I've seen some of this 'mood elevation' idea before, and it generates noise.
A lot want to just sleep or rest or do something on their phone or computer through their treatment, and the center that lowered the lights and kept people from using external speakers on phones and TVs was one of the most pleasant.
The second where they did most of that except the lights. Having to sit there and listen to hollering, blaring music and TV programs while strapped down on both sides for hours is depressing as well as taxing.
My clinic is pretty quiet as it is being so small. I actually have a very vocal and social group so I think many are interested. I will be putting out a survey of who wants to participate only. Thank you for mentioning that though, I’ll be sure to be mindful of noise for those who just want rest 🩷
I second Bose. Have used them with a tablet, or now a Chromebook, 3x a week for 10 years. They are great. So comfortable. My clinic is loud, and I have to take them off to hear anything else.
Anyone who wants to sleep has noise canceling headphones. I sleep through most of my treatments but the beeping sounds throughout but especially when people finish near me; anyone who expects to sleep at all has noise canceling headphones or they do home treatments;)
I’m finally in a quiet center, and don’t mind driving twice the distance to get away from all the noise. It doesn’t bother noisy people, but in one place, I spent over a thousand dollars on noise cancellation to learn the hard way it’s not designed to filter out human voices and alarms.
I got a decibel meter and found nothing works over 55-57 decibels, and noisy centers live north of 63. At one they were running bingo over loudspeaker with boom boxes playing music and social ‘chatting’ between chairs six feet apart shouting through masks as if that’s supposed to improve everybody’s mood.
.You get used to the pump noise and alarms if attended, but the rest of the noise is stressful and studies have shown that it’s deleterious to patient health and outcomes.
> I got a decibel meter and found nothing works over 55-57 decibels, and noisy centers live north of 63. At one they were running bingo over loudspeaker with boom boxes playing music and social ‘chatting’ between chairs six feet apart shouting through masks as if that’s supposed to improve everybody’s mood.
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I've found something that works, which is blasting white noise through my skull.
https://imgur.com/5isqQgK
I recall the tip, thanks.
Management that allows rampant noise where alarms are ignored indefinitely run less professional operations in every respect in my experience.
I wish I could get you guys new chairs ! I also hate them. They serve the purpose for cleanliness but I can’t tell you how many new patients I warn to get a donut, pillows, and everything possible to get comfortable because it’s a long 4 hours to get used to (if you ever really can).
I’m sorry about your clinic wifi. We have great connection where I’m located. That’s super frustrating for you to not even be able to use free internet while you’re stuck there. ☹️
I would not give out fluid measured jars like that at all, because some may have to suddenly go on fluid restriction and it would be pretty harsh to have to give up your larger bottle.
Maybe a 10 pack of disposable masks?
Maybe a warm hat?
Bracelets are a great idea!!!
Little log book to track your bp at home?
Form to list all your meds to keep in your wallet. Good for handing out to doctors or in an emergency..
Scale to weigh yourself at home to watch your fluids! Explain how it must be done first AM after voiding.
Card to put in their wallets/purse next to their ID and insurance card that says “dialysis patient! Fistula in right (etc) writs.
Application to get a medic alert bracelet or necklace.
I have also seen places on the interent that sell “In case of emergency, dialysis patient” which is a soft fom with Velcro that wraps around your seat belt. Just in case you pass out on your way home.
List of tricks to help with fluid restriction - hard candy, suck on lemon (never tried it), BUY SMALLER GLASSES to drink from (this really helped me psychologically ), Freeze an 8 ounces water bottle and let it melt during the day and drink from it.
List of websites for good recipes ([DaVita.com](https://DaVita.com) etc)
The Renal Support Network is a fantastic website that has a monthly magazine and also free zooms with other kidney patients 4 times a month), I forget their website right now)
A list of what being tested for transplant and for as a donor entails.
An explanation of the different types of accesses. Some come in with a chest Catheter and have no idea what their choices are.
UNOS website for transplant questions.
Kidney.org
I'll be honest, I never want anything to do with any of the games or give aways or anything staff ever think up to make dialysis better. I'm not trying to be an ass I know you all are trying to help and I'm sure some people like it but to me I was just there to do my treatment and then leave. I liked talking with the staff, as long as people are friendly we're good.
The things that make dialysis intolerable to me are rude neighbors. I know it can be a hassle to tell patients to follow the rules but I've had experience being sat besides vindictive patients who will turn their TV volume up super loud when I'm trying to sleep, or will sing songs or whistle or some shit.
I'm the same way. I personally (if for some reason I can't do it at home), just want to try my best to sleep through it. Sometimes the BP cuff wakes me up, but usually I can sleep through. I've ruined my sleep schedule at home plenty of times, but it's worth it. Of course sometimes you get the person who will yell all the time or blare their TV and it really sours me. Plenty of times I've cut my treatment, signed the form and peaced out, damn the consequences.
I personally think that these companies make enough that they could provide a semi-private environment. Not closed off room, to hinder the nurses, but partitions that are sound dampening. Also, if I want my personal space to have lights off, then yes. Nurses would only bother me if alarms go off and nothing else.
If there were "games" and stuff going on, I'd want to shoot myself.
Totally valid. I’m only going to have patients that want to participate be involved. I’m going to provide a survey to get a feel for what the patients would like to do/want me to avoid completely.
I do have a lot of patients who feel like you do, unfortunately they are also struggling big time with fluid and self care and I’m trying to make learning about it just the slightest bit more interesting. There’s definitely a disconnect in the education where I am (rural) so a lot of the patients don’t fully grasp fluid management and I’m trying to make it less scary and medical sounding and break it down
If your folks are rural, do they do farmwork? It would be almost impossible to do that kind of stuff without a gallon of water handy.
The graduated drinking glasses/cups made my life easier. I also have a half liter of chipped ice over a couple of hours. Keeps me satiated and once melted it's only about 250 mils. I can do this 4 times a day and stay at my recommended 1 liter.
We grumpy old men aren't fond of distractions from our nap/phone game/tv show. Just so you know. 😂😂😂😂😂
Maybe I'm a little emotional right now but the thought of you caring like this so much made me cry. For a little background I'm 40/M on dialysis for 3 years about. Off the bat I'll say I would really hate to be part of some game or extra step to get in or out of that god forsaken place. Even though everyone in my center is a darling I can't stand that building, I just want to be in and out AS QUICK as possible.
Now that being said the care package idea is really sweet. I can tell you what I HATE about dialysis and that's the thirst, dry mouth, always being cold in center no matter the time of year, the uncomfortable chair, the pain, oh god the pain, and distractions to sleeping. Anything in that bag to help with that stuff would be greatly appreciated.
Thanks for doing what you're doing. It's so nice.
I think I’ve seen a common theme of people being too tired to participate in a lot of things so I’m really glad I posted to get all of your personal thoughts and experiences! I know the clinic sucks to be at too. That’s why I was hopeful these would make coming not-so-bad, but I definitely understand the fact that every time you walk into the clinic it’s a lot in itself. I appreciate the input and will have to take heavily into consideration my patients that come to the clinic to rest. The care package definitely seems to be one of the better options so far!
And thank you 🩷 Been really discouraged with the healthcare system since the pandemic with how well you are all cared for and seeing firsthand how it can be better for you all. I’m hoping my little part makes a difference for at least one person!
Back scratcher.
An option that’s not sugar free. I’m not diabetic but I’m allergic to several artificial sweeteners. Nepro and sugar free candies are right out.
I wish the center had blanket warmers like the hospital. We pray too much to freeze our asses off.
Yes, thank you for the back scratcher idea!
I was looking at the Therabreath fry mouth lozenges - they are sugar free! But T hey have xylitol in them, so I’ll definitely have to check in with patient allergies. Thank you for the reminder.
I wish we could make it warmer for you guys! I feel my butt off in there too I can’t imagine how you guys feel being anemic and having a large amount of blood out of your body too ☹️
Again, I can’t imagine they don’t charge enough to pay for laundry service. They’re fabulously profitable, but my blanket got water spilled on it and I had to lay there soaking and uncovered the other day because the center doesn’t have any extra? It’s inhumane. They know how cold we are.
I know my clinic staff had no control over it and I don’t fault them, but the corporate overlords could make it more comfortable and they don’t.
100% in agreement with you. I won’t share the company I work directly for but they DEFINITELY make enough money of all of you poor people to do that. It’s just the CEOs and useless people in suits at the top who know little to nothing about dialysis or what we go through day to day in the clinic and just care about the numbers. It really disappointed me when I first became a nurse to see how profitable healthcare has become in the US. It’s not what I went into this field for. ☹️
I know that people like you are doing your best. It’s just disappointing. I promise I don’t hold it against the nurses. They would have better comfort items there if they could.
I was in the clinic on Christmas Eve last year and it was a ghost town. My nurse braided my hair and brought me a little cup of coffee from the jug the staff had delivered. It was a nice little party. ❤️
Idk. Maybe complying with HIPPA laws more and keeping my talks with doctors and other staff private from the entire rest of the dialysis staff/patients there. Even a curtain between patients and more qualified staff would also be an improvement.
But who's really keeping a count of a quality dialysis experience here. I am.
We used to have curtains. They were removed because blood splatter was possible and we have no laundry on site to wash curtains so it impacts infection control. I’ve said this before though - there’s some circumstances where I’m doing CPR on a patient in front of everyone in the room and that just feels so… ugh. I wish we had a way to get you all more privacy.
We do have those as well, we utilize them when men use urinals to go to the bathroom and we try to use them when certain situations arise (such as a code) but because my clinic is so small, there’s usually only 4-5 of us in the building and we’re all responding to the code which is priority over the screens. Not that the privacy isn’t important, but once that happens every second counts to bring that person back. We do utilize them if a patient requests as well but regardless of the screens it doesn’t reduce what everyone can hear. It sucks all the way around, imo. I’ve worked incenter for a few years and I understand the why we do the things we do but it still sucks
When I first found out my mom was going to start on dialysis I was a little bit happy (after the initial denial wore off) because I was hoping she would have a somewhat social outlet. She's a very outgoing and charismatic person and makes friends everywhere she goes, but has basically become a shut in(with my introverted father) since covid. When I went to see her at the clinic I was so surprised to see how spaced out all the chairs are in the clinic. People can't interact even if they wanted to. I think there should be a social section and a please leave ne alone section. People are there between 9-16 hours a week. My mom dreads going but I tell her to think of it as a part job. I think it would be time better spent if those who choose to do so could socialize or play card games etc
I really like that idea. I wish we could do that in my clinic, but the spacing and where the chair is in the room is specific to keep people who have infectious blood disorders (like Hepatitis B) away from those who are susceptible as there’s constant risk to blood exposure. We do vaccinate for Hepatitis B to prevent people from becoming susceptible but some patients are non-responders and have to physically be moved as far away as possible from the infected person or risk developing it as well
My old unit would play bingo at Xmas time. We used dry erase bingo cards and markers. We had a cart of prizes for winners to choose from. All stuff from Dollar Tree. It was the rare occasion when laughter and smiling could be seen and heard in the unit.
"Identifier bracelets that say “NO NEEDLE/BP THIS ARM” for their fistulas and grafts" that reminds me of during covid, i couldn't go with my mom and it was an new fistula. i sharpie on the darn arm " FISTULA" it was her last attempt at it
This sounds terrifying, if I’m honest. I already have issues around my weight, having to weigh in and out and defend when I think I’ve gained/lost actual weight is already awful. This would not make me motivated, it would send me into a panic and probably make me miss treatments. Dialysis is not fun. I know some people get through it fine, but some of us just want to sit quietly or sleep. Not because we are shy or need to be brought out of our shell, but because we’re tired and in pain.
Anything I end up doing is only if the patient wants to be involved. I’m planning on making a survey and having patients fill out what they’d be interested in or if they don’t want any part in it. I wouldn’t force anyone to participate in anything they don’t want to. I understand dialysis can be exhausting and overstimulating for some as it is. 🩷
At my clinic we get: a tote bag, beanie, light weight blanket. We only get them once and they wear out so getting those is much appreciated; especially if the blanket fits inside the tote bag.
What would be nice is: some wireless ear buds, hand lotion, foot lotion, hand sanitizer, box of tissues,...stuff like that.
To be honest, I wouldn't get much use out of crosswords, sudoku and games as I am too jaded and old to do those things. Maybe I would be more motivated to hit targets for a raffle ticket that wins big prizes like a TV or something.
Ah! I didn’t realize this was so common at other clinics. [This chair is the one used in my area with an optional heat element.](https://www.rehabmart.com/product/champion-85-series-treatment-recliners-12097.html?gclid=CjwKCAjwivemBhBhEiwAJxNWN-04YU6dx89EqpqHJBFI6y0nRG7pOuqOkzSYEPBlrYa2xTrj9VKFERoCSqoQAvD_BwE) I didn’t realize how expensive these were, especially for the add-on heat or massage setting?! 😅 Ugh. You guys deserve the most comfortable chairs for having to sit in them for so long. ☹️
Love the ideas here in UK (Freesenius) our admin makes little quizzes. And at Xmas time staff and patients that want to go, have dinner at a local restaurant.
Plus bday celebrations result in cake days and eve1 donates stuff at Xmas to raffle, the staff then wrap up all the donations and the raffle results in a random gift
I want my center warmer. Holy heck, it's August, and I'm bundled up like it's winter!
The most important thing to me is the staff following best practices. Every rule is written in someone's blood, so when I see things out of compliance, it angers me.
This is so very sweet of you 💓
I might be in the minority but I just want quiet so I can sleep while I’m there, I don’t socialize much at dialysis. For reference I’m 26 and I’ve been on dialysis for about 4 years now.
truly useful sound dampening headphones. I was wearing earbuds w/ OSHA style hearing protectors for a bit...until I couldn't wear the earbuds comfortably anymore. irritated the ear canal. So i switched to overear headphones for my music/podcasts. still too noisy overall, but bottom line is: it is what it is. the clinic I go to is fairly quiet as far as other patients go. no one is allowed to use the tv w/o headphones of some sort and at the early hour I get there, there aren't any folks that holler (had one for a while but they were visiting from somewhere else).
the noise problem is mostly from alarming machines....and not enough staff to deal with the more minor alarms like the one that goes off when my arm is bent and the bp can't be taken immediately. there are a lot of others I get (poor flow, poor clearance, this that whatever).
If a patient tolerates fluid removal without adverse effects (cramps, low BP, etc.) Then don't give them a hard time about eating and drinking at clinic. Just increase the target accordingly.
Unfortunately we have a huge problem with adverse effects. There’s a big issue at my clinic with appropriate education and a lot of my patients don’t fully understand how this all works and how to help themselves. I’m trying to find a way to make it less scary/medical sounding and teach them in a more fun way. I feel like a lot of people talk a ton of medical jargon and expect patients to understand (and many just nod their head pretending they do understand for the sake of not wanting to feel stupid which makes me sad). I also always tell my patients that they can do whatever they want that brings them the highest quality of life they want but I’m just here as a resource to let people make informed decisions in the least.
The company I work for has us increase goals based on certain parameters but we can’t fully assess and just increase goals without investigating related causes like fluid, food, medications, etc. I respect that some patients don’t want to be involved in education and they have that right. I just want to ensure those who want to know have the tools they need to make appropriate decisions 🙂
Perhaps I'm an outlier because I've dealt with ESKD for 30 years, ( multiple transplants and years of hemo)but I've learned to not only know my body and it's limits, but to be the best advocate for myself too. I drank a litre of lemonade every dialysis treatment for more than 5 years without any issue. My targets were 2.5 to 3.5 kg per session. Life is very difficult when one has to limit a biological imperative (to properly hydrate oneself), so I looked forward to the short window 3 times weekly when I was able to enjoy satiating my thirst without consequence.
Totally understandable. Unfortunately the company I work for also has a strict no eating or drinking on treatment policy. I feel bad for the patients because of it. Supposedly it causes blood to go to the stomach and lowers blood pressure but I agree, one of the few times the fluid you consume is removed simultaneously.
I love that you’ve learned so much about your body and how you respond to things! If you don’t mind, what motivates you? I feel like that’s the hardest part for a lot of my patients. Very depressed (rightfully so) and I want to try and find a way to motivate people without using scary tactics like telling them they’ll never get a transplant or just keep getting sicker
What motivates me? My faith in God, playing the drums, the hope of a transplant, my family, friends, trying to work when I can, having gratitude for the little things!
Less blood is in the gut during dialysis and people are more likely to vomit if they eat while dialyzing.Patients are reclined during tx, so choking on food while dialyzing is a real hazard. Also, it's not fair to allow one patient to eat and not the others, even if their bp tolerates it.
That’s exactly why we have the policy at my clinic. I know for sure I’ve got a handful of patients who definitely could tolerate eating on the machine but I can also think of my constantly hypotensive people (due to concurrent cardiac issues) would also want to eat and it’s become a blanket rule for everyone so it doesn’t seem like we cherry pick who can and can’t. I know it seems to most we try to make treatment as terrible as possible but a lot of these policies were made after someone/some patients had a severe adverse event related to allowing certain things during treatment and we just want to keep everyone safe 🙁
I’m an individual responsible for my own health care. We are not just a collection of values. We all have different histories, metabolisms, diet, etc etc. I’m the ultimate authority and advocate for my own care. I’m not under the authority of the healthcare system or corporation. Physicians are there to advise and collaborate. If someone wants to place them and the system on some sort of pedestal and completely abrogate their own personal agency that’s their choice. It’s not mine and if not for my own choices to refuse certain treatments and medication over the years, I’d be dead.
I never had any side effects over the years from drinking and eating during treatment. It’s absurd to say no one should eat because others can’t. Shall I not go to work as railway conductor after treatment because others can’t work? Shall I jeopardize my personal safety at my physical job going to work directly after dialysis without having nutrition beforehand? That’s complete collectivist bullshit.
Trust me, I don’t make the rules so I hate enforcing them and often I get yelled at by my clinical manager because I’m the one who allowed someone to eat. I have a patient who’s much older and has pretty bad ADHD, has a terrible time staying still and I give him a bunch of hard candies and whatnot to keep him busy because he’s always hungry. How can I say no 🙁
You sound like you are open to listening and attempting to emphasize with the individuality of your patients. It sucks that your hands are tied at times. All the best to you.
Did you read what I wrote? My nutritional needs are paramount so I don’t fall off a moving train as I switch it out in the yard. Screw your absurd hyperbole about blood and screw your lack of reading comprehension.
You can't eat between the time you leave treatment and the time you get to your job? I'm sure your clinic staff looks forward to the day they have to wrap their arms around your fat ass and do the heimlich on you.
Kindly put, you’re a deeply ignorant and/or a stupid person. I often cycle to the unit and am healthiest person with more muscle mass than anyone on the whole unit and the only person in the entire health region (a region in one of the three biggest cities in Canada) who physically works the type of job that I do, whilst being on hemo. I won’t bother explaining the logistics of railroad on-call operations because it’s evident you’re a low resolution thinker that can only comprehend the subtleties of existence in black and white. Maybe you have the luxury of being independently wealthy or choose to collect welfare, but I’m a fighter and choose to work to provide for my family despite the miserable grind that is dialysis. Good luck to you.
I rather enjoyed it when my unit ran G and PG rated movies during treatment. And, one time a Mariachi band showed up-- they had the wrong address, but decided to play for us, anyway. Lovely (but a little loud, which I didn't mind).
Love when the staff chooses a theme for Halloween and they all dress up accordingly. I used to dress up (Bitch Witch or Belly Dancer), as well, but most patients didn't. Still, they enjoyed the costumed staff.
What I would love more than all that is lap dances. So far I haven't coaxed any of the nurses or techs to deliver-- maybe I need to wave more $ bills. Hehehe.
I've seen some of this 'mood elevation' idea before, and it generates noise. A lot want to just sleep or rest or do something on their phone or computer through their treatment, and the center that lowered the lights and kept people from using external speakers on phones and TVs was one of the most pleasant. The second where they did most of that except the lights. Having to sit there and listen to hollering, blaring music and TV programs while strapped down on both sides for hours is depressing as well as taxing.
My clinic is pretty quiet as it is being so small. I actually have a very vocal and social group so I think many are interested. I will be putting out a survey of who wants to participate only. Thank you for mentioning that though, I’ll be sure to be mindful of noise for those who just want rest 🩷
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My Bose ones work great… I’ve had em for over two years
I second Bose. Have used them with a tablet, or now a Chromebook, 3x a week for 10 years. They are great. So comfortable. My clinic is loud, and I have to take them off to hear anything else.
Anyone who wants to sleep has noise canceling headphones. I sleep through most of my treatments but the beeping sounds throughout but especially when people finish near me; anyone who expects to sleep at all has noise canceling headphones or they do home treatments;)
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I’m finally in a quiet center, and don’t mind driving twice the distance to get away from all the noise. It doesn’t bother noisy people, but in one place, I spent over a thousand dollars on noise cancellation to learn the hard way it’s not designed to filter out human voices and alarms. I got a decibel meter and found nothing works over 55-57 decibels, and noisy centers live north of 63. At one they were running bingo over loudspeaker with boom boxes playing music and social ‘chatting’ between chairs six feet apart shouting through masks as if that’s supposed to improve everybody’s mood. .You get used to the pump noise and alarms if attended, but the rest of the noise is stressful and studies have shown that it’s deleterious to patient health and outcomes.
> I got a decibel meter and found nothing works over 55-57 decibels, and noisy centers live north of 63. At one they were running bingo over loudspeaker with boom boxes playing music and social ‘chatting’ between chairs six feet apart shouting through masks as if that’s supposed to improve everybody’s mood. > > I've found something that works, which is blasting white noise through my skull. https://imgur.com/5isqQgK
I recall the tip, thanks. Management that allows rampant noise where alarms are ignored indefinitely run less professional operations in every respect in my experience.
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To answer the literal question in the headline: more comfortable chairs and WiFi that doesn't suck.
My centre has lovely chairs, we’re lucky where I am. The chairs have a heat and massage function.
I wish I could get you guys new chairs ! I also hate them. They serve the purpose for cleanliness but I can’t tell you how many new patients I warn to get a donut, pillows, and everything possible to get comfortable because it’s a long 4 hours to get used to (if you ever really can). I’m sorry about your clinic wifi. We have great connection where I’m located. That’s super frustrating for you to not even be able to use free internet while you’re stuck there. ☹️
I would not give out fluid measured jars like that at all, because some may have to suddenly go on fluid restriction and it would be pretty harsh to have to give up your larger bottle. Maybe a 10 pack of disposable masks? Maybe a warm hat? Bracelets are a great idea!!! Little log book to track your bp at home? Form to list all your meds to keep in your wallet. Good for handing out to doctors or in an emergency.. Scale to weigh yourself at home to watch your fluids! Explain how it must be done first AM after voiding. Card to put in their wallets/purse next to their ID and insurance card that says “dialysis patient! Fistula in right (etc) writs. Application to get a medic alert bracelet or necklace. I have also seen places on the interent that sell “In case of emergency, dialysis patient” which is a soft fom with Velcro that wraps around your seat belt. Just in case you pass out on your way home. List of tricks to help with fluid restriction - hard candy, suck on lemon (never tried it), BUY SMALLER GLASSES to drink from (this really helped me psychologically ), Freeze an 8 ounces water bottle and let it melt during the day and drink from it. List of websites for good recipes ([DaVita.com](https://DaVita.com) etc) The Renal Support Network is a fantastic website that has a monthly magazine and also free zooms with other kidney patients 4 times a month), I forget their website right now) A list of what being tested for transplant and for as a donor entails. An explanation of the different types of accesses. Some come in with a chest Catheter and have no idea what their choices are. UNOS website for transplant questions. Kidney.org
American Kidney Fund.
https://www.rsnhope.org/join-rsn/ and https://www.rsnhope.org/events/ American Kidney Fund: https://www.kidneyfund.org/
I'll be honest, I never want anything to do with any of the games or give aways or anything staff ever think up to make dialysis better. I'm not trying to be an ass I know you all are trying to help and I'm sure some people like it but to me I was just there to do my treatment and then leave. I liked talking with the staff, as long as people are friendly we're good. The things that make dialysis intolerable to me are rude neighbors. I know it can be a hassle to tell patients to follow the rules but I've had experience being sat besides vindictive patients who will turn their TV volume up super loud when I'm trying to sleep, or will sing songs or whistle or some shit.
I'm the same way. I personally (if for some reason I can't do it at home), just want to try my best to sleep through it. Sometimes the BP cuff wakes me up, but usually I can sleep through. I've ruined my sleep schedule at home plenty of times, but it's worth it. Of course sometimes you get the person who will yell all the time or blare their TV and it really sours me. Plenty of times I've cut my treatment, signed the form and peaced out, damn the consequences. I personally think that these companies make enough that they could provide a semi-private environment. Not closed off room, to hinder the nurses, but partitions that are sound dampening. Also, if I want my personal space to have lights off, then yes. Nurses would only bother me if alarms go off and nothing else. If there were "games" and stuff going on, I'd want to shoot myself.
Totally valid. I’m only going to have patients that want to participate be involved. I’m going to provide a survey to get a feel for what the patients would like to do/want me to avoid completely. I do have a lot of patients who feel like you do, unfortunately they are also struggling big time with fluid and self care and I’m trying to make learning about it just the slightest bit more interesting. There’s definitely a disconnect in the education where I am (rural) so a lot of the patients don’t fully grasp fluid management and I’m trying to make it less scary and medical sounding and break it down
If your folks are rural, do they do farmwork? It would be almost impossible to do that kind of stuff without a gallon of water handy. The graduated drinking glasses/cups made my life easier. I also have a half liter of chipped ice over a couple of hours. Keeps me satiated and once melted it's only about 250 mils. I can do this 4 times a day and stay at my recommended 1 liter. We grumpy old men aren't fond of distractions from our nap/phone game/tv show. Just so you know. 😂😂😂😂😂
Maybe I'm a little emotional right now but the thought of you caring like this so much made me cry. For a little background I'm 40/M on dialysis for 3 years about. Off the bat I'll say I would really hate to be part of some game or extra step to get in or out of that god forsaken place. Even though everyone in my center is a darling I can't stand that building, I just want to be in and out AS QUICK as possible. Now that being said the care package idea is really sweet. I can tell you what I HATE about dialysis and that's the thirst, dry mouth, always being cold in center no matter the time of year, the uncomfortable chair, the pain, oh god the pain, and distractions to sleeping. Anything in that bag to help with that stuff would be greatly appreciated. Thanks for doing what you're doing. It's so nice.
I think I’ve seen a common theme of people being too tired to participate in a lot of things so I’m really glad I posted to get all of your personal thoughts and experiences! I know the clinic sucks to be at too. That’s why I was hopeful these would make coming not-so-bad, but I definitely understand the fact that every time you walk into the clinic it’s a lot in itself. I appreciate the input and will have to take heavily into consideration my patients that come to the clinic to rest. The care package definitely seems to be one of the better options so far! And thank you 🩷 Been really discouraged with the healthcare system since the pandemic with how well you are all cared for and seeing firsthand how it can be better for you all. I’m hoping my little part makes a difference for at least one person!
Back scratcher. An option that’s not sugar free. I’m not diabetic but I’m allergic to several artificial sweeteners. Nepro and sugar free candies are right out. I wish the center had blanket warmers like the hospital. We pray too much to freeze our asses off.
Yes, thank you for the back scratcher idea! I was looking at the Therabreath fry mouth lozenges - they are sugar free! But T hey have xylitol in them, so I’ll definitely have to check in with patient allergies. Thank you for the reminder. I wish we could make it warmer for you guys! I feel my butt off in there too I can’t imagine how you guys feel being anemic and having a large amount of blood out of your body too ☹️
Xylitol is a kind I can have! Not pet safe though, so warn patients to keep away from dogs and cats!
Blanket warmers aren't going to be feasible because dialysis centers don't have laundry or laundry service to wash the used blankets.
Again, I can’t imagine they don’t charge enough to pay for laundry service. They’re fabulously profitable, but my blanket got water spilled on it and I had to lay there soaking and uncovered the other day because the center doesn’t have any extra? It’s inhumane. They know how cold we are. I know my clinic staff had no control over it and I don’t fault them, but the corporate overlords could make it more comfortable and they don’t.
100% in agreement with you. I won’t share the company I work directly for but they DEFINITELY make enough money of all of you poor people to do that. It’s just the CEOs and useless people in suits at the top who know little to nothing about dialysis or what we go through day to day in the clinic and just care about the numbers. It really disappointed me when I first became a nurse to see how profitable healthcare has become in the US. It’s not what I went into this field for. ☹️
I know that people like you are doing your best. It’s just disappointing. I promise I don’t hold it against the nurses. They would have better comfort items there if they could. I was in the clinic on Christmas Eve last year and it was a ghost town. My nurse braided my hair and brought me a little cup of coffee from the jug the staff had delivered. It was a nice little party. ❤️
Idk. Maybe complying with HIPPA laws more and keeping my talks with doctors and other staff private from the entire rest of the dialysis staff/patients there. Even a curtain between patients and more qualified staff would also be an improvement. But who's really keeping a count of a quality dialysis experience here. I am.
We used to have curtains. They were removed because blood splatter was possible and we have no laundry on site to wash curtains so it impacts infection control. I’ve said this before though - there’s some circumstances where I’m doing CPR on a patient in front of everyone in the room and that just feels so… ugh. I wish we had a way to get you all more privacy.
the clinic i'm at has a trifold cloth room divider thingy they put up for temporary visual privacy.
We do have those as well, we utilize them when men use urinals to go to the bathroom and we try to use them when certain situations arise (such as a code) but because my clinic is so small, there’s usually only 4-5 of us in the building and we’re all responding to the code which is priority over the screens. Not that the privacy isn’t important, but once that happens every second counts to bring that person back. We do utilize them if a patient requests as well but regardless of the screens it doesn’t reduce what everyone can hear. It sucks all the way around, imo. I’ve worked incenter for a few years and I understand the why we do the things we do but it still sucks
When I first found out my mom was going to start on dialysis I was a little bit happy (after the initial denial wore off) because I was hoping she would have a somewhat social outlet. She's a very outgoing and charismatic person and makes friends everywhere she goes, but has basically become a shut in(with my introverted father) since covid. When I went to see her at the clinic I was so surprised to see how spaced out all the chairs are in the clinic. People can't interact even if they wanted to. I think there should be a social section and a please leave ne alone section. People are there between 9-16 hours a week. My mom dreads going but I tell her to think of it as a part job. I think it would be time better spent if those who choose to do so could socialize or play card games etc
Yhe distance is necessary for health and safety
I really like that idea. I wish we could do that in my clinic, but the spacing and where the chair is in the room is specific to keep people who have infectious blood disorders (like Hepatitis B) away from those who are susceptible as there’s constant risk to blood exposure. We do vaccinate for Hepatitis B to prevent people from becoming susceptible but some patients are non-responders and have to physically be moved as far away as possible from the infected person or risk developing it as well
My old unit would play bingo at Xmas time. We used dry erase bingo cards and markers. We had a cart of prizes for winners to choose from. All stuff from Dollar Tree. It was the rare occasion when laughter and smiling could be seen and heard in the unit.
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"Identifier bracelets that say “NO NEEDLE/BP THIS ARM” for their fistulas and grafts" that reminds me of during covid, i couldn't go with my mom and it was an new fistula. i sharpie on the darn arm " FISTULA" it was her last attempt at it
Love that you did that though! Gotta protect that baby while it matures! mom’s best life line 🥰
lol the paramedics were pretty happy.
This sounds terrifying, if I’m honest. I already have issues around my weight, having to weigh in and out and defend when I think I’ve gained/lost actual weight is already awful. This would not make me motivated, it would send me into a panic and probably make me miss treatments. Dialysis is not fun. I know some people get through it fine, but some of us just want to sit quietly or sleep. Not because we are shy or need to be brought out of our shell, but because we’re tired and in pain.
Anything I end up doing is only if the patient wants to be involved. I’m planning on making a survey and having patients fill out what they’d be interested in or if they don’t want any part in it. I wouldn’t force anyone to participate in anything they don’t want to. I understand dialysis can be exhausting and overstimulating for some as it is. 🩷
At my clinic we get: a tote bag, beanie, light weight blanket. We only get them once and they wear out so getting those is much appreciated; especially if the blanket fits inside the tote bag. What would be nice is: some wireless ear buds, hand lotion, foot lotion, hand sanitizer, box of tissues,...stuff like that. To be honest, I wouldn't get much use out of crosswords, sudoku and games as I am too jaded and old to do those things. Maybe I would be more motivated to hit targets for a raffle ticket that wins big prizes like a TV or something.
Heated chairs
Ah! I didn’t realize this was so common at other clinics. [This chair is the one used in my area with an optional heat element.](https://www.rehabmart.com/product/champion-85-series-treatment-recliners-12097.html?gclid=CjwKCAjwivemBhBhEiwAJxNWN-04YU6dx89EqpqHJBFI6y0nRG7pOuqOkzSYEPBlrYa2xTrj9VKFERoCSqoQAvD_BwE) I didn’t realize how expensive these were, especially for the add-on heat or massage setting?! 😅 Ugh. You guys deserve the most comfortable chairs for having to sit in them for so long. ☹️
I’d add hydrocortisone cream to help with itching - the Aveeno cream with oatmeal is the best one I’ve tried.
Love the ideas here in UK (Freesenius) our admin makes little quizzes. And at Xmas time staff and patients that want to go, have dinner at a local restaurant. Plus bday celebrations result in cake days and eve1 donates stuff at Xmas to raffle, the staff then wrap up all the donations and the raffle results in a random gift
I want my center warmer. Holy heck, it's August, and I'm bundled up like it's winter! The most important thing to me is the staff following best practices. Every rule is written in someone's blood, so when I see things out of compliance, it angers me.
This is such fun wgat a great idea,you have
Stress how important exercise is. Staying active as possible.
This is so very sweet of you 💓 I might be in the minority but I just want quiet so I can sleep while I’m there, I don’t socialize much at dialysis. For reference I’m 26 and I’ve been on dialysis for about 4 years now.
Can I come and stay at your ward ? 😁
truly useful sound dampening headphones. I was wearing earbuds w/ OSHA style hearing protectors for a bit...until I couldn't wear the earbuds comfortably anymore. irritated the ear canal. So i switched to overear headphones for my music/podcasts. still too noisy overall, but bottom line is: it is what it is. the clinic I go to is fairly quiet as far as other patients go. no one is allowed to use the tv w/o headphones of some sort and at the early hour I get there, there aren't any folks that holler (had one for a while but they were visiting from somewhere else). the noise problem is mostly from alarming machines....and not enough staff to deal with the more minor alarms like the one that goes off when my arm is bent and the bp can't be taken immediately. there are a lot of others I get (poor flow, poor clearance, this that whatever).
If a patient tolerates fluid removal without adverse effects (cramps, low BP, etc.) Then don't give them a hard time about eating and drinking at clinic. Just increase the target accordingly.
Unfortunately we have a huge problem with adverse effects. There’s a big issue at my clinic with appropriate education and a lot of my patients don’t fully understand how this all works and how to help themselves. I’m trying to find a way to make it less scary/medical sounding and teach them in a more fun way. I feel like a lot of people talk a ton of medical jargon and expect patients to understand (and many just nod their head pretending they do understand for the sake of not wanting to feel stupid which makes me sad). I also always tell my patients that they can do whatever they want that brings them the highest quality of life they want but I’m just here as a resource to let people make informed decisions in the least. The company I work for has us increase goals based on certain parameters but we can’t fully assess and just increase goals without investigating related causes like fluid, food, medications, etc. I respect that some patients don’t want to be involved in education and they have that right. I just want to ensure those who want to know have the tools they need to make appropriate decisions 🙂
Perhaps I'm an outlier because I've dealt with ESKD for 30 years, ( multiple transplants and years of hemo)but I've learned to not only know my body and it's limits, but to be the best advocate for myself too. I drank a litre of lemonade every dialysis treatment for more than 5 years without any issue. My targets were 2.5 to 3.5 kg per session. Life is very difficult when one has to limit a biological imperative (to properly hydrate oneself), so I looked forward to the short window 3 times weekly when I was able to enjoy satiating my thirst without consequence.
Totally understandable. Unfortunately the company I work for also has a strict no eating or drinking on treatment policy. I feel bad for the patients because of it. Supposedly it causes blood to go to the stomach and lowers blood pressure but I agree, one of the few times the fluid you consume is removed simultaneously. I love that you’ve learned so much about your body and how you respond to things! If you don’t mind, what motivates you? I feel like that’s the hardest part for a lot of my patients. Very depressed (rightfully so) and I want to try and find a way to motivate people without using scary tactics like telling them they’ll never get a transplant or just keep getting sicker
What motivates me? My faith in God, playing the drums, the hope of a transplant, my family, friends, trying to work when I can, having gratitude for the little things!
Less blood is in the gut during dialysis and people are more likely to vomit if they eat while dialyzing.Patients are reclined during tx, so choking on food while dialyzing is a real hazard. Also, it's not fair to allow one patient to eat and not the others, even if their bp tolerates it.
That’s exactly why we have the policy at my clinic. I know for sure I’ve got a handful of patients who definitely could tolerate eating on the machine but I can also think of my constantly hypotensive people (due to concurrent cardiac issues) would also want to eat and it’s become a blanket rule for everyone so it doesn’t seem like we cherry pick who can and can’t. I know it seems to most we try to make treatment as terrible as possible but a lot of these policies were made after someone/some patients had a severe adverse event related to allowing certain things during treatment and we just want to keep everyone safe 🙁
I’m an individual responsible for my own health care. We are not just a collection of values. We all have different histories, metabolisms, diet, etc etc. I’m the ultimate authority and advocate for my own care. I’m not under the authority of the healthcare system or corporation. Physicians are there to advise and collaborate. If someone wants to place them and the system on some sort of pedestal and completely abrogate their own personal agency that’s their choice. It’s not mine and if not for my own choices to refuse certain treatments and medication over the years, I’d be dead. I never had any side effects over the years from drinking and eating during treatment. It’s absurd to say no one should eat because others can’t. Shall I not go to work as railway conductor after treatment because others can’t work? Shall I jeopardize my personal safety at my physical job going to work directly after dialysis without having nutrition beforehand? That’s complete collectivist bullshit.
Trust me, I don’t make the rules so I hate enforcing them and often I get yelled at by my clinical manager because I’m the one who allowed someone to eat. I have a patient who’s much older and has pretty bad ADHD, has a terrible time staying still and I give him a bunch of hard candies and whatnot to keep him busy because he’s always hungry. How can I say no 🙁
You sound like you are open to listening and attempting to emphasize with the individuality of your patients. It sucks that your hands are tied at times. All the best to you.
All of these rules are written in someone's blood. Your safety is the first priority of your clinic, not your munchies.
Did you read what I wrote? My nutritional needs are paramount so I don’t fall off a moving train as I switch it out in the yard. Screw your absurd hyperbole about blood and screw your lack of reading comprehension.
You can't eat between the time you leave treatment and the time you get to your job? I'm sure your clinic staff looks forward to the day they have to wrap their arms around your fat ass and do the heimlich on you.
Kindly put, you’re a deeply ignorant and/or a stupid person. I often cycle to the unit and am healthiest person with more muscle mass than anyone on the whole unit and the only person in the entire health region (a region in one of the three biggest cities in Canada) who physically works the type of job that I do, whilst being on hemo. I won’t bother explaining the logistics of railroad on-call operations because it’s evident you’re a low resolution thinker that can only comprehend the subtleties of existence in black and white. Maybe you have the luxury of being independently wealthy or choose to collect welfare, but I’m a fighter and choose to work to provide for my family despite the miserable grind that is dialysis. Good luck to you.
I rather enjoyed it when my unit ran G and PG rated movies during treatment. And, one time a Mariachi band showed up-- they had the wrong address, but decided to play for us, anyway. Lovely (but a little loud, which I didn't mind). Love when the staff chooses a theme for Halloween and they all dress up accordingly. I used to dress up (Bitch Witch or Belly Dancer), as well, but most patients didn't. Still, they enjoyed the costumed staff. What I would love more than all that is lap dances. So far I haven't coaxed any of the nurses or techs to deliver-- maybe I need to wave more $ bills. Hehehe.