Transplant doesn’t mean troubles are over

SURVIVAL TIP: Be aware of changes in your lab results, as well as weight gain/loss and blood pressure readings. What seems uncomfortable or inconvenient can be slight symptoms that when considered together mean you need to make changes to keep yourself healthier in the long run. Help your doctors to piece together the meaning of these changes.

I had more energy than I could imagine after my transplant. Before my aunt  Cheryl donated a kidney to me, I slept most of the day and ate and drank only enough to keep me going. After I left the hospital and weeks later, was released to drive and take care of myself, I stretched my sore abdominal muscles. After the surgery I rested, ate better, and took my (many!) medications.

Nausea and vomiting nagged me about a month after the transplant. My mom was truly panicked and paged my nephrologist over a weekend. He recommended Immodium, although I was vomiting and not suffering from diarrhea. She questioned the doctor, and he was not impressed by her inquiry. He repeated that I should take Immodium. It worked, but be careful because Immodium dries the fluids in the body. I learned to feel the nausea coming on an hour or so in advance so that I could get to a bathroom. The wretching took a great deal of energy, but after I vomited, the feeling of heat exhaustion and nausea passed.

The year after my transplant, I gained a lot of weight. This was because I ate so much more than when I was sick, and our menu options on post were not healthy. I finally determined that when I bloated, the pressure of the waistband across my transplanted kidney made me feel nauseous. I bought bigger—and bigger—pants. So four years later when I lost 40 pounds with no effort, I was ecstatic. It didn’t occur to me that I was in kidney failure again. I thought it was from being so busy walking dogs.

In hindsight, I realize that I was so glad to finally be what I consider a desirable size, that I accepted a loss of 40 pounds as normal. Also I had worked so hard to increase my pet sitting business, that I thought that was going well, too. Working seven days a week for long hours seemed to be the path to success. But in 2012, in fewer than three months, I was unable to manage the business and I spent weeks in the hospital trying to learn what was wrong. I convinced myself life was good, and I didn’t worry myself about the symptoms or the lab counts. When I asked, the local doctors warned me to be careful, but they were not firm in presenting information as an ultimatum for my health.

Take note that I was consistent in keeping my local nephrology visits and labs. I saw the transplant doctors annually but had my local doctors follow me as needed, monthly, quarterly and then monthly again, based on creatinine numbers. At some point, the local doctors referred me back to my transplant doctors. The specialists wanted to see me biannually, in addition to my visiting the local nephrologists. In 2012, when my pet sitting business really took off, I missed an appointment with my transplant nephrologists. I thought they were going to reschedule, and it never crossed my mind to call until I was in the hospital in early 2013. I was so focused on business, that I didn’t follow-up like I should have. I chose to believe all was well. BUT I might have put off dialysis if I had kept my appointment with the SPECIALISTS.

But good things definitely came with the transplant. Life on a daily basis was much easier and less restrictive!

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?


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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