You can't drive to dialysis because you feel so ill after dialysis you might not be able to drive home. So you wait patiently either for a relative who is getting really fed up with driving you there and back 3 times a week, or for transportation who are either too early or too late.
Then you arrive at the dialysis center and have to wait for your dialysis chair-they are always busy at the dialysis center, because they never have enough staff and the patient before you needs his sites holding for longer than 10 mins.
You get weighed and you've put on too much, so you have to listen to the lecture of what you must do to not drink so much! For the 100th time. Don't the staff notice it is over 100 degrees outside
You eventually get to sit in your chair and it takes another 20 mins before you actually start your treatment.
Then the hours begin, there is a television but it doesn't work well. The patients around you are sleeping or complaining.
The staff are running around and don't notice you and don't have time to talk because they are so busy.
You notice that Fred or Alice are not there today, when you ask everybody is secretive because they don't really want you to know that they have died, because for the last 2 years they have sat next to you.
There might be a bit of drama you can enjoy, but the machines are always alarming and you can't move your arm in case you pull at the needles stuck in it.
Those 3 4 or 5 hours are so boring and it is so noisy
Then you come off the machine, hold your needle sites weigh yourself and go wait to be picked up.
Transportation is late, so by the time you get home you've been gone 6 hours. Now it is time for a nap.
The next day of your life you spend recovering from dialysis treatment and the day after that the cycle begins again....................
I cannot imagine how horrible it must be to spend up to 7 hours which includes traveling and waiting time, to be tied to a chair and have dialysis.
We complain if we have to sit in a car for a couple of hours when we are traveling to somewhere nice.
Just imagine for a second that every other day for the rest of your life you have to sit in a chair and travel for 4 hours.
They have lost complete control of their life and if they don't dialyze then they die.
Then to add insult to injury they have to have needles stuck in their arm 3 times a week, they cannot eat what they want, they cannot drink what they want and they have to be talked down to every treatment by nurses who half the time do not even try to understand what they are going through.
I have had the privilege of working with ESRD patients for many years and the amount of unruly patients I have looked after is almost zero! I have found if you listen to them, that is all they want. They are frightened and angry, plus they look around the dialysis unit and what do they see?
They see 20 other people tied to a chair, in various stages of deterioration. Doesn't seem like they have a lot to look forward to.
Oh and most of them are labeled 'non-compliant' words which are frequently used to describe patients who eat the wrong food, drink too much and miss dialysis sometimes.
Half the time they are on dialysis because we have decided they didn't look after their BP or their diabetes.
I wish I was so perfect that I could say I do everything I am supposed to do all the time.
If we as health care professionals actually took time to meet the patients face to face and listened to what they have to say instead of telling them what to do, maybe just maybe we could actually reduce the 'unruly' patient.
23 years as a RN-13 years in renal nursing has taught me that healthcare professionals are very dismissive of pts who have renal disorders.
I honestly think we are frightened of them because we do not really understand the renal system. We are only human after all and we tend to shy away from conditions which seem complicated.
Looking after the chronic renal patient is unique and many friendships have been forged over the years. A deep sadness and loss is felt by the staff who have looked after them for so long.
There is so much to be gained by looking after chronically ill patients, I just don't want us to forget how important they are by labeling them.
So when a patient who is on dialysis is admitted to your floor take a moment to understand what they go through week in and week out, do not be afraid of them, they can tell you more about dialysis that you can know.
They are very well educated patients, who are demanding but they have lost a lot of control of their life and when they demand they are taking back a little bit of control.
