WRITING SHORT: 21/50

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[Come summer heat, much of my blogging momentum melts away. Hence an experiment until Labor Day: fifty minimalist posts about whatever.]

“If” has only two letters, but it’s a big word.

If I hadn’t been such a neatnik that I arose from my hospital bed in September 1969, three days after giving birth by Caesarean section, to tug at the heavy footboard because the bed wasn’t perfectly parallel to the wall — the inner stitches wouldn’t have opened, I wouldn’t have sustained undetected internal bleeding for the next four days, they wouldn’t have given me two units of blood after cleaning out the hemorrhage, blood contaminated with Hepatitis C, which no one had yet identified or been able to screen for, and I wouldn’t have ever after tired more easily and earlier in the day than most other people. Since 2004, when an alert nurse practitioner picked up on slightly elevated liver function numbers and tested me for Hep C, I wouldn’t also have had to abstain from drinking, take not even a sip, or use vanilla extract without alcohol in it – for the rest of my life.

Could I wish one of those outcomes away, it would be the fatigue. I was never a big drinker, which may be why I’m still here at 84, with a liver that goes on doing an okay job even though it’s compromised. So I don’t miss the occasional glass of wine very much. I do wish I’d had the energy to use more of my life, the part not given over to raising children and earning a living, in productive and interesting ways.

Two “specialty” drugs just out are said to clear the virus in 90% of people with my Hep C genotype. One costs $84,000 for a twelve-week treatment and must be used with other drugs. The other works alone but costs $94,500 – about the cost of the first one plus the additional drugs it requires. Both have side effects difficult for the old to tolerate. I understand many insurance companies and Medicaid are restricting these drugs to the very sickest patients because of the cost. If I were younger, sicker, richer (three more “if”s), a doctor might write a prescription. I’m not any of those things.

All I did was straighten a bed. Who can predict what little thing we do will lead to what result? Life is unknowable, and we’re lucky to be here at all.

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12 thoughts on “WRITING SHORT: 21/50

    • I don’t know about “shocking,” Julie. (What’s shocking, at least for those of us not yet on a single-payer health insurance system, is the price of new cutting edge drugs and the focus of the pharmaceutical and insurance industries on ensuring healthy profits rather than healthy people. However, that’s a topic for another day, and certainly not for a “writing short” piece.) And yes, almost everyone can in retrospect identify some little innocuous thing they did which led to completely unforeseen consequences. A happier one might be this: When Bill decided to “un-retire” and returned to Boston after a year in Europe, he developed relatively minor intestinal difficulties. Rather than toughing it out, he consulted a doctor. Here comes the “if”: If he had not gone to see Dr. Stokel, he would not have come upon that month’s copy of Boston Magazine in the doctor’s waiting room, would not have seen my one-time ad in its Personals column, would not have called me up, and we would never have met. He used to say he found me in Dr. Stokel’s office.

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    • You have a compassionate heart, Christine, but I fear in this instance your sympathy is somewhat misplaced. I thought I was writing about how life is unknowable, not about how my “story” is sad. Roughly four million people in the United States are walking around with the Hep C virus in their blood, mostly acquired from hospital blood transfusions prior to 1992, when screening procedures were at last able to detect the virus, which itself wasn’t identified until 1989. Many of them don’t know they have it. I didn’t know for thirty-five years. All I knew was that unlike my friends and acquaintances I could never burn my candle at both ends, and that I got drunk on one glass of anything. That’s hardly “suffering.”

      Indeed, I’m one of the lucky ones. Hep C can destroy a liver in twenty years by turning all of it into fibrotic tissue. Fortunately for some of us, including me, the liver is also capable of generating new liver cells, so that if the rate of generation matches or outpaces the rate of fibrosis you can stay relatively healthy. That requires complete abstention, because alcohol is not only hard for a compromised liver to handle but it’s a medium in which the virus flourishes and replicates itself. As for the new drugs, for people like me whose livers continue to function, they may be a mixed blessing, apart from their mind-boggling price, considering the nausea, fatigue, diarrhea, loss of appetite, irritability and other side effects they induce. Even if they were within financial reach, I’d have to be really sick, which I’m not, to do a risk/benefit analysis and decide that in my case they were worthwhile. But thank you anyway for your very kind response.

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      • Nina, overall sadness for Hep C sufferers. I’ve seen my share as an NP, and heard their stories! Probably put myself in the picture as a hovering bedside nurse. Patient, C-section, continual post-op instructions, 15 minute watch, and most of all the questions, Is there anything you need right now? Are you comfortable? And I would notice little things like bed alignment, all things within reach, etc! I went right back to my early nursing days! Know you’ve made adjustments along the way, and are fairly healthy today! That’s the good news! Stay as well as you can. ☺ Christine

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  1. The cost of new wonderful (?) drugs that could help many makes me crazy but like you said, that whining is for another day. I love the story about Bill finding you in an ad in the doctor’s office. My husband and I worked for the same company (but not department) 40 years ago. He dated one of my besties for a short time. We both married, then divorced. I had moved away and then moved back. By happenstance, he ran into an old friend of mine who knew I had just moved back to town. On a whim he contacted me. Had he not ran into that friend, there maybe a different story to tell. I am sorry about your Hep C. A friend of mine has it and he doesn’t know exactly how he contracted it. I haven’t seen him in years but he’s in his mid-70s. I’ve wondered if he would be a good candidate for the drug.

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    • If your friend has lasted this long with the virus, he’s probably not among the sicker sick. My guess would be that given his age he therefore might not be such a good candidate, but he should certainly ask his gastroenterologist about them.

      I do like the ships-that-passed-in-the-night aspect of your story about you and your husband. Before we met, Bill and I each had a Friday night dinner on the roof of the same apartment house in Tel Aviv, me in 1993 and he in 1994. I knew the wife, he knew the husband. He also rented a room for three months from the oldest brother of the man who now lives with one of my good friends, but he rented it before I had met him.

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    • Thanks, Hilary. But I do think “luck” is in part how you look at it. Although I didn’t know for thirty-five years that I had Hep C, I did live a physiologically temperate life during those years, for other reasons: almost never drank, gave up smoking for good four months before that baby was born, couldn’t afford to eat anything but plain home-cooked foods, took extra vitamins, did not use Tylenol or Nsaids — all of which was good for sustaining a liver while it’s under attack. So maybe I was lucky in my way of living; I am way way off the bell curve for serious cirrhosis, and keeping fingers crossed I stay that way. As the gastroenterologist at Mass General said after a second annual biopsy in 2005: “I don’t know what you’re doing, but keep doing it. It looks like you’re going to die with the virus, but not because of it.” There are so many people walking around with chronic conditions and dealing with them! I can’t take any particular credit here.

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