Symptoms are better addressed early

SURVIVAL TIP: Be attentive to your body and ask the doctors the difficult questions, such as what are the next steps and when do they happen?

Fall 2006

In the summer of 2006, I took a trip to Canada to participate in a week-long personal development workshop. IgA nephritis can be exacerbated by stress, and I believe the trip was the trigger. For the first time – the only time in my life – I cried when I left my husband and went through security. The course presented significant physical challenges that I believe sent the disease into full throttle. Within a couple of months, the Cellcept I was taking to control the kidney disease was making me sick to my stomach. So we changed meds, and my creatinine levels continued to climb.

When your kidneys begin to fail, you gain a better appreciation for what they do. The kidneys not only process waste (urine) from the blood. They also make a hormone that tells the bone marrow to make red blood cells. When the kidneys fail, the marrow stops producing adequate red blood cells, causing anemia. And without these cells, the body has little energy. So I went routinely to my local nephrologists for EPO shots. This is a simulated form of a hormone the kidney produces, called Erythropoietin. In dialysis, this is given during the treatment, eliminating the need for an injection.

I felt my energy diminishing, and I remember when I began taking baths and resting before I washed my hair under the tub faucet because I didn’t have the energy to shower. I sat on the commode to dry my hair because I didn’t have the energy to stand. I slept a lot, but I was in no pain, and I continued to make urine. Adults should void (pee) about a cup and hour, according to a dialysis nurse. I remember thinking it would be okay if I died, because this was a peaceful way to go. I would just sleep and never wake up. Now, in 2015, I know that once your body stops making urine, the fluid retention is excruciating, and if I were to die now, it would be from heart problems brought on by dialysis or suffocating in my own fluids.

Jeff and I went to dinner with friends, and I knew I had to eat, but I didn’t feel good. I ordered deviled eggs. Within thirty minutes, I tasted them again. I couldn’t keep anything down. I ate saltine crackers (soda crackers) and drank Cokes to keep my stomach settled. I vomited more than a woman having morning sickness and all times of the day. A sore came up outside my lower lip that resembled a cold sore. Nothing made it go away. Until I got a transplant. And it disappeared.

Andes peppermint candies that came out for Christmas were a godsend. I ate them by the handful to settle the nausea. Peppermint can have that effect.

I liked my local doctors. I saw one of the team monthly by this point. The drawback is that while I liked my primary doctor a lot, he probably delayed telling me about the need for dialysis. I put on a brave face and tried to be cheerful. The Paxil anti-depressant helped. But my energy was gone. One night, Jeff and I went out, and I barely had the energy to carry myself. When we got home, I checked my blood pressure. It was 70/46. That is NOT good. So I drank Gatorade – slowly. I resigned one of my part-time jobs in mid-December. My manager was incredibly flexible, but the effort to get up, get ready and get there was overwhelming. I still wrote educational pieces and attended networking events as area director of four chapters. It was a battle, to be honest. But I did my best to live what I considered a “normal” life.

Once kidney function goes below 10 to 15 percent of normal, dialysis treatments or a kidney transplant are necessary to sustain life according to Davida, a large dialysis provider. Another doctor on the team told me in the fall to consider dialysis. And the next thing I knew, I was trying desperately to get a PD catheter installed a week before Christmas to begin dialysis immediately. Suddenly the need for dialysis was urgent, if not emergent.

Have you been diagnosed with kidney disease? Are you or someone you love on dialysis or the transplant list? Do you have questions or concerns? Share them with me, and I will be happy to include them in future posts or answer them personally.

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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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