This is a blog about life with a transplant. It’s mostly about life, but when you have a kidney transplant, it tends to be part of your life. Some of the posts are retrospective, some pictures are retrospective, some things are just random with my day. I also post about books and movies that I like – I’m a voracious reader. Oh, and you’ll probably meet my dog, Denny, along the way.
The post below was published on my MySpace blog in December 2007, the day before I ended up in the hospital for a week with a serious infection. This was the moment that started this whole thing percolating in my brain:
Well, we have hit another little bump in the road of recovery. This morning, I found blood in my urine. Not the kind of thing a kidney transplant patient wants to see. Plus, I had a few otherthat made me think I might be having a urinary tract infection. Six months of post-transplant living have taught me to be hyper-vigilant about any possible sign of infection.
So, knowing it’s gonna be a long day, I call in sick to work and gear up the medical machine. I call the transplant service, and they refer me to my primary care physician. I go in. Blood work, urine sample, quick exam, and then a puzzle.
There is definitely blood in my urine, but no white cells, so no infection, per se. Doesn’t mean that something isn’t wrong, though.
Dr. B, as we’ll call him, is a wonderful doctor and a nice guy. We share a sherry-dry sense of humor. He checks in with my kidney doctor, then tells me:
“Dr. G ordered some more tests on the urine because you people…uh, yeah, ha ha, you people…tend to get things the rest of us don’t.”
“You people” obviously referred to being a transplant patient, and wow, what a moment. It was like a blinding flash of illumination and understanding. I mean, I knew I was different because I was a transplant patient, but damn! This was funny, alarming, inspiring, frightening, sad and something to be proud of.
Basically, I realized that I belong to a very exclusive secret society. I am going to “borrow” the name for it from the children’s book (oh the irony, anyone?): The Borrowers.
We (and I mean us people) are not really supposed to be here. We are actually supposed to be dead. It was only the smallest quirk of puny human science in the last 30 odd years that allows us to be here. So here we are, anomalies and distortions of the time/space continuum. We are on borrowed time, with borrowed organs in bodies that are borrowing the ability to live and function from drugs and other treatments.
I mean, think about it. We are a group of people walking around with other people’s organs inside us. Some of the organs came from living bodies, most from dead bodies. Ethical grave-robbing for the greater good, and God bless it!We are members of a club we would give almost anything not to be part of. We want to be normal. We don’t want the constant reminders of just how fragile and precarious our existence is. There is one 12 ounce organ between me and dialysis and possibly death. Sorry if that’s morbid, but that is how it is. Normal people get colds. If I get a cold, I run the risk of damaging or destroying my precious kidney. Normal people aren’t balanced on the knife’s edge of taking drugs that both allow a borrowed organ to function at the same time as slowly killing it. Normal people don’t have 10-inch scars on their abdomens. Normal people don’t spend time in the hospital almost every week. Normal people don’t wonder how long it will be until they need another transplant.
Now, don’t get me wrong. I’m not complaining. I’m alive. I’m very, very, VERY happy about that. I’m just pointing out that in some very fundamental ways, I have been altered, physically, emotionally and mentally. I’m not the same as you anymore. But, you wouldn’t know it just by looking at me, or by seeing one of us walking down the street. That’s why we’re a secret society.
There’s a bit of a class structure in this club, too. People on their second transplant are regarded with the greatest awe. They are who we aspire to be. Hell, I want a third and a fourth…however many it takes to keep me going! Long-term transplants (10+ years) come next. Then, inclusive of the top tiers, you have those folks who went through dialysis. They have the scars on their arms from years of needle pricks, the vein thrombosis they keep hidden under long sleeves even in summer, and the stories of getting up at 4:00 a.m. to walk uphill both ways to the dialysis clinic (the jokes about what “shift” you were on are always present in any discussion of dialysis). At the bottom of the totem pole, you have the lucky ones – like me – who got to skip to the head of the line because we had a friend or relative who matched and donated. We are welcome in the club, but we don’t talk much about pre-transplant because we don’t have the “street cred” for suffering like the dialysis folks do. And that’s okay. This social structure is Darwin’s dream – the toughest get accorded the highest honor and respect. That’s the way it should be.
Only the other members of this secret society know what it’s really like to be one of us. We sit around in the waiting room of the transplant clinic, exchanging stories like soldiers who’ve been through the war together. We casually drop the names of our medications and compare notes on side effects. We encourage each other and share bad jokes about our condition. We celebrate milestones like going back to work, anniversaries of the surgery, grandchildren being born. We offer practical advice on things like how to write to your donor family, or tricks for working with your insurance company.When a new transplant comes into the clinic, it’s like welcoming and inducting a new member of the society. We nod sagely at the shock and awe that person is feeling, wince understandingly at the pain of moving (let alone sneezing – my God, that hurt!), comfort and encourage them that it gets so much better. I remember waking up from the surgery and seeing the incision for the first time. I was so shocked, disturbed and fascinated. They had really done it! I was really different now! Not to mention that everything on the inside felt a little…hmmm…shifted around…the weirdest feeling ever!
Then, there are days in the clinic when we are subdued. Someone is sitting there with an IV placed in their hand or arm. That means they’re either getting a biopsy or they are about to start anti-rejection treatment. Those days, it’s an unspoken rule that it’s up to that person to start the conversation about transplants. If they don’t want to talk about it, we chat about pets, kids, careers, or we make fun of the morning talk shows on the television. We don’t waste our words if they want comfort or encouragement. We don’t need a lot of words. A look, a nod, a quick “Hang in there,” or “I’ve been through this, you’ll get through it, too,” are sufficient. We know how little words can do to truly reassure someone staring over the precipice of unalterable change.
Unalterable change is defined by creeping creatinine that won’t respond to treatment. The slow return ofof organ failure, one by dreaded one. The grim word “rejection” becoming part of the vocabulary of diagnosis. We are on borrowed time, but it’s not as long as you think.
A transplanted organ, well cared-for and with a lot of luck, can last about 15 years or so. That’s not a lot of borrowed time. Everyday is precious. Trite, I know, but it part of our creed, just like being tough is also one of our common characteristics. Walk into that transplant clinic or peek into the hall of the transplant unit where the new transplants are gingerly taking their first steps, and you will see one of the toughest group of people around. Navy Seals? Army Rangers? Green Berets? Ha! I’ll pit my psychological and emotional endurance against theirs any day. We are resilient and stubborn. We will fight until the end, and then, we’ll keep fighting, keep pushing. By sheer force of will, we survive…will power and that little anomaly of human science that thought of transplanting human organs in the first place.At the end of the day, I still can’t get away from the feeling that I’m an interloper in my own destiny. Not that I’m objecting, and I’m certainly no gloomy Banquo haunting my own existence. It’s just such a strange, fantastic (in all senses of the word) journey, and one that you do alone no matter who else is around you.
Ask me again in six months how I feel about this, and it might be different. Then again, maybe not.
Once you’re a member of The Borrowers, you’re in for life.