Owning It

I have been a bad blogger. But, I have figured out the reason why.

Writing about my transplant and other conditions makes me think about them, and it has been my guiding philosophy since I received my initial diagnosis all those years ago that I would only think about it when I absolutely had to. I would do exactly as I was told and be a model patient…but I’d be damned if I spent my time thinking about my kidney.

After the initial day or two of shock – which really wasn’t so bad for a resilient 23-year-old – I found that, quite effortlessly, I had made a decision. Either my kidney disease could own me, or I could own it. It could be my life, or simply part of my life.

And since I had no idea really how much life I would have, I decided not to waste any time thinking about it. I owned it. I continued to own it for 10 years, until my kidney finally failed, and I was pushed into the transplant process. For 10 years, though, I took my blood pressure medication, got my bloodwork, did my urine samples and saw the doctor like clockwork. Never missed a day of meds, never missed a bloodwork deadlines. I was good.

Even despite the couple of times thing flared up or false starts toward the transplant process, as soon as the crisis was past, the whole chronic kidney disease thing went to the bottom of the list of things to think about. I had so much else to do, think about, dream and survive.

I was young and professionally ambitious in public relations and marketing. I had work to think of, a career to think of. I had a marriage that rocked from very good to very bad to think of. I had a condo that burned down and left me homeless for a year to think of. I had deaths of friends to think of. I had periods of unemployment to think of. I had a crazy love of playing squash to think of. I had a new puppy to think of. I had good friends and good times and great vacations to think of. I had LIFE to think of. Why on earth would I spend an unnecessary second on something I couldn’t control like my kidney?

Like I said, I owned my kidney disease, put it in its place and clamped a lid on it. Unless, of course, I had to deal with it. Then, I did have some emotional bumps in the road to get over or physical suffering to deal with. But…I dealt with it, got through it, got over it, and got back to my life.

For two years after my transplant, I had to think a lot about it. Constant bloodwork, doctor appointments, scans, hospitalizations, infections, complications, medication changes, learning reasonable hypochondria…all of that required thought, attention and work. And I did it. I even did it mostly with a smile and cheerful attitude. After all, I’d survived the hard part. This stuff wasn’t gonna get me now. So, I just dealt with it and tried as hard as I could to find pockets of normalcy in my life.

Over time, despite the cancer and the constant medications and days of not feeling great, I was able to own my kidney transplant again.

I celebrated three years of my transplant on May 15, 2010. It was a blessedly normal, uneventful day. It was the best day ever. I saw Franco recently, and we talked more about “The Girl with the Dragon Tattoo” than transplants. Life this summer has been (DV) blissful. I mean, not without its everyday bumps, but it has been normal. I swim in the pool, cook, write, snuggle with Denny and spend the best days ever at the beach with Eric. I’ve been reading a lot, gardening on my balcony (the begonias are going wild, but my freaking tomatoes are a total bust…and I’m obsessing over them). I’ve enjoyed going to the Philadelphia Art Museum and traveling to see friends and family.

So, perhaps you can see why I would prefer all this to thinking and writing about my kidney transplant.

I remember being so afraid of getting back out in the world when I was in the hospital recovering from transplant surgery. I forget the name of the nurse (Greg maybe?), but I was asking him about grocery stores and movie theaters, wondering how close to normal would I ever get again. He was busy doing something, but he paused and said, “Look, the point of the transplant is to get you back to living a normal life and not really worrying about it.”

Those words are burned in my brain. They were my manifesto of hope…hope that I could someday own my kidney transplant.

Thanks, Greg.

Eric and I after "Point-to-Point" at the Winterhur Estate in Delaware in May

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