Needles

[justagirl2325]

I first tried his needles (blunts in buttonholes last Friday, no go, again Sunday and Monday with no go).  But today I got one, the arterial which he has never been able to do himself (he's gotten the venous one in the past).  I was super excited and proud of myself, if you asked me a year ago if I thought I could have even tried the needles I would have said no way.  But from him all I got was "leave and go to work."  I can't be upset that he's depressed and I can't expect him to be happy I got it but maybe here I can celebrate a bit with you all.  Cheers.

[Hootie]

Just keep working at it...trust us when we say it gets easier over time. Just keep your spirits up and his will improve with more success along the way. Its a big change in life but he will feel so much better with the treatment and your will too as both of you get more comfortable with the process. We have all been where you are and where your partner is....We are coming up on seven months at home and life is good! We have our system down and responsibilities of each party.

Just hang in there...People on here will support you along the way! Have a great day!

Joe

[Simon Dog]

My buttonholes were "iffy" when they were very new, but the needles now go in smoothly and for the most part painlessly.

I've also found that canulation (staff are trained not to use words like stick, stab or puncture), even with sharps, is much less painful when I do it myself.

[justagirl2325]

Just looking back at the date...I finally was able to get the venous buttonhole today.  That did take some time.  Let's see:

I got the arterial on 15th, and again on the 17th in the hospital (he was getting the venous).
We went home and did two treatments like that with each of us doing one needle on the 20th and 22nd.
Then after that he stopped being able to hit the venous (and I could not hit it) so we did home hemo in combo treatments - arterial in arm, venous with catheter
We went to the hospital on the 24th, 27th, 29th, 31st, August 3 just to have them put in needles to make sure buttonholes were used.
We both kept trying at home.  No go, he got frustrated and asked me to learn.
Today I tried at the hospital.  Success!

Today I got both.  Yeah.  Fingers crossed I can get them at home lol.

[Hootie]

Congrats! It gets easier everyday! As you gain confidence in what you are doing, you will be an expert quickly...

Sometimes the fistulas are a little tricky in the early stages of home hemo or in the center for that matter.

[PrimeTimer]

Because of a recent infection in one of his fistula buttonholes and a horrible experience at the hospital, my husband has lost confidence in self-cannulating. He thinks it was all his fault. Since he is still anemic and a nurse had to establish a new buttonhole for him, he still has a couple more in-center treatments to do before they will allow him to resume home-hemo. Meanwhile, he is acting like he doesn't want to do home-hemo anymore.

When I ask him about when they might let him resume home-hemo, he shrugs his shoulders and hangs his head...I ask him what is wrong...he says he's lost confidence since this is (his words) "the second time he's screwed up" and gotten an infection. Well, getting the infection may or may not have been his fault, he certainly did not intentionally infect himself but now I am dealing with a husband who has lost his confidence. I know he's been on the phone with his mother who from the very start, didn't like the idea of him doing home-hemo and says he should go to a "medical facility where there are professionals". Don't know if she's now convinced him of this but he seems very wary now of home-hemo. Of course, it should be his decision as to whether or not he does in-center or home-hemo but I can tell that he was physically doing better with home-hemo. Yes, he's still anemic from losing blood at the hospital when his swollen buttonhole burst but I can tell he's carrying more fluid on him right now in-between treatments at the center and no doubt this is also affecting him. Whereas, when we do home-hemo, we are able to remove fluid and toxins from him at least 5x a week. I try not to get on him about drinking too much water (which I think he is lately) but I do remind him. Right now, I don't want to be the baddie, he feels crummy enough as it is. But...I don't know how to help him gain confidence again.

The nurse at the center is going to have him self-cannulate at the next treatment, hopefully it will go well and that will help him. We'll see...Right now, I feel both sad and angry. Doing home-hemo is a lot of work but I believe my husband feels better and his labs are better, plus there are many other benefits to doing home-hemo. I'm sad that he's lost confidence and I'm angry that we've worked at this (home-hemo) for a little more than 2 years and now dealing with this setback. I'm sure it happens to others but I just don't know what to do for him right now. Suggestions would be welcomed! 

[justagirl2325]

We've had so many problems with the needles, not the fistula itself like you have had PrimeTimer.  It feels like there were less than 10 sessions of home hemo where we were able to use both needles successfully.  Once he went back to work out of town, that stopped.  He'd be gone for days and doing dialysis in the hospital on the road and even the nurses there would not touch his buttonholes.  When he returned four or five days later I would have to use sharps - I'd get the arterial but not the venous.  We let the buttonholes close up.  We went back to the catheter until he's home more often and can get himself back to the hospital to establish new buttonholes (will try arterial in the same place but a new place for the venous).

He's never had the confidence for the needles (even when he was getting the venous himself) and I don't think he ever will.  He just doesn't like them but doesn't mind when I do them.  But it's never easy.  He did consider going back to the hospital and giving up home hemo.  He didn't - likely because the only time he has is after 10pm and they don't offer nocturnal. 

It's tough process.

[PrimeTimer]

justagirl2325:  You are to be commended for putting your husband's needles in for him. He's lucky to have you! I don't think I could do that. At least not on any sort of regular basis. I once cannulated him the first time he was in the hospital because their nurse had no idea how to stick buttonholes so I know I can do it, just wouldn't want to end up hurting him. I also do not want the added stress/duty unless absolutely necessary. And when it comes to buttonholes, a "self-cannulator" can actually feel the needle track inside their own buttonhole so it really would be better if he could get back to sticking himself. Of course, that's easy for me to say...I have no idea what it's like to stick a big needle in myself. I feel so bad for him. I thought he was going to stick himself today at the center but no, now says he will next treatment. Meanwhile, he felt so sick and lousy yesterday...he's not use to going 2+ days in-between treatments. He's gained weight and they are having to take more fluid off of him than he's use to. He felt a lot better after treatment today so I think that's a sign...more frequent treatment keeps the fluid gain under control and him feeling good but the 3x a week at the center seems to be hard on him. So, hopefully by the end of the week he will be glad to go back to doing home-hemo and can "slay the needle dragon". On one hand, when he's been at the center that is less work for me but on the other, it is far harder to see him feel so sick and miserable in-between treatments. I don't know if people doing in-center and their bodies eventually get use to it but I do know my husband felt a lot better doing home-hemo.

[cassandra]

I can imagine it being really hard to go from home hemo back to in-centre. Your diet, and fluid intake must be halved, I think.
Respect to the both of you for needling or trying to needle your hubbies

     

Love, Cas

[Vt Big Rig]

For almost everyone it is a choice but we choose home hemo and I thank God we did ........ the flexibility of the schedule is one benefit. My wife (who has some renal work behind her) was also convinced it is easier on the body. I have had only one cramping and nauseous episode in 7 months. And that was my fault for trying to take too much fluid.

We decided in the beginning to use sharps. We were convinced that the infection chances are better this way. I do not self cannulate. I brought it up twice and my wife freaked out. She says not with sharps. I line her up and she cannulates me. It has gotten to the point where we both can tell by the feel if we are in the right place. Having said that my first fistula is pretty squirrelly and we have a limited space that it is straight enough to use. So the scar tissue and repeated alcohol use is making the skin pretty tough.  Some days she really needs to push. Not sure I would enjoy that much if I was doing it myself.

But more importantly, Thank God for her.

[PrimeTimer]

  We are "home" again and after a few treatments, my husband is no longer paranoid of sticking himself.
  After not being able to resolve a red alarm on the cycler fast enough, which then led to his blood in the cartridge clotting up and being lost, I am now the paranoid one. Feel terrible about it.

[Vt Big Rig]

Glad your are back home.

As for the red alarms ...... you will get it figured out. We all get them once an awhile.

[cassandra]

So true Vt. Real glad you're both home PT.

Love, Cas

[Darthvadar]

Great news!.... 

Glad it's getting better!.... Your story will inspire others... Keep up the good work!!!...

Darth.... Moderator...

P.S... Does anybody else see the irony of having a banana dancing on a dialysis forum???...   

[PrimeTimer]

Thanks for the support everyone.
As for the dancing bananas, they appear to be dancing to a fast version of ABBA's "Dancing Queen". So long as I don't see red alarms and dancing bananas in my sleep, think I'll be ok. Could be worse. For instance, the booze and popcorn...

[Vt Big Rig]

P.S... Does anybody else see the irony of having a banana dancing on a dialysis forum???... 

Never thought of that .... good point!

[Darthvadar]

Thanks for the support everyone.
As for the dancing bananas, they appear to be dancing to a fast version of ABBA's "Dancing Queen". So long as I don't see red alarms and dancing bananas in my sleep, think I'll be ok. Could be worse. For instance, the booze and popcorn...

My late mum wolfed popcorn!!!... And the odd Bailey's Irish Cream washed it down, too!....

Yes, the dancing bananas make me smile... Presume they're Potassium Free???... 

Darth....

[kickingandscreaming]

I don't know how you guys do home hemo.  I absolutely cannot imagine myself self-cannulating.  I'd sooner bungee jump off of Everest (and I'm terrified of heights).  I'm trying to do PD (if I can get a working catheter) and am temporarily (dear god, make it so) doing in-center hemo which is bad enough.  If I can't do PD and have only the choice of in-center hemo, then it's hospice for me.   I'm not eligible for home hemo anyway as I dont' have a care partner.  I commend your fortitude.

[Simon Dog]

I don't know how you guys do home hemo.  I absolutely cannot imagine myself self-cannulating.  I'd sooner bungee jump off of Everest (and I'm terrified of heights).  I'm trying to do PD (if I can get a working catheter) and am temporarily (dear god, make it so) doing in-center hemo which is bad enough.  If I can't do PD and have only the choice of in-center hemo, then it's hospice for me.   I'm not eligible for home hemo anyway as I dont' have a care partner.  I commend your fortitude.

One thing that is screwed up with FMC and DaVita is that they are fine with sending you to hospice, but would deny you home hemo if you were not willing to do in-center to avoid hospice.   I guess it's all OK as long as you have a death they cannot be sued for.

[kickingandscreaming]

One thing that is screwed up with FMC and DaVita is that they are fine with sending you to hospice, but would deny you home hemo if you were not willing to do in-center to avoid hospice.   I guess it's all OK as long as you have a death they cannot be sued for.

There are a LOT of things screwed up about this system.






EDITED: Fixed quote tag error-kitkatz,Admin

[PrimeTimer]

I don't know how you guys do home hemo.  I absolutely cannot imagine myself self-cannulating.  I'd sooner bungee jump off of Everest (and I'm terrified of heights).  I'm trying to do PD (if I can get a working catheter) and am temporarily (dear god, make it so) doing in-center hemo which is bad enough.  If I can't do PD and have only the choice of in-center hemo, then it's hospice for me.   I'm not eligible for home hemo anyway as I dont' have a care partner.  I commend your fortitude.

My husband is the one on dialysis but I think if it were me and I lived alone and couldn't do PD, I'd probably give a center a "conditional try". Knowing what I do about dialysis (which is actually very little), I'd be very upfront with the staff and make my expectations and who I am and what I am about very clear right from the get-go. No monkeying around. I don't know if you have more than one center in your area to choose from that would allow you to keep the same Neph or if you'd want to change Neph's or centers if you don't like one but if you do, keep that in mind as another possible option. YOU are to be commended for the mental strength that shows through in your posts. Thanks very much for the inspiration! There are many people here on this site that have been doing dialysis for nearly 20 years or more who lead very productive (and I might add, very lively) lives. You are over 70 years young so hopefully all this dialysis stuff will kick in and let you get on with the business of living.   

[PrimeTimer]

We've had so many problems with the needles, not the fistula itself like you have had PrimeTimer.  It feels like there were less than 10 sessions of home hemo where we were able to use both needles successfully.  Once he went back to work out of town, that stopped.  He'd be gone for days and doing dialysis in the hospital on the road and even the nurses there would not touch his buttonholes.  When he returned four or five days later I would have to use sharps - I'd get the arterial but not the venous.  We let the buttonholes close up.  We went back to the catheter until he's home more often and can get himself back to the hospital to establish new buttonholes (will try arterial in the same place but a new place for the venous).

He's never had the confidence for the needles (even when he was getting the venous himself) and I don't think he ever will.  He just doesn't like them but doesn't mind when I do them.  But it's never easy.  He did consider going back to the hospital and giving up home hemo.  He didn't - likely because the only time he has is after 10pm and they don't offer nocturnal. 

It's tough process.

Am just curious if you guys established new buttonholes and if so, were you able to establish a new arterial BH in the same place as the old one (or was there too much scar tissue there?).

[justagirl2325]

No, not yet.  At best we do dialysis every second day.  His healed so well each time that the nurse suggested we use the button holes even on his off days.  Put the needle in, flush with saline, take it out, hold gauze.  When we could do that it was ok.  In September he went back to work (good) but works 3.5 hours away.  He was getting dialysis there, shocking the nurses their would not use the button holes.  They were not trained.  Strange eh? Train some random caregiver chick like me but not dialysis nurses.  So we would use the buttonhole Sunday, then try again Friday when he came home.  Yeah, no go.  It became such a struggle at home - I would try sticking needle, after needle with no success we just stopped.

He will be on this job until at least the end of March. 

When we talked to his nurses here they thought they could establish new buttonholes after xmas, when things settle down.  He has been coming home more for dialysis lately.  Drive Monday 5am, come home Tuesday 9pm, dialize overnight Tuesday, drive back Wednesday 5am, home Thursday 9am, dialize Thursday or Friday and then once or twice on the weekend.  With that schedule maybe we could go back to buttonholes. 

BUT, he just got into a car accident on Tuesday - for in my opinion, an unnecessary trip home for dialysis, I really would like him to limit the driving and do dialysis there once a week.  Did I mention before he doesn't do his own buttonholes because he doesn't see well...stubborn.

[Simon Dog]

If he can learn to canulate his own buttonholes, it won't matter if he goes to a clinic where the RNs aren't trained.    When I was a transient at such a clinic, they asked me to wait until the entire staff could assemble to watch.

[PrimeTimer]

No, not yet.  At best we do dialysis every second day.  His healed so well each time that the nurse suggested we use the button holes even on his off days.  Put the needle in, flush with saline, take it out, hold gauze.  When we could do that it was ok.  In September he went back to work (good) but works 3.5 hours away.  He was getting dialysis there, shocking the nurses their would not use the button holes.  They were not trained.  Strange eh? Train some random caregiver chick like me but not dialysis nurses.  So we would use the buttonhole Sunday, then try again Friday when he came home.  Yeah, no go.  It became such a struggle at home - I would try sticking needle, after needle with no success we just stopped.

He will be on this job until at least the end of March. 

When we talked to his nurses here they thought they could establish new buttonholes after xmas, when things settle down.  He has been coming home more for dialysis lately.  Drive Monday 5am, come home Tuesday 9pm, dialize overnight Tuesday, drive back Wednesday 5am, home Thursday 9am, dialize Thursday or Friday and then once or twice on the weekend.  With that schedule maybe we could go back to buttonholes. 

BUT, he just got into a car accident on Tuesday - for in my opinion, an unnecessary trip home for dialysis, I really would like him to limit the driving and do dialysis there once a week.  Did I mention before he doesn't do his own buttonholes because he doesn't see well...stubborn.

Whoa! That is SOME schedule you guys have! Don't know that I could keep that up very well. And believe me, I understand the stubbornness (and car wrecks/repairs, don't even get me started lol) all too well. Right now I feel as tho I am in "put up and shut up" mode. Bet the month of March can't come soon enough for you. Hope you will be okay. The holidays are coming and for some of us it means a looong nap, followed by of course, needles and dialysis.