THE BOOK

I began writing my book more than ten years ago. I had just survived a very difficult and serious second liver transplant. It seemed like the appropriate time to seek closure from years of illness. The process of writing a book took much longer than I had anticipated. I had heard this cliche before and was sure it wouldn't apply to me. Yeah right...

I sat at the old graphics design table in the quietest room of our house one night, and began to write. Before connecting pen and paper, I asked myself, how am I going to do this when I've never written anything before, especially never in English? I spoke well enough, but did that mean I could write an entire book? Maybe I should write it in German.

I decided to write in English. The majority of my hospital stays had still been in Germany up to that point, but the transplants had taken place in the U.S., and therefore medical expressions and terminology were at the tip of my tongue. The first outline was done within a few days.

The words flowed out of my mind onto the keys of my computer and lit up its screen. A month after the outline, I had typed over 800 pages. For someone like me who is not particularly known for my memory, I was amazed that every detail was in my mind as if things had happened yesterday. It seems that traumatizing events stay with you. Once this first draft was finished, I put it away for several months. Although I had written a lot, I didn't have a conclusion to my story.

I picked up my manuscript much later and read it again. I couldn't believe what I had written. The story was fine, after all it was pretty much carved in cement since it was a faithful account of my life. But rather because I never realized how poorly I spoke English. The grammar was fine. My mother had seen to this growing up. However, expressions and wording of sentences, all of it was 'off'.

I began listening much more closely to the radio and television. Whenever a particular expression suited what I was writing about I used it. Little by little, the second and third drafts came together. Even though, I still didn't have a conclusion.

While my English was improving, my story wasn't. Not until I gave it to my husband to read did he point out the immense flaw. The solution might be simple, the execution of it, not so simple. I put the manuscript away for several more months still unsure how to fix it.

In my manuscript I had cast myself as a superhero defeating death. My story lacked honesty; honesty, first and foremost, towards myself. I had become so adept at burying my feelings in order to deal with my health issues, that I couldn't bring them to the surface anymore. I hadn't included them in my writing. The act of putting events on paper forced me to confront emotions I had never dared face before. Draft by draft I began removing layer after layer of thick skin. Like an onion, I peeled off a barrier at a time to get to the real story. I imagine this is the type of work therapists do.

By the time I reached draft number XXL, I felt as if I had spent years in therapy. The more I delved into my state of mind during my illness, the deeper the sense of relief. My manuscript was taking shape, but I still didn't have a conclusion.

Ten years flew by in a flash, but illness didn't let go of me. I wound up having a third liver transplant and a new kidney. This last physical trauma had to become my conclusion, the final chapter after twenty-eight years of roller-coaster health.

Finally, I felt confident enough to relinquish my finished manuscript to my most genuine critic. My husband's talent to take a story and find its heart proved invaluable. Once again I ended up under the knife...well, my manuscript did. He and I slashed the repetitive moments, carved out my sometimes harsh words, surgically removed all boring lengths and stitched my story together by keeping the best moments. Hopefully we succeeded.

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 THE BOOK IS AVAILABE FOR PURCHASE AT BARNES AND NOBLE

http://www.amazon.com/s/ref=nb_sb_noss/177-2814359-9266907?url=search-alias%3Daps&field-keywords=four+livers+and+no+funeral&x=0&y=0

TRANSPLANTS

We all know what the word ‘transplant’ means, but what exactly does it entail? I’ll try to explain the process without putting you to sleep.

Dr. Christiaan Barnard performed a successful transplant on a black woman in South Africa in 1969. She lived twelve years and six months with her new heart. In 1967, Dr. Barnard had first tried several heart transplants but the patients died. For many years the effectiveness of transplants was debated. Then, in 1981, Dr. Starzl (my hero who transplanted me in 1984) championed the anti-rejection drug Cyclosporine. Prior to then, rejection occurred almost 100% of the time. The way to stop rejection was high levels of steroids, which ended up killing the patient. Once Dr. Starzl found the solution to keeping patients alive (Whew! Am I glad…), other transplant centers came into being, and with it a need for regulation (1984).

All transplant candidates have been evaluated and suffer from confirmed end-stage organ failure. At that point they are placed on ‘the list.’

The list, that mysterious word every transplant patient pronounces with pathos, becomes the first step on the long road to an operating room. The list is kept in Richmond, VA at a place called the United Network of Organ Sharing (UNOS), a complex national bank of organ data, which it collects and manages. UNOS operates twenty-four/seven, continually updating and changing the list as information becomes available.

Being on the list is not a linear thing. One doesn’t get a number and wait in line. The list is actually a pool functioning according to patient data. This patient data is regularly modified to ascertain placing on the list. A score called Model for End-stage Liver Disease or MELD score is one of the many criteria used. It’s based on certain levels in a candidate’s blood test: the worse the levels, the higher the score. This information and other such as organ, blood type, tissue, size and match will determine the candidate’s position.

But wait…there’s more. UNOS, the headquarters of the list located in Richmond has tentacles. They’re called OPOs or Organ Procurement Organizations, to be precise eleven of them scattered throughout the United States. These organizations see to it that donated organs from their specific region get used at their transplant centers first. If an organ cannot be used in their region, then it goes to the next closest OPO region. Should it not be needed, the organ will be free for distribution to any other transplant centers in the country. The reality though, is that the majority of organs are used in their OPO region. Because the list is a pool, patients’ waiting time varies. All things being equal, it’s the patient with the greatest need that will be transplanted first.

Are you still with me?

The average waiting time for a heart is from three to eight months, a liver eight to fifteen months, a lung fifteen months to two years, a kidney three to five years. Currently there are between 80,000 and 100,000 people waiting for an organ. On average, eighteen people die every day waiting. 15,000 people are added to the list yearly.

There are plenty of horror stories out there with respect to organ retrieval. I should know. My husband was offered a script about steeling kidneys in India. I’m glad he didn’t make that movie. To be fair, the script was exciting: the topic lends itself to an action flick. But when I read it, the flaws were too obvious, which, for someone like me, is unacceptable.

Transplant myth A: “If you die, your organs will be taken without your consent.” You cannot take an organ from a dead person. If the heart has stopped beating and oxygenation of the body has ceased, so has oxygenation of the organs. Organs can only be retrieved from the certified brain-dead. That person has zero or very little brain activity, and therefore, is a corpse with blood flow and oxygenation of the organs. There is no recovery from brain death. Period.

More recently ‘non heart-beating organ donation,’ is experiencing resurgence. If you’re in the hospital and have a directive to become an organ donor, after your heart stops and you are proven dead (checks and balances) your organs are retrieved before they deteriorate. This practice has helped narrow the gap between donors and recipient.

Transplant myth B: “There’s a black market out there for organs.” The United States does not have an organ black market. There are no hidden, fully equipped, sterile, state-of-the-art operating rooms floating about where people are kidnapped and anesthetized to harvest their insides. Everything regarding transplants of any kind, be it living donor, tissue or organ is regulated and verifiable.

Transplant myth C: “If I say I’m a donor and I’m in the hospital they might let me die.” The person who came up with this conspiracy theory has obviously never been in a hospital. Need I elaborate more than to say that doctors, nurses, orderlies, more nurses and more doctors pass through your room at all times? The likelihood of something getting past them is as unrealistic as a mother committing suicide to give her remaining kidney to her daughter. The script definitely needs a rewrite.

But, forget the myths and the regulations. None of it would mean a damn thing if not for the most important component to organ transplants, which is…(drum roll…) organ donation. And here the scariest statistic of all: practically every American adult (98%) has heard of organ donation, however, only 30% take the trouble of becoming donors. All you healthy people out there, this is your chance for greatness. The gift of an organ is a purely altruistic and trusting act. It comes from a place of generosity and caring for your fellow human. Whether you are a living donor, or a deceased one, the decision to donate organs is by far the kindest and humblest accomplishment in your life. 

THE HOSPITAL ZAGAT

“Where should we go for dinner?” I asked my husband a few days ago. He casually picked up the Zagat, which seems to always be close by. He began flipping through the pages. This small book full of culinary treasures is our guideline to pleasing our palette. This time however, his mind and mine drifted away from our taste buds. Suddenly, we had a “Siamese” moment as I call it. I knew what he was thinking because I was thinking the same thing. Lately, I had been complaining of “bloggers block.” I couldn’t figure out what I wanted to write about. In that meeting of minds it became clear to my husband and me. “Honey,” he said, “you’ve spent more time in hospitals than restaurants.” That’s all he needed to say. What if there was a hospital Zagat? And an idea was born.

UCLA Medical Center a “delight” for the patient and their spouse who want to spend "quality time" together in the emergency room. Bring a game of Monopoly or Trivial Pursuit, or a book like War and Peace as you “savor” the five-hour wait to be seen. Allow yourself to get into a “contemplative” mood while staring at the “mesmerizing” off-white walls, and listening to the “soft” moans of those around you. Sadly, UCLA Medical Center lost a few points  when the drunken homeless guy sat down next to me. Instead of 29 I give it 25 for emergency room services and 28 for patient care (once we got to that point).

THE TURKEY BASTER

                   Thanksgiving is the beginning of the holiday season. From the moment the turkey comes out of the  oven, you find yourself thinking about things that hadn’t crossed your mind all year long. Suddenly, you’re wracking your brain trying to remember what your sister Chloe, or your aunt Rebecca pointed out to you that day at the mall. That thing you made a mental note of, and were going to buy and hold on to until the holidays came around. One whiff of pumpkin pie, cinnamon and nutmeg and you’re reminded that you were supposed to be ten pounds lighter by now!

             Thanksgiving is a joyous day, and also a “good” guilt day. Good guilt is the kind you keep to yourself, the kind that doesn’t hurt or affect anyone around you. The kind you can shed whenever you’re ready.

While most people on Thanksgiving remember aunt Rebecca and are still ten pounds heavier than they hoped to be, my mind goes to another dimension. It happens every year. I’m standing in front of big bird, eyeing the instrument in my hand, having nothing but one thought. Liver biopsy.

I’m quite familiar with the instrument; I mean the biopsy needle much more than the turkey basting syringe. I can’t count the times a doctor, with a quick slight of his hand, plunged the long, thick needle into my skin under which my liver lies. Before I knew it, the procedure was over, and the doctor had extracted a sliver of my liver.

Big bird was dinner, but I had been there too.  

On the day of the Oscars two years ago, I was all smiles. Sure, my body was swollen with fluid since my organs were only four months old. This reaction was similar to when you bang your head. The bump that forms is liquid protecting the traumatized area. I was full of fluid, protecting me from the transplants. This healthy, bodily function made me smile, but it was my husband’s nomination for an Academy Award, which was the real reason for my smiles.

A few hours before attending the event, a doctor at UCLA Medical Center stood over me, holding the “turkey baster” while I lay in the pan, I mean on the cot. As soon as the needle pierced my belly, the bottle began to fill fast. 18 liters later, I went from being a plumper to shrinking to a Foster Farm size turkey filet (I love that commercial). Lying on the cot, I turned to the three full bottles and thought, Oh Lord, that’s all I need, is to look like a dried up prune on the red carpet.

Thankfully, I looked like my usual, belly-less self. I drove home light on my feet and relieved, ready to slip into my skin-tight Oscar gown. I had left the house in the morning with a beer belly, and had returned with washboard abs. Well, not quite. Anyway, I was going to the Oscars with my youngest son and my husband, the nominee for best Foreign Film. We had a blast on the red carpet and laughed at Hugh Jackman's jokes. We didn’t win, but all three of us looked and felt like winners.

                     I’ve been telling myself not to think about liver biopsies and needles this Thanksgiving, but somehow, I have the feeling it will happen again. It has become my “good” guilt. I’ve got this, I said to myself smiling devilishly, standing in the kitchen, turkey baster in hand last year, you’re going to be the most delicious, juicy bird ever. I strategically plunged the juice-filled, five-inch long syringe into the bird, with all the precision of a surgical instrument. While I gave my turkey its biopsy, I couldn’t help but stare at the liver resting in the juices at the bottom of the pan. 

ANNIVERSARY IN NAIVETE

Today I’m two years old. I’m far from being a baby though; much to the contrary, I’m on my fourth round of “two years” anniversaries.

My first round of two years was when I was a baby. The one labeled “terrible twos,” but which I would prefer to describe as the carefree, full of wonderment, naïve years. I don’t think any of us remember much from back then.

My second “two years” was twenty-four years ago, on December 16^th, 1986. On that very day, a sniper entered a mall in Tulsa and shot Frosty the Snowman. Thankfully, Frosty only had to be bandaged before getting inflated again and resuming his post in front of the store. By then, I no longer believed in Frosty the Snowman like I did when I was two, but I was naïve enough to have two children after having a liver transplant; naïve enough to think I could live very well with a sick, second liver. I must say, that liver was good to me for fourteen years.

My third “two years” was ten years ago, on October 28^th, 2000. On that day, Lance Armstrong received the Prince of Asturias Award from the Spanish Government. I admire Lance. I feel we have a kindred spirit. We’ve both been through the ringer and have come out the other end better and stronger. I became a spin instructor at my gym. Like the previous liver, I believed my health was great. And it was for ten years. I was naïve enough to think I would never need another organ.

Today, October 29^th, 2010, I’m on my fourth “two years.” Finally, a liver and a kidney that are healthy and work well. On this day, a short but poignant segment of the news caught my attention. They grew a liver in a petri dish. It wasn’t a human liver, but nevertheless a liver. You would think that the word naïve would have disappeared from my vocabulary by now. I’m happy to report it hasn’t. I’m naïve enough to believe that one day, we won’t need any donors for organs. Patients will buy them from the organ bank where they’ll be grown.

I now realize that naïveté has nothing to do with getting older. It’s simply a wonderful opportunity to shove all else in your life aside so you can engage in something exciting and unusual.

On this, my fourth two-year anniversary, I’d like to raise my glass and salute all the naïve people of this world. May you never loose that “certain je ne sais quoi,” we call naïveté. We need it in our lives and our thoughts. For those of you who haven’t tried it yet, go ahead, jump in with both feet and let yourselves be happily surprised. 

IGNORANCE IS BLISS

        Conventional treatment versus homeopathic treatment that isn’t the question. The question is, what helps?

Meet Nestor. Nestor was from the Philippines and had a very special gift. He was a psychic surgeon. I had no idea what that meant, but I was ready and willing to try anything. All I wanted was relief from pain, lethargy and nausea, even if that meant listening to repetitive, flat music droning from some boom box. The seriously annoying monotone made me wonder if this little man, who looked suspiciously similar to an illegal alien and spoke as much as a deaf person, really was a psychic surgeon. I lay down on the table in the back room of the shack he rented in Santa Monica and waited wide-eyed.

Suddenly, he plunged his hands into my abdomen, right under the ribs. I felt an alien enter my body and wriggle around my abdomen area. Nestor pulled his hands out and with it bloody, soft tissue that looked like part of my small intestine. I let out a deep, blood-curdling cry of relief…I think. He did it several more times, and I screamed each time. He wiped clean the area he had been working on. Not a mark to be found. The effects were immediate. I got up from the table and felt as if I were floating on a cloud. I skipped to my car and sang on the drive home, high on some non-existent, amazing drug.

Of course he hadn’t opened me up, and he hadn’t extracted my small intestine, but he did do something that, to this day, I can’t explain. He took away pain, lethargy and nausea.

Meet. Valentin. Valentin used to be an officer in the Russian army. From the moment he said “priviet” (hello in Russian) I had the feeling he was barking orders at me. His talent was to repair auras gone awry. Needless to say, my aura had gone very much awry. He waved and waved frantically, all along asking me about some obscure actors I was supposed to know since my husband is in the film business. “No…no,” I said over and over again as he went down his list of starlets, all along conducting an orchestra over my torso. When he was done gesticulating, I felt no different then when I had arrived. At home though, I noticed that I didn’t have lumpy breasts anymore (50% of all women have the condition at some point in time.). Okay, not what I expected and not helpful. 

THE PAIN PRINCIPLE

A couple of days ago on the 6:30pm world news, Brian Williams brought a segment on pain and how we process it in the brain. I watched and listened with great interest because if there’s anything I know, it's pain. You see, pain and I have been intimately acquainted for more years than I care to remember, say 25 or so. I feel like an authority on the subject. In fact, the word appears over 100 times in my manuscript (soon to be a book).

In the segment, it was mentioned that by distracting a person in pain, in this case by placing him or her in a virtual environment that is both calming and pleasing, pain disappears.

As I watched this, I thought "duh...been doing that for years...of course you can think pain away. How else do you get rid of it?"

Then I caught myself: not everyone lives with pain. There are plenty of people who know nothing about it, or who felt it at some point in time, but then forgot about it. That’s the beauty of pain; when it leaves, you don’t remember what it felt like. Just ask any woman who has gone through natural childbirth.

Back to the segment. Distract the person with a virtual surrounding and voila! No pain. What about those of us who don't have a million-dollar machine that covers our eyes and creates a soothing environment and pumps music into our ears for us to enjoy while pain does its thing? Sure, we can, and do resort to pills. But what about those of us who can't take pain pills? (me!)

It takes practice to battle pain and render it "impotent". I’ve had lots of it, with both acute and chronic pain. Acute pain, the sharp, sudden bolt of lightening pain isn't what we make it out to be. Pain is there, but shock is what intensifies it. Being caught off guard makes pain peek. We shout, "Ouch!" or "Damn!" An outburst, in response to a burst of pain. Just before you bump your shin or slam your finger in the car door, your body’s at the lowest point of expectancy; it’s at rest. In the nano second the blow strikes, every nerve in you body is jolted awake. The contrast between your body in a slumber and the blow is where pain lies.

In the chronic pain department, that is pain, which takes a long time to go away, there are two categories: constant and fluctuating pain.

Constant pain has the advantage of being what it is: a steady, continuous pain neither heightening in intensity, nor diminishing. I say “advantage” because it is easier to manage than its counterpart, fluctuating pain. I think of the many women who endure 12-inch stiletto heels for hours on end. They're willing and able to suffer a whole evening because they’re focused on the party, on the cute guy, on the conversation, and more importantly, on how sexy they look in those pumps.

My constant pain emanated from my spleen. I felt a dull, tightening sensation that did not let up. It ached for more than a year (during my dying phase, before transplant #2). I learned to think it away much like those women in stilettos.

Fluctuating pain means that acute and chronic occur at the same time.

For months or even years I felt some sort of pain: a knife twisting in my side, a twinge close to my heart, a stake pounding me below the chest. I was always in pain. I had my ways of handling it. My cells were conditioned to mobilize the motherfucker. They rallied around sharp pain and kicked its ass.

Meanwhile, my spleen ached non-stop. The million-dollar machine would have come in handy. Short of having that, the mind is a powerful tool. Through meditation, visualization and resolve you can create your own virtual world, your own safe haven from constant pain. How is this done? Practice. Not anything I hope you acquire.

The pain principle is the power of the mind. In order to keep pain in check, you turn your thoughts inward, engaging your senses to take you somewhere wonderful, deep in your soul. Eventually, a pattern will emerge and you’ll tame pain. If that doesn’t work, get out of bed, get dressed and go see a movie, go see your friends, go to the gym. I guarantee two hours of relief.

THE BEAUTY OF REPLACEMENT PARTS

REPLACEMENT PARTS

Recently I heard that a replaced knee only lasts fifteen years. I am in my tenth year with one of my knee replacements (the other is in it's eight year) and can't imagine that it will fail me at some point. I spin three times a week. I've been doing this since before receiving the new parts and have only intensified m y workouts after getting the new parts. Yes, I said parts since I have two knee replacement and two hip replacements. With all my fairly "new" parts, I have taken up road biking as well.

The beauty of having these metal instead of hips and knees, is that osteoarthritis has become an afterthought. I'd like to say that it has completely disappeared but unfortunately I can't. Why? Because, just like a used car, when you fix one thing, another goes haywire. My hips and knees might be fixed, but my ankles, elbows and wrists...well no comment.

Still, I’m thankful to live at a time when replacing bad parts with new ones is feasible. Forget about the hips and knees, I'm on my 4th liver. Yes, I have replaced that too...3 times. End of October it will be two years since the new replacement part (the newest liver and kidney...my first). Ugh! I'm exhausted just thinking about it.

If anyone has been wondering what life is like after replacement parts, well from personal experience I can say pretty damn good.