Upset about change in policy

[Cordelia]

This morning I found out at my unit when I asked for some more chlorhexodine white sticks to keep my central line clean after showering, the one nurse told me that the hospital is changing policies on the "Shower method"

I've been showering with my central access line since last Christmas Eve and never, ever a problem. Now, that may be changed on protocol. I'm so ticked about this because I have super sensitive skin and any little change I'm scared I'll end up with an annoying rash/skin reaction or worse yet, infection, from the change.

I'm very concerned about this as my skin does not adapt to change very well. It was a struggle and a fight in the first place just to even shower, to get to that stage, they were so leery of me doing it. But, I have proved them all wrong with NOT getting even one infection!   
(I went from Aug. 2010 to Dec 2010 with no shower before they finally let me shower)   

They are evaluating how many and, who, have had infection and why should I suffer and put my body at risk just because somebody didn't follow the rules, I'm so angry. I am ready to fight if they are really stingy about it. *sigh         

Just feels like one thing after another every time I go to dialysis. I'm to the point now, "What next?!"              

Anyways, my time with this central line is not for much longer, a few months max likely..... I'm hoping to God they can continue letting me do what I'm doing for my technique.   

Any suggestions/advice? All I can do at this point is stand my ground and be firm about it without being too rude, which might be a challenge for me to be diplomatic at this point   

[MooseMom]

What are they going to do, call the shower police?

You have given valid reasons for not wanting to change your routine, and you have shown good self-care.  If I were in your shoes, I'd do exactly what you are thinking of doing, and that is sitting down with them and telling them why you are leery of a change in protocol.  Ask them to explain the reasons behind the change, and after listening carefully, explain to them that you understand that they are trying to keep patients safe but that for yourself, you feel safer doing things the way you are doing them now and why.  If you give them a well reasoned argument and tell them that you understand that you are taking responsibility for your choices, then they should let you do what you want.

[Poppylicious]

What are they going to do, call the shower police?

That very thought crossed my mind when reading this. 

I like MMs idea of sitting down sensibly and discussing it.  And if that fails, I also like the idea of just (perhaps secretly) ignoring them (after all - and at risk of sounding like an overused cliche - if it isn't broken, why fix it?)  What you do has worked well so far and we all know this kidney marlarkey doesn't, and shouldn't, come with a 'one size fits all' policy. 

I hope this gets sorted to a satisfactory resolution ...

*bops head of person wanting this change implemented* (on your behalf.)

[Desert Dancer]

Any suggestions/advice? All I can do at this point is stand my ground and be firm about it without being too rude, which might be a challenge for me to be diplomatic at this point   

Like MooseMom said, what are they gonna do, call the Shower Police?

If they won't provide you with chlorhexidine sticks anymore, there are always BioPatches:

http://www.ethicon360.com/products/biopatch-protective-disk-chg

You can get them on Amazon; they are about $130 for a box of 10 BUT that box of 10 lasts for 10 weeks, because the patches release the chlorhexidine over the course of seven days. I never did shower with my catheter, but I did insist on using the BioPatches under a Tegaderm dressing just to be extra cautious, and did my own (weekly) dressing changes at home.

Then you can either be truthful with them about your plan, lie outright to them if they ask, or drop the whole thing and just hope it never comes up again and they assume they've gotten you in line. You have to choose your battles and I know the stick of 'non-compliance' is always being brandished about our heads. But no matter what, I'd still do what I wanted. (Of course, I can't help it because I'm congenitally stubborn.)

[monrein]

You have to make your own decisions about this and you should talk it over with the staff, including the neph if necessary.  You don't want the non-compliance label for many reasons but more than anything you don't want an infection.

After considering everything very carefully I decided never to shower with the permacath but I made sure to get rid of it as soon as possible because I strongly believe that fistulas are safer and better all round.  You've had yours a long time, too long in my opinion, but there are others who see it differently I know.  I have a strong personal bias about things going right into my heart.

What I wouldn't do is just go ahead behind their backs so to speak.  I'd insist on a review of your personal situation and protocol and try to get their approval of your methods.  Present your points clearly, maturely, politely but firmly and ask them to allow you to continue with what has so far been fine.  I personally don't think that the medical staff just wants to make life difficult for us although I know how it can feel like that quite often.

 

[Cordelia]

Hi everyone,

Thank you for all your advice! LMAO! MM, I am laughing so hard here on the shower police comment!                   I love it! LOL

Thanks for the link, DD,    I'm not able to afford it though. I get the sticks now at no charge....

At this point, I'm not wanting to be non-compliant, I  don't want that label, either. I don't want to go behind their backs, either as tempting as it is.

You're all right in saying about being polite, but still trying to get the point across.

Poppy, you are so right about your comment, if its not broken, why fix it?

Monrein, I understand what you are saying about the central line....I should explain.....the reason why I've had this cath this long is because I was supposed to be worked up for a quick transplant this year with my living donor, my husband.  My two doctors told me to keep this line in for that reason, it wasn't by choice or I would have gotten rid of the line long ago, but that's what they told me would happen. Unfortunately, at this point my husband cannot donate and I am not having a transplant anytime soon afterall as planned so now I have to go to the route of the fistula knowing I'll be on dialysis much longer than I antipated. I was surprised too when earlier this year they wanted me to have it left in......

For now, I will wait and see what they come back with. I'm praying and hoping they will keep the same protocol!   

[MooseMom]

This sort of conundrum really bugs me because on the one hand, we are always being told to take charge of our care, to exercise personal responsibility, to be our own best advocate, to educate ourselves and to work with staff, not against them, to achieve the best results possible.  Then when we try to do just that, we risk being labelled "non-compliant."

Cordelia, if you were just being stubborn, I would advise you to think carefully and follow your clinic's advice.  However, you have a valid concern regarding your skin, and these concerns need to be addressed by your clinic.  I can understand why clinics do everything they can to protect their patients from infection from central lines; indeed, this is a real issue for clinics.  Maybe given the opportunity, they will be able to come up with a solution that protects your skin as well as protect the rest of you from infection.  I personally would pepper my speech with phrases like "we can work together" and "I would like your assistance with this" and "I take responsibility, and I understand the rationale behind the change in protocol."  This isn't being non-compliant, rather, it is being active in your care.

Let us know what happens.

[jeannea]

Most of us were told not to shower with a perma cath. I have a lower cost solution although I do support you being open and honest. Buy some Glad Press n Seal Wrap. Not regular plastic wrap. When you shower, cover the catheter and its dressing with the press n seal. I did this and used a hand held shower head instead of standing under the water. My dressing never got wet. But with some experimentation, you may be able to stand under the water and still not get it wet. Not free but not a lot of money.

[Traveller1947]

In my unit, and in my experience, changes in protocol are more about saving money than anything else.  Everyone here has given you good advice.  Stay calm, state what you need clearly and stand your ground.  Most importantly, get that fistula placed as soon as you can.  All the best to you, Cordelia.

[sullidog]

It's the money, well most of it anyways. My center got rid of tegaderm and switched to a cheaper dressing, and then my neph said that tegaderm causes more infections, I love my neph very much but I think he's wrong on that part. That's what they use at any hospital I've ever been in.

[CebuShan]

My catheter was removed 1 year exactly from when it was placed (April 28, 2010 - April 28, 2011). My husband changed our shower head to one that could be game held or hung. It just never felt like a proper shower until I could stand under the spray until the hot water ran out. Everybody commented that they were surprised I'd had it so long without any problems. I have actually had more problems with my fistula! I would certainly engage My neph & the SW. He you can get then both on your side, the hospital would have to go along. Good luck & keep us informed!

[Cordelia]

I wasn't allowed to shower from when I first got it put in which was Aug of 2010. I was not given the greenlight to shower until Christmas of that same year. Having my first shower after not having had one for 4 months was such a huge relief! LOL I must have spent a whole half hour in the shower that Christmas Eve, it was probably the most special/memorable Christmas Eve-ever!     Anyways, I've been showering since, no problems, touch wood! LOL 

I glad wrap mine too! Works like a charm and doesn't get wet at all!   

I was wondering that too, if this whole change in protocol is just because of money. Sometimes cheaper, isn't always better as I've learned over the years when it comes to certain things   

I value all your opinions here, I really appreciate all your input. You may think of something I may not have and point it out to me and it always helps   

Cebushan, I've wondered the same thing, I have a feeling I'll likely have more problems with the fistula too, I'm just dreading getting it and I have small veins so I already know its going to not be easy, that's my fear. Yes, less risk of infection but I bruise very easily and really, I have a phobia of needles. With this central line, I don't get poked and I like it for that reason, to be honest.

I will keep you all posted.......

[Cordelia]

I forgot to mention earlier. If I need to, I could maybe take it to my renal community council, I am a member of council and I could raise it as a patient concern   

[Traveller1947]

Even though it's called a Permacath, a catheter is not meant to be used indefinitely.  The consequences are too devastating, should infection set in.  When it became clear that I would need dialysis within a a few months, I went to see the vascular surgeon.  When he saw how small my veins are, he recommended an A/V graft instead.  The "Fistula First" initiative has made people forget that a graft can be a good alternative for those of us with small veins.  My graft has been working well for almost seven years.  In the beginning I had problems with clotting and bruising, but no more so than someone with a new fistula.  My sister, who was also on dialysis for the last six months of her life, had a fistula, but it never developed properly because her hands were so crippled with arthritis that she couldn't squeeze an exercise ball.  She would have been better off with a graft, too, I believe, but she wasn't offered that alternative.  Needle sticks and bruising are painful with a fistula OR a graft, but the dangers of infection from a central line are much more serious.  I'm sorry if I sound so implacable about this, Cordelia, but we dialysis patients need to tell each other the truth.  Who else will?  All the best to you in this difficult journey..

[MooseMom]

You know, I keep forgetting about grafts as an alternative.  Just because an A/V fistula is the "gold standard" doesn't mean that it is the appropriate choice for everyone.  I think Traveller has a very good point.  I really do think you should have a conversation with the vascular surgeon and tell him your concerns.  If he won't even consider a graft and you feel he is not listening to you, get a second opinion.  It may be that a fistula will work better for you than you think, but then again, maybe not.  You have enough to worry about without having to wonder about your vascular access. 

[Cordelia]

Hi Traveller and MM, thank you both     I very much understand with both of you, about the central line, esp   

Oh, thank you so very much about mentioning the graft too and a second opinion too, if necessary, I'll definitely keep it in mind when I go to see my vascular surgeon this month, that's a really good idea, it just might be an option for me, you never know until you ask, right?

[MooseMom]

Let us know what the surgeon has to say.  I'm hoping that he listens to your concerns very carefully.  If he still says that a fistula is the best access for you, ask him to prove it to you.  Run for the hills if he doesn't map your veins!  Once he maps your veins, then you two can have a real conversation about this.  Make sure that he can not only create a fistula but that he is confident he can create a WORKING one. 

[Cordelia]

I will, thanks MM     I'm hoping too that he will listen carefully too. If he's doubtful I will be definitely asking about the graft!   

He did map my veins last time I went in the spring. Problem is, they're so small.     But now that I've opened the window of opportunity of my left arm now that I can have a bp cuff on my leg, that will allow more opportunity to check my other arm now!