So you just found out your kidneys are failing

One day you go in for a physical, perhaps because you’ve been feeling just generally crappy—nauseous, poor appetite, muscle cramps, fatigue, sleeplessness. After reviewing your lab results, your doctor explains that your kidneys are failing. Following more tests, maybe a renal biopsy, a more definitive diagnosis emerges, and you’re told bad news and good—usually in that order. The bad news: Your kidney disease is irreversible and you’ll soon need dialysis. The good news: You’re likely a candidate for kidney transplant.

When you first learn how sick you are and the potentially dire outcome of your illness, a cyclone of anxiety, along with a dizzying array of information, may overwhelm you. That’s normal. You’ll have time to digest it all and learn about the life-altering and lifesaving path forward. This is going to be a long journey—months, maybe years— but you can’t complete it if you don’t start, and that begins now.

Step one: Don’t panic. Stay calm, keep it together. Millions of people have been in your shoes before and many of them are still here today. Don’t let rational thinking diminish, or give in to the temptation to emotionally dissolve and give up. Breathing exercises help: Deep breaths, in through the nose, out through the mouth. Deep breathing and the calm it generates will help you focus, listen, absorb information, and plan for challenges ahead. Repeat these exercises several times a day.

Step two: Don’t isolate yourself. Talk to family members, loved ones, and friends about your situation. Building a support network is key to adapting to life change and getting a new kidney. It may also send an early message to someone—family member, friend, colleague, roommate—who may wind up being a donor. But don’t advance that notion yet; it’s way too early for you and them (it will make them nervous and emotionally conflicted). Just knowing you’re sick is enough information for now. There’s plenty of time ahead to assess the landscape of options for you and people who care about you.

Step three: Keep all medical appointments and come prepared. This is vitally important, especially early in your odyssey, when what you don’t know far exceeds what you do know. Come armed with written questions—and, ideally, an advocate to take notes—as physicians may be pressed for time and not know the precise nature of what concerns you most.

Clear communication is especially important for non-English-speaking patients. Bring a bilingual interpreter if you need help asking questions and understanding answers. Ask where you can get Spanish-language literature, and, on dialysis, request consistent communication with Spanish-speaking nurses, nutritionists and social workers.

Step four: Make your desire for a transplant known.  Begin discussing transplantation with your doctor as soon as your health, confidence, and comfort allow. If they say, “Well, we’ll talk about that down the line,” tell them, “Yes, I know it won’t happen tomorrow, but I want to start planning for it today.”

The earlier you plant the seed, the better. That way, you send a clear message to your healthcare team about your determination to beat kidney disease and return to normal life. Tell them early-on and remind them often. Silence and acquiescence are your worst enemies. It takes time, effort, and teamwork for your doctor to shepherd you to a transplant. If they don’t know that’s your rock-solid goal, it’s easier to “warehouse” you on dialysis— arguably the saddest outcome plaguing renal-disease therapy today.

Above all, remember this key for navigating the path forward, and repeat it to yourself often: Nobody cares more about you than you! Don’t be shy. Don’t worry about annoying doctors with questions. Don’t worry about asking where you can get up-to-date information on dialysis and transplantation. It’s your future at stake, nobody else’s. Embrace this notion, from the time the doctor solemnly tells you your kidneys are failing to the moment they slide you onto the transplant operating table.
It can save your life.

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