How much privacy do you want to give up?
I blew a high creatinine number. Unless you're old, or approaching it, you probably don't know what that means. It relates to your kidneys. Although in the waiting room at UCLA I was stunned by the number of young people there, kidney disease knows no age, and there's your contradiction right there.
You keep on reading about dialysis and donations and you ignore it all until...
It applies to you.
Kinda like Gleevec and my CML. I knew nothing about the wonder drug, but now that I've got the Big C I see Gleevec mentioned in the media all the time, it's the holy grail of cancer drugs. Kinda like the Magnitsky Act, you have read "Red Notice," right? You should.
So, normally my creatinine is a little high. You don't want it above 1.3. And frequently I am, but under 1.4, I just blow a high number according to my internist. But in February, it went to 1.69!! Holy crap! I'd been taking voltaren, an anti-inflammatory, for three weeks, which I immediately stopped, but...
I went to the doctor last week and it was still 1.51, which freaked me out.
So I e-mailed my internist...
He went off insurance, his fees might be high, but the service is SUPERB! And he always want to talk music, he raved about Springsteen on Broadway but left early from the U2 show. Anyway, he was very concerned.
And told me it would be nearly impossible to get in to see the big nephrologist, i.e. kidney doctor.
I had a big one, but he left for Yale, it's rare that a doctor decamps from L.A., the lifestyle is just too good, but Schulam wanted to return to the east coast, his homeland.
Anyway, I did what I always do...
E-MAIL IRVING!
I hope you have an Irving in your life. We all need an Irving in our life. We all need connections, a reference point, a traffic cop, someone who can point us in the right direction.
And Irving asked Skip, the head of urology at UCLA.
And that's how I ended up at the bigwig nephrologist today.
He was EARLY!
I've never ever had that happen. They were still taking vitals. He had to come back.
And I started to tell him my story...
But he put his hand up, he was READING!
My story was on the computer screen.
Not that I could not add details later, it's just that he had a plethora of data at his fingertips. He sliced and diced it. Compared creatinine numbers over years.
And I thought what a wonderful world we now live in.
There's been a lot of backlash about this, computerized medical records, people are worried about their privacy, about insurance coverage denials. And I get all that, but...
My dermatologist knew I'd gone for a second opinion. What?? She's Cedars, he was UCLA!
And the nephrologist knew I'd gone for a heart scan, even though that test was out of pocket, turns out the cardiologist is part of the Cedars system and...
The nephrologist was concerned about my pemphigus. He said my kidneys were fine, not to worry about them, compared to my CML and skin condition.
And at first he needed justification, he didn't believe I really had pemphigus, it being so rare, but when I lifted my shirt and I showed him the scars...
He knew it was the real thing. He said pemphigus was very serious, and it was the only disease that kept dermatologists up at night. Which is kinda funny, because my dermatologist had told me she'd thought about me and my condition for weeks, had done research.
And really, my pemphigus is pretty good. Actually, I'm going to see the dermatologist tomorrow. I'm supposed to get another infusion of rituxan, she wants to avoid more IVIG, not only because of the kidney thing, she believes the infusion probably made my creatinine number higher, but because now I've got eczema on my hand as a side effect.
And you really don't want to be part of the medical/industrial complex, but just wait, it'll happen, assuming you live that long.
And the nephrologist lamented spending so much time looking at the screen, when the focus should be on the patient.
And he said how physicians do their best, but I said it paid to have money and he quoted F. Scott Fitzgerald: "I've been poor and I've been rich. Rich is better!"
How true that is.
But please make health your priority. Don't hold back, go to the doctor, and if you've got a big issue, go to the BIG doctor, it makes a difference.
And be glad all your data is in one place for he or she to look at.
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