Read a post on Facebook yesterday of a young man in his thirties, hoping for a kidney. He has IGA Nephropathy. Not sure why his post was even on my feed, as we aren’t friends, but I stopped up short anyway, and read his story–because I too have IGA.
Although just fifteen when diagnosed, he was fortunate and has already received one transplant. Lived a full life too in his twenties, even getting married and having kids. But now, in his thirties, his new kidney is failing him, and his name is still far down on the donor list. He knows his time is limited. I could see the surrender in his eyes.
I was 29 when the doctor told me to go home and wrap things up. Just a routine blood test, and snap! Nothing else mattered.
Stunned. Disbelief. Denial. Couldn’t get my head around it.
I felt fine! How could I be sick?
But that day, twenty years ago, I knew as my eyes searched out the foreign scary numbers listed on my blood results, I knew with certainty, they were just too high to be ignored.
Normal output is almost undetectable. In fact, for anyone with healthy kidneys the random amount of protein in the urine is anywhere between 15 mg to 150 mg. My count was 2000 mg.
Yeah. Deep sigh.
So I made an appointment with a Nephrologist.
I had stopped working in Hollywood a few months before to help my husband get our company on its feet. Technically, we were both unemployed, but my union at Paramount Studios was so good, I had clocked in 18 months worth of continued health coverage (even after I quit) due to all my overtime. It was excellent coverage too. Thank God.
I didn’t stop there. This was before everyone had a personal computer in their home, on their lap, in their phone, or even at the office. We did have a CompUSA and a Best Buy in Fullerton though, that kindly lent me use of their internet to search my symptoms and treatment. I felt guilty when I returned to each store a second time, but the salesmen knew what I was doing and encouraged me to have at it. (More names for my Love List!)
Stumbling around at first, I was hesitant to push a wrong button, log onto some unknown website, click on the wrong icon (don’t think I even knew the word icon). Didn’t take long (and with some guidance) before I was getting pretty adept at using these new amazing tools called search engines. Couldn’t print anything out though, so I took a notepad and pen and scribbled the hours away. I absorbed so much, but I found I needed to know more, to keep busy until my doctor appointment, and the old-school girl in me was drawn to the library. I’d check out heavy encyclopedias and scour the pages for answers. After two weeks, I was beginning to feel somewhat empowered–or at the very least, informed. Knowledge really is power.
And then I met with a doctor, and all my hopes were dashed.
He introduced himself, read my test results and gave me the bad news. “You have a kidney disease. I’ll need to do a biopsy, but I’ve been doing this for years, and I already know this is not good.”
The years of giving bad news, terminal prognoses, had taken their toll. He looked weary. I would have felt sorry for him if he hadn’t been so mean. In fact, his cold arrogance fueled a desperation in me that almost pulled me off the chair, but good manners kept me seated, and I summoned up my one drop of grace (and a good dose of courage) and stuttered through what I considered a logical fair question…
“Wait. I’ve been reading-doing my own research-and shouldn’t you, maybe we can, don’t you think we should wait for the biopsy results?” I was afraid of him, but I was more afraid of dying. He ignored me.
I waited until he finished with my chart and finally exasperated, I asked, “Can you tell me if there is anything I can do in the mean time to help myself?”
Slowly he glanced down at me, and with a wave of peeved dismissal said, “I’ll tell you what you need to know, when you need to know it.” I left there in tears.
For most of my life I’ve known I was on my own. I only remember being taken to a doctor once with my gram–and that was because it was required to enroll me in school (and she was a nurses aid). My foster mother took me because she had to report back to social services that I had indeed had my check ups. I do remember her clearly being put out when I came home with a plantar wart on the bottom of my foot and it had to be removed. But nobody at home (wherever that happened to be) taught me about my body.
I was educated on the inner workings of the human body at school, in the sixth grade, and I gathered how the outer body worked through simple osmosis, after years of sharing a motel room with my parents. When I became an adult, I went for my first female exam at 19, because I had heard from a friend at work that I should. I went alone, and that’s how I figured out how I should proceed to care for my body in the future. No one else had a conversation with me about any of it. Ever.
I arrived home in tears that day after my heartbreaking, frustrating appointment second guessing myself–maybe I was asking too much? He was the doctor after all. But I had no frame of reference to draw from. I was lost and didn’t know where to turn.
I had never asked Juan for help like that, and he never offered. I think by then I was just so used to not leaning on anyone, and he naturally followed my lead. But this was too much. “Can you go with me and see if maybe it’s me? I just want information, but he is acting like I’m a child. ” Juan said, “Yeh, that doesn’t sound right. Sure, I’ll go.”
“Well, she just wants to know the details so she can work with you to heal her body.”
The doctor’s resentment showed all over his face. “I’ll tell you what I told her–when she needs to know something, I’ll let her know.”
Juan grabbed my hand and said, “That’s all we need to know” and pulled me out of there. I was a little stunned. And grateful. Still am.
Often times we wonder why we are where we are professionally. My husband and I (at that time) found ourselves in the biomed industry repairing medical equipment for hospitals all over orange county. It was completely by chance that we now had at our disposal an entire list of medical professionals we now knew personally. One call led to another, and before the afternoon had passed, we were directed to the best nephrologist in orange county at UCI, Dr. Cyril Barton.
I went to see him immediately, and underwent his painless biopsy. Didn’t know what he was going to tell me, but just his warm demeanor made me feel hopeful again (and he encouraged my questions!). The cold hard truth was: my kidney disease didn’t go away, but with one doctor appointment, I had a possible future again.
He educated me on things I hadn’t learned from the internet like my particular disease is most common among the elderly in asia. In the United States however, it presents itself among young caucasian men. Yet, I have it. Dr. Barton, who specializes in kidney diseases, was baffled. He could see no reason why I should have gotten this. But optimistic! That meant everything.
The good news was: IGA is slow growing. I could have had it for decades before I was eventually diagnosed. My guess is, I got it when I was given away. The trauma of my childhood…
Also, 70% of those who get it, live their lives without it interrupting anything–30% eventually have renal failure. We wouldn’t know which category I was in until the symptoms appeared. My doctor did advise, “Take your ace inhibitor, your omegas 3’s, follow the diet plan, and try to live a healthy active life. We will draw your blood every three months for awhile and see where it goes.”
Cool. But I knew it wasn’t going to be enough. I knew I had to get my head in the game too. The only way I was going to thrive is: I needed to love. I needed to love in a way I had never allowed myself; in a way I had never loved my parents, my husband, even my gram. I shut down a long time ago, out of self preservation, but it was time my protective wall came down. The only way I could fathom that kind of risk was through motherhood. Anything else just wasn’t worth it for me. I wanted babies!
My sweet super smart doctor that always talked over my head, stopped dead in his tracks, looked at me like I was crazy, and said, “Well, okay, but I wouldn’t have even one baby if it was me.”
He thought I would die if I had a baby. I knew I would die if I didn’t.
(#2, my baby story is my next post) 🙂