Bad news, fun times meet in the hospital

SURVIVAL TIP: Remember that sometimes you don’t have to visit someone or even talk to them on the phone to convey love and concern. A gift, a card, or kindness extended to a patient’s family can change the world in one day.

After I was admitted to two different hospitals within a month, the nephrologist who followed my transplant in 2007 said, “I can give you two weeks, at the most, (before we start dialysis).” This was my second emergency with failed kidneys. The local doctors didn’t want to rush dialysis. Apparently they didn’t plan for it, either. After I suffered a seizure at the local hospital, the doctors allowed me to go to the Charlotte hospital that specializes in kidney disease. Charlotte Medical Center devotes an entire floor to kidney patients.

Most of that week is a fog. A dear friend came by while I was having tests. She had to leave before I got back and left me a framed picture of her sweet pup, whom I cared for often when I was a pet sitter. (I said whom because he’s a person to me!) I smiled broadly when I saw his picture. It’s the first thing I saw when I returned to my room, and Mom said it made my day.

I remember a couple of funny anecdotes. Between the diminished oxygen in my blood stimulating the brain, the exhaustion of being ill, and the medications, I was not quite myself while I was in the hospital. Another friend visited, and I had no memory of it until she told me details of where she sat. I recalled seeing her, but nothing else. That same friend called later to check on me and said the conversation went something like this. Hospital sign

“Hey!”

“What are you doing?”

“I’m not sure. I’m downstairs somewhere. In the hospital, maybe?”

“Are you okay?”

“Well, I am now. A good looking young man is coming to take me somewhere!”

“Okay, well, I’ll check on you later.”

I had no recollection of this, either, until I was reminded. Apparently, I respond well to drugs! Thankfully, I’ve never tried any psychiatric drugs outside of a hospital. Who knows what I’d be up to!

The Charlotte nephrologist who followed me after my transplant in 2007 came into my room on an April day in 2013 and pronounced that dialysis was in my imminent future. I was shocked, maybe devastated. I wanted to be in denial. But there I sat, in a hospital room, listening to the doctor I trust, perhaps more than any other. My mother and aunt were there as he spoke. This disease, again, with no viable kidney donor.

Did YOU KNOW? Healthy creatinine ranges from 0.0 to 1.0. Every 0.5 increase indicates a 50% decline in kidney function.

 

Reeling from the time and physical toll I had learned dialysis takes and remembering the limitations on daily life and travel—even for the weekend—that it imposed dredged feelings that I am not in control of my life. Knowing that I would be bound to dialysis treatments until I get a kidney transplant or die, I shuttered thinking of the dialysis treatments before I got my first transplant. I was on dialysis for four months, two on peritoneal dialysis (PD) and two on hemodialysis in the clinic, using a catheter directly to my heart to filter excess fluid and waste from my blood. Last time this happened, one of my aunts graciously tested and donated a kidney, so my dependence on dialysis was short. But this time, I didn’t (and do not now) know how long I would wait for that unknown donor. Trying to recall memories I had buried and hoping dialysis treatments had improved and were shorter than before, I had some burning and terrifying questions that I know you can relate to. What now? What’s next? Will it hurt? How long will it take, and how often? Not much has changed. Treatments would be three days a week, for four hours each, plus the time it takes to get on the dialysis machine, get off of the machine, and leave. And I would need an access placed in my arm immediately to start hemodialysis in the safest manner, through the arm and not the temporary catheter to my heart.

I had never had dialysis through an access in my arm, so I feared the treatments to come. But with more than 4500,000 people in the United States on dialysis in 2013, surely I would be able to handle it. Besides, the access wouldn’t be ready for at least six weeks.

            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?

 

 

 

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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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