Plan for dialysis to interrupt your life

SURVIVAL TIP: Ask questions. If you don’t understand the answer, ask again. Ask more than one person if you need to. Interrupted sleep, the side effects of medicine, and obviously the illness can cause memory lapses or disrupted thought processes while you’re in the hospital. Write down the answers when you ask questions, as well as the source.

While in the hospital recovering from kidney failure, the nephrologist told me my kidney function was at 6%, when healthy people have about 90% function. I know what he said because I kept texts for myself and sent updates to friends and family. I didn’t send out all of the texts. Some were more to keep notes for myself than for friends.

After six days in the hospital, I was ready to go home. The Charlotte nephrologist’s assistant set me up for dialysis two days later with the same doctors I had left after they failed to diagnose the need for dialysis twice. So I wasted hours with staff filling out the same paperwork for that single visit that is required for each facility and running dialysis for one day because I had to have immediate dialysis and she didn’t take into consideration what i told her. AARRGH!

Did YOU KNOW: “Being without dialysis as few as three or four days could result in illness or even death for individuals with kidney failure,” according to the Southeastern Kidney Council. So watching your fluid intake is critical because you might have to go longer than the normal period between treatments in the case of freezing roads, hurricanes, etc. Most units run six days of full shifts with no room for additional patients. So if you have trouble breathing or experience swelling, get to the emergency room!


Monday, I was back in the hospital for an out-patient procedure to have the fistula prepared for safe long-term dialysis. While I was in the hospital the week before, a radiologist performed “vein mapping” with carbon dioxide to find the most acceptable veins for a fistula. The feeling as gas was pumped into the veins on the top of my hands and up into my arms, coupled with the sound of jackhammers that the machine produced, was more than uncomfortable. But when the nurse put her hand on top of the back of my hand during the process, the pain subsided significantly. Some people have fistulas in their forearms, but my veins were too small, so the next option was my upper arm.

While I was in dialysis at the hospital following the procedure to install the central venous catheter under the shoulder blade, the nephrologist said the surgeon was pleased with the results and I could go home after dialysis. Aware that things begin to shut down after 4 or 5 p.m., I alerted the dialysis nurse that I needed my clothes from pre-op so I could go home in a few hours. Surprise! There were no discharge orders. So she called an intern to get discharge orders. (Thanks!)

But because I was new to dialysis and didn’t understand the discomfort I should expect, I let a headache get the best of me. I didn’t want to bother the nurse, and then suddenly, the pain was so excruciating that I vomited. My systolic blood pressure sky-rocketed to 200. What made it worse was that I had no orders for pain medication, and my orders to stay had been cancelled. About 4 p.m., the staff scrambled to get me stable, get my blood pressure down, and eliminate the nausea.

By 5 p.m., the wonderful nurse (wonderful!!) got another doctor involved because the doctor who told me earlier that I could leave had left. He gave me pain medication and something for the nausea, but there were no records of my medications or procedure. AREAdvocate YOU KIDDING ME?! This hospital is well regarded, and they provided excellent care during my transplant in 2007. In fact, the doctor who seemed to have dropped the ball was thorough during my transplant follow-ups. So be your own advocate. Anticipate challenges and ask questions.

Thankfully, the transplant hospital has a team of doctors, nurses, and technicians who fill in for others’ weaknesses. I got a room, medicine, some crackers, and a ginger ale. I wrestled with the realization that I can’t plan or control the course my body is taking. My strengths have always been that I am self-sufficient and hard-charging. I found this scripture in 2 Corinthians 1:9-11 comforting: Indeed, we felt we had received the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. 10 He has delivered us from such a deadly peril, and he will deliver us again. On him we have set our hope that he will continue to deliver us, 11 as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many.

While it infuriates me not to be able to do what I need to do or commit to do, I have to set expectations with others that I am at my body’s mercy.

You have had challenges. Many of you can relate to my story, while some have their own, far worse challenges. But we are walking through this together, bearing each others’ burdens and understanding that we can rely on each other. So reach out and share your stories and challenges with fellow patients, so dialysisgal followers can support you.

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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3 Responses to Plan for dialysis to interrupt your life

  1. Eli Pacheco says:

    So glad you’ve shared this. I know when my dad was in the hospital, the support of those who were going through the same sickness meant a lot to him. They knew his struggles better than his family did. Also, I found after he died that he had several prayer cards.

    One was for the possibility that he wouldn’t live. It was tough to see, but I took some comfort knowing that dad was facing his ordeal bravely.

    You are too, and it’s valuable for you to share.

    Liked by 1 person

  2. Pingback: 5 Things You Don’t Learn Until You Are in Dialysis | dialysisgal

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