But it nearly wasn’t.

So, I admit it, I got cocky. I got brave thinking I was soooo smart and had avoided anything to do with hospitals other than a regular check-up. I got a cold – or rather, a cold got me. It started as the mother of all sinus infections, then withered away to a post-nasal drip, slinking slyly into my chest.

A light cough, coming and going, turned into a medium cough, coming and going. I kept thinking I was getting better.

Apparently, I wasn’t.

So…

5:45 a.m. – awaken with shortness of breath, unbearable pain on the right side of my chest, and chills to the bone, even though I could tell I was burning hot.

5:52 a.m. – thermometer located, temperature tested, 102.4 indicating this is a no-f*cking-around-zone.

6:02 a.m. – husband speeding down the interstate to UPenn where I currently receive transplant care. I know enough to go to the ER where my doctors are, even though it’s about 20 minutes longer to get there than the 10 minute ride to downtown Wilmington.

9:05 a.m. – the count: 1 iv, 2 blood cultures, 1 cbc panel, 1 bmp panel, 1 canula for oxygen, 1 chest x-ray, 3 tylenols followed promptly by 1 upchucking, 1 dose of intravenous zofran, 1 diagnosis of pneumonia in the lower middle right lobe of my lung, and finally, blessedly, 1 dose of intravenous dilauded.

Getting high in the ER

There is a kind of rhythm of the ER procedure that you learn after a while. The first 35 minutes are usually the worst. Unless you are brought in by ambulance, this includes stopping at the registration desk and producing all kinds of identification and insurance cards.

Then, you either sit and wait, or, if you’re lucky enough to have breathing problems, you get taken right back. Despite chills and pain, you then must shed all the clothing that has become cozy and warm by now to put on a cold hospital gown and snuggle up as best you can on the gurney.

There follows several minutes of various RNs and CNAs popping in to get your vitals, ask your story (the first of approximately 16,937,248 times you will be asked to repeat it), start an iv (and if you are lucky, to sneakily and privily draw your first bloods from there instead of a separate stick), and provide you with what I always affectionately called “the barfing bowl” – though nowadays, it seems to be more of a disposable barfing bag.

After this, you get visits by a resident (or two), maybe a medical student (who can be fun to torment if you haven’t gotten your pain meds yet and are looking to take it out on someone), and then the attending physician. All of whom need you to repeat your story when all you want to do is lie on the gurney, groan occasionally and stare up at the ceiling.

Finally, you get around to signing some more papers, some more people come in to ask you all kinds of questions about listing your belongings, surveys and other nonsense that I shortcut by groaning and approximating retching noises.

A nurse pops in to hang a bag of saline and tell you lots of meds are coming. At this point, you might get an x-ray tech or ultrasound tech, depending on how urgent your case is. I had a chest x-ray before I could ask for my first ginger ale. Impressive, I call it.

Then, finally. FINALLY. You get your first doses of the meds. Plus, the painkiller. Now, you sleep.

I feel compelled to point out two things here:

1. I am not advocating the wanton use of painkillers. However, they exist for a reason. Pain keeps your body from putting all its energy towards healing itself. Painkillers put you to sleep. Sleep is a major factor in healing. Painkillers in their proper time, place and dose, administered by a professional, are fantastic.

2. I tend to fall asleep to odd things: air traffic control, taxicab dispatch radio (the grouchy dispatcher yelling at the drivers just lulls me like a dove’s coo), and the sounds of an ER.

A few hours later, you get badly startled awake by someone not trying to startle you, and you get another visit from the nurse, more vitals, more meds and the first of a lot of ginger ale and graham crackers. Oh, and you get some kind of specialist or two dropping by.

You get to drift off again for another few hours, and by the time you wake up next, the fresh fun and novelty of the situation is beginning to wear off a bit. This is the point where either you get discharged or you get admitted. Both mean that you wait for several hours. And eat more ginger ale and graham crackers.

So, I get admitted with pneumonia. The right side of my chest from the bottom of my ribs to the base of my neck feels like walking on a sprain every time I breathe in or out.

I get taken up to the med/surg floor where I’ll be staying, and I decide that two doses of dilauded will do for now, even though I could use more. There is enough residual effect that I’m only in moderately extreme discomfort. I have a high pain threshold. Now. I didn’t used to.

Tucked in for the night

So begins the routine of getting upstairs. First, there’s the frogger-like experience of being maneuvered on a gurney through the ER – complete with other gurneys, lurching patients, lumbering families standing awkwardly in exactly the wrong place, doctors and nurses darting to and fro, environmental services carts, supply carts and all random wheelchairs. Then, you get a kind of surreal ceiling-tour of the hospital as you’re taken up to the floor.

Once in your room, your nurse comes in and gets you settled, asking your story. You get vitals, blah blah blah. Usually it’s too late at night for the doctor to see you, but they might. They want your story, too. At this point, you are arriving back at the beginning of your circle and wanting only to lie on the gurney, groan occasionally and stare up at the ceiling.

I fight the need for pain meds until the last possible moment, when I know I need to sleep. So, I get my dilauded, I get my saline bags. And I’m good to go.

The rest of the night is a hazy mix of good, deep, drugged sleep and waking up every four hours for vitals. I’m okay with that part. I can doze through it. What always really, really bothers me is the ungodly hour they decide to come and do bloodwork in the morning. I mean, I know I need my tacrolimus levels checked early, but 5:15 a.m.? For the love of humanity! At least bring coffee with the butterflies!

There’s very little hope of good sleep after 5:30 a.m., because then you get bloodwork, vitals, rounding docs, nurses, etc. The only bright point is breakfast – except, and I hate to say this, UPenn has the WORST hospital food I’ve ever had. EVER. And I’ve had a lot.

Oh, did I mention how much fun it is in the middle of the night to wake up with a bladder full from your saline drip and realize that you have to go urgently, but a) you must first unplug and loop the cord of your iv pole without hurting your precious iv access; b) somehow manage to maneuver your iv pole and 25 feet of oxygen tubing around each other and yourself so nothing gets tangled; c) do your business, wash your hands and try not to fall over or trip during the procedure; and d) return the iv pole and replug it, get into bed without strangling yourself with oxygen tubing and calm down enough to fall back to sleep. Yeah. That fun.

Good morning!

By now, we’re past breakfast, and if you’re lucky, you can sneak a two hour nap in before lunch. (Three times they brought me food, and two of the three times I couldn’t tell if it was chicken or fish. Literally. The third time, it was clearly a hockey puck dressed up as a chicken breast.)

I’m feeling good, still in some discomfort, but ready to do some serious getting well. This involves more fluids, more antibiotics, and a lot of worry about whether my precious iv is going to last because it’s already starting to burn a little. I do NOT want to be stuck again if I can help it, but I have such sh*tty veins, any drugs going into me usually burn right through them. I also get an incentive spirometer. This is good and bad. Good, because I get to practice deep breathing and healing. Bad because I start getting competitive with myself over it. Right. Hyperventilation city.

However, my practice is worth it as my oxygenation improves and they say if I keep doing well, I can ditch the canula by afternoon.

I feel some guilt over the canula because I remember making Dad wear it as he was unconscious and dying. He still instinctively tried to pluck it away, but I kept it on him because the oxygen was supposed to make him more comfortable. I discovered first hand that it produces sharp, dry, bloody boogers that dig into the tender sides of your nose. Dang, I feel bad about that now.

The rest of the day went quickly (unlike this post). I got up, walked, hyperventilated and turned up my nose at another meal of mystery meat. The only two important thing that happened were that I went without pain meds for the rest of the day, and they said I would probably go home the next day.

Another night, another morning. The doctor announces I’ll be discharged. I’m very happy, but I know better than to get all excited. News of your discharge is always greatly exaggerated. It’s no one’s fault because everyone is so busy and it takes a LOT of paperwork to let you out of the hospital (almost as much as to let you in). Between the time you are told you will be discharged and the time they come to discharge you usually runs about 3-4 hours. So, I take a nap and read a little bit. It’s not even worth changing until they take the iv out because if you spurt or drip, well, blood is a pain to get out of clothing.

Finally, three hours later, I’m on my way. It’s always a bizarre feeling to walk off the floor and out into the lobby of the hospital. You feel like you’re doing something not-quite allowed. It’s like you’re seeing the world again for the first time and freaking out just a little. It’s just surreal.

First day home from the hospital

So, then you go home, and then you’re like, okay, I’m home. Where did life leave off three days ago? Ah, then you remember, and life goes on.

As always, I send a HUGE shout out to the doctors, nurses and technicians who do such amazing work, but especially to the nurses. Nurses are the front line in the war against your illness. They are the human touch and the medical expert that you instantly can relax around, knowing you’re in good hands. They’re the ones who advocate for you when you need help with the pain, notice a change in your symptoms that can turn out to be hugely significant, and yet, they don’t blink an eye when you have to lean on them to get to the bathroom, or throw up all over yourself. They treat you with a dignity that turns a sh*tty, embarrassing situation into something a little less sh*tty and embarrassing. So, to all my RNs and CNAs and MDs, I say thank you again for letting me “borrow” a little more time.

What am I thankful for this year? Well, so far, 2011 has sucked for me. Of course there are things I’m grateful for, but topping the list this year?

• The fact that 2011 is almost over
• My own personal Malta…
• Family and friends who love you no matter how much of a mess you are, who drag you kicking and screaming from your shell, and who whip you with wet noodles for you own benefit
• Denny Basenji
• A creatinine of 1.34. Booyah!
• Continuing to wake up each day
• La Cucina Italiana
• Nice-smelling body lotions and shower gels
• Science

I’m sure there’s more, but if I were just to go on gut reactions, that would be it. Hopefully, 2012 will better and NOT include the end of the world (my personal theory is the Mayans just ran out of room on the stone for the calendar, and that’s what I’m going with).

So, I nearly forgot my transplant anniversary yesterday. I didn’t remember until almost midnight – how very Cinderella’ish of me, non? I was busy all day with work, groceries, getting dog food for Denny and eating my way through Eric’s amazing truffle mac n’ cheese (You want the recipe? Ask him nicely and he might give it…soooooo worth it!!!). I read a little, then fell asleep over my book, only to wake up and remember it was May 15, 2007 that Franco Faraguna gave me his kidney and saved my life.

He’s doing great. Still climbing mountains, still riding his motorcycle, still very much a part of me (literally and figuratively). I’m doing great, too (knock wood). I need to go get some routine bloodwork done, but I don’t anticipate any major problems (God-willing!).

So, here we are at the start of year number five. I look back at all that I’ve survived in the past five-six years, and I feel a combination of pride and wow-am-I-really-such-a-Polly-in-Peril? The litany of difficulties, complications and tragedies is pretty intense: multiple infections/hospitalizations, life-threatening drug reactions, financial woes, years-long insurance battles, depression, insomnia, losing my dad, cervical cancer, long and painful recovery from several surgeries, more insurance battles (it ain’t over yet), struggling to maintain some normalcy and routine…

On the plus side, I have Eric. I found him, he found me, and we found an “us” in the process. The “us” has faced this all down together. I tease him that I may be the Rock of Gibraltar, but he’s my Malta because every Gibraltar needs a Malta. I have Denny, the small, fuzzy master of cuteness who has suddenly learned to climb up on the dining room table like a cat. I have my mom…and I still have my dad in spirit. I have my wonderful family and friends, my lifers and my stalkers (you know who you are!), and all the kind, generous, fun, loving people who have come into my life.

I have simple pleasures, like my balcony garden, reading, cooking, hanging out with friends and going to the beach.

I look at some people I’ve known in high school and college, and they have such amazing, adventurous lives. Part of me wonders why I didn’t take that path. Of course, I know the answers to that question, and I don’t regret my choices one iota. Perhaps survival has been my great adventure and great achievement to-date.

But now, survival isn’t enough.

It’s time to do something more. I’m not exactly sure what else that is, but I’m pretty sure the universe is going to hit me over the head with a 2×4 to point it out to me (the universe’s usual technique with me, apparently). So, here’s to hoping for a big, positive, amazing year number five…

But it has to be written.

My father, Kailash Chandra Khemka, passed away on January 15, 2011.

He had suffered two strokes in 24 hours on January 9 and 10. Massive strokes that destroyed any hope for any quality of life other than that of a vegetable. The second stroke happened in the hospital, St. V’s in Indianapolis, and Dr. W came in with the ICU resuscitation team and asked me what my decision was based on what he could tell me of Dad’s condition.

The entire part of his brain that dealt with speech, language, the right side of his body, various bodily functions such as swallowing and controlling bowels, etc. was gone, according to the x-rays. That was what the first stroke had shown. Who knew what the second stroke had done just then. If we put him on life-support, he might regain a kind of consciousness, but he’d never be the man he was.

Flash back four years, a sunny afternoon in our family home living room. Dad and I were talking, just as we had always done, all my life. He said he wasn’t afraid of growing older and sicker, that it was part of life, it was part of the Hindu life cycle that you had to accept. He said he was at peace with it as long as he had his mind.

“Caity,” he said. “My mind is my treasure. If I were to lose that, I would not want to live.”

It was a familiar refrain. For years, he had said that over and over. Mom, too. Their wishes were as clear as if they were flashing before my eyes in neon.

Now, in the hospital room, crowded with heroic medical professional trying to save his life, the neon hurt my eyes, and his words tore out my heart.

But I was my father’s daughter. I had his courage, his strength, his moral surety. I could do what he wanted, no matter the cost to myself. I would take care of Mom. I would make things right in the end. I would honor my father’s wishes.

“No,” I said, trying to keep my voice from trembling. “Let him go. No life support. Just palliative care.”

The relief in Dr. W ‘s face was palpable, and he squeezed my shoulder and told me I had made the right decision, a brave decision, one that was best for my dad.

I knew it. I believed it. I understood it.

It doesn’t change the fact that to this day, I am ever so slightly haunted by the sentence that popped into my head just then, “I have just made the choice to kill my father.”

Kill to be kind, to be sure.

Still.

What followed were six days of vigil at his bedside in the hospital. This brilliant, kind, courageous man, replete with human faults and human magnificence, lay there, slowly dying. I pushed for all the painkillers and tranquilizers that we could possibly give him, even when the nurses (their tones heavy with unspoken meaning) told me that more could increase the risk of stopping his heart. They, too, looked relieved when I told them that I understood the risk, welcomed it as an end to his suffering, and to go ahead and give him the meds.

Where he wandered in his mind during those days, I don’t know. I do know that he managed to say goodbye to us.

It was hours after the second stroke. Evening had set in. Mom and I were surrounded by loving friends – family in all truth. Suddenly, Dad opened his eyes wide, and he looked like he was struggling to stay focused. We called his name and jumped to his bedside. He looked at each one of us in turn, then closed his eyes one last time, a tear slipping from underneath his eyelid.

Five days later, when he passed, he was surrounded by all the friends and family who, just a month before, had gathered to celebrate his and Mom’s 50th wedding anniversary. He made a short speech, saying that the people around this table were his dear friends and his family, and that he was so blessed to have them in his life. Those same people had sat with him and me and Mom all those long days and nights, feeding us, bringing us changes of clothing, comforting us. And they all prayed with us, each in their own way, at the end.

It was so very quiet.

I remember reciting Dad’s favorite poem, “Crossing the Bar” by Lord Tennyson, as his pulse began to slow, and Uncle Shahid recited Dad’s other favorite, “Requiem” by Robert Louis Stevenson. I watched as Dad’s pulse in his neck fluttered softly, then finally stopped.

He was gone.

My father was dead.

Even now, I still have trouble building that into part of my day, part of my reality. Even after the heartache of the struggle to get his death certificate, to find the papers we needed for finances, to fix the house that suddenly seemed to fall apart on our hands, to get through the hours at work, to comfort each other…

I have tried very hard to be strong, to be stoic, to be the Rock of Gibraltar for my mother and for others, so that they could have time and space to work through their own grief and feelings without worrying too much about me. But, it has taken its toll on me, and I haven’t been perfect at it as I had hoped.

Spring is here, though, and I’m hoping that with the renewal of life in the earth will come some renewal in my heart. It’s not so much that I miss what Dad and I had. We had that. I’ll never lose that. I miss him “forward.” I miss the things I’ll never be able to tell him…the things he’ll never see like grandchildren (someday) or books I’ll write…the little silly jokes and things we shared…Yes, I will definitely miss him every day for all the days of my life to come.

You remember my post, “Witness” where I talked about my bizarre collection of hospital wristbands from all my hospitalizations (19, so far). Well, I added one to the collection. My dad’s very last one. People thought I was totally strange for taking it, but for me, it was just something I had to have. It’s stained and smudged, and battle-worn. Just as I have his first wristband from 1997, I have his last. I can’t explain why I have to have it, but perhaps you’ll feel, too, an understanding of why, even if you can’t articulate it.

There is so much more, so many more details, bits of memories, moments, and things that I could add in here. I’m not sure I can, though. And I’m not sure it would make a difference. I’m not even sure if there is a point to this post, other than it had to be written at some point, because otherwise, I would drown in it.

I guess the only thing left to say is that my father’s life is a testament to great love, and being my father’s daughter, I say to you: love everyone you can, every day.

Blessings,

Cait

Me and Dad - his favorite picture of us

I have passed the mountain peak

and my soul is soaring in the firmament

of complete and unbounded freedom;

I am in comfort,

I am in peace.

Kahlil Gibran

The generic name is tacrolimus, not to be confused with sirolimus (Rapamune). Prograf is one of my two immune-suppression drugs, with the other being prednisone (yay, boo – see my post on “The Devil you know”).

Prograf keeps my kidney alive, thereby keeping my transplanted kidney alive. That one little pill is so terribly important.

You can look up Prograf on WebMD or whatever. I’m not here to give you the medical specifics of exactly how it stops my immune system from attacking and destroying my kidney. I barely remember myself, despite the hardcore drilling I got when I was learning how to take my meds in the hospital. I believe I remember, though, that it is classified as nephrotoxic. So basically, it is slowly poisoning my kidney even as it is saving it.

The key is the chemistry. It has to be in perfect balance. Your creatinine and tacrolimus levels have to be just right in order to keep everything in working order and to prolong the life of the graft (side note – graft? I mean, I get it why they use the word, because it’s literally grafted in there like a skin graft…but why not transplant? Graft makes me think that somehow, my kidney is blackmailing someone, somewhere…and if it is, how come I’m not seeing any of the money?).

One of the things you get used to in the early part of your transplant, even down the road, is getting your Prograf level read. This involves at least 12 hours between your last Prograf dose and your morning bloodwork. You cannot take your Prograf before your bloodwork, which is fine. I just have to remember to pick it out of my pre-sorted daily med container for that morning. I don’t remember exactly how they read your Prograf levels – seems like there are lots of things I don’t remember but I know that I have to do – but the transplant folks are extremely specific in what they want to see in both your creatinine (kidney function) and Prograf levels.

For a while, I was on an extremely unusual combination of both Prograf and Rapamune – tacrolimus and sirolimus. They’re pretty similar, but like similarly-charged magnets, they are not supposed to get along. Still, it seemed to work for me. For almost eight months, I was on Prograf and Rapa (this was after the “Break my Bones” incident where Imuran had been ruled out for me, and CellCept had already bitten the dust). Then, I developed a deadly allergy to Rapamune, and all that was left for me was a combination of Prograf and prednisone.

So now, this little pill is very, very important to me. Did I mention that it’s also wicked expensive? One bottle for a month would run me over $1,000 without insurance. Even wholesale, my small neighborhood pharmacy in Boston lost money when they ordered my Prograf for me. The pharmacist (who owned this mom-and-pop business) personally begged me to take this prescription to a major chain, as the recession was hitting, and he lost close to $200 for every refill for me. For his honesty, as well as the way he personally watched over my other medications and helped me out, I was glad to give my Prograf business to Walgreens. But, Prograf is not a common drug. I would have to make sure I called two days ahead of my refill time to give them enough time to order it – and this was a Walgreens in Back Bay in Boston. You would think they’d keep it stocked, but apparently, it was expensive enough that they didn’t. Go figure, you spend all that money on Prograf, and you don’t even get high. What a gyp.

There is a generic now. It’s tacrolimus, and three companies manufacture it. However, my doctors at both MGH and UPenn are adamant that for the time being, I stay on the brand name. Apparently, generic medications are manufactured to be within a “range” of the original medication. This might be all right for your anti-biotics or your painkillers. But, for an immune-suppression drug where exactness is critical, it is an unacceptable risk. Who knew?

Prograf itself is not all roses and bunny-flowers. At least for me, the major side-effects are insomnia and tremors. When they were fixing my Prograf levels in the first few months after the transplant, I felt like someone had stuck my finger in an electrical socket. I was shaky, jittery and wired. When I tried to lie down to go to sleep, my legs, feet and hands twitched constantly, and my whole body shook from the inside out. Eric would have to feed me sometimes because my hands shook so badly, I couldn’t hold a fork or spoon in my fingers. Coffee cups would slip from my hands, veggie-burgers would go flying across the table.

Finally, after about a year, we settled on 2 mg in the morning and 1 mg at night. That has been my regimen – no matter what else has changed – for the past two years. And, no matter what has happened – surgeries, hospitalizations, travel, etc. – I have never missed a dose. I’m just good like that because I know this isn’t shit you play around with. My hands still shake slightly all the time, and I occasionally lose a fork, but other than that, I’m okay.

Now, based on some new bloodwork that has come back, it looks like we need to tweak my Prograf levels. The UPenn folks are adding .5 mg of Prograf to my evening dose. Doesn’t sound like much, and it could turn out fine. It could also hit me like a sledgehammer. Needless to say, I’m not eager to find out.

Any change in medication takes a couple of weeks to adjust to, and while endurance is a great virtue of mine, patience is not. Regardless, tomorrow, I will be picking up a prescription for .5 mg of Prograf and starting to add it to my nighttime pill assortment. In two weeks from tomorrow, I’ll be getting more bloodwork. Then more phone calls. Maybe a quick appointment before my next scheduled follow up in October. I guess you could say this is why I really don’t like any changes to my meds. It usually means I have to think about it more, spend more time doing stuff about it, and deal with either being hyper-vigilant for various side-effects or dealing with various side-effects. Blah.

But, considering that it’s the only immune-suppression drug I’ve got left? I’ll say God Bless Prograf – any dose, any time, any where.

But, that still doesn’t mean I like it.

I have been doing yoga on and off since the summer of 2008. I’ve gotten back into it in a last ditch effort to try and shake off some of these Prednisone pounds. I combine it with 20 laps in the pool or an hour on the treadmill. So far, so good, but man, it pisses me off.

I love swimming, dancing and power walking. It’s active, it’s fun, it gets my joy going. Plus, I can listen to music or play in the water. Most of all, I can let my mind go and race down all sorts of different paths, thinking, imagining, analyzing, noticing…

Yoga is boring. I don’t mind that it’s physically hard. I kind of like the challenge. But it’s the boringness that gets to me.

Before you start to object, yes, I understand about breathing and meditation and focusing and stilling the mind, etc. I’ve done all that. I’m actually quite good at meditating and practice almost every day. I can totally get into a very deep place of stillness with it. I can even put myself to sleep. But I don’t need yoga to meditate or focus on my breathing.

With yoga, I have to concentrate on holding the pose or moving through it or whatever, which doesn’t leave me any room for my mind to have fun, and I can feel it straining at the leash. I also have a lot of trouble with the soothing New Age-y chatter. Stop talking to me! I don’t want to hear you. I don’t want to listen to you. I don’t care about being one with the universe at this moment. I just want to stay upright (or downright, as the case may be).

However, I think the number one thing about yoga that pisses me off is downward-facing dog. I hate that pose with a passion. I have had soooo many people – expert teachers, friends, etc. – try to help me with it. I have tried props and pads and braces. I have tried perfecting my stance, pulling in my belly, increasing my flexibility, adjusting my head and shoulders, using my entire hand to hold the weight, but to no avail.

Downward-facing dog hurts the heels of my hands and my wrists. Hurt is a mild word. It’s extremely painful. I have teeny tiny bird wrists, and frankly, I think that is the root of the problem, and it’s not going away.

I do the pose because it’s part of the exercise, but I don’t like holding it. The longer I hold it, the more it hurts. I try to hold it for as long as I can because I hate wimping out and having to drop to my knees in a modified version. But damn, if I have to hear one more person tell me what a great pose it is, how relaxing it is, how restful it is, I will smack someone. Hard.

I just want to hear from someone else that they hate downward dog as much as I do.

Still, I do yoga because I am not going to let my transplant drugs get the better of my body. I feel so odd and alone, disliking practicing yoga but doing it anyway. It’s like how I’m a vegetarian but hate beans and refuse to eat them. Or how I don’t like chocolate.

I should stop now before you really start to think I’m really weird.

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

The Deadliest Catch was on in the hospital when I was recovering from my transplant. I’d be lying in my bed in a haze of pain, watching these men battle the elements of the Bering Sea in order to fish for Alaskan King Crab. Night after night, I’d watch them being battered by the elements. It put everything I was going through in perspective. Sure, I was recovering from major surgery, but I wasn’t hauling crab pots in bitter cold water and wind and snow on a pitching boat.

Watching The Deadliest Catch made me feel better about my life. Not in the way that watching COPS makes me feel better about my life – that’s just pure smarmy self-righteousness. It’s also not reality TV that makes me want to put my eyes out and pour bleach on brain to get rid of the entitlement and whining. No Kardashians, Hiltons, housewives or shore rats. No crises about shoes, boyfriends, drunken club scenes, etc. The Deadliest Catch is something I can respect. They’re fighting life and death, just like I did.

I like these guys. They’re blunt, straightforward, hard-working, SOB’s. I think they’re kinda hot, too, even though they probably smell like fish. Better fish than hair gel. I love how most of what they say has to be bleeped out. One greenhorn complains, and the response is: “Shut up, haul pots and make money. That’s all there is.” That’s the kind of philosophy I can live with.

Every hospitalization I’ve had, I’ve paid for extra t.v. service just so I can watch my guys on The Deadliest Catch. It has been my comfort through every illness. It has lulled me to sleep, distracted me from pain, transported me away from my hospital bed. I cried when I found out that Captain Phil had passed away. It was like losing a fellow patient, a fellow sufferer, a fellow survivor. I admire their human spirit, the sense of responsibility, their pure gumption and pig-headed determination. I’ve watched them with broken ribs, black eyes, concussions, sub-freezing temperatures, arctic storms…all in the pursuit of one thing: success.

I can relate. I get it. I’m there – well, not in freezing arctic waters hunting for crab, but you know what I mean.

Now that we have real cable, I can watch them on a regular basis, and I intend to watch them faithfully this season. Do not try to talk to me on Tuesdays at 9pm. No hospitalization required.

Join me?

http://dsc.discovery.com/tv/deadliest-catch/

Tough Girl is tough (kind of like Long Cat is Long). For me, Tough Girl is my hard edge, the unbreakable, unchippable rock wall that both protects me and lets me lean up against it. Tough Girl is my response to everything I have ever been up against. It is my mantra in times of distress: “I am Tough Girl, and I can get through anything.” She’s a survivor, a bulldozer and a force of nature when need be.

Tough Girl has survived being fired, laid off, unemployed, losing her home in a fire, troubled relationships, being broke, hospitalizations, near-death experiences, being alone, deaths of loved ones, divorce, a transplant and cancer. It’s because of Tough Girl’s tenacity that I can still smile (without twitching).

When it comes to physical pain, Tough Girl is kind of like the leather strip they used to have patients bite down on. I can grit my teeth and endure because Tough Girl doesn’t EVER give up. I recite the Tough Girl mantra and cling like a drowning man (determined not to drown) to my mother’s words, “All pain ends eventually. You can get through this.”

There have been very few times in my life when Tough Girl almost wasn’t enough. One of those was when I developed serious Leukopenia (aha! We return to the main topic with such a smooth segue!).

Leukopenia is is a decrease in the number of white blood cells, which increases the risk of infection. It’s easy to see why transplanters are susceptible to this, as our anti-rejection medications are designed to decrease the number of white blood cells to prevent the body from attacking the transplanted organ. But sometimes, we get reactions to those meds that go a leeeeeetle too far. Okay, maybe a lot too far.

It was August of 2007, three months after the transplant, and I had been on a roller coaster of dosages and blood tests to try and figure out what was the right set of anti-rejection meds for me. CellCept, which should have worked beautifully for me, ended up not working at all and giving me severe GI distress, to put it politely. I had already been hospitalized for a severe UTI that got into the transplanted kidney back in July.

The doctors had taken me off CellCept and put me on Imuran, which seemed to be working okay. I was maybe four weeks into taking it when I went for another check-up and got some really disturbing test results. Normal white blood cell counts are supposed to be somewhere between 4 and 10 on the scale they use (again, this is just my own lay knowledge/memory, so I could be off). I knew that they tried to keep us down at the lower end, just below normal, but apparently, I was way low. Way, way low.

My white blood cell count turned up at .08.

I took the news with my usual Pollyanna’ish, “Oh, is that all? Well, let’s fix it!” attitude that was part of my survival toolkit. I had learned not to worry about every single blood test or result, because I had seen how things could change from day to day, and also, what was the point of worrying?

It took them several explanations to get me to understand just how serious this was. It was serious enough that I might lose the kidney. Well, that sobered me up pretty quick! I was advised to stay home, or if I had to go out, wear a mask and gloves and try – for the love of God – to stay away from people. I was also given a shot of something, I forget what it’s called, but it was designed to stimulate white blood cell growth, and I’d have to come back in two days for the other shot.

So, mildly worried, but determined, I went back to work wearing the requisite gloves and mask. Nothing really happened except some really great jokes at my expense. Tragedy struck at this point. My husband’s (then boyfriend) cousin passed away suddenly, and we were all set to go down to North Carolina to be with the family and attend his funeral. The doctors put the kibosh on my being on a plane or doing anything but sequestering myself in the house after the second shot, so I had to stay behind while Eric went down.

With a heavy heart, I went in on Friday for my second shot, and then I went back to work. I started to feel some mild discomfort from sitting after lunch, and the discomfort grew steadily more intense as the day went on. I had a meeting with my boss, and I was having to shift in my chair almost every 30 seconds to keep the discomfort at bay. It wasn’t really painful. Yet. Just irritating.

I took a cab home instead of the subway, per doctor’s orders, and it was in the cab that I really started to feel some pain. Still, I managed to have a lovely conversation in French with my Haitian cab driver, walk the dog and eat a little dinner.

It wasn’t until I laid down on my bed that the pain hit. And it hit like a Mack truck. It was like every bone in my body was being sliced open from the inside. Choose your adjective. The pain was sharp, stabbing, searing, all-consuming. It didn’t have a focal point, either. It was everywhere in my body. Every bone in my body was on fire from the inside, from my ribs to my skull to my toes. There wasn’t a single way I could sit or lie down or stand up or move that would ease the pain. I was literally writhing and rolling on the bed, half-mad, half-out of it from the excruciating agony.

Now, I may veer into the melodramatic sometimes, but I am not exaggerating about this. It was pain like I’ve never felt before. My body was literally cracking and breaking and on fire.

Eric called and stayed on the phone with me for a long, long time, just being there. I could barely talk, but just to know he was on the other end of the line, that he was breathing with me, aware of my existence, gave me something to hold onto.

Eventually, though, he had to go to sleep, and I was alone in the small hours of the night. I couldn’t even manage to speak my Tough Girl mantra. Occasionally, I managed remember that this pain would end, like my mother said, but it took too much concentration and effort to think even that simple sentence. All I could do was roll around on my bed, grimacing, gasping and trying not to cry.

Denny joined me on the bed, trying desperately to snuggle with me, to curl up against me and share his warmth and have me wrap my arms around him, but even touching him was agony.

There was no sleep that night, just a solid haze of wild pain.

The next morning found me still in pain, but I managed to crawl outside and take Denny out. Tough Girl has responsibilities to those who depend on her. By that evening, the pain began to recede ever so slightly. I could sit for a minute at a time in one position without being stabbed from the inside. By midnight, the pain had faded to a dull ache, and I lay on my bed, splayed out and exhausted. My body was limp and worn out from enduring the pain.

But the pain was ending, just like promised.

Eric came home on Sunday, and just his solid, steady, loving presence soothed me better than a fistful of Vicodin (though I did finally break down and take one from my hoarded little stash – I didn’t take it earlier because I knew it wouldn’t do anything to ease that kind of pain…but now that it was gone and all that was left was the exhausted ache, Vicodin could step in and do its job).

The following week saw me back at the clinic and my numbers steadily climbing again. I was switched to a Rapamune and Prograf and Prednisone combination, which seemed to be working. And on Saturday, I went to the beach.

Tough Girl, indeed.

Tough Girl

PS. I looked up the medication they gave me for the Leukopenia (still can’t remember its name), but the side effects listed said, “potential mild skeletal discomfort.” Forsooth!

Ha!

Missed three days of work. Exhausted. Can’t hear a damn thing out of my ears. Have this sinking feeling that once all the gunk in my chest starts to loosen up, I’m going to have a hacking cough, and have a semi-runny nose. Plus the general blech you feel when you have a cold.

In the beginning days of the transplant, having a cold frightened the heck out of me. My head was full of oh-no-if-I-get-a-cold-it-could-turn-into-kidney-failure, the kind of jump from sniffle to pneumonia, from a cramp to rejection.

Now, I get a cold, and while I keep an eye on things, I like to think I’m a little more reasonable about it.

I would write more, but I feel like crap that has been run over by a Mack truck, so I’m going back to lying on the couch and staring out the window because that’s all my brain is up for now.

Ciao-achoo!