Home Hemo and buttonhole

[NVRWKN]

How is everybody doing? I haven't been on in quite awhile. I'm doing great. Keeping busy and building my business. I do have some questions. I was approached yesterday by my clinic manager about trying noctural. But the drive is to far to the clicnci I would have to go to. She then also mentioned about home noctural or even just daily home hemo. I don't know anyone that is doing it at home so I really know nothing about it. How hard is it. I know you get better treatments by doing in daily or shoudl I say 5 or 6 times a week rather then 3. Anything I should really know about it. As afr as downfalls? Also I was thinking about asking them if we could do buttonholes. My clinic doesn't do them but it seems to me it would make things a lot easier. Any feedback on that? Any input would be greatly appreciated. Remeber everybody. NEVER WEAKEN. If you go to my myspace page I have pics or my Never Weaken tattoo. I'm not asking for opinions on tattoos LOL! Have a great weekend.
Scott

[okarol]

  Hey NVRWKN!
I am glad to see you and to hear you're doing well.
I don't have any info for you except that many people on nocturnal feel a much better than they did on standard in-center 3 or 4 hour hemo.
I am sure you'll get some good advice here.
I'll check out your tattoo.
Take care!

[del]

Hubby started nocturnal hemo 2 years ago and he really likes it!!!  He does 3 nights on dialysis , a night off, 2 nights on dialysis, another night off then back to3 nights on. He does 7 hrs each night. One good thing about any home hemo is that you are in control!!!  You get to set your own schedule of what time to hook up.  Hubby really likes having all his days to himself. Before he started nocturnal he was in center for 6 years.  The center was over an hrs drive for him so for 3 days a week his day was shot. By the time he drove to the center, did 4 .25 hrs on the machine plus the wait time and drove home again the day was shot!!! Just the drive and the waiting was enough to take his energy away. His bloodwork has been really good on nocturnal and he feels "fantastic"  The biggest things I have noticed is his energy and his skin color!!  He uses buttonholes and he says it is completely painless.  On nocturnal you do not have to take binders for phosphorus because the long slow treatment does a good job of removing it. Because you are on dialysis almost everynight you can basically eat and drink whatever you want!!!  Hope I helped some. If you have any other questions feel free to ask!!!

[NVRWKN]

Thanks Del. I'm not sure if I'm going to go with nocturnal or just daily. I really would like to try buttonhole. Seems it would make thing easier. I will be talking with my this week to see if he will even let me. I don't see why he wouldn't.  Hey Okarol. I have gotten a couple tattoos over the last few months, but the Never Weaken one is extra special. I have used that a lot just to get by. It works. Now all I have to do when I feel down or stressed is look in the mirror. LOL Take Care all!

[NVRWKN]

Well yesterday was interesting. I was getting hookedup and my nurse went to put my needles in and seen a bump on my access. She all but freaked. She said oh my you have an infection. Well they set up an appointment with the vascular surgeon. I went out he took one look at it and said theres no infection. If it was you couldn't stand for me to touch it. He said it is thinning out. SO I have to go back Nov. 14 for an ultrasound to determine what the next step is. I guess what I am getting at is,do these nurses or techs even have a clue. I told her it wasn't sore. also the Phys. Asst. looked at it and also had no clue. Kinda makes you feel real confident in go in for treatments. I know this has no real point but just needed to get it out. I have a tendency to get a bit wound up. LOL   

[jamoman]

hey when it comes to my access I hear ya, I use buttonholes & nocturnal love it 8 hours 3 times. nice to eat a few things I`d missed.

[NVRWKN]

So how was the process of developing your buttinholes? I really think that is the way to go. So far I have never heaard anything negative about doing it.

[overthepond]

Hi all

I have just started the first session of button hole procedure after 6 sessions of using sharps in the same place same angle etc...  I was pleaseantly surprised when we put the needles in.  As someone who has needled myself for many years I was expecting some pain but they just went straight through my skin no problem 

I did have a slight problem with the venous which needed some fiddling to get in the vein but again no pain.

With regard to Nocturnal dialysis it is something not many people, if any are doing over here in the UK although the daily dialysis is taking off much more - a consultant told me that it makes sense to dialyse more than the usual 3 times a week as the dialyser takes the place of the kidney and dialysing more will in effect help with the removal of all toxins and fluids etc...

[del]

Once buttonholes are established and working properly there shouldn't be any pain.  It works almost like an ear piercing. 
Nocturnal dialysis does have better results because it is a longer slower treatment.  Not only is it easier on you but the long runs remove a lot more phosphorus and potassium. It has a lot more positive effects as well.  Don't have the same flucuations in blood pressure as well. Very slim chance of blood pressure crashing because with the long tie on the amount of fluid coming off ach hour is reduced. If you do a web search for nocturnal dialysis you will find a few interesting sites ( not supposed to put a link here!!!) 

[petey]

Marvin and I have found that home hemo and buttonholes have made THE WORLD of difference for him.  So far, this is the best modality of treatment (except a transplant) for him.  We've being doing this (home hemo) for 15 months.  Marvin first started on dialysis in 1995 (three-year break in the middle for a transplant). 

The buttonholes -- while reportly researched to be better on the patient's fistula -- I think are also easy for the "sticker."  I cannulate for Marvin (he still can't look after all these years).  Usually, cannulating with a buttonhole is extremely easy for me.  Since we started all this in the summer of 2007, I've been the ONLY one to cannulate him (6x week); even when he was in the hospital and even when he had to go back to in-center temporarily for IV antibiotics, I was allowed to continue to cannulate him.  The only time I have any trouble at all is sometimes after his one day off a week, the day we start back it's difficult for me to get the needle in (Marvin's a quick, quick healer apparently).  Sometimes, I end up having to use a "sharp" to open back up the track in his buttonhole.  This probably only happens once a month; the other times, the blunt needle just slides right in.  Sticking with a sharp doesn't bother me and I don't have any trouble with it, but we don't like to use it very often because it can damage the track.  When I stick with a sharp in his buttonhole, I'm very, very, very, very, very cautious, slow, and careful.

As for home hemo, Marvin says it's God gift to dialysis patients.  Our only regret is that we didn't push for home hemo 14 years ago (didn't know about it then).

[cherpep]

I highly recommend home hemo.  I love having control over my schedule and my care.  There is much less risk of infection too.  My husband is my caregiver, and I do think one of the downsides is how much is required from him.  Of course, he says he doesn't mind and he'd do anything to have me at home.  We both work full time - lots of hours, so adding dialysis onto both our schedules 5 times/week is a lot.  But, I do think it is worth it.  I also do not have a restricted diet and was very happy when I could start eating bananas and tomatoes again.  I even treat myself to an occasional diet Coke every now and then. 

Another down side is that some of injections I would receive at the clinic are now prescribed orally. Medicaid doesn't cover prescriptions and my primary insurance has less coverage (with no annual maximum) on prescriptions.  So, that has become a higher cost for me. 

I tried to do buttonholes with my fistula, but they never took because I healed too fast.  I have only heard of this happening to 1 other person.  My nurse is still baffled by it.

I don't want to discourage you, because doing home hemo is not very difficult, and in my opinion the ups outweight the downs.  Good luck!

[NVRWKN]

Thanks all for the feedback. My next issue is a partner. I don't have anyone. But I was told i may be able to do it without one. Has anyone ever heard of that.

[paris]

There are members here who do not have a partner and do NxStage at home alone.  It can be done.  Hopefully, those members will give you some advice on this.  Keep asking questions.  Someone will have the answers 

[del]

There are people who do home dialysis using a fresenius or gambro dialysis machine without a partner. Depends on whee you live and if the unit will allow training without a partner.  I know of a couple of peopl who have done this in Canada. 

Petey I wish that we had pushed for home hemo before this as well. Lots more freedom!!

[G-Ma]

NVRWKN ...yes..RAI will train you to do NxStage at home without a partner, all they ask if you have LifeLine or LifeSupport, so you can push a button for help.  I would or will do that if I can ever get my vein to stop rolling. RAI is great.
Ann

[lola]

Otto is doing home-hemo and has buttonholes. He hates Dialysis but this at least gives him a better outlook. Buttonholes don't hurt according to him, the blunt just slides in.

[NVRWKN]

Well the ball is rolling. Now I need to get approval to do this without a partner.  Also I go to a  fresenius clinic. Not real thrilled with the machine. I would love to use the Nxstage. I do a lot of traveling. Would be nice to be able to take it with me. We'll see what happens. Buttonhole may have to hold off for a bit. Seems I may have to have my fistula revised. Was at the vascular surgeon last week. He said it looks like I have a very thin spot. Going for a ultrasound the 14 of Nov. and he will decide from that what needs to be done.  what fun!. Which now brings up another question. Home hemo with a catheter? Can or is it done? What an adventure this all is. 20 yrs and still dealing with........... stuff. LOL!

[kidney4traci]

I do it without a partner, no problems.  I never crash (my bp is ok) - and my neph knows, but I think he kinda turned the other way.  My husband is a chiropractor, so they only trained him one day on emergency rinseback, etc.  But he never does anything re: tx, I do it all myself.  And buttonholes are the best, I never have any problems.  Been on hemo 4 years, home hemo last 18 mos.  Feel free to pm me if you have any questions.  Good luck!

[graftgurl]

NVRWKN, I am in the same boat as you are. I would love to talk to someone about beginning nocturnal home dialysis or even just home dialysis. I think I would feel so much better on daily treatments at slower rates. However, like you, I do not have anyone to act as my partner. I'm going to a Fresenius clinic also. Have you asked them about it yet? What kind of response did you get? You have sparked my interest enough that I am going to speak to the nurse tomorrow to see if it would be an option for me. Keep us posted and 

[del]

I know somebody who has done nocturnal home hemo for about 5 years with a cathether.  She is doing fine.  has had to have the cathether replaced a couple of times.  Probably a lo safer using a cathether at home than at a clinic. I don't think there are as many germs at home as there would be in a clinic.

[NVRWKN]

Well their telling me there is noway for me to do home hemo without a partner. Their saying it is state law. I need to check that. But also that it may be nation wide law. Does anybody know anything about this?  What other avenues do I have?      Never Weaken stands for more then just surviving.

[kidney4traci]

Check Bill Peckam's posts, he doesn't have a partner.  I got around it - I have a "partner" just I do it alone.  He only came to one training, and they still past me.  Seems like you should be the one to decide, at least with your doctor.  I didn't know there was a law.