How it is.

Let me first tell how it was.

In November of 1993, I reached End Stage Renal Failure. I went on dialysis soon after, and then waited a year for my HMO to approve the kidney and pancreas transplant coverage I needed to go on the SPK list.

The call came. February 19, 1995 at a little after 8 AM. I went in to Emory, was prepped for surgery, was on the table for about four hours or so, and woke up…well, I didn’t have to take insulin for a long time after that.

I was joyful. I was filled with life like I hadn’t been since I was nine. I was happy, I was ecstatic!

I had to pee!

And then the steroids kicked in. Understand something very clearly: I feel more gratitude than I could possibly express to the family of my organ donor. I have life, thanks not to their loss but to their gift. But sometimes living with steroids is less than a fine time.

Let me tell you how it is.

There’s depression. I was prone to it by heredity; the steroids just made it more apparent. “‘Roid rage” is not an urban myth. I was easily, inexplicably angry at times. The symptoms became less pronounced as the dosage level went down, but even now I can be subject to sudden irritations, usually accompanied by yelling, cursing, but fortunately no violence…at least against anything actually alive. A few nonliving things have been damaged now and then, but so far I’ve retained my grip on sanity pretty well.

There are days when I just feel like crap. I’m tired, listless. I sit too much all the time, but on some days I just don’t even feel like getting out of bed. Oh, I do, but sometimes it feels like an act of sheer will just to get up and go to work. (I am told this is just middle-age; my non-recipient friends are dealing with this, too…but this is my story and I’m not cutting them slack at the moment).

There are good days. There are days when my mood lifts, and the world is bright and I’m top of my game…whatever the heck my game is, I’ve never been too sure, but I’m on top of it.

There are days when my memory is not…I have days when my short-term memory is…

What were we talking about?

Oh, yeah. Anyway, my short-term memory, always a little short of eidetic, gets so bad I go looking for the glasses I’m wearing. It’s not Alzheimers…I hope…it’s the steroids…and the blood pressure meds I have to take because of the steroids. And the antidepressants I’ve been prescribed for the depression exacerbateded by…you guessed it…the steroids.

Where was I again?

The question is, would I, knowing what I know now, have been willing to go through this for the ten years I had post-transplant without having to take insulin injections, without having to worry about having a piece of cake or pie or candy, without having to…manage…my every waking moment? Without having to manage how I did every little thing to make sure I could get to my insulin and syringes to stay alive?

You bet I would.

I am on the insulin pump now, after my grafted pancreas ceased to cope. It works well enough, better than I had originally hoped, though I do have to manage things. I live in some expectation that at some point the kidney will fail, and I will be back on that dialysis bandwagon. Maybe not.

I get along pretty well, despite feeling like crap some days, despite never seeming to have quite enough energy to get everything done around the house that needs doing. I am reasonably healthy, out of shape and overweight, yes, but reasonably healthy. I am married to a woman who, somehow, still loves me even though she didn’t get quite everything for which she hoped (hey, Mandy Patinkin married someone else!). My cats haven’t killed me…yet…and my dog adores me. Well, Chloe adores anybody who will play with her, but she likes me, and I’m happy with that. I have a job, a real, sure enough 40-hour-a-week full-time job, with health insurance, two weeks paid vacation and real responsibility…and I even got to go to Paris on business! I’m doing okay.

I’m doing pretty darned okay.

I am still looking for God. I believe in Him. I haven’t found His name yet. I thought it was Jesus, and it may be, but unlike John Wesley I’ve not quite felt my heart strangely moved, and while I hear His voice, I haven’t heard what I’m here for, what I’m meant to do, how I can live up to the gift I’ve been given, how I can find the energy…and the heart…and the compassion…to make a difference somehow. I tried going back to church, and it was a comfort for a time, but unlike my best friend Trish, who’s faith sustains her, and whose faith inspires her to work for the good of all…I couldn’t keep going when my heart wasn’t in it, and when it was more for my benefit than for His. I haven’t found God’s love inside me yet, not enough to get outside of my own selfishness, wilfulness…my own narcissusism (come on! I’m writing a BLOG!).

But I have hope that I will find Him someday, when maybe I’ve found the way to love someone else more than I love myself; to give up my own happiness and comfort for the sake of the happiness and comfort of others. To love others with the love that I have been given, and with the joy that is there for all of us.

John Wesley once said that redemption was but the door to the House of God; once in you’ve only begun the life of faith. He also said that the door doesn’t close behind you, and that you may wander out again. But, you see, the door…is always open.

The door always open. I put my hope…my faith…in that.

Selah.

More tuna.

Christmas Day is over, by a little over two hours. The house is quiet. Chloe sleeps at my feet, and Stascha is curled up on the other end of the couch. Joy went to bed some time ago, and most, if not all the rest of the cats are on the bed asleep beside her. In the quiet of the night, I have time to reflect a little. Okay, I have time to reflect once I’ve turned the TV off and stopped snickering at people on the History channel who believe in Bigfoot, Dire Wolves, and Mysterious Beasts (truly, does no one in Maine and Minnesota know anything of their own history? It’s a wolverine, you morons! Do you think they’re only a football team in Michigan, for pity’s sake?!?) But I digress…

This was not the most festive of Christmas seasons for me. I was kind of quiet at my sister-in-law’s home this evening, as we swapped presents, and the nephews showed off their new Guitar Hero game. I am on vacation until next week, but the pleasure of that got soured a bit when I was forced to log in from home on Friday evening and fix a problem with one of the catalogs at work. Don’t get me wrong, my job is to support the company’s purchasing catalogs, but I never signed up to be a twenty-four hour help-line. Of course, with no backup, who else are they going to call? But, again, I digress…

The Spirit of Christmas just wasn’t in me this year. I made a couple of halfhearted efforts, but I just couldn’t summon the enthusiasm. My greatest regret is that I found no time to shop, and never got Joy a gift. I had asked if there was anything she wanted for Christmas; she, of course, didn’t have anything in mind. Ah, well, I’ve never been very good at giving gifts, or giving at all, but…Again, digressing.

My lab results from last week indicated that I am in Third Stage chronic kidney disease…again. This is not unexpected, but, well, it’s pretty much bummed me out. I guess I hadn’t looked so closely at that particular indicator on my previous labs, or maybe I was just in Denial (it’s such a familiar, comfortable place, after all; warm, tropical; haven’t the Sandals people built a resort there?), but I’ve become aware of it at last, and while I was never promised eternal good health from the transplant (eating Wheaties and voting Republican, maybe, but not the transplant), I had hoped to avoid having to go down this particular road again. No such luck.

I had prepared myself for this; I knew that things could turn, well, if not South, then Southward, at sometime…at anytime, during my post-transplant life. Unfortunately, being prepared intellectually is not the same as being prepared emotionally. I am depressed, the situation has effected my life here in the fag end of December, and it has pretty much ruined Christmas for me.

Maybe it’s just Seasonal Affective Disorder. I suffer from year-round depression, partly from predisposition (pre-in-disposition?), partly from the steroids and other medications, but the early winter nights, the lack of sunlight, all the other attributed causes of SAD are obviously in evidence, and I’ve certainly been feeling the “affective” part.

I’m already on a maximum dose of Bupropion (generic welbutrin). Medical science may not have more to offer. I will see my psychiatrist in a week or two, perhaps he can offer some further advice. There are other options, I believe, but, well, I don’t know how safe they might be.

As to my ailing kidney, I see Dr. Hill on the 2nd. She will give me a prognosis if I ask for one. And she will give me a program to follow so maybe I can fight off dysfunction for as long as possible. The news won’t be all rosy and bright, but at least it will be news. News I can act on. I’ve had nearly thirteen years of wonderful life, ten of it without daily insulin injections and eating pretty much as I please; I’ve no room to complain…damn it. I do so love to complain.

Charlemagne has come to sit by me as I write. He is purring, and awaiting his turn on my lap, which should come soon, he’s not had too much attention today. His medical problems seem to be under better control at the moment. I’ve no lab work to base it on, but he seems to be eating better, and, maybe, putting on a little weight. We’ve been trying to increase the health and quantity of his diet. I think he’s doing better. He and I will have to face these medical trials together. I hope I can do so with the grace and dignity he has.

Maybe I need to eat more tuna….