Surprises continue as long as you dialyze

SURVIVAL TIP: Dialysis hasn’t changed much in the past 40 years, but the clinic and corporate rules change from time to time. Try to accept that dialysis and the procedures at dialysis are beyond your control. Calm yourself as best you can and discuss difficulties or displeasure with appropriate staff.
Nurse with patient

Image courtesy of chubphong at FreeDigitalPhotos.net

After months and years of dialysis, patients think they understand all of the procedure’s ins and outs. But surprises come up, no matter how long you’ve been on dialysis. For example, if you have skilled techs in your facility, you might not be accustomed to painful cannulation. When you have a substitute tech or visit another facility, you might get the difficult reminder that everyone can’t find your access for successful dialysis.

If you listen to techs and show interest, they usually will share information and answer questions as best they can. While doctors might not be as conversational or forthcoming as nurses or physicians assistants, they should answer direct questions. All provide some insight, even if the lesson you learn is not to waste your time asking some people questions or trusting their answers.

Did YOU KNOW while the process doesn’t change much, shifts and procedures change within units? Sometimes changes are specific to your clinic, while others are corporate decisions. If the changes cause you hardship or upset you, speak with your nurse or social worker.

Maybe you have observed the things below that I found surprising. Have you learned anything while at dialysis or from asking questions? Let me know!

  • You will be cold. Half of your blood is in the dialysis machine at any given time. I always use a blanket by mid-treatment. My feet are warmer without shoes, and sometimes I take off my socks and wrap them in the blanket to keep my feet warmer.
  • You might “give up” more fluid than you put into the computer. Your tech or nurse will enter a “goal” amount to pull into the dialysis machine. Sometimes you won’t pull as much. Your body determines how much it gives up. For example, tonight, I put in to pull 4.6, but the scale revealed that I gave up 4.9. My blood pressure got a little low, they gave me more saline fluid, and after about 20 minutes, my blood pressure was high enough to drive safely. (Minimum blood pressures differ between units.)
  • Some techs are more attentive than others. Clearly, some units are more focused on the patient’s (good) experience than others. You will meet techs who spend most of their time looking busy but avoiding patients, 30-minute checks (required for blood pressure records, and interaction. But there are kind, caring, concerned technicians. If you are lucky, they can also get you on dialysis without painful delays.

How to address surprises…

  • Ask your tech if they can adjust to your preferences. For instance, some facilities (and some states) allow techs to pull two needles at once. Others do not. But if you prefer that method, ask.
  • If you have interpersonal issues, you might want to consider why you have the disagreement and how to have a kind conversation with the person. If you can’t resolve your issue when talking with the offender, go to the charge nurse or unit manager.
  • Your dialysis access is your lifeline. If you have an issue with a tech’s cannulation abilities, you have a right to ask for another tech. I had this discussion with a friendly technician. She understood that the concern is not personal but a matter of successful dialysis. With another technician, the nurse manager told me she would handle the discussion with the tech. I don’t recommend that route. The tech was hurt, and the rumor mill was fueled to stir up dissension.

Change is difficult. Most of us prefer a positive experience that we can replicate and expect. But visiting different units, especially those in different states or run by different companies, provide insight and opportunities to share best practices. Or you might go back to your home unit and thank the staff for being considerably better than your recent experience.

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 questions and be honest with others in the same situation. What are your experiences and challenges with dialysis?

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