I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: Lindia on January 18, 2012, 05:02:36 AM
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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.
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That is great news. Sounds like the newclinic is better. :bandance;
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OH, I'm so sorry this crash happened! :banghead;
You will be so much better at home! :2thumbsup;
Great news! :clap;
Aleta
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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.
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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!
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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.
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That is great news. Sounds like the newclinic is better. :bandance;
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.
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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
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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 ...
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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.
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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
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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
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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
:kickstart;
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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! :P
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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! :P
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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! :rofl; :clap;
lmunch
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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 ! :sarcasm; 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.
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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!
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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
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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. :waiting;
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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
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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) :2thumbsup;
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Great to hear that it's going well.
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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
:kickstart;
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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 :pray; 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.
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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. ???
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oh boy amanda,,, i wish we coud have trained at home!! the transistion was very hard for me :( Might i ask what you got for your chair???
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http://www.championchair.com/?t=special&productid=17.
Link to the chair that I bought. It is a clinical chair, as I wasn't to bothered about it's appearance in my home as it's out of the way in our bedroom. Does Trendelenburg and I actally find it very comfortable. I got a navy one.
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oh boy amanda,,, i wish we coud have trained at home!! the transistion was very hard for me :( Might i ask what you got for your chair???
I'm envious of people that trained at home also --- Maybe 3 weeks at the center and a week at home - in my case, I think that would have been ideal , the transistion is HARD !
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I remember the frustrations I had when trained too. It wasn't easy for me either. Thanks for hanging in there Linda!
lmunchkin
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Linda, i think i can clame the spot for the biggiest scardiecat... :rofl; I went from full on confident that we were 'going to do this' to a trembling fool for 5 months...lol I 'got it' fine, but my nerves just wouldnt settle and that was the worst of it. (let me tell you though as long as im claiming my fears, i have anxiety issues that kicked in full force and being a drug phob, i couldnt do much about it but 'shake' my way through it ::) ) It is such a great thing to see how wonderfuly put together it really is (now that i can see through the fog) and am so unbleaveably proud of us, and happy that we we're home. Wouldnt give it up for anything (well, of course unless he had to for some other reasons)
also, (as i think i just saw you over there) I got emence help from whats now "home dialysisors united"? (geesh is that the name..lol,,just changed the name from nxStage users) They were right there when i needed them. Increadable bunch of people! And i second the Tech support!! AMAZING!!
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I've been in-clinic for a few months and just got the OK to do home hemo training. Does anybody know why my nurse would say I have to run at 350 to go on nxstage? I'm doing 300 in the clinic.
thanks! :sir ken;
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Is it your 'in center' nurse? They dont really know/ understand NxStage. She may be saying that to get the same amount of blood processed (or some other such thing ) you would have to run at a certain number.. I run Bo at 300 for four hours, and others run even slower and longer, and some faster and shorter etc. It's all about YOU and how you handle this. You'll LOVE NxStage. Took a bit longer for me to 'LOVE' it, lol, but it is lovable ;)
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It was part of the call from the home therapies nurse. I got the good news that I'm OK'd for home hemo, then I was told I need to get my BFR up to 350 (I've been doing 300 in the clinic with good results) I said OK, because I'm not going to do ANYTHING to keep myself off home hemo. But I know for a fact that you don't HAVE to run at 350 on nxstage. So, I'll just talk to the doc about it. I've learned not to get belligerent with the nurses because most of them are already on my side (and I love them for that). I feel it's likely that this is just one more "policy" that the clinic has, probably something to do with keeping stats up or something.
I think if I run for 2hrs and 20 minutes at 300, isn't that the same as running for 2hrs at 350?
If anybody know that that's how it works, please let me know!
Thanks!
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Fearless, it is not uncommon and really fairly ordinary to run at 350 BFR. I can run J at 300 to 400 if I want. My norm for him is 350 to 380. I would just do it like they say cause once you get home on your own, then you guys can figure out what's best for him. If they tell you to go over 400BFR, then they are wrong, period. They are thinking In-center and not NxStage.
Just take them up on their offer. You are right in just listening and not creating flack. Just learn all you can (It is very hard at first), then when you get home, you will learn alot by doing. Im not going to lie, you will be all nervous, and that is understandable! But when those problems arise, rely on NxStage Tech support! They are the best!!!
After you get use to it, you will begin to see, what you "toggle" in the variables, will begin to click. You will see that certain things that you adjust will have different outcomes! I know this is not making any sense right now, but it will!
Yea just comply right now and everything will fall in place! So glad to hear you are going to try this, Fearless! Kudo's to you!
God Bless,
lmunchkin
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I think if I run for 2hrs and 20 minutes at 300, isn't that the same as running for 2hrs at 350?
If anybody know that that's how it works, please let me know!
Thanks!
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It depends on certain factors. Yea, it seems the way you indicated, that that would be logical, but you have to figure certain variables in there. It based on amt of fluid to be removed, how many liters required to remove the amount, what FF (flow fraction) is allowed....ect. Like I said, there are alot of variables envolved here and you will be trained in those.
Fearless, there is no doubt, if you are commited, that you will do very well with this. You will see a big difference in health, heck, you will see or feel it when entering training and they start to D. you!
Good luck & please keep us posted!
lmunchin
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Fearless, it is not uncommon and really fairly ordinary to run at 350 BFR. I can run J at 300 to 400 if I want. My norm for him is 350 to 380. I would just do it like they say cause once you get home on your own, then you guys can figure out what's best for him. If they tell you to go over 400BFR, then they are wrong, period. They are thinking In-center and not NxStage.
No, you're wrong. I run at 450 at home with no problem. Those were the instructions from my clinic.
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I always found higher speeds did not help...... My pressures would be too high for me to do anything....like work on projects , do computer work , beading , tying flies..... all that stuff when your sitting there..... so I lowered my blood flow speed so that my pressures would stay with in the limits so that I could get up and move around and do projects...... so I would have to stay on the machine a while longer but I was ok with that.....anyway....slower dialysis is better and way much better on your veins...... after two years of doing home hemo most doctors cant believe that I even have a fistula....... WE just need to do what is best for us...... my clinic at first wanted me to run fast and I was told to not move my harm at all for the three hours I was on the machine..... well since they were new to Nxstage..... back then they didnt know..... now they run everyone at a slower speed...... its all about keeping the pressure low.......
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John, there are good reasons why people want to run at lower blood flow rates. I am not saying that you cannot run at 450 but longer, slower dialysis gives better clearance of middle molecules and helps preserve the fistulabecause there is less turbulence with lower blood flow. My nurse wanted me to run at 500, but whenI questioned this, he agreed that it was ok to reduce the BFR. You seem to be very trusting about what you are told from your dialysis unit. I suggest caution. There are plenty of us around who have missed diagnoses and poor adviice in the past from 'so called experts' and treat a lot of information with scepticism. I am not saying that I do not discuss with my nurse, but I also know that his expertise with NxStage for chronic renal failure is limited. Example: short needles met with scepticism, but I insist that I want to use them. We do, and now he is using them with other patients.
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like the short needles....... I have a upper arm fistula and I was using 1.25 inch needles in one of my button holes.... and then in the other I used a much shorter needle...... they had to order needles for me .... everyone else seem to use the same size of needles untill I suggested something different....also instead of the 12inch long tube needle, medisystems makes a 16 in longer tube needle set which was way easier to use and this allowed me to pull my own needles...... many clinics dont use those....but they are available..... and they have blunts too so for those who use buttonholes lke me it was great....... I used the same two buttonholes the whole time I was on dialysis which was two years......
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Fearless, it is not uncommon and really fairly ordinary to run at 350 BFR. I can run J at 300 to 400 if I want. My norm for him is 350 to 380. I would just do it like they say cause once you get home on your own, then you guys can figure out what's best for him. If they tell you to go over 400BFR, then they are wrong, period. They are thinking In-center and not NxStage.
No, you're wrong. I run at 450 at home with no problem. Those were the instructions from my clinic.
Oh thanks JJ. I had forgotten your expertise there! So I will immediately go against my nephs recommendations, and run him 450 to 500 and blow his veins out! Thank you so much for your input and advise!
God Bless,
lmunchkin
:kickstart;
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Hi All - we are onto our 10th day at home. Some things are getting easier, haven't had any alarms in the last couple of days. Most of the alarms we've had were due to oversights on our part, like not unclamping when necessary. I feel pretty tired - a lot of the time - as I work a full time job, and the dialysis takes around 4 hours, so, its like a 12 hour day. Add a 3rd grader and a home into the mix, and theres a lot going on.
Hubby wants to take over the set up, etc - but he is feeling more tired since we came home. I'm not sure what is up with that, he has a chronic bladder infection, that he was hospitalized for in training, and I'm wondering if its still affecting him. When he had his urether stents replaced last week, they put him under deep anesthia (for a 12 minute procedure !?) and we had to stay at the hospital for hours, because his heart rate was low - its like I can't let him out of my sight - everytime before, he's only had the lightest anesthia. Anyway, he is on a prescription of 25 liters, and I wonder if that is enough ? He's 6'3, 84 kilos - would appreciate any input --- THANKS ALL :thx;
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chiming in here.
there are those who insist running at higher pumps speeds works good for them. and maybe thats so. but medically it doesn't line up.
to remove the larger waste, the dialysate has to cross the mebranes into the cells and pull it back and across again.
this take TIME and slow, gentle process.
think of what your kidneys would do if they were working. they would be slowly gently filtrating. not the hoover vacuum.
think of the Bounty paper towel approach: you have a spill, you grab a paper towel and swipe the spill. you get some but not all. so instead you lay the paper towel on the spill and leave it set. come back in 10 mins or so, it has soaked up all or most with little residue.
running at high speeds is harsh on the body and the access. perhaps there are some who do this with no issue but by and large this doesn't seem to be the case. even a good Neph will tell you the same.
Davita won't approve nocturnal at home, but we just do it for longer time at slower speed, slower FF and UFR.
i didn't ask. we just started doing it. within 5 days all the critical labs came back perfect.
when dh was in center, all the patients came in like sheep. no or few questions, didn't want to educate themselves, no changes. just come in and do as they were told. how many have died this last 12 months?
it seems to be an average of 1 a month. could any of this have been prevented? possibly. adter being at home with this, vs at center, i have some strong feelings about it. i almost look at what the clinic is doing as offing these patients by the treatment they give.
we just found out our clinic is now running a 3rd shift. it was too much like an assembly line. still is in my book and home hemo is superior.
dh does his own sticks and can do all his tx himself start to finish. but if i'm there, i am expected to assist.
if he has to go in hospital, we will enforce the rule that only he sticks himself. it really takes getting to the point of caring more about the damage the patient/caregiver get to take home, vs "offending anyone.
you will get there.
ps: ask for conscious sedation. general is for heavy duty stuff. don't take no for an answer.
on the script: dh is 6ft, dry wgt 210 or so. he uses 25 L, 33 FF, UF at 1.25 or less, and BFR at 350 till he takes off the fluid (comes off fast) and then slowed down to 300. he never takes more than 3.3K off, usually 2 or so and would be less if he watched his drinking more. we run 6 days a week. 4.5 hrs a night. i'd like him to go longer just a couple days a week but the chair time is hard.
we also put 2cc of heparin in the filter before priming, works great! use the bigger syringe and leave it on there to aspirate the air in filter when the prime is done.
snap and tap: we set up the machine sometimes hours before treatment. don't do snap and tap as air has chance to rise thru the lines and its not needed.
keep a check on that dry wgt. if his BP is good, he looks and feels good, its probably right. in the beginning they had his dry wgt 93K, way too low.
in no time at all you will get the hang of this. had i known what i know today, we would have went straight to home hemo. he just got his permacath out and he was able to go swim and hot tub at the hotel for the day.
carrying around 2L of fluid in ones abdomen and wearing the "PD" pants was miserable.
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Noob, there you are!! :yahoo;
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hey MOM
have had 2 months of hell. unrelated to HH.
yes still here. i missed you.
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hey MOM
have had 2 months of hell. unrelated to HH.
yes still here. i missed you.
Oh no. I have been afraid of this. I don't like it when you are away for any length of time. I've missed you, too.
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sent you PM
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Almost universally in all NxStage home dialysis training centers, the very first thing that the nurse does is crank up the blood flow speed to "help" the patients. Evaluating blood flow rates (BFR) between other nations is very enlightening. The nation that has the lowest BFR in the world is Japan. They also have the highest dialysis survival rates as well. Very little is written in the medical literature on the effects of high BFR on fistula longevity, but the nation with the highest BFR has the lowest fistula survival. I believe but cannot prove the correlation between these factors.
For myself, I run at 350 ml/min BFR. I find it very disconcerting the number of patients doing well at 400 ml/min that get told to crank up the treatment to 450 or beyond even to 500 ml/min. I personally believe that this is harming patients in America and is due to our short sighted vision of dialysis as a treatment to endure instead of a treatment to revive. Time on dialysis is much more important in many people's eyes than urea clearance. Kt/V simply doesn't correlate well to survival once you get past a set minimum. America has fallen to the erroneous conclusions of the NCDS but Europe and Australia among others did not accept that flawed studies results. Japan has rates as low as 200-250 ml/min. After all, how can you argue with success.
It is time for the so called experts to step outside of the American short sighted egocentric dialysis culture and open their eyes to how the rest of the world approaches dialysis. After all, their patients survive much longer than those here in America.
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but Doc, if the speed isn't high enough, they won't be able to fit that 3rd shift in..
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Hemodoc, how did you arrive at 350? Was it just trial and error, or had your neph suggested this BFR?
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Hemodoc, how did you arrive at 350? Was it just trial and error, or had your neph suggested this BFR?
I run 40 L of dialysate, pretty much double the recommended dosage I was advised. 20 L just wasn't anywhere near enough for me. I almost gave up on NxStage. I went to 30L and then came back a month later and asked to go to 40L. Thankfully, my nephrologist understands that more is better.
To get 40 L in 4 hours, I run at 45% FF. Understanding the issues of high blood flow, I run at 350 ml/min which gives me 4:23 minute session. That is getting to about the limit of a heparin bolus. So that is how I got to this combination. Seems to work well for me so far. Most that do nocturnal run at 250-300 ml/min for 30- 60 L of dialysate. The Japanese experience suggests the lower the better. Interestingly, Japanese dialysis patients have a lower Kt/V than American patients. I believe we are chasing the wrong thing here in America thanks to the wildly erroneous conclusions of the NCDS.
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Wow! Go Hemodoc!
I would like to do longer slower dialysis. But first I need to get "out there" on home hemo.
i have a lot of questions about it, but hopefully they'll be answered in training.
I guess, once again, I'll be spending time here to learn about the "right" way to do things! :)
For those who are concerned about people defying their clinics: I would just say, if it's me or them, I'm taking me! And what I've found is that the people who are actually one-on-one with me (nurses, doctors) they actually WANT what's best for me, but they are having to work within a certain paradigm that actually forbids them from changing anything. However, I've never once been threatened or punished for doing anything that ends up improving my lab readings. Everybody likes good lab readings!
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Most home hemodialysis clinics just continue the American faster and faster way of doing dialysis when patients go through NxStage training. I believe the data does not support this approach. Defying your clinic is not a winning solution in the end since we can't prescribe our own dialysis. We are stuck in this relationship. I have instead tried to work with my team, not in defiance, but in the end they let me do what I want to do anyway. :bump; :2thumbsup; :yahoo; :clap;
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Most home hemodialysis clinics just continue the American faster and faster way of doing dialysis when patients go through NxStage training. I believe the data does not support this approach. Defying your clinic is not a winning solution in the end since we can't prescribe our own dialysis. We are stuck in this relationship. I have instead tried to work with my team, not in defiance, but in the end they let me do what I want to do anyway. :bump; :2thumbsup; :yahoo; :clap;
This is exactly what Im doing Doc! I have been doing him for so long at home that they allow me to do within their perimeters. We have a very good relationship with Neph and our clinic. They know that I will do what's best for him! My neph is like yours, she has a clear understanding about High BFR. If I ran J at 450 to 500, I really don't believe his heart could take the pressure.
God Bless,
lmunchkin
:kickstart;
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chiming in here.
we also put 2cc of heparin in the filter before priming, works great! use the bigger syringe and leave it on there to aspirate the air in filter when the prime is done.
I'm curious about this -- does he also get a heparin bolus - thru his venous needle ? ? - Or is this the only heparin used. And when you say that you put 2cc of heparin in the filter - do you mean the cartridge ? ? This is kinda confusing.
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oh - and Noob -- thanks for telling me all this -- every little bit of information helps - and we will certainly demand the "conscious sedation" as he has those stents changed every 3 months... :thumbdown;
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Hemodoc, how did you arrive at 350? Was it just trial and error, or had your neph suggested this BFR?
I run 40 L of dialysate, pretty much double the recommended dosage I was advised. 20 L just wasn't anywhere near enough for me. I almost gave up on NxStage. I went to 30L and then came back a month later and asked to go to 40L. Thankfully, my nephrologist understands that more is better.
thanks for taking the time to tell me all this Hemodoc -- when you say that you almost gave up - what were your symptoms ? Were you really tired ? Will we be able to tell from his bloodwork in a month - how this is working for him ? ? Hubby still has residual function, so we hardly pull any off. Today is our 6th day in a row, and we only pulled 0.1. Thanks again for all your help and insight. :thx;
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Haemodoc, whatheperin bolus do you use? I generally run at about 400 ,but would like to slow it down. The other week I did! And I was quite worried about how long the heparin would last. I know that it's half life isn't that long.
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When I started training with Nxstage I was told to run at 450 too..... and they wanted me to use 20L..... run 2.5 hours ...... I question that because when I was in center I was running 350 and was concerned about the speed....they told me that Nxstage was different..... so I did that and after about two weeks I started feeling really bad.....sick agan....like I felt before I started dialysis...... so I talk to my doctor and the clinic and requested that I could do 30 L and run at a slower speed.... Clinic said NO......My doctor said yes..... let try it and see how it works out.... I did give him all kinds of information that I had gather from IHD, Hemodoc, and Bill Peckham to support my request...... I started running 400 and did 30 L for the next two weeks...and I really started to feel much better...... alot better.....when training was done and I went home I made another request...I requested that I could run at a slower speed...... and the reason I wanted to was because my pressures were always at the high mark and alarms were always going off...... again the clinic wanted me to go get a fistualgram and I did and they told me that there was nothing wrong with my fistula....run at a lower speed.... my doctor supported my request and I slowed my blood flow speed down to 350 or 370 and then my blood pressure were good....no more alarms...... I could move around and do projects and enjoy the 4 hours on dialysis....I felt great...... I am thinking that sometime people are running too fast and not using enough dialysate to get good clearances...... just my thought......
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Im going to go back and read the rest of these posts, but just after reading that it 'was' your nxStage team saying that about the 'having to be running at 350 BFR) , im thinking that they want your fistula mature enough to "handle" that speed. Not necessarly use it once on NxStage, but they want it to be running at that so they know it's mature??? Just what im thinking...
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on the heparin int the filter question: when we first started we got some tips from the pro's. this was one of the best.
what we do is when we open the bag with the cartridge, before its put in the machine, take a 10cc syringe and inject 2 cc heparin into the filter via the little port on the top. for us, this keeps the filter from clooting too much and improves rinseback.
when he puts needles in, each line gets a 2cc heparin into that first before hooking up.
on the longer slower treatment, he will sometimes have the clot issue, so one of us does a 50-100 cc of saline via the white saline clamp line. this usually clears it up.
don't want to give too much heparin as that makes the bleeding take longer to clot when he is done.
oh, last month also, to see Doc, his pth has always run high. i asked about sensipar, so he is on that now.
but in the meantime i had him running 4.5 hrs instead of 3.5.
this was for 5 days prior to the labs we did. it got his phos down to normal. nurse says oh thats from the sensipar..
uh no..he had only had 1 pill 3 hrs before the lab, so i doubt that had anything to do with it.
i believe without doubt it was the longer slower treatment.
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Hi all -- here is my one month at home update. We are still hanging in, and it is getting easier, most of the time. I'm not a fan of drawing the bloodwork --- I made some kinda rookie mistake, and couldn't get the tubes to fill. Finally got frustrated and used a syringe to pull out some blood. Talked to the nurse, and got new tubes to try again. 2nd time went better - and now I'm curious to see the results.
I'd like to say we are doing great, but hubby is still having problems with his chronic bladder infections. They have gotten a lot worse on the daily diaylsis - maybe its a fluke, but its really a drag to be putting in all this work and time, and he feels bad almost every day. He had about 10 days of Cipro, and started feeling better - but the NEXT day after he stopped taking it, he started feeling off again. He is getting better and better with his buttonholes - tonite they just popped right in, didn't take more than a minute. We're running late tonite, because we took our grandaughter, Ron's daughter, her hubby, and new baby to see John Carter on Mars -- In IMAX 3-D --- thought it was fun - and we are enjoying the flexibility of doing NxStage.
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Hi all -- here is my one month at home update. We are still hanging in, and it is getting easier, most of the time. I'm not a fan of drawing the bloodwork --- I made some kinda rookie mistake, and couldn't get the tubes to fill. Finally got frustrated and used a syringe to pull out some blood. Talked to the nurse, and got new tubes to try again. 2nd time went better - and now I'm curious to see the results.
I'd like to say we are doing great, but hubby is still having problems with his chronic bladder infections. They have gotten a lot worse on the daily diaylsis - maybe its a fluke, but its really a drag to be putting in all this work and time, and he feels bad almost every day. He had about 10 days of Cipro, and started feeling better - but the NEXT day after he stopped taking it, he started feeling off again. He is getting better and better with his buttonholes - tonite they just popped right in, didn't take more than a minute. We're running late tonite, because we took our grandaughter, Ron's daughter, her hubby, and new baby to see John Carter on Mars -- In IMAX 3-D --- thought it was fun - and we are enjoying the flexibility of doing NxStage.
I had difficulty getting the tubes to fill one time and found out it was from a clot. I now routinely pull a very small amount of blood into a syringe before hookup and before drawing my blood tubes from the blood line. That sounds like that may have been the problem in your first attempt. You may wish to consider that after discussing it with your medical team. It did work well for me.
By the way, I still hate drawing my labs and have put it off for the last two days, but tomorrow is the day.
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Was it all the tubes? Someime if the vaccuum has gone from the tube, they won't work.
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Was it all the tubes? Someime if the vaccuum has gone from the tube, they won't work.
This was my thought too, when I read this! It has happened to me, because the tubes may have gotten old. I guess they just lose their vaccum.
Linda, Im so glad to hear it is getting easier. I believe once he gets his bladder issues cleared up, he will begin to feel better.
I too, do not like taking labs. Its not the drawing of them per sa, but the labeling and packing and shipping, is really what I don/t like to do.
Thanks for updating us on how it is going for you and hubby! You did it Linda, and you should be proud of yourself. It is not an easy thing to do, starting out, as Im sure others will agree!
God Bless,
lmunchkin :kickstart;
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Well, we are into our third month - the last couple of weeks have been hard. He started having cannulation problems, and we went several days without dialysis - and when we would get cannulated, we would then have YELLOW 14 errors. I have come to hate YELLOW 14 with a passion. Twice, after long sessions with tech support, I had to rinseback and end treatment more than an hour early.
Our nurse really helped us out, and came to the house 3 days in a row to help him sort out his cannulation problems. She said he had gotten "off" on his technique. He was pushing to hard with the blunts, (out of frustration) and making multiple tracks. And today - NxStage sent a new cycler. I was suprised and worried that it wouldn't help - but - so far tonite, there haven't been any YELLOW 14's -- and this cycler sounds so much quieter than the other one. Our first one was so loud, you had to crank up the TV to hear it -- this one is so much quieter it is kinda strange.
I haven't been handling the stress very well, and it is affecting me and our 9 year old. Hubby hates in center so much, I feel like I'm between a rock and a hard place a lot of the time, and I hate feeling on edge and on the verge of tears all the time. I told hubby I would give it 6 months, and I hope it gets better. Its rather ironic that he would have never heard of NxStage, if I hadn't researched and tried to find a good modality -- a classic case of --- Be Careful What You Wish For -- you just might get it.
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I am confident that it will get better. I have been doing NxStage for getting on for six months. It hasbeen a steep learning curve with some bumps on the way. I do it completely on my own now with my husband in the background if I need help. As each went on, I took over more and more so that now I am completely self-sufficient. Would that be an option for you? May give you some breathing space. I was much more syressed when my husband was helping me.
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I don't know how much more he can do - he has kerataconius (sp) and doesn't see that well. He does set up the machine, and gets it to 23 - and cannulates himself, I do everything else. I was up at 4 this morning - after the sak drained - putting in a new pak - and then up again at 6 or so putting in a new sak. - and then heading into work for 8 hours. We didn't do dialysis tonight because his bladder infection had gotten a lot worse during the day, and the doctor was going to admit him to the hospital tonite if he wasn't able to urinate and pass some blood clots. He finally used a large enough catheter and feels better, but now its to late for dialysis, since I have to go to work tomorrow.
I realize now that if I were retired, things would be a LOT easier. But I don't think my hubby could have lasted several more years in center, as that place was the pits. :puke;
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Well, we are into our third month - the last couple of weeks have been hard. He started having cannulation problems, and we went several days without dialysis - and when we would get cannulated, we would then have YELLOW 14 errors. I have come to hate YELLOW 14 with a passion. Twice, after long sessions with tech support, I had to rinseback and end treatment more than an hour early.
Our nurse really helped us out, and came to the house 3 days in a row to help him sort out his cannulation problems. She said he had gotten "off" on his technique. He was pushing to hard with the blunts, (out of frustration) and making multiple tracks. And today - NxStage sent a new cycler. I was suprised and worried that it wouldn't help - but - so far tonite, there haven't been any YELLOW 14's -- and this cycler sounds so much quieter than the other one. Our first one was so loud, you had to crank up the TV to hear it -- this one is so much quieter it is kinda strange.
I haven't been handling the stress very well, and it is affecting me and our 9 year old. Hubby hates in center so much, I feel like I'm between a rock and a hard place a lot of the time, and I hate feeling on edge and on the verge of tears all the time. I told hubby I would give it 6 months, and I hope it gets better. Its rather ironic that he would have never heard of NxStage, if I hadn't researched and tried to find a good modality -- a classic case of --- Be Careful What You Wish For -- you just might get it.
You have to be very gentle with buttonholes. I have used the Touch Cannulation method developed by Stuart Mott for the last two months where you push very gently from the tubing, not the wings of the needles. IT WORKS like you can't believe. You must be gentle. If it seems to stop, pull it out just a bit and then advance very gently observing the right angle and trajectory. Works like a champ every time. You simply cannot strong arm buttonholes.
In addition, you should be familiar with using sharps on the rare occasions you can't get in with a dull needle. Using the Touch Cannulation method, just be patient with it and it will work.
As far as the alarms, once you learn how to set up the machine, I essentially never get any alarms at all. One thing I spend a lot of time doing is snapping and tapping twice. I snap and tap, then I do my heparin, pick my scabs and then I come back and snap and tap one more time. I always check yellow to yellow, white to white and green to green. If the needles are placed correctly, thank the Lord, I never have any alarms at all except on very rare occasions. It all goes back to careful and deliberate set up following a check list every time. The machine is finicky, but when set up correctly, it works well.
Keep at it. You may consider going to bags if the Pureflow is causing too much trouble. You need more supply area, but you can set up, take a shower and then do dialysis while it is running to let the machine "cook" for a while. In prime, the air bubbles are generated from the rapid priming action. It takes a while for the bubbles to come together and be able to remove. I also do a rinse of 3 liters to get rid of some of the plastic taste from the warmer.
Lots of ways to approach all of this. Bill Peckham works full time and dialyzes at night. The last time I checked, he uses the bags to set up. With the bags, it takes about 30 minutes to set up and prime. If he is losing sleep to set up the Pureflow machine, that is another option to consider. I hang 40 L which is more than NxStage recommends and you have to be careful not to tip the machine since it is top heavy in that configuration, but I only did that once if you know what I mean.
There is more than one way to skin a cat.
Keep at it, going in-center is a death sentence in many ways. Home dialysis is a lot of work, but it is manageable once you get used to the system.
Good luck and I hope you are able to get used to the system and get some sleep and good dialysis as well.
God bless,
Peter
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I agree with Hemodoc about the buttonholes being a problem, then use the sharps. You are doing great Linda, just try to relax and don't let this get to you. I know what you mean about working and setting up for D. My job is in the busy months now and I am working tues through Sat, 7:30 to close (6:00).
I have also found that the more rushed or frustrated I get, the worse things can be. Just take it slow and easy!
I agree with you, I don't want him going in-center! This Nxstage is a commitment, but it is one I don't mind taking! If I may suggest, you and him get in bed together and you take some brief naps beside him. You would be surprised at how that helps. But do tape him down real good, just in case! I do lay beside him in bed and just rest while watching tv. Just get relaxed with it. But if you all are having trouble with the blunts, then please, use the sharps! He must get the cleaning he needs.
Man, he has been dealing with this bladder infection for awhile, hasn't he? Are they saying anything about that and what will get rid of it? Poor guy. That on top of his Dialysis!
Will be praying for him & you! Hang in there girl! :flower;
God Bless,
lmunchkin :kickstart;
P.S. Only reason Im on line today is because I went to a Seminar and got to come home afterwards! Yea :bandance; :bandance;
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Its HARD to believe, but we will soon be starting our fouth month with NxStage. Ever since we got a new cycler, we haven't had a single error ! ! :yahoo; I've had to make a minor adjustment now and then, but its been much smoother sailing for us. Most of hubbys blood work is better than in-center. When he started at home in January, his KdT/V was 2.19 -- His April 19th KdT/V is 2.57 -- and that increase was during a lot of short runs and cannulation problems causing days off because of inability to stick.
We still have the same problem with the chronic bladder infections --- as soon as we started daily dialysis, the chronic problems became pretty much a CONSTANT problem. There is one change in his blood work that isn't positive. His albumin has been dropping. When we started daily, his albumin was 4.3 --- it is now 3.9. He eats a lot of protein and we are now adding in Proteinex pills. I'm thinking the lower protein may have some bearing on not being able to fight off the chronic bladder infections like he has for the previous 10 years. I went online today and ordered the 18 grams of liquid protein in the 1 fl. oz drink bottles. We are going to try really hard to get his protein back up to 4.3- - and see if that helps fight off his infections.
If anyone has any advise about chronic bladder infections (he has urether stents that collect biofilm) we would love to hear it. He already drinks "pure" cranberry juice and takes cranberry pills. His uriologist says at some point - the chronic infection will become so bad that his kidneys, bladder and ureters will need to be removed. We have tried to put that off for years, since he still makes a lot of urine, and the surgeon says the surgery would be "major" and he might not survive it. Cross your fingers for us that bringing up his albumin will do the trick. oh - and also that the smooth sailing will continue :thx;
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his albumin may be dropping because of the bladder infections
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:2thumbsup; on the new cycler being nice to you ;D ;D We went for a year on our first and there were a few things about it that we just accepted but our second one was/is so much quieter as well, and well, theres a few things better about it so im glad you got that stratend out.. I also agree with the albumin being low because of the infections, and what can happen too is the hemoglobin may drop so keep an eye on that too. Bos albumin seems chronically low and it upsets me. The 'shots' of protien finally bumped it up, but we've droped again so back on the extra protien. Seems like it's an all day feeding protien frenzie huh.. All in all, it keeps getting better and i hope it's setteling in as 'just what ya do'. Im sure glad we made it. I laughed at the first part of your post about 'be carful what ya wish for'. Oh i curssed myself for 'searching out the best modality for us'... I was so excited then fear struck and i about lost my self in dread... It was HARD getting through one day much less knowing the same for tomorrow... Now, it's just fine :) I wish you all the best :)
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hemodoc (if you read this) how do you flush your nxstage cartridge?