What else can go wrong?

SURVIVAL TIP: Don’t be afraid to ask questions and stand up to the medical team if you have questions or concerns. Call a patient advocate if necessary.

 

My world was caving in: no job, no career, no marriage, no social life and no contact with a church in years. And my insurance would last only until my divorce was final.

Those difficult times were a BIG reminder from God that we can try, but we don’t control our lives.  Still, He won’t fail us if we trust Him. And at this point, what choice did I have?

Carolinas Medical Center (CMC) had sent a notice that I should attend an informational session before I could be considered for a transplant. After I woke up so bloated I couldn’t wear my underwear, I went to the local nephrologist for regularly scheduled lab work. I was vomiting so violently that he sent me home with a prescription to curb the nausea and told me to go to the local hospital at 2 p.m. for X-rays to show possible trouble with my gall bladder. (I suppose total kidney failure didn’t occur to the kidney doctors.) I was in excruciating pain, and no meds were permitted until after the test.

When the radiologist scanned my gall bladder for problems, he used a contrast dye. My abdominal pain forced them to halt the gallbladder test, and I remember lying in a bed in the emergency room with a friend sitting beside me. I heard him speak but could not focus on him. Then I felt my head jerking against my will. My first thought was that I was having a stroke from the excessively high blood pressure. I remember screaming, “Time it! Time is important!” while he was trying to get medical help. Response time is imperative after a stroke. The event lasted just over a minute. My blood pressure was more than 200/100. I got pain meds. And within 30 minutes, my sight was partially restored as the pain diminished. I could see normally within about an hour. The radiologist attributed the reaction to a “contrast dye allergy” that would follow me for years, making simple procedures difficult without explanations and overrides.

Did YOU KNOW? Severe contrast dye allergies are rare, but kidney patients should discuss with their doctors any iodine-based contrast materials administered by vein or arteries. Contrast-induced nephropathy can affect kidney patients by worsening the pre-existing kidney damage.

 

The doctors labeled the incident a “seizure” and everything changed. I refused to be admitted to the local hospital where I had recently spent a long weekend on IV fluids. During that hospital stay, I was bloating beyond discomfort, and the local hospital could not get lab results in fewer than three days. Still, the local doctors continued to fill me with IV fluid. With that experience and the call to have dialysis too late in 2006, I took an ambulance to Carolinas Medical Center. My transplant doctors practice there, and my local doctors do not. Follow my lead. Do not be afraid to stand up to a medical team. Ask questions and follow your gut. Insurance is a consideration for some, but ask for a PATIENT ADVOCATE if you aren’t sure what to do in a hospital situation or if you are feeling you need someone to look out for your best interests.

If you or someone you care about is facing dialysis, please share your experiences and concerns. This is a forum for learning and inspiration. Please share your 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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