5 Things You Don’t Learn Until You Are in Dialysis

SURVIVAL TIP: You can research as much as you like, but until you experience dialysis, you don’t fully understand the nuances. I say this to dialysis doctors, nurses and technicians. They  agree, but they don’t realize what we need to know that they understand as part of the process. If you have questions, ask! Ask the technicians, ask the nurses or doctors, and ask fellow patients! The patients beside you have had different experiences and different staff. And they are happy to share!

Today, we’re taking a break from the past several posts that share the long journey from diagnosis in 2002 until now. I want you to know 5 things that I have learned through the course of my most recent three years on dialysis.

  1. Waiting. No matter how timely your unit runs, you will sit in the waiting room with many other people before you go into your treatment area. You might build a rapport with them, but you might feel like you don’t have – or don’t WANT to have – anything in common with the people crowded into that room. Learning to wait well is something that comes slowly to many of us. So learning to maneuver dialysis is as much a process as learning to be patient.
  2. Delays. If the person sitting in the chair you use has a medical issue on the shift before yours, your treatment will be delayed until the previous stop watchpatient’s concern can be corrected. These issues might include low blood pressure or bleeding that will not stop as quickly as normal. Occasionally, the staff can move the patient to another area but not always. Expect delays. That way you will be pleasantly surprised when you run on time and not caught off guard with interruptions.
  3. Communication break-downs. Issues beyond the staff’s control can delay start times. If the first shift is delayed, the others will be, too. (Some facilities have two shifts, while others have three.) You generally do not get a call notifying you of a delay that could be more than an hour. So never plan anything within an hour of your scheduled dialysis departure. These delays include burst water pipes and issues with “the water” in the back. I have never had the presence of mind to ask if that was the sodium bicarbonate used in the machines or some other water. I’m too irritated by the delay when I generally rush to get there on time and don’t get home until late anyway.
Did YOU KNOW? Although dialysis is prescribed for a certain amount of time, generally four hours, machine tests delay the treatment for an average of 6 to 8 minutes. So your 4-hour treatment increases to more than 4 hours and 10 minutes BEFORE you account for the time to get the technician to take you off of the machine and to stop bleeding. So the truth about your 4-hour treatment is that you must consider travel time, waiting room time, time to get on the machine, time to get off of the machine, time to stop bleeding (unless you use a catheter), and travel back home. My 4-hour treatment takes about 6 hours. If you rely on public transportation, that time commitment could increase to 8 hours or more.
  1. Bleeding. At some point, blood will seep or flow from your access. If you have never seriously cut yourself it will be a shock. It looks like you’re bleeding out. But you’re not. Apvacuum tubesply pressure and call for help. Often, the person beside you will notice and call, too. Apply pressure until someone gets there. (This bears repeating.) Just take deep breaths, look away if you must, and apply pressure. It’s a good idea to keep a change of clothes with you in case you need to go somewhere after treatment. I’ve come out with blood soaked through my shirt to my bra and on my pants. I looked as if I were stabbed a few times. The strange thing is that I didn’t lose a lot of blood. It was less than the amount required for labs. But blood makes a big mess and stains. Hydrogen peroxide (H2O2) helps to remove blood stains, but the stain transfers, so use a washcloth under the stain. Also, rinse the H2O2 soon, or it will create a hole in the fabric.
  2. Accommodating staff. If you are nice to the staff, they will try to help you. No one can work miracles, but the staff gets to know your personality and preferences. They try to accommodate you, even when helping you determine schedule changes. But don’t expect things to happen in 5 minutes. That just is not realistic unless you are cramping, your blood pressure plunges, or you have a medical emergency.

These 5 points are reality for dialysis patients, and this community is here to support you in your journey. You will be less frustrated and your care givers and loved ones will be able to support you better when you all know what to expect.

If you or someone you care about is facing dialysis, share your experiences and concerns. This is a forum for learning and inspiration where we can ask and be honest with others in the same situation. What were your experiences and challenges with dialysis?


About dialysisgal

When I joined the 450,000 Americans on dialysis, I wondered what "normal" would be. Would people stare at my access and ask what was wrong? In this blog, I hope to save other patients and their families from the difficulties I have faced. I want to share my experiences, what I learned, had to ask and was shocked to find. I am not a medical professional, but I hope we can have a conversation to help you better understand what you or someone you love with chronic kidney disease (CKD) might expect while living with dialysis.
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3 Responses to 5 Things You Don’t Learn Until You Are in Dialysis

  1. Thanks for sharing this, Beth! I have family members dealing with dialysis. Your writing will be an asset to people like me that do not know how to ask questions regarding this life-saving technology.

    Liked by 1 person

  2. It’s helpful to get to see this process through your perspective – thank you!

    Liked by 1 person

  3. Eli Pacheco says:

    I hope anyone going through this will read this – and will tune in for your next blog, too, transplant girl. Very happy for you.

    Liked by 1 person

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