Gone Viral?

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After my first kidney transplant at 19, I asked my Canadian nephrologist a question.

"Is there a chance the virus will come back?"

When I was 13, I contracted chronic glomerulonephritis (inflammation of the kidneys' filters) from an unidentified virus. I never had streptococcus (strep throat). I never had mononucleosis. The virus that gave me CKD and resulted in kidney failure remains a mystery.

He looked me square in the eye and said, "Yes."

Today, I saw my dermatologist again for perivascular dermatitis (inflammation of the tissue surrounding the blood vessels). The all-over burning, itching and pin-prickling of my skin was not news. But then I shared the latest newsflash.

The first doctor did not like my loss of appetite, nor my plummeting levels of exhaustion. How I have been finding myself in bed at 7 pm, 6 pm, 5 pm trying to catch up on an energy level I can't seem to replenish. But it was the rash on my face that got the second doctor's attention.

"I don't like the looks of that," he said, with a worried look on his face. A butterfly-shaped rash appears on my cheeks and over the bridge of my nose.

"We need to check you for lupus."

This specific shaped rash is one of the early signs of lupus. Lupus is a chronic, autoimmune disease that can damage the skin, joints or organs. Autoimmune means to attack the body.

After the appointment, I outside stood on the 3rd Level Plaza bridge that links the two office towers. It was a ridiculously gorgeous California day. Sunny, 80 degrees with a warm wind blowing. My pulse was racing. My mind was spinning. As much as I hate this place, I wasn't ready to go home.

So I went up to the 5th floor. To the dialysis unit.

This is where lupus can take you. Untreated lupus nephritis can lead to end stage renal failure. This is called futuretripping. That is not where I am today. Today, I stand on the other side of this door with a working kidney transplant—not dependent on a machine to clean my blood so I can sit up in bed.

I stood there for a very long time reminding myself where my feet are today.

If you have not lived in the land of the chronically-ill, it's impossible to explain how illness is like a roller caster. There are times when the ride is a little bumpy, but you are coasting along just fine. There are times when the ride is exhilarating—you are free-falling with joy because you feel AMAZING. There are times when you are climbing upward toward something ominous‚ something that will throw your poor body over the edge of what it can take. And you never, ever know what lies just around the bend.

Admittedly, at times I am jealous. Not of your cars or your careers or your Cartier-whatevers. Of those who have never set foot in a hospital. Of those who don't have selfies with their specialists. And of those who have not been on medication since the age of 14.

I wish my fingernails would grow. I wish my hair would grow back. But my greatest wish is for the most elusive thing of all—my health.

I don't know what this virus is or where it will take me. All I know about the future is that I have a Monday appointment to see my nephrologist. Today the ride is a little bumpy, but I am still coasting along just fine.

 

Thank you for sharing this so others of us can see things from a new perspective and learn a little more of empathy, pain, and gratitude. You’ll be in my thoughts and prayers. — Rachel Gardner Jackson
Oh, no, Hen. Just so frustrating and scary. Keep looking forward and keep looking at your Californian blue skies and sunshine. Thinking of you and sending ALL my positive thoughts your way. Can I share this one, as yet again and as always from you, this is so informative and may help someone else? — Lesley Traynor-Smith
Every time I look in your eyes, I see the strongest and most courageous woman I know! I have no doubt that you will walk through this with the same
dignity and grace as you have before! You’re my rock star! — Debra Stricklin