tried to stick himself, but needed help - as he doesn't have the angle down yet.  Wish us luck--  we don't want to mess up these new buttonholes ! !     It seems like to us - that the needling is the hardest part,  when we lick that, all the major stressful stuff will be done.    (we hope)     

[amanda100wilson]

Great to hear that it's going well. 

[lmunchkin]

GREAT News Linda. Now Ive never done buttonholes, but it seems to me, that some one on this site would mark the vein so that they would follow the mark, or something like that.  I could be wrong on that.  When someone does his botton hole ask if they could use a permanent marker and mark the entry angle for him.  That may help him to guide it in on his own.

Does that make sense?  Well at any rate, good to hear it is all going well!  When you guys get home on your own, without someone watching all the time, you can relax and enjoy each others company!

Im always proud to hear of those who take on this huge endeavor, You should be proud of your accomplishments too! This stuff ain't easy! But once learned, it get much easier!


Hang in there girl!
lmunchkin
 

[Lindia]

Latest update - -  I'm writing on my second day at home with NxStage.   Friday was the first day at home, and our nurse stayed with us for the whole treatment.   She got our unit running and programmed some of the settings, and helped hubby stick.  Things went well.

    Today on Saturday, was our first day at home ALONE...    not so smooth         We are using bags for the first few days at home, and I didn't train on them very much.   Had lots of problems, and finally had to call tech support - (they were great)  and I had to put in a new cartridge and saline bag and start over.   Started at 9:30, and didn't get the machine finally running until 12.   Hubby was able to cannulate himself, thank goodness,  because if he couldn't have got the new buttonholes stuck - that would have really been the pits.   Had to call tech support again, as I made more mistakes, but finally at 3:30 -  we were DONE !      The weird part is -  I could do it great in the center, but doing it totally on my own - was scary, and I am a 57 year old mother, who thought I had nerves of steel.   

I don't think I'll make the same mistakes again       and hubby thought it was a good run, he is being more level headed than me and says in a couple of weeks we will have it down pat.    I SURE hope so, almost all the time he was having dialysis at the training center there weren't any problems, so I know intellectually that it works great, when you know what your doing - but there is a LOT to know. 

[amanda100wilson]

I was very fortunate to do all my training in my own home; I think that this makes a difference because it means that there isn't a sudden transition to getting used to the differences in arrangement with chair, lighting etc.  saying that, the first part of my training was done in the basement as my chair hadn't arrived and I couldn't access the contols on the machine because I was too low relative to the machine, so I think that I missed out there, particularly as my goal was to be completely self-sufficient, with my husband only helping as necessary.  Not quite there yet on that, as my fistula is very positional and sets alarms ringing the moment I move.  I still haven't quite worked out the logistics of adding the iron to the pigtail yet without setting off a cacophany of alarms.