An ending and a beginning

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When I met with Dr. Koji Hashimoto and Tracey Reynolds, RN, my transplant coordinator, last week in Cleveland, I had a list of 20 questions for him to answer. He said, “Wow,” and then wow again when he saw it was three pages long. I’m curious…

But he took on almost every question, and the three of us chatted for about an hour. In an exam room, out of the hustle and bustle of the clinic. The first question (I’m not going over all of them) was about how many surgeons, who was the anesthesiologist, how many nurses and assistants.

There were a total of 13 to 14 people in the OR at all times. There were two staff surgeons – Dr. Hashimoto was number one and Dr. Masato Fujiki was second in command. There were also two surgeon fellows (I believe – no residents, I know that). Two or three anesthesiologists, several scrub nurses and assistants and a perfusionist.

A perfusionist is better known for their role in cardiac surgery for running the heart-lung machine when the patient is without a heart. That person monitors blood pressure, heart rate, breathing and all related matters. There was a period of time when I had no liver.

I was amazed at the number of people there for the whole ten-hour procedure.

I asked who dictated the operative report and Dr. Hashimoto grinned and said, “I did! Do you want a copy?” Wow, I hit the jackpot. Of course I did!

Other items of interest –

  • There were no pictures of the old liver (right lobe was atrophied) or the left lobe of the new liver I received.
  • Dr. H. made the first incision, on the left side of my abdomen extending up to the midline and then down on the right to just above my waistline (I don’t think surgeons call it the “waistline,” just sayin’).
  • The first incision took place at 2:42 pm on 5/22/16, and was closed at 11:13 pm, 5/22/16 – nine-and-a-half hours. I went up to the OR around 11 a.m. so there was lots of prep.

There were two paragraphs in the report that made me weep. When I read “We mobilized the liver,” I knew what was coming. And four short sentences, one dissection and five transections of blood vessels later came this – “…to complete recipient total hepatectomy.” My now-disconnected old liver was then lifted it out of my body. End of that journey.

Then there was some merging of hepatic veins between donor and recipient to “create a venous cuff for anastomosis,” and then this next paragraph:

“We brought the new liver in.” I stopped there for a long time. I’m pretty sure Tracey was in the OR, too, because she told me how they hooked it up to me and it “got all pretty and pink.” Dr. Hashimoto wrote, however, “We reperfused the liver without difficulty.” Same as pretty and pink!

At the end of my questions, I had written a favorite quote of mine from “Four Quartets” by T.S. Eliot, Little Gidding V:

“What we call the beginning is often the end
And to make an end is to make a beginning.”

 I’ve carried that thought around in my head since I read “Four Quartets” in 2006, when I was first diagnosed with liver disease. What was the end? What was the beginning? I believe there were many of each. I know this surgical ending and beginning marks a brand-new life for me. I am beginning.

I stumble. I get lost and confused. But I have more energy, more determination, more stamina to get up and move and even sprint sometimes. And I’m not weighed down by illness anymore.

Getting to that point on May 22nd, 2016, was my hero’s journey. I made it. I’ve returned home, changed. I still have challenges and I welcome every one of them. Everyone has a chance to be their own hero in their life’s journey. I’m not sure you know you’re in it till you reach home.

tellhashimotowhatyoureallythink

This is Dr. Hashimoto’s idea of a great photo op! Yes, post-op in ICU, pissed off because I was still intubated – and drugged out of my mind! He carries it around in his phone and shows it to people. Here’s gratitude for your 10 hours of intensity, and 2,000+ other transplants. Yeah, I’m badass.

Vision

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I don’t have a single idea for a blog post which is due today (Thursday). Not one. I’m filled with anxiety about my eyes and see the ophthalmologist next Wednesday morning in Cleveland. She’s going to measure my ocular pressure again and who knows what else. Then give me the lowdown. What happens next, prognosis, maybe surgery to slow it down, all that kind of stuff.

Thinking about vision a lot since I saw Dr. Singh a month ago and she gave me these two words: severe glaucoma. I think of others who have it, who had it. I had a great Aunt Wixie Parker who was Head Librarian at Chapel Hill main library. She lost her eyesight to the “thief of sight,” and I understand she was pretty pissed off about it. My father had it, too. He had peripheral vision.

Jorge Luis Borges, poet and novelist from Buenos Aires, probably lost his sight to glaucoma at age 55. He continued as a librarian at the Naciónal Biblioteca in his hometown. He also had a butler and a cat and a nice house he owned in the city.

Bono has had glaucoma for about 20 years. I like the glasses he wears and want some like them. The light hurts my eyes a lot and enough exposure to it makes me very tired.

Whoopi Goldberg has glaucoma also. I heard she smokes marijuana to keep the ocular pressure down in her eyes. But I’ve read that you’d have to be pretty stoned all the time for it to really work. So I’m not sure if that’s true about Whoopi.

I take two different eyedrops daily now. The new one I got last month from Dr. Singh I take twice a day, 12 hours apart. My pressure in my right eye last month was 22, pretty high. Just 16 in the left eye.

Here’s the twist. I took a ton of prednisone in order to keep my new liver. A whole lot. That is probably the reason my eyes got so much worse than where they were. What are you going to do? I wanted that liver. Bad. It wasn’t my idea to take the prednisone, by the way – but you probably know that. Sometimes shit happens.

I just want to ask a seemingly unrelated question. Why doesn’t American health insurance cover vision, hearing and our dental health? All three matter a lot to a person’s overall health. And all three are expensive to care for.

 

 

Changing Daily Habits: On Going From Illness to Health

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You wouldn’t think it would be hard to change your daily habits once you got healthy after being sick for a long time, right? I complained for a lotta years about not being able to do so many things, many of them that had just been habits of daily living; I was sick and very fatigued all the time. Eleven years worth of fatigue, and messing up what used to be some pretty great, regular habits. I was pretty excited to get back to my normal self.

I’ve been reading about habits and how they are formed, changed, and messed up in this book called The Power of Habit by Charles Duhigg. It’s a popular book and it’s well-written, based on scientific studies of the brain, groups, teams, individuals, animals; people like good habits, or at least to think about them. I like good habits, but I recently discovered, maybe a couple of months ago, that I’ve got some pretty crummy habits. Not just little ones or a very few. A lot of them and they’re major habits, too.

One of the discoveries the scientists made about habits is that they are based on three pieces of information: the cue, the action, and the reward. Yeah, they did studies on monkeys and all that. Then on people, too, especially in trying to help them change an annoying habit – like smoking or nail-biting or drinking excess alcohol.

I do not bite my nails or smoke cigarettes or drink any alcohol. But now I do procrastinate and I just sit when I think of something I want to do. When I was sick, doing a whole bunch of stuff (yes, even writing) made me very tired because I was always baseline tired. My reward for no activity was not feeling so tired, so I felt rested. I was not entirely satisfied with that, though. In fact, I was pretty pissed off about it. But the habit is still with me even though I would rather feel satisfied that I did the activity. And have a sense of completion and competence. In fact, that was exactly what that “want to do something” cue looked like before I got sick. My reward was that deep sense of satisfaction of completion and competency and sometimes even excellence.

Once I had that awareness that something was really amiss, I told a good friend about it. She had also experienced a very long bout of chronic illness and the lights came on for her, too, when I told her about this thing. Now at least I have someone to talk to about it. It is hard to develop a habit and to change a bad one. It takes, in the end, something they’ve identified as belief. It can be belief in God but it doesn’t have to be anyone or anything religious. You can believe in your team, or the group you belong to (even my small group of two), or simply that “everything is going to work out.” Yes, there is the practice of the habit, but they kept finding alcoholics falling off the wagon when something really awful happened in their lives – and they would revert to drinking again. In other words, they had first stopped the drinking without belief in anything, so they weren’t well-grounded when something catastrophic happened.

I’m trying to make it easy to get the good habit back. And believe everything will work out. But some days when I look around at the end of the day and I feel not enough has been done (as in EVERYTHING), I feel pretty disappointed in myself. Then I listen to music or read for awhile or do some writing. I watch movies, too. And say out loud, “Everything is going to work out, Dana, so just chill.”

Why I Want to Stay in Denver • Why I Want to Move to Cleveland

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I’m a bit torn right now between staying and moving. What I am doing and the way I’m leaning depends on who I’m talking to or walking with or what activity I’m involved in at the moment.
When I have to go out into the 110% bright sunshine in Denver, I feel like moving. It’s exhausting now with the condition my eyes are in. Even sitting indoors with only filtered light coming in, I’m squinting. Then I think of that statement – “Cleveland is where all the clouds went to die” – told me by my oncologist. And I think, hm, Cleveland sounds really good right now.

    • When I see the gold aspen leaves lying on still green grass and still blossoming flowers of both summer and fall, I want to stay in Denver. Forever.
    • When I look west and see the snow-covered peaks, especially Mt. Evans standing at 14,000+ feet, I most definitely want to stay in Denver and anywhere in Colorado. The beauty is overwhelming, all year long. It is – and this is one of my favorite words – pulchritudinous here, almost to the point of being ridiculous.
    • When I think of all the great medical treatment I have received at Cleveland Clinic and will continue to need (eye surgery will be next to slow down the progression of glaucoma), I want to move to Cleveland and live in Cleveland Heights or Shaker Heights, both great neighborhoods. No more traveling twixt Denver and Cleveland – no packing, shuffling to and fro airports, paying airfares, Uber and Lyft fares. Find a pet-friendly place, and Violet and I sell or just get rid of all our stuff (except essentials like treats and favorite socks), then pack once and be done with it.
    • But, and this is the BIG BUT, when I think of all my friends here, favorite pharmacists, favorite waitress and my favorite Thai restaurant, my hairdresser Roger (omigod, Roger!), my vet (not Monica!), did I mention friends?, favorite hamburger place (Larkburger), favorite Starbucks (the big one in REI at the confluence of Cherry Creek and the South Platte River where you can watch kayakers paddle upstream into the rapids, endlessly), my favorite park in the whole world Washington Park, and did I mention friends! When I think of all those people, places and things, I’m not sure I can leave Denver. Ever. It has been home since May 1985. 31 years.

Possible Solution: Make a whole lot more money, rent an apartment in Cleveland, too, and fly back and forth whenever. I would write real hard and fast and well to get to that solution. I am also open to any other ideas or solutions … or suggestions of potential benefactors!!!

“I believe that the very purpose of our life is to seek happiness. That is clear. Whether one believes in religion or not, whether one believes in this religion or that religion, we all are seeking something better in life. So, I think, the very motion of our life is towards happiness…”
—His Holiness, Tenzin Gyatso, the 14th Dalai Lama

heinensceiling1

Ceiling at Heinen’s Grocery Store, Downtown Cleveland

To My Forever Friend, Josh Halberg

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When I started this blog, it was devoted to writing about chronic illness – mine and others. I think I want to expand that now that I have a new liver, and I’m officially a transplantee. So now I write about that.

Every transplantee believes that their new organ will last another 25 years. No one says that, but in their own minds they believe it. Otherwise, what’s the point? Especially the young ones believe that. I think. I don’t know, because I was 68 years old when I got my new liver. But I was thinking 10, maybe 15 years. Yeah, that’d be good. A younger person might go for the 25 or even more.

I don’t know how old Josh Halberg was when he got his first transplanted liver, or even his second one. I know he was suddenly very ill when he was 22 years old, his parents took him to a nearby hospital, they discovered a large tumor on his liver and said he had two weeks to live. Two weeks! And he was 22. But he didn’t die, and he ended up at University of Colorado Hospital in their transplant center soon after. He received a new liver within a fairly short time after that. But that still could have been a few years; the waitlist there is long. I am positively certain, though we never talked about it, that he was thinking along the lines of 25 years, maybe even longer. Then the PSC recurred. He had the same liver disease I did. My friend Adrienne Baker, who also had what became a chronic illness trying to kill her, called her disease “craptastic.” I liked that word, seemed perfectly descriptive, so I called PSC craptastic as well. It is. It’s cruel and it does really mean things to people’s lives who have it. You’ve heard that litany from me, so I’ll spare you. Josh had what most other PSC patients had along with it – an intestinal bowel disorder, and his was ulcerative colitis. Really, really craptastic.

Josh didn’t complain a lot, though. He didn’t used the words I did to describe his digestive system disorders. He was smart that way. But sometimes he confessed to me that he felt like his faith was pretty small and he limped through those times. I despaired in the face of the immensity of his faith, and that’s how we talked about it. I think he was trying to make me feel better and bigger about myself. It worked, and my faith would grow every time I talked to him. Just a little, but it grew.

He finally got another liver in August 2014. I remember seeing the announcement on Facebook. He was at work at Rocky Mountain Urgent Care Center, where he worked hard as an EMT, taking care of other people with fairly minor things going on. Another staffer, a good friend of his, snapped his picture right after he’d heard the news and before he left for home and then the hospital. He was a little pale and grey in the face, but he had a huge smile on his face. He was happy and everyone around him, everyone who knew him was thrilled out of their minds for him.

I’m certain, absolutely certain he thought, wow, another twenty years or so of life without being sick. But it was two years and one month. Is that fair? Hell no. Nothing at all fair about it. Did he live those years like he had a whole bunch more years out in front of him? Hell no, he didn’t. He traveled all over the world – sometimes with his parents, but now most of the time by himself. He went to exotic countries, remote countries, really fun places like Puerto Rico, then out to southern California where he was born. He always mentioned going to an In’n’Out and what burger he ordered; he loved that place. He had to be gluten-free all the time, but he managed to eat everything he ever wanted. And would try some of the most disgusting foods on the planet. On a very recent trip to China, he selected a really creepy-scaly-looking scorpion or lizard (photo on Facebook), thought he’d eat a leg or something small and said it turned out to be a thick yellow crunchy goo. I’ll never ever forget that description. Ewwwww, I told him on Facebook.

After I learned of Josh’s passing this past Friday morning, September 30, 2016, I fell into a tailspin. Eventually I thought of that first sentence in the second paragraph I wrote about thinking, we transplantees, we had 25 years on our new livers. Wrong. We all, all of us humans live on borrowed time. And some do a better job of it than others. Josh is a paragon of how to live no matter what your odds are. He also traveled a lot after his first transplant and after recurrence of PSC, with his wonderful parents, Todd and Candie Halberg, all over the world. Constantly, it seemed. They were grand adventures. Josh lived large. And in love. I hope that kind of living for all transplantees, for all my friends and family, and for myself.

I learned a lot from Joshie, my friend. And he changed, forever, my perception of life and death and illness and how to best live a human life. Thank you, Josh Halberg. You will remain in my heart forever, whispering, urging, inspiring.

“To me, poetry is somebody standing up, so to speak, and saying, with as little
concealment as possible, what it is for him or her to be on earth at this moment.”
—Galway Kinnell

Why I Love Happily Ever After Endings Now

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I was sick from 2005 to 2016, beginning and ending in the month of May. I got sick when I was just finishing my first of three years of grad school in humanities. I focused on 20th century literature, and that meant world lit, not just English or American or any “old” stuff. I liked what we read but we read some really heavy duty literature. No happy endings. I can’t remember a single one in all the novels and poetry I read. In fact, one was so demanding emotionally that I was starting to have panic attacks as I read about the torture. I had to ask my professor if I could skip some of those parts. She said, fine with her. I read a ton of those books, wrote about them all and was done with the degree and that reading in May 2007 (with all As, thank you very much).
I did continue for awhile on that track of reading because I really liked my prof, thought I was enlightening myself and all that. But then as time dragged on and I was getting sicker and spending more hospital time and trying to read there, I got real tired of the Big Literature and not even feeling enlightened – or caring. I was re-reading Anna Karenina, got pretty far in (it was a new translation and a fabulous read this time), then I suddenly remembered the horrible, tragic ending, and marked the page and shelved it. Like maybe forever. Then I re-read a Jane Austen novel and read a couple others new to me, and very little happiness happened for very many characters between page one and The End. Tried Margaret Atwood – no, no, no! I read The Hobbit and enjoyed that but couldn’t go further with Tolkien, way too dark and really scary – and what exactly was a happy ending in those books and movies anyway? I did read all of the Harry Potter books one summer – thank you, J.K. Rowling. They were awesome and fun, a bit scary but I knew Harry and Hermione would be fine, no matter what Voldemort did (well, sort of).
But then I ran into some romantic characters in my own journal one morning, and they wouldn’t leave me alone. So I wrote that first novel. Then I wrote a second one. And I read a WHOLE LOT of romance novels and found out a lot of women (secretly) read them, too. I discovered Happily Ever After existed in romance novels and I fell in love with the concept and those endings (and the in-betweens – fuzzy warmness).
Now it seems I’m addicted to them. Reading them makes me happy and I like that state of mind – “It’s all going to work out, Dana.” Now I’m planning on writing a series of romance novels (that’s what romance authors do) and I can hardly wait to start. I read a lot of really good romance authors who give good advice – Diana Gabaldon, Outlander series (who doesn’t like Jamie and Claire?), Nalini Singh, a New Zealander who was a practicing attorney in Auckland who dropped out of law to write romance (some paranormal romance, too), Kristen Ashley who wrote a series of eight books based in Denver about Rock Chicks. I tell you, it gets to be a lot of fun! And I spend most of my days smiling as I’m both reading and writing.
I will write my transplant guidebook and perhaps go on the road with that, but romance reading and writing is now home to me. Yay for happy endings! I hope I get all A-plusses and make a lot of money doing it!

Health to Spend

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“Use your health, even to the point of wearing it out. That is what it is for.
Spend all you have before you die; do not outlive yourself.”

—George Bernard Shaw

 I’ve read that before, several times. But today when I read it, I thought, that’s what I’ve been holding back on. But why? I’ve been wanting my health back for more than a decade now. During that time it lurched away from me in fits and starts till little remained. Now it really is back. In fact, sometimes I don’t recognize it because it still seems like a stranger. I am strange to myself, so I’m trying to reacquaint myself to my new self. I go walk now and I think I’m just strolling, not pushing for speed or distance. But when I return home, I look at my pedometer and I’ve covered more than 2 miles in just a little over 30 minutes. I don’t get that. I’m looking forward to the day when I expect that and a lot more. When I was sick, I thought I was always walking fast but could never walk a mile in 15 minutes. Never. So next week I’m shooting for 2.5 miles a day because, well, taking Mr. Shaw’s advice, I might as well wear out my health, spend it all. The week after that, 3 miles.

Today, I’m shooting for a zumba class downtown on the Auraria Campus at 5:15 to 6:15 pm taught by a friend of mine who used to teach the African dance class I attended for eight years. I’m a little nervous. But this time, today, I’m packin’, I’m carryin’ a big gun full of health. I’m going out to shoot it out with life. Open carry in Denver today.

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