Setting expectations eases stress

SURVIVAL TIP: When you’re in the hospital, setting expectations for communication will help you rest and spare your friends and family worrying about your health and bothering you with calls.


 Hospitals are pretty accepting of patients carrying mobile phones. At some point in the hospital stays, I made a pact with my friends and family to send out daily texts with updates, even if it said only “More tests. Results in 2-3 days. Resting.” That way I could respond on my own time and turn off the notifications. People could call, but they also could rely on texts to let me know they were concerned and praying without disturbing me like the old hospital phones did. (Do you remember that gosh-awful ring that the deaf people could have heard?)

In the next few days, I had a catheter placed looped inside my left shoulder blade that lead directly to my heart. The catheter imposed limitations for about four months.Because you can’t get the incision and bandage wet, showers are not permitted. Of course, swimming and perspiring also are to be avoided.

Did YOU KNOW: The dialysis techs clean your catheter once each week. You need to watch for redness, soreness, drainage or other signs of infection. If you note any of these or the bandage becomes wet or dirty, alert your nurse. Remember, this catheter is a direct line to your heart. Some dialysis units use adhesive bandages that are sealed on all sides, while others use less expensive gauze and tape.

Dialysis began the day after the catheter placement, although the incision was fresh and tender. Beginning with two-to-three hour treatments, I was attached to a machine in a hospital dialysis unit with several other patients and beeping alarms. The high pitched frenetic beeps all sounded the same to me, but each distinct pattern meant that someone’s session had ended, that their blood pressure was high–or low, or that tests of the machine were complete. Sleep was a welcome solace during that first dialysis treatment while l recovered from the nausea, abdominal pain, lethargy, and bloating of the preceding three weeks. Over the next few days in the hospital, my blood pressure fell to a more normal range, and my vision was no longer blurry from the hypertension.

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 share stories and questions. 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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