Why People Need to Think and Act Like Transplant Recipients Now

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EnteringTransplant5-21-16

How do people who are transplant recipients have to live all the time? Simply put — very carefully. I am a liver transplant recipient, almost four years ago, that became my new job title. This is how I live all the time.

All organ recipients have to avoid certain food and teas, and not take any antioxidants. I have to keep my immune system close to zero to keep my new, lifesaving organ. Received from someone who died and was an organ donor. Their family agreed to it. Some recipients can receive some organs (not heart) from a living donor. It is a wonderful gift, so we all want to take good care of it and live in all the prescribed ways.

We must scrub our hands with soap and water all the time, and not touch our faces. We should not take jobs where we have unsafe contact with random strangers. Like as a retail cashier. We have to stay away from people we know or suspect have a cold (that’s a coronavirus, too, remember?). We must shower daily, and keep our homes clean.

It’s much like right now for ALL of us with Covid-19 ravaging the world and especially the United States. We transplant recipients but now everyone, must be extra careful to do all these things, that transplant recipients do 24/7/365.

I do socially distancing all the time — not the required six feet now, but I’m always aware of who is around me. I ride public transit (or used to). I wear a cloth mask just walking in the neighborhood. Two or three weeks ago, when I still went into a store infrequently, I would wear my fancy N95 mask. One that blocks both viruses and bacteria. I bought it last fall at the Mayo Clinic Gift Shop and it cost 30 bucks, very occlusive.

I mean business about not getting sick.

I have little to no immune system, and take medications to achieve that, so I can keep my donated, well-loved liver. Without the meds my immune system would grow strong and reject that precious gift. I’m trying to live. So I do all the things I do with a much, much lower immune response, and keep this liver.

I used the mask last November because I don’t get my flu vaccine till mid-November to make it last through February. I wore it on the bus to go downtown, took it off, then practiced all the methods I described above — social distancing, not touching my face. I could touch things as long as I remembered not to touch my face. You need to do the very same thing now. All the time.

I was dumb and desperate the second year post-transplant — you run out of money after being sick for 11 years waiting for a transplant. (Yes, that long, and very sick by the time I got The Call.) I took a retail job. Yes, cashier. I quit after six weeks, but too late.

After the retail disaster I had three episodes of fever and feeling sick, called my transplant center at Cleveland Clinic (they’re available to me 24/7/365) and a nurse told me to go to an ER. Not urgent care center. Hospital. And three times I had the virus test — swab in my nose or throat, and each time had one of 26 different viruses than the flu. They gave me IV fluids, maybe something else, and sent me home after my fever came down — two of those times.

The third time the ER physician said he was putting me on sepsis watch and admitted me to the hospital. Then I got a powerful IV antibiotic, so strong that when the bag was empty, I threw up. I went home the next morning.

Sepsis is a very scary word to transplant recipients. For us it equals certain death. But honestly, anyone can die from sepsis, a powerful, overwhelming bacterial infection. That’s how a lot of Covid-19 patients are dying. Of Covid, yes. But a bad virus can overwhelm your immune system and welcome a bacterial infection, too. So, we all need to be extra careful now. Just like me.

I won’t go to the hospital if by some chance I contract any virus. Why not? Because at this point in the pandemic, I would be triaged OUT of the hospital system because I am immuno-compromised and 72 years old. I’d be way too much trouble with little chance of surviving. I don’t want to die in a hospital.

Plus, if I didn’t have coronavirus, I’d catch it there for certain. I am giving myself the least amount of chance to contract any virus.

You should also be giving yourself the lowest ever chance to contract this virus. Live my life: Socially distance IF you have to go out. Not 90% of the time or 99% of the time. One hundred percent of the time stay at least six or more feet away from other people. Wash your hands a lot — especially whenever you’ve been out. Don’t touch your face unless you have just washed your hands thoroughly. Shower daily. Keep your environment clean.

I’ve been self-quarantined for 40 days today, April 15. Since March 7, the day after the first Covid-19 case was reported in the US.

Last Tip: Whatever you do, don’t listen to our president’s instructions to “open up the country.” May 1st is unthinkable — two weeks away. Maybe August. Listen to your governor — IF — he or she has put your state in lockdown. Even then, if you still don’t feel safe in August, just pretend you are just like me and other transplant recipients and always follow these rules.

Save your life. Save others. I have a lot to live for – and so do you.

Getting Back Inside My Routines

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Daily Dispatch #2

“What interests me as a novelist is not the malevolence in man – so what else is new –
but his looniness.” — Walker Percy*

I feel especially loony with these crazy days we’re in. My days start out normal – I have a simple routine in the morning: Get up, start the coffee, pee, splash face with cold water, writing clothes, pour yum coffee, sit down in writing chair, meditate a few, then write. Till I’m done. Usually 20-25 minutes. Unless I’ve got a lot on my mind. But when I turn on my computer, all hell breaks loose.

Finally I found some advice for making a schedule. This was it:  I create my schedule for the day the night before – six things, in order (sort of), that I cross out as I do them. Till the schedule came in, though, almost three weeks in quarantine, I’ve been a mess.

Nothing is normal anymore. People are in pandemic panic and people worldwide are getting sick with Covid-19 and dying from it, lots and lots of them. The numbers are growing for many countries, especially the United States now, as the virus keeps relentlessly moving West from China.

So many normal things are being disrupted. You read and hear enough news – that’s not my job here.

Denver went into lockdown on Wednesday, so Tuesday, not knowing if it would be open after that, I walked over to a Dollar Store to buy light bulbs. The grocery stores sell crappy, expensive bulbs that burn out fast. At Dollar a nice LED light bulb costs one dollar and lasts a long time.

We have to watch out for each other now. Inside the small Dollar Store everyone was very respectful, kept their six feet of distance in the two lines to the cashiers, and even in the narrow aisles. It felt like a community of Denverites, not strangers.

I walked home. When you walk, you see things up close. That day on the side of the road I saw a dead cat with its little mouth open. That broke my heart. I thought about that cat all the way home. Was he or she someone’s precious kitty, wandering around, hit by a car that never stopped? A feral cat trying to get back to his outside shelter? I mourned that cat. Like I’m still mourning my cat, Violet, gone now nearly six months. I had been wanting to get a new kitty before this virus came along. I must wait now. Boy, I need a cat!

Today I’m walking on Cherry Creek Trail (66 miles long through Denver to a reservoir east of the city). Maybe all the way to the Mall and back (not 66 miles). Long-ish. So I can feel my looniness and see what comes up.

We can be free in lockdown, too. Have a good, safe, happy day.

*It turns out that Walker Percy became ill with tuberculosis after he had graduated from Columbia University Medical School, then spent two years in a “sanatorium” but when he attempted to return to medicine, the TB returned. And two more years, resting and healing. That’s how he became a writer.

I shared a similar fate – became a writer while I was sick for many years.
You just have to do stuff.

 

The Two Hardest Things for Me to Give Up When I Began Self-Quarantine

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Daily Dispatch #1

I decided on March 7th, Saturday, that I was beginning my self-quarantine. I had a couple of reasons I’ll tell you in a bit.

My last public act was to gather up books and DVDs due soon from the Denver Public Library, and walked the one mile to my branch library, Virginia Village. At Dahlia Street and Florida Avenue. I didn’t go inside the library, though it broke my heart not to.

I dropped the items in the outside slot. Then sat in the cool sunshine on a bench next to the front door, and thought about the books I’d just returned. And then the librarians and shelvers inside I knew so well.

IMG_1939

I wish now I’d gone inside one last time. The next week the library closed that branch and about four others. Two weeks later, the City Librarian, Michelle Jeske, a friend, decided with her team they needed to shutter all 26 locations to protect the staff and all the patrons – and all the library materials. My favorite library of all is the Central Library in downtown Denver because of its grand beauty and simplicity, displays of changing artworks.

Going to Central Library is a sacred experience for this word and book freak. I used to spend half a day in the low 800s pulling out one poetry collection after another, taking them to a desk, read. Then I returned each to their exact home.

I consider this library more sacred and more of a sanctuary than any church I’ve been inside (except maybe Ste. Eustache Cathedral with all its stained glass and pigeons freely flying in and out, set in Paris).

I also had to give up riding buses. Bus, Light Rail, commuter train. I rode short distances and all the way across the Denver Metro area to distant suburbs to visit friends and my hairdresser. But now the transit system has announced that only necessary trips (like to grocery stores, pharmacies) are allowed – but, I ask you, how will they know (I can lie easily).

Why am I isolating myself? I’m a liver transplant recipient and must take anti-rejection drugs to suppress my immune system — so it doesn’t try to reject my new, precious liver. Since May 22, 2016, I’ve been learning and doing this drill we’re all being asked to do. Old habits: Scrubbing hands with generous soap for 20-25 seconds – each time before I fix food or eat, use the bathroom, go outside to a public setting and return home. When I’m out anywhere, NEVER touching my face. Showering daily no matter what. Habits ingrained, and don’t even notice.

But now if I go to a pharmacy (inside a grocery store) to pick up prescriptions, I wear the N95 mask I bought in September 2019 (long before Covid-19) at a gift shop inside Mayo Clinic. I’d been looking at them online for a long time, but could never decide on The One. This one I could see and read all the fine print. It’s kinda special – it doesn’t come with removable filters. It will stop both viruses and bacteria from entry – a bit more than an N95.

I’ve only gotten one growly comment and several looks while shopping. Then I take what I’ve bought, and Uber home. I take out all my groceries and rub down the containers with a weak bleach solution. Even though I wore latex gloves in the store, shelvers touched everything, not to mention in the warehouse, and on. Produce (very little now) gets soaked in fresh water.

Yesterday a friend shopped for me. She offered. I felt guilty because she wasn’t wearing a mask or gloves – most people are not. But she wanted to and I’m extremely grateful to Amy. She brought me a bunch of pussy willows, too.

The advice to wear masks “if you’re infected” is totally wrong. Some people never have symptoms; most people have no idea if someone else is infected (because they don’t know either). Or could be infected and incubating the virus, still able to pass it around, and symptoms may not show for 14 days – two whole weeks. The people in Hong Kong ALL wore masks everywhere they went, and they flattened the infection curve radically. (I heard it came back anyway. Don’t mess with viruses!)

Anyway, those are my thoughts for today. Please comment and give me your tips. You “can” tell me to shut up and sit down. But I’m not gonna!

Hasta mañana, mi amigas y amigos!

Goodbye to Violet the Cat

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violet&begonias

My little baby girl kitty, Violet, is gone. I took her to be euthanized on Wednesday, October 2nd. It will forever be the worst day of my life – and of course, hers. I’ve never grieved any other being as much as I am grieving her now. The only one who comes close is my father, my precious daddy. But he had cheated death so many times, had overcome so many obstacles in his life, that it wasn’t a terrible shock. But it was terrible.

Violet though was a teenager in human years. Yes, we all know that when we sign up to love and care for a cat or a dog. I had a wonderful dog, The Grand Poohbah, for 16 years. He decided when it was time for him to go. I had little Violet for close to 16 years, but I decided when it was time. I’ll never know if it was the right time. But most of the time, it still feels so awful to be without her, that I feel it was too soon. By days, weeks, months?

She was sick with a terrible disease for cats, hyperthyroidism – something relatively simple to treat in humans, complicated in cats. When her first lab report came in, her vet had never seen such a high level, at least 7 times higher than normal. But Violet wouldn’t eat the prescribed food for it. And she was hard for even the vet to pill, and it was dangerous for me to be bitten by her because of my own crappy immune system. I found a gel I could put in her ears. It worked. Except that it caused a terrible rash in her ears. I tried every method I could to make the gel work. The rash just kept coming back faster and faster. And she was constantly scratching her ears.

I changed her food to all meat (canned tuna and canned cat food). Then I changed it to raw cat food (which I cooked). It was too expensive, so I started making her food (not at all fun but she was worth it). She loved that food for a few months. Then she stopped eating that, too. Eventually she was eating the absolute worst canned cat food on the market. Then she slowed way down on eating even that.

I had run out of options. My vet said it was time to euthanize her. I didn’t want her to suffer, last thing ever. I wanted more time, but I didn’t take it. She was showing me all the signs that things were going downhill for her, fast.

There is no happy ending. Except for this – she gave me the most love, the most fun, the most affection, the most purring I could have ever gotten – when I most needed it. And I tried to return all that she gave. She deserved it all. She came into my life just six months before I got terribly sick with liver disease. We made that journey together all the way to transplant for me. I can’t even begin to express all my love and gratitude to this little being, my life companion for all these years.

I named Violet before I even met her at the behest of my prized African violet, blooming out of season on the first anniversary of my dog’s passing and his birthday. There it was, a bunch of violets in my kitchen window, and my friend David needed a name for his new cat. Violet the Cat. I met her a few weeks later and it was love at first sight, for both of us. David brought her to me as a Christmas gift shortly after that. My rescue cat who rescued me.

VioletinBin

She had a sense of humor and ownership.

The loss of a cat is immeasurable. But so is the love left behind.

Ten Awesome Things I Did While I Was Sick for a Very Long Time

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Obelisco Buenos AiresObelisco Buenos Aires, Avenidas 9 de Julio y Corrientes / by Matias Wong

I was going to write a book about getting an organ transplant, and the road to it. But every time I’d write about it, I was plunged right back into the world of illness, fatigue, hospital admissions, time spent on a gurney in an ER, IV sticks from hell, countless endoscopic procedures.

So guess what? I’m not writing it. Except for a listicle here and there of tips I learned so I could deal with all that business to make it an eensy-weensy bit better for you – patient, friend of a patient, family caregiver. I just want to pass that along to others who are going through something like that, or who loves someone who is. This isn’t about bragging. It’s about helping YOU make a better journey through medical hell.

I’m also going to tell you I was both a great patient, and the worst patient on the planet. Because there was nothing “patient” about me. I wanted The Thing to be over. And I wanted desperately to get my life back.

Instead it went on year after year. Eleven years, almost to the day, weirdly enough – from May 2005 to May 22, 2016, day of my liver transplant.

What I’m focusing on is all the absolutely spine-tinglingly ingenious, glorious and fun stuff that I did instead. Here’s my first list (oh yeah, there’s definitely more):

  1. I went Glenwood Springs, Colorado by train in January 2007. Stayed in a nice hotel just steps away from the soothing, delicious natural hot springs pool. I spent hours, morning to nearly closing time in that warm and sometimes hot water.
  2. On the way back on the train to Denver, I met a guy in the most hilarious way ever. We became boyfriend-girlfriend for about three years, and we are still friends. I’d never been able to pull that off that extension to friendship, and was 60 years old when I met him! A miracle.
  3. I spent a month in Buenos Aires, mi ciudad de corazon, in February 2007, ostensibly to write my memoir-thesis for my master’s degree. But instead I developed three regular café deployments – breakfast, lunch and dinner where the waitstaff knew me and greeted me by name. I also went to a tango club (and danced with some amazing tangueros) one night with my girlfriend who is from BA. Very friendly, great food city. I walked a lot, tutored online for students back in Denver, and had a great time. It’s hard to have a bad time there. Oh, my Spanish got lots better on that trip, too (second trip).
  4. In 2010 I ended up in Florida with family (ugh) since I’d reached the point where I couldn’t even tutor online anymore. And lost my condo (sold, but lost a little money) in my ideal neighborhood, Washington Park.
  5. But I kept journaling daily and one morning a story – complete with characters, their full names, backstories, settings – popped up and sort of just took over. I’d never written fiction. It turned out to be a romance novel, not just a story, and I’d never read one of those before. I finished that first draft and then wrote another romance novel.
  6. I’m still working on the rewrites (and that is what I’d rather be working on – romantic conflicts, not hospital conflicts!). Those love scenes are getting really honed and hot now.
  7. I wrote 31 poems on postcards and mailed them to strangers on a list who were doing the same thing every August for eight years. In all, I wrote nearly 250 poems in those eight years. I copied those poems, so those are mine now in my computer. When I look back at them, I’m pleased that some of them are pretty good.
  8. I eventually multi-listed at Cleveland Clinic. “Multi-listing” means (if you’re not in the biz) a patient can be on an organ waitlist at one transplant center, then do some comparisons in statistics (readily available) and request to be evaluated and placed on another waitlist. I chose Cleveland Clinic, the No. 2 hospital in the nation but No. 1 in gastrointestinal diseases, which is what I had. I went through an extensive evaluation beginning January 2016, was accepted and waitlisted on April 6. At Cleveland Clinic I found the most awesome group of medical people/professionals in this country, maybe the world (they have clinics all over the world). They made my whole life better, hopeful and supported. At long last!
  9. And I received The Call to come to Cleveland on May 21, 2016, 45 days after being listed and less than six months after my first phone call to their Liver Transplant Office. They sent their private jet to pick up my best friend and whisked us off to Cleveland for surgery. Classy. (And a hottie pilot as a little extra!)
  10. Oh, last but not least. I was in graduate school when I got sick, end of the first year. I completed that humanities degree on time, May 2007, with all As. I would say “with honors” but I think someone forgot to do that part and I didn’t get that memo. But I gave myself lots of honor and kudos for having done that.

 

The End…for now. Next up will be tips for how you can improve your game.

Here’s how it felt to write this. I’m glad for the nakedness.

“The moment that you feel, just possibly, you’re walking down the street naked… Exposing too much of your heart and your mind and what exists on the inside. Showing too much of yourself — that’s the moment you may be starting to get it right.”
—Neil Gaiman

 

 

SERIES: Journey to Transplant in the U.S.

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Endoscopy monitor jair-lazaro-480021-unsplash

Photo by Jair Lázaro on Unsplash

Part #3 – Diagnosis: At Last, An Answer

 Note:  I published Parts 1 and 2 (goo.gl/ogSrN9 and goo.gl/cjNxGe) on Medium, Twitter and my own blog, danabeesvoice.wordpress.com. These are chapters for the book this will become, A Transplant Guidebook, a working title.

Diagnosis took a whole lot longer than I thought it would. Along the way were four procedures, three of them under anesthesia. Eight months passed before there was a declared diagnosis. It was defined at last in the fourth procedure.

The first procedure was done in my hepatologist’s office (Dr. Lisa Forman) with just a tranquilizer and xylocaine. She performed a liver biopsy, and I was plenty nervous about it. I knew more anatomy right then than most patients – barely. Just enough to make me worry. I knew good skills were needed for the relatively small and moving target.

The liver is almost right completely under the ribcage, and it’s the largest organ in the body. Yet between the liver and the ribcage is the right lung. You know, one of those two things that regularly expand and compress so we can breathe? There’s a tiny sliver of liver hanging below the right lung. Hence the shooter’s need to be quick with its nearly constantly moving target.

Dr. Forman had a little ultrasound machine to see where things were hanging out in my body. That gave me a tiny bit of comfort. But mostly she was very calm and seemed self-assured. She was after all a board-certified gastroenterologist before she did a hepatology fellowship.

The whole thing was done in a flash. With a gigantic, long needle that looked like a straw! I had to look, of course (I was becoming a total nerd). My friend, though, left the room – she didn’t get the tranquilizer. They already had their suspicions, and she told me the biopsy confirmed those. So far.

Next, I was referred to an endoscopist. I won’t name him, and you’ll learn later why. I’ll call him Dr. E for Endoscopist, and also for Ego. I met him briefly in his office before the procedure when he gave a brief description of what he was going to do and be looking at.

The procedure I was to have is called an Endoscopic Retrograde Cholangio-Pancreatography (ERCP). The “Cholangio” part is the main tipoff of what an endoscopist is looking at. The term refers to the bile ducts that wind all through the liver, capturing toxins, delivering them bile to destroy them, then dump them into the intestines. If all is working properly. I would eventually over 11 years of illness have 25 ERCPs, and no, that is not a record.

An ERCP provides a view, through a camera (plus some magic and high degree of skill), of the inside of the liver, and inside the bile ducts. There is full-on anesthesia (or supposed to be) then the endoscopic tube is introduced through the patient’s mouth, down through the esophagus, stomach, out through the duodenum, some complex maneuvering through complex anatomy and finally into the liver’s bile ducts. It’s all highly technical and technological. Sometimes the endoscopist goes through the pancreas at a target the size of a pencil head then into the bile ducts. There are risks, though most of them are comparatively low. At a certain early point following anesthesia, the patient is turned over onto their stomach for most of the procedure.

My first ERCP was done on my birthday, July 7, 2005, when I turned 58 years of age. My first cousin and her husband were visiting and drove me to the hospital, stayed until I was gurneyed off. I did meet with the endoscopy fellow and he asked many questions, though no medical history. (I do remember that clearly.) A nurse started an IV with just a bag of saline solution. No relaxing drugs – I remember that, too.

When I arrived at the procedure room, I was alert and by then wily and more than a little apprehensive. I had lots of questions that no one answered to my satisfaction.

Here were my questions:

  1. Does anyone here know I have a seizure disorder? (No one had asked my medical history, remember?) No clear answer from anyone.
  2. Who’s doing the anesthesia? One nurse mumbled, “I guess I am.”
  3. Are you a nurse anesthetist? No.
  4. Is an anesthesiologist coming? No.

By then, I was very, well, best word would be kerfluffled, or maybe madder than a wet hen. Pretty upset, anxious and very confused. But people were moving in on me, and also pushing the gurney I was on closer to a very large machine with a couple of computer screens on it. No one was describing anything at all to me, just ordering me around and stuffing in a mouthpiece to shield my teeth, then clamping a mask over my nose and mouth. I went under and that was it for me – for awhile.

I woke up, just barely, during the procedure and tried with one hand to get The Thing out of my mouth. I clearly recall that brief view of light and accompanying terror. Dr. E later denied that happened.

He might or might not have been there. I believe the endoscopy fellow was in charge and solo once my lights went out. Besides, grapevine in a hospital – efficient.

 

Note To Any Patient or Caregiver

If anything like this confusing scene, including the pre-procedure business without an anesthesiologist present and asking many medical questions of the patient, whether you are the patient or the caregiver, this is the time to ring the bells. Long before the patient is carted off to a procedure or surgical room.

If you’re the patient and alone, it’s perfectly fine and reasonable to get up, get dressed and leave. I regrettably stayed, but I don’t blame myself. There should be a Patient Certificate you should be required to earn by attending online or in-person classes on appropriate steps the medical team need to take prior to any anesthetized procedure. It’s a big deal. This story turned out badly, and I lost any control I ever had. But I never lost control of the situation after this first one.

 

I woke up and I was somewhere in the hospital. I was unable to speak or move even my pinky, much less my whole body to get up and leave. There were medical personnel on both sides of the gurney I was on, asking, “Dana, can you move over to the bed?” All I could do was groan. The team picked up both sides of the sheet under me and moved me to the bed. The next thing I knew, I was waking up, sort of, and knew I was in a hospital room. Alone.

I’m pretty sure I didn’t have an IV because I recall getting out of bed to use the bathroom, but not having to drag an IV pole with me. I learned that skill much later on. The point I’m making:  I had clearly been overdosed by whatever they were giving me. Underdosed first because I woke up mid-procedure. Then the whole thing lasted about three hours, instead of the usual 1-1.5 hours. So, overdosed.

When I wrote this whole scenario out recently, for the first time since it had happened 13 years ago, I had a lot of questions. The big one:  If I had been overdosed on any drug (I think it was Versed, you know, what they use to execute prisoners), why wasn’t I in ICU being closely observed? But I didn’t ask that back then. The doctors had that information, and weren’t sharing.

 

The Lesson I Learned

After I returned to my usual feisty self (for a couple of days I was a good Handmaiden), I asked for help to find an anesthesiologist myself. I wanted one because this ERCP was inconclusive, so more were to come. The anesthesiologist checked me out in the all the ways that they do (heart, lungs, allergies, other medical conditions, family medical history), and I was bulwarked for the next ERCP. Still Dr. E. But he had to behave this time. My rules.

Okay, this makes me angry even to write this. I’m going to jump right to the end of the relationship between Dr. Ego and me. The second procedure, also inconclusive. There was a third one on February 1, 2006. After that one I had a major migraine going on, just like I’d had after the second endoscopy. This time I had come armed with Imitrex. I was in the first phase room post-procedure – barely awake and not too alert.

Dr. Ego strolls in and turns on a light. I told him to turn it off. Not “please will you.” And that I had a migraine. Then he smiles at me real big and says, “We have a diagnosis. You have PSC, Primary Sclerosing Cholangitis.” Still smiling. So freaking proud of himself. Because how could he be happy for a patient who just had confirmed for her that she had a really devastating disease? I looked at him, didn’t move, and said, loudly, “Get out.” I couldn’t stand one more second of looking at his egotistical face.

The next week day I called his office, talked to his assistant and asked for an email address for him. Told her what I was doing. She wasn’t surprised, and was very nice to me.

I fired him in writing because that’s the legal way to end a relationship with a doctor. I was so done.

SERIES: Journey to Transplant in the U.S.

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violet&begonias

Violet the Cat by begonias in “our” condo, 2005

 

Part 2:  What’s Going On In This Belly of Mine?

I published the first in this series way back in June. And I fiddled around way too long with that article. Then I wrote the second one a lot faster, thought I was on a roll. Wrote the third and ran into a wall.

You know how you can discover things, like the truth, as you’re writing about something you thought you knew all about? Then find out you didn’t realize it had this giant toad sitting somewhere in the middle or the very end? Yeah, that happened while writing about my first endoscopic procedure in that third article.

I was writing everything as I remembered it, but all of a sudden I turned into the reader – not the writer. Palm to forehead – omigod, this is all about malpractice shit happening to…me.

I spent the next two months coming to grips with that realization, then trying to decide what to do about it. But especially how to write about it. I came to this conclusion: Just leave a lot of details out (who cares anyway, right?), and just go with that.

Problem: Because of what had happened, I learned a lot about how to advocate for myself in medical situations where things seem way over my head. Turns out, they’re never over anyone’s head as long as they are sentient, conscious, and they feel like something’s very wrong. So I have to include all those gnarly details.

This series will eventually be turned into a Transplant Guidebook (its working title) for people in pre-transplant settings, especially those on waitlists around the country (about 125 transplant centers in all). The transplant waitees and their caregivers need to know, really need to know, how to advocate effectively, in the worst possible conditions. They happen.

Okay, here comes Part #2 in the series.

I was getting discharged after a four-day stay from hell, and talking to a doctor about their plan for me. He and the gastro team were recommending gallbladder surgery. The results of the tests were not compelling for that – no stones but the gallbladder was “sluggish.” I decided to go along with surgery if that would prevent the level of pain I’d had. But I wanted to stay in the hospital and have the surgery right now. The doctor patiently explained that the surgery would then be open (very messy, big scar), not laparoscopic.

Then he told me the alternative to leaving: psych ward. (Huh? Was he a secret agent for the psych ward?)

This episode could have brought on the psych ward business:  One night, about three days after admission, middle of the night, I went bonkers, screaming loud as I could, and all paranoid about what my completely bedridden roommate was doing to me.

This was because of all the morphine I’d been given. Every four hours, another big dose of IV morphine, over four days (96 hours = 24 doses). Up to the psych ward “offer,” I had given my care an A+; today I’d give them C-. Starting right out Day One, being offered one Tylenol for a full-blown migraine, my usual medication Imitrex. Then the continuous morphine. Newsflash:  Morphine and almost any opiate/narcotic turns ordinary people into beasts. Not a good hospital stay. So, psych ward? Weird at best.

Finally, I agreed to see a surgeon to decide whether or not removing the sluggish gallbladder would help. I left the hospital with some friends who took me home to my 1-1/2-year-old tuxedo kitty. (Violet had mixed feelings about seeing me, because cats.)

I went to the brand-new version of University of Colorado Hospital in Aurora, not near my home, to see my would-be surgeon. The first Hot Doctor I’d ever met. Fortunately, he was a lot more than just handsome, tall, blonde and blue-eyed – he was smart, honest and had a good sense of humor. He told me there were only two chances out of three that removing my gallbladder would cure whatever was wrong with me. I answered, full-on flirt by then, “Well, two out of three isn’t bad. I’ll do it.” Dr. Robinson (the Hot Doctor deserved a name by now) laughed, agreed and we set a surgery date.

I had to arrange two rides to and from the hospital. Two men, both boyfriends of two very good girlfriends of mine. Tim took me to the hospital, went to the second floor waiting room and we said goodbye, good luck, all that. He reappeared a few minutes later with a small blonde Gund teddy bear he handed to me. He said he was worried about me having to wait alone. Now I had this plush little bear to hold onto. (Yes, I still have that bear Timbo.)

I was taken to the OR after I was pre-sedated (that was fun), and breathed myself into a mask to sleep. Mid-surgery apparently was exciting, but I was still out. I did get the results of a discovery Dr. Robinson made with his micro-camera. He looked around inside and noticed the liver didn’t look normal, so he called the Liver Team mid-surgery and asked them what they wanted him to do.

I was in a hospital with a transplant center, in fact, the hospital where the first liver transplant was performed in 1963. (Well, first successful one was four years later – the patient survived). This was just a lucky quirk of fate and because of my insurance coverage (grad school, University of Colorado, remember?).

Liver Team told him to do a liver biopsy then take blood post-op for a metabolic blood panel and other tests that check your liver status. I had turned into a liver patient mid-surgery.

Dr. Robinson explained to me about the liver variance, but I was too groggy to understand the gravity of it. Liver something and biopsy. Then someone came and took four vials of blood. Still trying to wake up, I wondered, they must do this for all surgery patients? I was puzzled but too out of it to ask or be alarmed. Then Roger, my #2 ride, came and picked me up.

I had a post-op appointment with Dr. Robinson in a week, when he told me I needed to make an appointment with a hepatologist at the hospital. He also told me some worrying news (I excel at Worry 101 all the way to post-grad): The lab had found a small tumor inside the gallbladder and could see its cellular tracks all the way to the common bile duct (connects with the liver), where they had chopped off the little green organ.

My eyes welled up with tears and I couldn’t talk, but he told me not to worry and then some other stuff I forget now. Something like, we’ll wait and see, or I can send you for more tests, that kind of stuff that’s no fun to hear. He said the pathologist named it “Carcinoid.”

Since I had no idea what that was, I pushed the big Research button. I combed the internet, talked to people I knew, and found a woman in Florida with an advanced case of it. It was a terrible, very painful, debilitating disease. Just great. I’m trying to live my life here, Body.

I’m good (and now even better) at research so I found this doctor in New Orleans who was The Doctor to talk to about carcinoid. I wrote to him via email, and he replied right away with his home phone number. What?

I called him when he said it was a good time to reach him, and he got me up to speed on this new thing. He had one of those Bayou/Orleans accents, told me about his hound dog and good BBQ. He was funny but smart and to the point. And he reassured me. But still I had to wait to see if anything developed further with the “C” word.

I called the Hepatology Clinic at UCH in early June, but I couldn’t see anyone till August. In the meantime I got an infection in my bellybutton (where they pull out the gallbladder), so went back to Dr. Robinson. (I wasn’t minding these visits so much!) He asked me about the hepatology appointment, and I told him I couldn’t get in till August. It must have been more urgent than I thought because he asked his nurse to get “Lisa” on the phone for him. Then I had an appointment with Dr. Lisa Forman in June. Hot Surgeon to the rescue again; he got me an insider’s appointment with “Lisa” in a couple weeks.

Outpatient Clinic was back at the old building on 9th Avenue and Colorado Blvd. I went to Hepatology and checked in with Gerrie and had vitals taken by Norca. I’m naming these people because I got to know them really well over the many years to come; to the point I could just walk in and they’d greet me with, “Hi, Dana, how are you?” or “Dana, you don’t look so good,” and give me the wrinkled brow of concern.

I met Dr. Forman in the exam room. She was (and is) tiny, short and slim, with almost-black very short curly hair and dark eyes that didn’t miss a beat. She also had a small pregnant belly. She did a short exam of my abdomen and asked how I was doing after the surgery. I told her about the carcinoid.

Then she turned around to the counter by the window and pushed this dark red plastic model of a liver, about six inches high and eight inches across. “This is a liver,” she began, “and this is what a normal one looks like.” It was completely smooth and shiny. Then she turned it around and the surface was full of bumps and icky to look at. “This is what your liver looks like.” I grabbed that sucker and turned it right back around to smooth and shiny. I said, “I don’t like that other side.” So adept at denial. Then I saw her wry sense of humor when she gave me the first of many smirky little smiles she was famous for. I got her drift – you can deny it all you want. But it’s not going to change.

She explained that the bumps were fibrosis, what comes before cirrhosis, and that’s why Dr. Robinson had called the Liver Team mid-surgery. He had seen that icky, bumpy surface and trouble ahead. He was smart. But dang.

Her voice stayed the same way all the way through the exam and chat, if that’s what you want to call it. She wasn’t chatty. But I knew right then she was smart and perceptive as hell. I liked and trusted her.

She referred me to someone else for a procedure to start diagnosing what liver disease I had. The new doctor was an endoscopist, and from him I learned about Endoscopic Retrograde Cholangio-Pancreatography. ERCP. I saw this new specialist (whose name I’ll never reveal in this setting – see what I wrote above in para 3) in the Gastroenterology Department for consultation. Dr. Forman also sent me to an oncology surgeon about the carcinoid business.

The search for a diagnosis had begun in earnest now.

A Journey Through Disease to Transplant in America

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Story #1

 The End

I was lying on a gurney waiting in the hallway just outside the OR, second floor, Cleveland Clinic Hospital. My very good friend, Adrienne, was still with me having just played a fight song for the elevator trip from the 10th floor down to OR and continuing with a playlist she made just for this occasion.

Here comes this tall young guy with black hair, on the skinny side, and he leans over me, but with his head sideways like mine, and introduces himself.

“Hi, I’m Dr. Hashimoto. Do you think I look old enough to be your transplant surgeon?”

“No. Sixteen isn’t old enough.”

He answered, “Well, I’m 17.”

“Then you’re in.” We both laughed and he rushed off somewhere.

That’s how I met one of the rock stars of liver transplant surgery just before we were going to spend double-digit hours together with about 14 other medical professionals while they performed magic:  They would remove my tired, very sick liver and replace it with the left lobe of a liver from an organ donor who had died many hours before. There were four surgeons, two to three anesthesiologists, scrub nurses and assistants and one perfusionist (who checked my vitals the whole time). Date:  Sunday, May 22, 2016, starting at around 10 a.m., ending 11:30 p.m.

 

The Beginning

This is the first in a series of articles about my 11-year journey through a liver disease all the way to transplant. There may be around 10 articles, maybe more, or fewer. Eventually, a book.

So far I haven’t found anyone else on Medium writing on the topic of organ transplant, so I thought I’d dive in. Telling the story is semi-to-lots of scary. But honestly, it doesn’t compare to facing death on a regular basis. Once I worked that out, starting this series seemed easy.

Writing this is also an attempt to reach out to others on transplant waitlists, or waiting to get on one, along with their caregivers. There are around 119,000 people in the U.S. who are waiting for a new organ to take the place of their failing one. Along with them are family members and friends – all people caught up in the anxiety, hope, hopelessness, being able to help, feeling helpless at the same time, and wondering what is happening. These stories are reaching out to all of you; my journey is your journey, too. The highest number of those waitlisted are waiting for a new kidney. You can go to UNOS.org and get more information about how they regulate everything related to transplant in this country. It’s an amazing organization, and fascinating how it coordinates all it does.

 

Here’s an outline to help you move through the story:

#1 – My Life Just Prior to Getting Sick

#2 – The Night I Got Big Pain

#3 – A Discovery During Gallbladder Surgery

#4 – Diagnosis: What is This Liver Disease?

#5 – The Whole Being Sick Part – many sections in #5 (the exciting parts)

Some reading tips: 

I got a brand-new life and was actually healthier post-transplant than before I got sick; a very happy ending. So you might want to think about reading this like it’s a romance novel – you know, you get a few key characters, lots of conflict and tension, and especially drama, lots of drama, very sweet parts where the characters metaphorically (in this story) kiss and make up, and then the Happily Ever After (HEA) ending. But without the sex part (you can make that up yourself). But HEA is guaranteed.

 

My Life Just Prior to Getting Sick

I was at a point in my life where I was high-functioning, highly motivated and inspired about every aspect of my life. I was 58 years old and had finally landed on a career goal. Yes, late bloomer, and making the most of it. Career goal: To teach writing and English literature to college students. I’d already started doing the teaching and tutoring, and totally loved it. And now I was busy earning a Master’s of Humanities so I’d be eligible for a full-time job as a professor at a community college anywhere in the country – or world. I took two graduate classes each semester, of course with a goal to make all As. Then I spent many hours teaching and prep for that along with hours in the writing center tutoring students face-to-face and online. I was focused and excelling in everything I was engaged in.

I lived in a condo (with a real-live mortgage) in one of the most desirable neighborhoods in Denver – Washington Park. I walked around its nearly three-mile circumference (and beautiful gardens, lakes, trees) every single day. I would get to the campus I worked and attended classes via Denver Light Rail, and walked most days to that station a mile away. The Auraria Campus in downtown Denver is large, containing three separate schools (Community College of Denver, Metropolitan State College and University of Colorado at Denver). During the day I walked another three miles at Auraria. I had three part-time jobs to support me and my cat:  Teaching two classes per semester, tutoring in the Writing Center, and contract editing for a large corporation where I had been an employee.

For fun and more exercise, I was taking African dance classes every Saturday, and went to tango classes and attended milongas late Friday nights when I could. I was a milonguera (tango dancer), and proud of it! This was my life and I loved all of it.

I had a lot of good friends and nice acquaintances that came from school and the Writing Center where I tutored writing, from African dance class and a handful from tango (though I liked the dancing much better in Buenos Aires).

I cooked most of my meals, but also ate a lot of takeout Chinese, pizza in the neighborhood and sometimes cooked for friends. I journaled every single morning, without fail, and started that in January 1992. I dreamed of being a writer but was too scared to take the full-on dive. But I had chosen my graduate degree because it allowed a Creative Project in place of a thesis, and mine was going to be my memoir. That’s where I was headed:  Teaching, tutoring and writing. With some trips to Argentina sandwiched in there.

 

The Night I Got Big Pain

Symptoms began one night during the last week of the second semester of grad school. I was busy preparing my final papers for two classes I was taking, and grading my students’ papers in two classes I was teaching. Then one night I had Big Pain all night long. All night pacing back and forth in my apartment, in the most pain I’d ever experienced. Did I call a friend or an ambulance? Oh no, in denial. And beyond that, I really didn’t know what to do. I couldn’t bend over to look in my files to look up my insurance rules, so I just recalled my card saying University of Colorado and decided that hospital would be good to go to.

By 6 a.m. I called a neighbor who worked at the same hospital I was planning to go to, asked her to drop me off at the ER. She did – literally drop me off. I walked in alone. It was slow there, I told the triage nurse when she asked that my pain level was 10, and she took me right to a cubicle. And the most uncomfortable bed in the world. I got checked over by doctors, residents (teaching hospital), cared for by nurses.

But everyone who checked me over forgot I came in with level 10 pain. I reminded a nurse and got my very first ever shot of morphine. I’d like to say it knocked me right out, but honestly it barely touched the pain.

The pain? It was in the right side of my upper abdomen, where the liver and gallbladder sit. They poked and prodded, sent me to ultrasound (where the doctor was finally called in and pronounced the liver was enlarged).

This is a side story but interesting and eerie. The ultrasound room was in the creepy basement of the old hospital. It was like sliding down into a horror movie. There were closed doors on either side of a long, long, dirty, once white, falling apart hallway. One door was marked “Liver Transplant Research.” I read that and clearly thought this: “I hope I don’t have to have a liver transplant.” Where did that come from? Well, scared already and doped out on morphine? But it rang a little bit true for me.

I was finally admitted after two full days (not the nights, though) in the ER, when I finally spiked a high fever. I stayed in the hospital four nights in the same pain I came in with. Lots of testing but no diagnosis, just questions. I was referred to a surgeon to possibly remove my gallbladder.

ArrivingAtCClinicG101floor

 

Theory of a Fake Election and Collusion

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I wrote this the other night after I got tired hearing the Rob Porter story, going round and round about the details we all know by heart now. This is what I thought:

Why doesn’t Mueller indict someone and get this stuff over with. I have a growing theory, though, about the whole Russian collusion/collision, whatever it was.

To add to this theory, helping to firm it up, today, Feb. 16, 13 Russians have now been indicted for “interference in 2016 elections.” Yet their activities extend back to 2014.

Here’s my theory – Putin really wants to wreck our government, from the inside out. That’s his big goal. He doesn’t give damn about Trump. But here comes Hillary Clinton, a formidable opponent that he clearly knows will go head to head with him and won’t take whatever he dishes out – which is a lot of harm to this country and our democracy. As Obama was willing to do, and did. But Trump is completely politically clueless in anyone’s country, so he’s Putin’s best bet to win the presidency, and get out his wrecking ball.

Putin is now laughing his ass off because he has us all running in circles with Trump running things and making this huge mess over here. So his intention in messing with our election, and they did mightily, was to make sure HILLARY did NOT get elected. He doesn’t care a whit about Trump except to know he can manipulate him from here to Timbuktu and back.

And Trump may never have intended – note, intended – to make any deals with Putin other than business stuff to make his own self richer than maybe even Putin. Maybe there never was intentional collusion with the Russians at all.

Trump is a bumbling, dealing, greedy, misogynistic fool, who is not even close to being a billionaire. And he never wanted to be president. He just wanted a new network…you know, like his buddy Roger Ailes had, like Rupert Murdoch has, like Oprah has. But in the end, Trump and his cronies did collude with the Russians. They saw a good thing and wanted to benefit from it. Their day is coming, too.

Trump ran, intending just to get himself a cool television network. But he really lost when he won the presidency. This last piece comes from the Michael Wolff book, Fire and Fury. And it sounds likely to me. This isn’t going to end well. But it is going to end.

 

Autumn in New York

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I wrote this on 4 October 2012 and re-discovered it today while looking for something else on my computer. Seems that I wrote a whole lot in 2012. I still have this very same dream of visiting New York City and going to all these places and experiencing the city in so many ways. And now I’m post-transplant, have my new liver – so why am I languishing in Denver? It’s good to have reminders of your dreams lying about waiting to be seen again.

If you’re a native New Yorker, maybe you’d like to be my tour guide. Ya think?

I’ve always heard New Yorkers talk about the beauty of New York in autumn. The light changes as the leaves change color and fall to the ground and streets. And the sky turns a particular shade of blue that is deeper and more vivid and brilliant than summer’s skies were. They feel magic, New Yorkers say.

I’d like to visit New York City then, but with a homegrown New Yorker who knows where to go and when. Maybe I’d go with Diana Hornick. Walk in Central Park. (Oh, I’d have to go there after a transplant, when I have a new liver.) Find some of those pocket parks and languish in them. Visit Rockefeller Center. Go into St. John the Divine Cathedral. Ride the elevator to the top of the Empire State Building and step outside at the top. I know I wouldn’t walk up to the edge. It’s too frightening to me. Unless they had a high cage around the edge.

I’d want to walk around Manhattan and down to Ground Zero and imagine the twin World Trade Centers there, see the tree that was planted in their memory and in memory of all the people who died there that beautiful autumn day in New York in 2001. (I’m always grateful that my brother David didn’t live to see that happen.) I’d want to walk over to Battery Park on the other side of Ground Zero and watch the tourist boats and the tugboats chug by on the Hudson River. I want to cross the Brooklyn Bridge. Several times. I like bridges.

Museums? No. Galleries? Maybe. Small shops and restaurants and cafes and diners? Yes. Oh yes. I want to meet the people of New York and talk to them and move along the sidewalks with them. I’d want to take pictures with a real camera. Of interesting architecture. Of horses in Central Park, horses with policemen on them. I’d like to talk to cops and take their pictures. And I’d like to talk to mothers and grandmothers. I’d like to visit a famous hospital and a transplant center and have someone take my picture there. I want to find some small bookstores and browse there, buy some books. I want to visit the main New York Library. I don’t know where it is. I need to find out.

Before I’d go there, I would buy a good map of the city and study it the way I studied Paris streets and landmarks and know where to go. Know where I was. I’d like to find the wildlands that Terry Tempest Williams wrote about.

—from my journal, 438 words in 20 minutes

 

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