The following will be printed out and signed by my fellow dialysis patients and given to the staff at the unit. Because I am asked frequently what it is like in the dialysis room, I leave a copy here as part of my “Keeping it Real” series because, honestly, this is as real as it gets . . . .
To ALL Staff Members of (said) Dialysis Unit,
Please remember that you have asked for honest feedback for months now, so it is the expectation of the patients you care for that this feedback will be taken seriously and areas needing change will see just that immediately. Do not brush us under the carpet with a roll of the eyes and a comment such as “they will never be happy with anything we do here.” We are grateful for the things you do well and we have lavished you with gratitude for those few things. But quite frankly, you have managed to completely piss me (and my fellow patients) off and I was asked to represent the overall feel of the majority of patients by writing this letter, which you can see has been signed by most.
We find you to be quite nasty and disrespectful. We realize this is “your unit” and you want the kudos of having all numbers round in your favor, but the truth is, it is not going to happen. Many of us are doing the best we can and you telling us every single time you see us to “watch your fluids” is enough to make us want to jump out of these chairs and wring your neck with the cord of these blood pressure cuffs! We would pay top dollar to see you TRY to sit in one of these chairs for even one hour AND drink only 32 ounces of fluid for a weekend that is 95 degrees with a humidity level that makes it feel like 110 degrees. We are thirsty. And we find it hard to take you seriously as you sashay around the unit with your extra large latte or tea cooler. For the record, that one extra large cup of luxury is equivalent to what you are telling us we should be drinking for an ENTIRE. WEEKEND. At the VERY LEAST you can leave the cup in your office for the less than 5 minutes you dash around the unit, pretending like you are offering each of us quality time.
Dear Nursing Staff and Techs,
We know your days are long Its the nature of nursing hours and why you work 3 days a week, as opposed to 5 or more like many other professions. The patient who has been literally strapped in his chair for the last 5 and a half hours really doesn’t want to hear your woeful tales of how hard you work and that you are so tired you could cry. Nor do any of us appreciate your ridiculous happy dance as you shout to the entire room that you are leaving in 15 minutes when our machines tell us we have 3 hours remaining in our treatment.
And here’s an idea . . . .howzabout while you are on the time clock, you actually DO YOUR JOB! Last I checked my lungs did not span from my shoulder to the middle of my ass. You literally had your stethoscope on my ass yesterday, “listening to my lungs” and you will never know how hard I was wishing I could have let the mac-daddy of all farts loose right at that very moment. Seriously? Don’t bother me if that’s what doing your job is to you. And can you tell us why squeezing our ankles every single treatment is a necessity? We are dialysis patients. We retain fluid and gravity pulls it to our ankles. Novel idea, huh? One of these days, don’t be surprised if a foot “accidentally” kicks into reflex mode and happens to find your nose. Ooopsie!
Hey Techs, we want to sign you guys up for the US Olympic Track team, because when it comes to going on break, you are the champions of hurdling over anything in your way, even patients in wheelchairs, and sprinting to the lounge. Funny how when we are writhing in pain from leg cramps, you suddenly have a calm cool and collected attitude as you saunter over to us like you are on the runway for Next Top Model and this is your victory walk. MOVE. IT! The pain level of these leg cramps can force even the holiest of us (God bless you, Sweet Mary!) to curse like a sailor and it doesn’t get any better until you get a few drops of fluid into us!
To the Supposed Social Worker and Dietician,
There are no words for how unhelpful you are! You two win the prize for Most Unworthy of a paycheck! We are thoroughly disgusted with both of you. There are grants available to people in our situation and it’s your job to make us aware of them and maybe even actually think about assisting us in obtaining them. When we order a medication through a program that you insisted we HAD to use, and the medication doesn’t come, wouldn’t it be nice of you to get on the phone and stir the pot a little in our favor! And for the love of God, stop telling us, on those especially hard days, that “things just aren’t that bad!” To the one sitting in the chair, crying because she can’t pay her bills, or he can’t feel his toes, or she is now enduring the sixth needle stick because no one can get it right, IT’S BAD! Your pathetic offering to limit our grape intake to 3 grapes or an ice cream treat to two teaspoons is a waste of our limited air. It ain’t gonna happen. And you know what?! It’s our misfortune when we overdo it with fluids. So stop treating us like we are 9 years old and maybe offer some real and helpful alternatives. Quite frankly, I can run circles around your level of nutritional knowledge, so how bout you just keep on moving right by my chair and we’ll call it even, mmmkay??
To the Illustrious Manager of our unit,
Is it really that hard to have televisions that actually work in the unit? Do us all a favor and save the money spent from printing the ridiculous “newsletter” you just started and get us some voice control on our televisions! Perhaps you could also consider training the techs you hire. Although they think its okay to put whatever numbers they wish into our files, IT ISN’T! We weigh ourselves before and after each treatment so we can get the best possible outcome for our health. THEY ARE PLAYING WITH OUR LIVES WHEN THEY DO AS THEY SEE FIT! Did you ever consider having a cell phone policy while your crew is on the floor, supposedly caring for patients? Try it. It might help them to hear our needs over the pinging of text messages and the assortment of ringtones that serenade us each day.
Yes, Staff, we are thoroughly disgusted and fed up! We have the ability to go to other units and many are in the midst of planning to do just that. We will give you one week to make some serious changes (because many of the things we mentioned can change TODAY, RIGHT NOW!) or many of us will be exiting this unit and spreading the word about the lack of support and patient care we receive here. We aren’t asking for much. We want our rights as patients to be met with compassion and dependability and competency. We want to know we are safe and in exceptional hands.
We want our dignity. We deserve to live.
The Patients of (said) Dialysis Unit