a big scare & new appreciation

Hm. How to begin after such a long (and scary) absence? No better place than the beginning, I suppose!

Last I left off, I was waiting to hear the results from my initial round of testing. I have to admit, I assumed there would be no problems. I’m 25, going on 26 in January, in great health (to my knowledge), eat healthy, and keep myself in shape. What could possibly be wrong? I feel great, everything seems to be working just fine – no symptoms, no problems, right? So when I didn’t hear from my doctor about my results in the 3-4 days I was told it would take, I assumed it was because everything came back as expected (I was told they would only call if there was a problem), but I still was anxious to get the official ‘Ok’. So I called, and I called, and I called again. Then finally, just as life always seems to unfold, when I was in a meeting at work, my phone rang – the doctor’s office! Voice mail – probably confirming everything came back a-ok. Another call from the doctor – another voice mail. Eh, just making sure I got the message so I stop annoying them. One more call and one more message. Hmm. I was officially nervous. I kept telling myself it was nothing but I couldn’t help but run right into the hallway and check my messages the second my meeting ended. You know, just to be sure.

All three messages were of the same nature: ‘Hello, Melissa. We received your results and we’d like you to call back as soon as you can to schedule a follow-up appointment.’

What? Follow-up? Why? To tell me how amazingly perfect and wonderful my results were?! To take a photograph, maybe, with me and my sparkling lab work as a model of peak blood and urine condition?!

A phone call later my high hopes were dashed – the doctor wanted me to come back to the office to discuss a few ‘red flags’ in my results. What? How? Impossible! Don’t you know I eat organic!? I take supplements and multivitamins! I work out 5 times a week! I RAN A MARATHON! I pestered and pestered the secretary until she told me, briefly, the issue – the creatinine and protein levels in my urine were high. I literally felt my heart drop. I didn’t know what it meant but I knew it couldn’t be good if the doc needed to speak to me in person about it.

Despite every fiber of my being warning me not to, the second I got back to my computer I Googled ‘elevated creatinine in urine’. Bad decision. (Warning: Googling symptoms of any sort will inevitably cause you to think you are dying. Don’t do it. Ever.) Almost every result that came up pointed to three things: kidney damage, diabetes, or heart disease. I was hoping for maybe ‘flu’ or ‘infection’ or something that I could take care of with a few meds and some rest. But heart disease? Diabetes? Kidney damage? Could I actually be a walking case of the biggest irony of all time – a potential kidney donor who finds out she, herself, will soon need a kidney? The rest of the day flew by in a blur of tears, disbelief, and worry. I scheduled an appointment with my doctor for two days later (translation: two years in thinking-you’re-going-to-die time) and spent the rest of my day trying to work and go on with my life, but mostly just Googling every possible combination of the words ‘urine’ and ‘creatinine’ possible.

I mentally prepared myself as best I could before arriving at my doctor’s office. I swore I wouldn’t cry. I cried. Nothing was really known yet, but just the possibility of something being wrong was enough to drive me to tears. My health – it is by far one of the most important things in my life and the thought of it being in question never even crossed my mind. The shock alone was enough to do me in. My doctor sat me down and explained to me that it could very well ‘just be me’ and that it might be nothing to worry about, but that if I were his daughter he would want her to know all the facts and be ready for any possibility. He advised I see a nephrologist (a kidney specialist), gave me a number and a box of tissues, and did his best to calm my now running-amok mind. A few hours later I had an appointment with a nephrologist for the following Monday.

Monday was a chaotic mess. The details don’t matter much, but let’s just say that everything that could have gone wrong- that is, before the actual appointment with the nephrologist – did. In my twisted mind, it was all a sign that I was diseased and dying. I know. You don’t even have to say it – but I’m being honest and that is truly what I felt. Finally I saw the doctor and within a few minutes of studying my results, he had me smiling again.

Apparently, high creatinine and slightly high protein in urine is only a sign of trouble if there are other abnormalities in my blood. The rest of my results were ‘picture perfect’, as the doctor said, and in his expert opinion, my tests proved that my kidney was in ‘peak, excellent condition’ and ‘functioning beautifully’!! I breathed for the first time in days. I was healthy! I was in shape! I wasn’t watching every morsel I put into my mouth and rising before the sun to work out for nothing! I wanted to sing on the top of my lungs and dance down the streets! He said what was music to my ears – that saying my kidney wasn’t in condition to be donated would be like saying ‘the bride was too beautiful’. HOORAY!!!! But (there’s always a ‘but’ in these stories)…

Then the bad news. While the nephrologist pointed out that any specialist would agree with his assessment, he noted that the National Kidney Registry takes extra pains to set strict standards for all donors – especially anonymous ones, because they are putting themselves at risk for what is, to most people, no personal gain (if you consider saving the lives of multiple people ‘no personal gain’). In other words, while I’m in exceptional health with great kidney function, my numbers could disqualify me from donating my kidney. My heart sank once more.

As soon as I got home I contacted a transplant coordinator at NKR. She sent my ‘high’ numbers to the medical board which then asked that I redo the 24-hour urine analysis. I explained what the nephrologist said but it didn’t matter. To them, it seems, high is high, no matter what. While I understand their caution, I would be utterly heartbroken and devastated if I couldn’t donate. This whole scare has given me a new appreciation for my health, and gave me, however small, a taste of what people go through every day when they find out that their bodies aren’t working the way they want and need them to. What I went through absolutely cannot compare to the experience of the millions suffering out there every day, but if I was as scared as I was at the thought of something being wrong, I cannot even fathom what it would be like to actually have a health issue that you cannot fix no matter how hard you try or how bad you want to. And therefore, to know that I’m sitting here, with two perfectly good kidneys, not able to donate, while there are people out there struggling through dialysis and slowly dying waiting for just ONE good kidney practically brings me to tears. Being ‘too healthy’ to donate never crossed my mind. It would be the ultimate irony.

So here I am, back to waiting. I will be recollecting for my urine sample this Thursday and turning it over to the lab the next morning. Hopefully by this time next week I will have my results back with maybe slightly lower numbers. If not, I’ll send all of my results to the NKR anyway and hope and pray they interpret them the way the nephrologist did. And if they don’t, well, I’d like to say I gave it my best shot, but that’s never been my style. If they don’t, I will fight. I will write letters, get recommendations, see specialists who can back my argument. I’ve never been one to take things lying down, and with lives to be saved, I refuse to start now.

 

‘Defeat is simply a signal to press onward.’  [Helen Keller]

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