I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: caringpct on July 20, 2010, 08:54:57 PM
-
My FA and dietician keep telling me I have to remind my patients to take their binders and tell them what foods not to eat. I understand this is very important for their health, however most of these patients have been on D for years and know all this. I do educate new patients on foods and why we check potassium and phosphorus levels, but the ones that been there forever?? I always feel I am lecturing them or treating them like children, but if I don't say anything then I get "talked." How can I make things come across easier or even fun? I would love to play games but the ones I want to do I'm told are too difficult for patients.
Really?? My patients are not stupid, in fact they teach me a few things.
Anyway, sorry about that little rant.
Any suggestions would be appreciated. Thanks everyone. I love this site!!
-
I'm treated like a kid sometimes because I look like one, even though I'm in my 30s. Best I can tell you is to level with them, be frank. If their levels are off, just tell them that much. If they've been doing it for a whle, they know what they need to do. Maybe just ask, "you know what you need to do to fix that, right?" For me, the answer is usually, "yeah, take the binders" I have a high phosphorus level. Always have had a high phosphorus level. Don't lecture, just talk.. coversate.. *L* and yeah, I know that's not a word. You're likely to get a few rolled eyes, but you're doing your duty in letting them know.
Dumb question. Why doesn't the dietitian tell the patients themselves. Isn't that their job? I've gotten phone calls from the dietitian telling me when my levels are off and what foods I should be avoiding
-
Her's an idea I picked up from my football club. I was talking to some players (the football kind, not the other kind.. well actually I have no idea on that count! :rofl;) and they have a system after every game they have to grade their own performance, and they then take that to the coaches - they have to be critical to point out things they did wrong as well as things they did right - rather than the coaches just saying "you did this wrong and that wrong" - a few of them said it works really well for them because they feel more empowered and trusted with their own output, and it can also show that they are learning what is expected of them based on what they do right, but also their ability to see, and hopefully learn from, what they did wrong.
So how does this translate to dialysis? Well, I like to play this little game with my team. Well more with myself than them, but most of them play along. I am one of the few who actually asks for my labs as soon as they are in the computer. Now some of them just say "it looks OK" or whatever, but usually they give me the lab printout hot off the press, and they ask *me* what I think of the results. So, I look down, and I know the reference ranges for the various important things like K, Ca, PO4, hemoglobin, albumin, etc and so they wait for ME to point out that oh PTH was elevated, and my Phos was a bit high(that pizza had more cheese than I thought !! >:D) and so on.
Now I don't know if they allow that kind of thing where you work - I keep hearing about these awful sounding "report cards" and the like, but maybe with the longer term patients you could show them the labs(if they seem interested) and ask them if there's anything out of the ordinary that they can see(even if there isn't !) and if there is, to suggest why it might be. K up? drinking orange juice? had pineapple? etc.
I know when I get to look at my labs and show some understanding and appreciation for the issues that I feel empowered (and trusted), part of my treatment team, and not that I'm being lectured to, but being treated with respect.
I do sort of agree that why does the dietician expect you to do their work for them? I mean a long term D patient is probably pretty stable and knows what they need to do - just telling them again and again will piss them off, and if they have something abnormal, like a higher K or something, it is probably because they've decided they can live with the risk but they just love their potatoes, or tomato or whatever - I mean telling them stuff they already know will just piss them off. You could always try something like when they're getting ofdf say in a fun way "take it easy with that chocolate!" or "don't have too many at the bar tonight!" - maybe that will be less of a lecture, but still getting the point accross.
Anyway just a couple of ideas for you.
-
No amount of talking or games will make people do things , they will either watch their diet or not ! Yes educate the newbies, but what is it they say ? ..you cant teach an old dog new tricks ! :rofl;
-
tend to agree with that KS - but I think the problem that caringpct has is that if they doesn't make some sort of effort then THEY get in trouble! I personally think it's a bit unfair to do that with the longer term patients who, as you say, will do what they like and just resent more lectures. Caught beterrn a rock and a hard place in a way.
-
Thank you all. The dietician does talk to the patients but she's bit of an airhead. And she lectures (trust me I have been on the receiving end of that one :Kit n Stik;) I asked one of my patients what happens when her phosphorus goes high, best answer every, she replied, "I get griped at!" :rofl; :rofl; I loved it!! (of course she said it kiddingly) is that a word or am I just bad at spelling?
-
*LOL* that probably would have been my answer too.... although, I would have said that I get growled at. The team leader in the unit came up to me a few weeks ago and mentioned to me that my phosphorus was high, and that if I didn't get it down, they could take me off the transplant list. I know that it's true, because of the complications involved with high phosphorus, but I'm sick of that threat.
When I was a child, we couldn't make it to a clinic visit, because of a snowstorm, and the only way out of the province at the time was an ice breaking ferry that wasn't running due to high winds. When Mom called to say that we weren't coming, she was told that not coming to clinic was considered noncompliance and that was grounds for taking me off the transplant list. She gave that woman a blast so hard, I'll bet her ear is still sore.
it seems a threat they hold over your head. Do exactly as well tell you, or you're off the list
wow.. I went off on a tangent, didn't I.. *LOL*
-
The games they tried to play annoyed my husband greatly.
-
The only time anyone talks to me about my lab results is the nurse or the dietician. For some reason, it seems like they want to pass their job duties on to you. I believe I can speak for Dialysis veterans (6+ years) when I say:
1) No games! It interrupts our TV, DVD, or music we're enjoying while trying to get through treatment.
2) After the first six months, most of us (except the crazies) know our routine and don't need to be lectured on our treatment.
Even asking the questions shows you're a conscientious and caring PCT. It is my experience that is a rare gift in the Purgatory of Dialysis.
-
I too hate being lectured about what I'm eating. All I want to know is what my levels are and I'll go from there. I want to know if my potassium is high as I really don't want to die but I'm still going to cheat once in a while and I'm a grown person so I hate the lectures from those who don't know what it's like to have such a strict diet and fluid restriction.
Just give it to me straight and avoid the naughty girl lectures.
-
I still play innocent, when my labs are up. I'm like, really that's weird.
No games please. Milk = phosphorus Got it :2thumbsup;. Orange juice = potassium Got it. :2thumbsup;
Give me a simple list of what I can and can't eat and why and that's all I need. Then I will decide what I will and wont eat. The games would be great for helping our children understand why we can't have certain foods.
-
what are these games you all talk about? I think if one of the nurses or the dietitian tried to play a game about what foods I should eat, I'd look at them and tell them to take a look at my chart to see what year I was born
if that is what is it, it sounds rather degrading and condecending
-
agree re the games.. sounds stupid and annoying.
-
Even games that are not dialysis related? I just want to help pas the time for the patients.
-
Even games that are not dialysis related? I just want to help pas the time for the patients.
Do patients not have enough entertainment options? Like TV's etc.. plus I am sure they can bring in their own - books, dvd players, ipods, whatever.
I think the problem is that doing something like that, as well intentioned as it is, is that playing games (of any sort) is likely going to be intrusive to others in the unit who are not interested. Our unit tries to keep a generally quiet atmosphere, tv use with headphones, no loud music etc and people are encouraged to not shout or yell or whatever (a bit hard for the deaf ones!).
I know if it was in my unit and someone wanted to do something like that to help pass the time, I would object if it made noise that distracted me. I have my laptop and watch movies. Others sleep etc. Now if, by games, you mean something more quiet, like perhaps playing a card game, or chess one on one or something, then hey I'm all for that because it wouldn't affect me. I don't quite see how that is very practical though.
Just a thought. Sorry - not trying to burst your bubble.. It's just an opinion.
-
sorry I thought you meant just for education's sake. I don't do in center dialysis but if I did... If you mean card games, chess, etc. that would be ok If I didn't bring anything. But if I am enjoying a book the last thing I want to do is be is interupted. If they look bored out of their mind, it doesn't hurt to ask. Every person is different.
I think that many dialysis patients can be moody and what might offend one day, might brighten their day on another.
example 1
I feel like poop (translation: A feel like my whole body is dead weight and it's time to trade it in for a new model.). A healthy person comes up to me and tells me how much better I am looking. I say, "That's because my disease is on the inside." I don't say it in a mean way, because they mean well. But does make me grumpy.
example 2
I feel good (translation: I feel like a healthy person with the flu.) A healthy person comes up to me and tells me how much better I am looking. I say, "Thanks, I'm feeling pretty good." I feel just a little happier after that exchange.
The main thing is that you care. Being cheerful can be good but being too cheerful would just aggravate me, because I would be jealous that I wasn't as happy.
-
Richard are you saying, you would not play games with a pretty Clinic worker because she made too much noise? :(
My world has turned upside down. :rofl;
Well I guess it makes since. Dialysis is probably the only time you can get away from all those women. :2thumbsup;
:bow; :bow; :bow;
-
haha quickfeet. Well those other sorts of games usually require the curtain be drawn.... and I'd prefer to have both arms free!!! :rofl; :rofl; :rofl; :rofl;
good stuff. You got me good there! :shy;
-
In the past they would bring in a PA system and try to play bingo. Very few patients participated, and it was hard to hear my movie with someone yelling, "B-6! Anyone have B-6!"
The most hilarious part though was the patients who don't speak English. They kept staring at this woman and wondered why she was yelling at them over a speaker.
-
wouldn't nurses have better things to do than be bingo callers?? I mean, mine are always so busy. They're charting, they're answering phones, they're doing up iv medications for those who need it, they're looking up lab results on the computer, they're responding to alarms, they're doing dressings and checking blood sugars. They're putting people on and taking people off, they're cleaning chairs and machines. They're always checking on people like me, who's bp can drop suddenly, or who can clot the dialyzer, and they're doing little tihngs like getting snacks for the diabetics, or ice chips or a warm blanket for somebody. One fellow has a service dog with him, and they give the dog a bowl of ice halfway through his treatment. They just wouldn't have time to play games.
I'm with Richard. if you want to play a quiet game with one of the patients, that's fine, but leave me alone. I'm good with my ipod, my imagination, and my involuntary naps.
-
Your nurses help take people off and on, dressing changes, and all that!!???? My nurses sit behind a desk and text message friends all day :banghead; Can I come work at your unit?
I see everyone's point. NO GAMES!!
-
we don't have any techs. Just nurses and support workers. Right now we have 12 nurses, 2 support workers, and 2 students. There's also 2 nephrologists and a nutritionist, who I've only met once, and she's never been on the unit. We're all monitored by the transplant centre, which is a different province, so we're quite happy that we have what we do, and it's close to home. When I was a kid, I was the first child to do home dialysis in the province. There's been many since me, though. I"m glad to have been a pioneer.
-
wouldn't nurses have better things to do than be bingo callers?? I mean, mine are always so busy. They're charting, they're answering phones, they're doing up iv medications for those who need it, they're looking up lab results on the computer, they're responding to alarms, they're doing dressings and checking blood sugars. They're putting people on and taking people off, they're cleaning chairs and machines. They're always checking on people like me, who's bp can drop suddenly, or who can clot the dialyzer, and they're doing little tihngs like getting snacks for the diabetics, or ice chips or a warm blanket for somebody. One fellow has a service dog with him, and they give the dog a bowl of ice halfway through his treatment. They just wouldn't have time to play games.
Yep, my unit is like that too - always busy busy busy. A big thing yesterday was whtn a trainer or someone came in and got a bunch of them around for about 30 mins to explain calciulating Kt/V all that stuff in the machine. They did that with me (that was so cool!) but always had a couple of them monitoring the chairs, and running off to fix alarms or do obs or whatever.
I couldn't see anyone having the time for extra stuff like that, but I suppose every unit is different.
I'm with Richard. if you want to play a quiet game with one of the patients, that's fine, but leave me alone. I'm good with my ipod, my imagination, and my involuntary naps.
Oh Riki if you were with me there wouldn't be in involuntary naps!!! >:D >:D >:D >:D >:D >:D >:D >:D
:shy;
(now that's a "game" I'd play!!!)
-
I get a piece paper from the dietitian, the PA comes in a tells me what us if, the doc comes in and tells me what is off, Now tell me, why do I need three people to telm me what I already know!
-
When I found out 6 years ago that I had kidney problems, I did as much research as I could into how to protect them and myself. Maybe I didn't look in the right places but I found it quite difficult to get specific information on what foods were high in Potassium etc. I knew the obvious ones like potatoes and bananas but it was a struggle at times finding out about other items.
I seem to have done a good job though because even though my kidneys failed and my creatine levels were through the roof, my years of avoiding Potassium had obviously worked because my K level was only 3.5 when I started dialysis. In fact, the highest my K level has ever been is 4.5.
How about creating a laminated fact sheet showing the levels of Potassium, Phosphorus etc in certain foods? Make it clear and concise so people can't find it confusing. You could then distribute it to every patient. You could include common food substances and then recommend alternatives. Example, 100g of Cheddar cheese has 512mg of Phosphorus whereas 100g of Feta has 337mg and 100g of Brie has 188mg.
If someone had given me a sheet like that, I'd have probably hugged them for a week.
-
Seems to me that's the prime job of the dietician. I know in our unit when they came around they hand out all that sort of information.
-
they tend to pass me pamphlets of information on high phosphorus foods to avoid. I tend to pass them back, saying I have 3 of them at home already. They keep giving me the same information, and I've had the same problem since I was 12 years old. It doesn't matter if I take the binders or not, the phosphorus will not go down.. It gets incredibly annoying.
I'm with Richard. if you want to play a quiet game with one of the patients, that's fine, but leave me alone. I'm good with my ipod, my imagination, and my involuntary naps.
Oh Riki if you were with me there wouldn't be in involuntary naps!!! >:D >:D >:D >:D >:D >:D >:D >:D
:shy;
(now that's a "game" I'd play!!!)
Unfortunately, Richard, since they are involuntary naps, it would probably happen anyway.. *L* alhtough, I didn't have any today
-
Hey, Quickfeet, "my disease is on the inside" is the greatest response to "you're looking good" that I have ever encountered. I'm using it from now on.
-
What we need, simply, is a copy of the lab results. With that, we can adjust up - increase binders, increase or decrease calcium tablets, spread out the high potassium foods. In the rare instance where we cannot identify the culprit ourselves, we will ask.
I have a real problem with our dietician and I don't know why. I have no respect for someone who comes around before labs and reminds us to take our binders (so that the unit's number will look good). And when she comes around all smug when our phosphorus is up a little and points to the chocolate milk my brother is having with his breakfast, I want to :boxing; He'll drink two or three sips of that milk and then we toss the rest of it. He is entitled to something a little special from time to time and I don't expect him to be given any kind of a hard time over it. She has no idea what we do outside of the unit - the unit is not a window into our lives.
-
Aharris, I know EXACTLY what you mean. When I was getting ready to start dialysis again, I was frequently admitted to the hospital check function. I traveled between where I lived in Charlottetown, Prince Edward Island to the hospital in Halifax, Nova Scotia by shuttle. One day, I was getting ready to go home. The shuttle left at 4, and supper was at 5, so I knew that I wasn't going to get another meal till I got home around 8. Noon till 8 is a long time to go without something to eat, so I went down to the convenience store next to the cafeteria just to see if there was something that I could get to take with me. I wasn't on any kind of restrictions yet, and my favorite flavor of cihps were there, so I bought a bag. As I was leaving, one of the doctors, who's a bit if a dick anyway, noticed the chips in my hand, and yelled to me something along the lines of, "those chips aren't good for your kidney, you know." Totally ruined it for me. I couldn't eat them without feeling guilty. I went the whole ride home without eating
-
Perhaps I can shed some light on this thread--being a renal RD. The reason that the original poster was probably asked to speak to patients about certain things (like K and phos), is likely because many units are trying to become more "team player" oriented. The idea is that many patients get along better with their care techs than their dietitians, because they see their care techs more often, and have therefore developed a closer relationship. I have witnessed this in action. I might have a patient tell me "yeah, I'm taking my Renvela"....and then 10 minutes later tell their care tech that they never filled the prescription. I'm lied to so much, that I only believe about 50% of what I'm told by patients.
And let's face it----it seems like most dialysis patients hate dietitians anyway---we can tell!
It's funny about how much people dislike the stupid games, like bingo and whatnot. I do as well....my clinic manager has been bugging me for almost a year to put together a bingo game to do, and I keep putting it off. Not only am I just not the bingo type, I feel it would be annoying to my patients. Unfortunately, though, we often have to do certain things in order to keep our jobs.
One of these things we have to do is something I see complained about a lot within these forums: being incessantly bugged about your lab values. I have to say---this is something that we are forced to do. If I choose to not talk to you about your high phosphorus (because you don't want me to), that means I have to document that I chose not to talk to you about it, and I can be determined as being negligent. Negligence is not something a healthcare professional wants to be sucked into. Also---when you are being incessantly bugged by a dietitian, know that she probably has a physician incessantly bugging her about you. Every single month, without fail, I have to give reasons to my physicians for every single potassium, phos, PTH, and albumin that is out of range. That is why I always ask if someone is taking their binder---so that I have an intelligent answer for the physician. Whether we like it or not---we are being held responsible for your health decisions.
Another thing that we have absolutely zero control over is the "report cards". When the corporate office says you have to use a certain print out or template to stay in compliance with corporate policies, you kind of have to do it. I apologize on behalf of all of my nutrition colleagues out there that these are so demeaning to people----but our hands are tied across the board. I think most dietitians are using a pre-made template that comes right from the computer system we have to use, so there's no changing it. If it annoys you, please don't blame it on us. Chuck it in the trash later, if you want.
Ok---stepping off my soapbox now. Just know that being a renal dietitian is actually quite a stressful job---after I do lab rounds or sit through a doctor meeting when he tells me how off goal I am for the month, I'm always thinking that opening up a bakery might prove to be a better quality of life! No one gets mad at you when you hand them their donut.
-
I'll have a donut! oh wait.. they're high in phosphorus.... (http://auwvdw.blu.livefilestore.com/y1pdB15_NdKNyq_1ewlB-zrPnl2HyRMbgoMP7FAO8Jmf2406INPkDExk92BoOgaP5aZaxdNZFrhdIHATeW4iFBZsg/laughter.gif)
I liked the nutritionist that I had when I was a child. She did everything she could to make the renal diet eaiser for us kids, who are picky eaters due to our disease, besides the fact that we were kids. We had to drink a concoction of Boost with a protein supplement, and sometimes Kayexalate to bring down potassium. We called it 'formula' and we hated it. I know I did. I'd do anything I could to avoid drinking it. She did her best to find a flavor that I could handle. Blueberry didn't agree with me, and Banana is what I ended up with. Luckily, I ate well enough when I was at home, that I only needed to drink it when I was in hospital, because I didn't each much then. 20 years later, I still have trouble eating things with banana flavoring
The dietitian in Halifax is pretty cool. She tries to nudge me in the right direction, but she does know that I've been doing this for a long time, and I know what I can and can't eat. She knows that I have a mind like a sieve and sometimes don't remember binders and other medications. She'll call and ask, and I'll tell her the truth. The new one, who I've met only once, and the nurses knew nothing of her until I told them
-
I can't stand that they think we are not taking the binders or not following the diet if our phosphorous is high. Newsflash the phosphate binders are not perfect! It is possible to have high phos even if you do everything right. We do have to eat after all!
-
Kitty2010 - thanks for your post. I liked your insight "from the other side"
I'll say one thing for our dieticians (and I just had a new one come see me yesterday!)... without a doubt the dieticians are all absolutely gorgeous!!!!! I like seeing them from that point of view :rofl; :rofl; :rofl; :rofl;
About not wanting to play the annoying bingo games and stuff - maybe you should try pointing your boss at a forum like this to say "Look, real patients out there just do not want this stuff!" to back up your own claims.
About having to talk to us about our labs - I think this IS responsible. It is your (the staffs) job to provide the information so we are informed. I think then it is for the patient to decide what they do (or don't do) with that information. The point is if you can show that we have been informed of the facts of our situation then you're off the hook, and we're informed. I think the line though is difficult - when does "providing information" become "hassling"(from the patients perspective)? This is SUCH a difficult topic you probably could devote an enire message board to it! I can't count the number of times I see a nurse or dietician come in and talk to a patient that either they shouldn't smoke, or they "must" be eating too much high-K foods, or not enough protein or whatever.... and perhaps the real issue is "how much is enough?"
I think this also dovetails into the "team" approach you mention - yes, it's good that everyone is across the same page, and "multiskilled"(to pull another buzzphrase out) and all hopefully present the same information (nothing worse than getting mixed information from your care team - eg: one person says food X is OK, the other doesn't, etc). The problem, from the patients POV might come in when you have a dietician telling you to do this, then your nurse/tech also telling you and so on. Specially if it's something you don't want to hear, or feel you're doing your best to control but it's not working for you, then some patients may feel harassed. That will make them defensive, and agressive towards those people.
We understand the goal is to HELP US. I know that half the staff in my unit wouldn't talk about a need to control phos or K or whatever if they didn't actually care and want us to do the best we could while on dialysis. Sometimes it all comes down to the way the message is communicated.
Luckily Sarah the dietician I saw yesterday(and boy did I enjoy seeing her >:D) was pretty gentle on me, because my labs are all pretty much in range, so she was happy enough with where I am at.
Oh one thing that does frustrate me a bit is that some other dieticians I've seen over the years will come along doing the review, and say "Your labs are all great. everything's in the range you want *BUT* you could do to have some more fruit at night and an extra egg a week..." - it's like nothing we can do is good enough... I find that a bit difficult to stomach(pun intended!). I mean if my labs are out in some area then fine suggest stuff, but if everything's going OK why try and fine tune stuff? It makes ME feel like I'm still not good enough somehow.... I understand what they're doing, but it's still somehow a bit insulting to me. I know the particular one that said that didn't mean it that way, but somehow I came away feeling like all my efforts to take binders and control my diet and fluids just wasn't good enough.
-
feel you're doing your best to control but it's not working for you, then some patients may feel harassed. That will make them defensive, and agressive towards those people.
This is me, right here. I was told when I was a child that I had something called Hungry Bone Syndrome, and because of that, it doesn't seem to matter if I take the binders or not, my phosphorus is still high and my calcium is still low. I'm told so much that I need to take the binders that I feel that I should start taking them every hour on the hour, whether I eat or not. It's annoying, although I do understand why they do it. I did go through a period where I wasn't taking anything. I owned up to it and told them the truth, that I wasn't taking anything, and I think since then they have a hard time believing me when I tell them that I am taking them now.
-
I did it!! Our dietitian gave balloons to everyone that had their phosphorus within range so I tied balloons in my hair all day. The dietitian was happy because people would ask about the balloons and I would talk about phosphorus and the patients loved it because they got to laugh at me and my goof ball ways!!
-
That's a neat idea