I didn’t listen to my gut, and this happened…

SURVIVAL TIP: While you rely on your doctors to look for changes in your health, be attentive to changes in your body and press the doctors for information, even if it’s something you don’t want to hear.

 

On January 10, 2013, the transplant center set the first of many expectations that would not be met. They sent me a letter stating that they would contact me with an appointment to be assessed for another transplant. I filed the letter and waited for the transplant office to do what they committed to do.

About that time, I decided after several months of consideration that I could not continue in my marriage of fifteen years. I moved in with a friend in February. In late March, I closed my business to look for a job that provided health insurance and a salary that would pay the bills of a single woman.

By March, my legs and feet were swelling noticeably every day but went down each night as I slept. I didn’t connect the swelling with kidney failure because I had a temporary job that caused me to be on my feet in heels.

Four months and no follow-up

The transplant center had committed to follow-up, so calling them was not on my calendar. I found the letter four months later after another visit to the local nephrologist when they asked if I had heard from the transplant center. I called to inquire. “Oops,” the transplant center said. Lesson 1: Follow-up on appointments, because medical offices cancel and overlook scheduling follow-up appointments. In an earlier blog post, I noted that I thought the transplant doctors (different medical group) would schedule the follow-up and forgot about it. I believe keeping that scheduled visit could have delayed my dialysis. They would resend the information about a required class. They had another class scheduled about two weeks away.

Serious requirements within two weeks

I got the letter a few days later and a duplicate of the same later six days later. (Why?) It was full of information.

  1. Bring support person – who was I going to bring? My family is out of town and my roommate works. In addition, I didn’t want to inconvenience anyone or share the burden of my diagnosis. Lesson 2. People really do want to help. But you have to ask. Build a support network and help others as you can before you need anything in return. I detest asking for – and accepting – help. But God put us on earth together to help one another. By simply doing my job and networking with writers, I met someone who is a kidney donor (You’ll read about her soon!) and works with the Donate Life NC organization.
  2. Failure to call and reschedule “demonstrates a lack of interest and non-compliance. This will be a factor in the decision making process regarding your candidacy for transplantation.” (This was my second kidney failure. I did NOT want anything to negatively affect a transplant!)
  3. Other prerequisites for transplant consideration are to be faxed to the transplant center: dental clearance, PPD (TB Skin test), colonoscopy (over age 50), pap smear (females over 18), mammogram (females over 40), and PSA level (males over 50).

Symptoms hard to assign

The ablation in April was a distraction because the swelling could be part of that recovery. And when I felt nauseated a couple of weeks aftParencentesis - drain abdomener the ablation surgery, I thought it was a difficulty related to the ablation. By the time I saw my gynecologist about 4 p.m. the day I felt worst, I was vomiting every 20 minutes. He was alarmed and sent me to the emergency room on a Thursday afternoon. The illness was really from the toxins in my body because failure in my transplanted kidney accelerated. Friday, one of the doctors ordered a procedure called paracentesis that involves inserting a needle several inches long to remove fluid from the abdomen. The radiologist removed a liter of fluid and ran tests to look for bacteria. The doctors gave me fluids over the weekend, but I was not producing normal amounts of urine. So I swelled like a beached whale.

The local nephrologist came in after five days and said he could flip a coin as to whether he should send me home or send me to the hospital that did my transplant. He could not find the source of the problem and the hospital sent out creatinine tests that required days to get the results. I told him if he had no idea, I was going home. Lesson 3: Don’t just go home because the hospital staff provided no answers. GO TO THE SPECIALISTS. I suffered for nearly three weeks before I learned that I was days away from dialysis. If your specialists aren’t giving you answers, get a second opinion! The local specialist wanted me to follow-up with the gastroenterologist, hematologist and my transplant doctors. After a little consideration, I knew I didn’t need any of those other specialists, and that the local nephrologist was not able to diagnose my illness.

Thank goodness for the appointment!

A week later, I had severe abdominal bloating on the morning of an early lab appointment with my nephrologists. I could not get my underwear on. I had to wear a shirt dress with no belt. I looked several months pregnant. When I got to the doctor’s office, I was nauseated, weak, and sleepy. He sent me home for a few hours with nausea medicine and sent me to our local hospital Thursday afternoon to check my gall bladder. But the intense pain I experienced did not match typical gall stone symptoms. I had no idea I would be admitted to a hospital in Charlotte that evening.

We are not alone.

My best friend, who calls himself my “non-emergency medical transport” took me to the lab and the hospital – on VERY SHORT notice, then followed me to the Charlotte hospital that evening. Several things happened in the local hospital, and my friend was there to comfort me. In the same way, I hope as you read this blog and comment, that you also will be comforted knowing you are not alone. Many thousands of us are going through similar challenges, and I hope you find support in that!

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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