Share the burden of your diagnosis

SURVIVAL TIP:Share the burden of your diagnosis with loved ones and close friends. They will support you and provide a peace that I have never understood. I didn’t want them feeling sorry for me. They didn’t. They provided an ear and a shoulder when I needed it.

Shortly after the biopsy, Jeff accompanied me to get the results. My first doctor said all doctors in the practice treat all patients and discuss patients at their medical reviews. But the doctor who came to explain my situation is Indian. With a strong accent. Between the prognosis of incurable IgA nephritis and a doctor whom neither Jeff nor I could understand, I was an emotional wreck. Jeff was at a loss, as well. Dr. B repeatedly spoke of “the goal standard”. It took me days to figure out that he meant “the gold standard”, or highest standard. We understood a diagnosis of “a very hot spot” in both kidneys, making immediate treatment necessary with a high dose of steroids and immunosuppressants. I complained about the doctor, whom we did not understand, and refused to see him for many months. Finally, when I had a grasp of my disease and prognosis, the fear retreated, and I took my appointments with him in stride. Dr. B is a compassionate physician. He is intelligent and patient. I regret judging him from fear and misunderstanding. Unfortunately, humans react poorly to fear.

I was hesitant to share my prognosis with my family. I am an only child and one of a few cousins born to my three aunts. We are not close in geography, but we are like mama bears about our loved ones. I knew my family would worry. They were understandably upset and prayerful. Jeff’s parents were concerned and shared their prayers with family and friends. Friends and family told others who told friends and church members. Revival ministers shared my prayer request in other states. I can’t count how many people prayed for me and continue to pray for me, not because they know me, but because they love or care for people who love me. In these situations, I cannot explain, but I can assure you that at my lowest points, prayers buoyed my hope and my spirits. This would happen again after my transplant and Jeff’s incident in Afghanistan when Jeff and I were in Washington, DC.

My loving family all asked what they needed to do to donate. When the time comes, blood tests and more intense testing will be required, but that’s a long way away. That’s what I tell myself and anyone who asks, but I’m watching my creatinine increase. This determines the GFR, or glomerular filtration rate. The GFR shows how well the kidneys are functioning, and 20 translates to functioning at twenty percent. When it is down to to twenty percent, I will go on the transplant list. The wait for an O+ kidney is years.

Much to my surprise, after the initial bloated face and body that high doses of steroids cause, I lost fifteen pounds quickly. (Think of Jerry Lewis in his last years. It’s called a moon face.) I had no idea that I was retaining fluid because my kidneys were not processing the waste and fluid from my blood. I had gone from a size 5 ½ or 6 shoe to a 7 ½ slide-on shoe. I thought the South Beach Diet was my salvation, but instead, the medications slowed the progress of kidney disease and caused the weight loss.

Aside from the moon face, I got back down to a little overweight, but not enough to concern the doctors. Although I attended most appointments and labs alone, Jeff went with me occasionally. At every visit, I tried to be upbeat and positive, but usually I ended up in tears. My doctor prescribed Paxil. He said they call it “Vitamin P” because so many people are under stress and need an anti-depressant. I would stay on that for about five years, until it no longer provided the help I needed.

I went for the initial transplant interviews and tests to determine whether I was a candidate for a transplant. We learned several interesting things about the surgery and requirements for a donor.

If you are struggling with renal failure or dialysis, let me know. This is a forum to share what I have learned and experienced. My goal is to have a resource and a supportive community here. Comment or e-mail me at dialysisgal@gmail.com.

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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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