Posts Tagged ‘HCV’

Happy 58th birthday! Uh… hold on… better make that “85th”

Friday, July 10th, 2009

There has got to be a maximum number of diseases and disasters, conditions and catastrophes that one human body can handle before it just gives up and dives for the worms.

Surely two life-killing viruses, cancer, a liver transplant and all their attending “issues” is enough for one existence. You think?

Guess not.

This past month I’ve entered the brave new world of autoimmune disease. A couple of choices present themselves: one is called dermatomyositis, which is tthe operative definition at the moment, and it is NOT your friend. If you must read up, here’s a link, but don’t go there if you’re the least bit susceptible to internet-based too-much-medical-info-itis. My other option is graft versus host disease – GVHD in the jargon. This happens when a bit of the donor’s immune system gets into the recipient’s during transplant, and apparently requires (in non-marrow transplants, anyway) the recipient to have a weak immune system. Congrats, me! I win again!

The next doc who says to me, “Oh, but the odds are so small that such a thing will happen!” gets taken down. (more…)

Three Scenes from a surgery

Thursday, January 8th, 2009

I’m being silly. No, that’s too kind: I’m being stupid. I desperately want to write, want to update this blog and take it to new places because I’m sick and tired of thinking – and writing – about being sick and tired (and maybe I don’t have to for a while!) and I want to work on my plays again and write the essays kicking around my brain and I’ve got this idea for a novel and…

But I don’t.

What I have been doing is everything I can to avoid writing. Photographing. Having an operation (again). Reading. Walking the dog. Recovering from said operation. And… uh… did I say photographing? It’s all just surgery-excused writer’s block.

Oh, my new photography obsession is a fabulous mania. I’m having a blast learning all manner of photo techniques, how to visualize the shot, taking classes and reading books on the subject. And of course snapping pics, hundreds, anywhere and everything, to the bored distraction of my friends, family, and dog. Somehow all the trauma and medications of the last three years left the visual parts of my brain functioning better – certainly more willingly – than the language parts. But photography isn’t writing. I need to write.

Well, the surgery excuse is now officially old. The operation succeeded – mostly – I’ve recovered – mostly – the dreaded bubble‘s gone – mostly – and I even made it to the gym this week – mostly. Time to put fingers to the keyboard. Before I shoot at the other writing goals though, I need to exorcise the health stuff.

So here, as a sort of mopping-up exercise, are three scenes from a surgery, which took place November 5th.

1. Nooo! I don’ neeed a kidneeee!     

In which the joys of pain meds reveal their dark side.

2. “Do you know why you’re still here, Mr. B?”

In which I learn you can wander the halls too long.

3. Terror.

Yes… well… there’s no other word with quite the impact of “terror” these days, is there? Yet I have to use it: all the synonyms I can find really just tell a part of the whole… totality we call terror. This post will be along shortly. Nailing down what I’m trying to say isn’t easy.

There. Medical demons exercised with the exception of #3. When it is done, I get to move on. Next posts, already in the boiler, will be on hypnotherapy and surgery, and just how much is a cure worth? Stay tuned.

No belly-search by TSA!

Wednesday, October 22nd, 2008

Amazing but true, folks: I’m taking a quick pre-surgery trip to San Diego and I’m happy to report I – and my ever-expanding belly bubble – made it through airport security without being “examined!” And a big hooray for that!

OK, I took precautions: a baggy t-shirt covered by a ratty jacket, strict Victorian-standard corseting, and of course the trick all men of a certain belly size use to impress others with their physique, a serious sucking in of the gut.

Maybe none of it mattered, maybe it was just that the crowd pining to get to the Other Side was large and the TSA agents wanted to get  rid of us. Whatever, it was nice not to have to go through the “what is that? Ewwww… pull DOWN the shirt sir!” routine again.

Now, to the beach! (Shirt on, of course.)

Confidence

Saturday, October 11th, 2008

Funny thing about confidence: you don’t really know you’ve lost it until you start getting it back. Without an inner voice constantly whispering a “you can do it” nag, a hypercautious agony aunt takes over and plunges you into a fog of jitters. Auntie has excuses for everything. “No, no, no!” she hisses. “Be careful!” “Oh, you really shouldn’t go out tonight. You’re not quite recovered you know!” “Of course you shouldn’t feel guilty about not taking that bike ride! Look at what you’ve been through!” Eventually this irritating scold owns you so completely you cringe at the risks involved with everything. “Be careful of that tea now, it’s hot!” “Don’t trip on that step!”

Unless you had the misfortune to be raised wary (or had a very difficult childhood, the same thing), auntie’s isn’t the default human condition. (more…)

Bolting from the ER

Monday, May 5th, 2008

I am not proud of this.

Friday morning I awoke with my right eye desert-dry, red, lumpy and painful. It hurt a lot, every blink an agony. What moisture it managed to produce was pink in color, tears mixed with blood. I could hardly see and it was impossible to read. Sentencing me to a life without reading would be crueler than marching me down a long hall to a gas chamber with a noose around my neck and a cocktail of lethal injections in my arm. I was not happy.

This isn’t the first time an eye’s gone bonko lately. My eyes have been chronically dry for years and the meds making up the small mountain of pills I take daily thanks to the liver transplant and my other ailments have only made them more so.

Worse, a few months ago, after my latest near-death experience and the rise of my belly-bubble, the docs put me on a heavy dose of diuretics, two flavors, in an attempt to keep said bubble under control. Besides the obvious side-effect of making it impossible to pass by a bathroom without saying hello, diuretics have wreaked havoc on every moist membrane in my body. Especially my eyes.

More than once I thought I’d have to go to a doc or the ER to have an eye checked out for the symptoms I describe above, but I always found an excuse to avoid it. It’s late, I’d rationalize; sleep and see how it looks in the morning. Those tears aren’t really pink they just look pink. Or I’d dither so long on what to do the pain would lessen and I could see again, if tearfully.

Friday however the full set of symptoms were present when I woke up and only got worse as the morning went on. The ache was awful. My friend Jeff – Saint Jeff of the Infinite Patience I should call him, at least when it comes to helping me with my health “issues” – called at just the right/wrong time. I told him what was going on. “I’m coming over,” he said. And so he did and we agreed I should go to the ER and have the eye checked out. All my usual contacts at the UCSF Liver Clinic were away – it was Friday – I had no other option.

So I get to the ER which is mercifully quiet at 1 in the afternoon. The morning day-care rush of uninsured sneezing children are gone and the gunshot wounds and overdoses haven’t clocked in yet. It’s just me and a few others, all in one form of medical misery or other. I do the insurance intake blotting my eye, taking note of the continuing pink of my tears. Another short wait and a nurse calls me in, does the blood pressure-temperature bit, tries not to gasp as my medical records pop up on her screen (“Uh, which organ did you have transplanted, Mr. Brownson?”) then asks me to wait in a nearby hall for a visual acuity test. “I can see,” I tell her. “It’s the bleeding and the pain I want to check.” I give my best pleading look. “I don’t want to lose an eye.” She nods in that ER “we’re on it” kind of way.

A few minutes later – it really is quiet here – another nurse points me at an eye chart. As predicted I can see ok between the painful pink blinks if I have to. I repeat my plea. “I just want to know if it’s damaged and if I can get some of those numbing drops to control the pain.” Another concerned ER nod and I am led to a “room.” Now, unless you’re having a heart attack or are full of gunshot wounds, a “room” in the ER is usually just a niche in a hall with lots of tech equipment and medical supplies jammed around a bed. If you’re lucky, a curtain closes you off from everybody else. You couldn’t squeeze three ER techs in these spaces if they had to save your life.

The nurse points to the bed, on which is a hospital gown. “You can…” but I bolt to a chair that is half in and half out of the niche. No way am I putting on the gown and getting into that bed. “OK.” The nurse shrugs. “You can sit there if you like. Your charge nurse will be with you shortly.” She gives me another ER smile, curtains me in and disappears.

And so I sit in the gray light blotting my eye. Five minutes, ten… The medical equipment and tubes and rubber gloves lean in on me; the hospital gown, neatly folded and placed at a cocky angle on the edge of the bed, fills my aching eyes. Since I cannot read I cannot distract myself from my ever-active mind. Dangerous.

What am I doing here? Every time I blot my eye I check for signs of lessening pink. The pain is receding and the post-diuretic headache is kicking in – a sign the process that caused the eye problem is cycling through. Why am I here? This is an ER! I am NOT sick! Up goes my anxiety.

The main reason I haven’t written much in this blog lately is that over the last dozen or so weeks I’ve experienced my longest period of “functional” in two plus years. Yes, I’m still anemic. Yes, the Hepatitis C is still in my liver and my blood, muttering and plotting like a madman in the shadows. I still get dizzy and achy and tired and at times befuddled and blah and blah and blah. But I’ve also traveled: two trips to the Tahoe area, one driving and the other on the train over Donner Pass. I made it to the gym last week, first time in five months. Twenty minutes’ exercise takes everything out of me, but it’s a start. I’m planing to visit my sister in Wyoming at the end of the month. I even have hopes of getting back on my bicycle soon.

Sitting in this ER “room” throws me right back into the miseries of December and January and my post-hernia surgery metabolic collapse. Three ER visits over “the holidays,” serial hospitalizations, the worst pain I’ve ever experienced – hell, ever imagined – the weeks and weeks of recovery that still isn’t complete… these things are still too too vivid in my memory. But most of all sitting here reminds me of the devastating hit my very being took from that whole miserable michegas, a hit that left more damage than the liver cancer and transplant ever did.

The niche is dim with the curtains pulled but the lights on the equipment are bright. I blot my eye again. There is less pink. I blink, the pain is down. I hear a woman in the room next to mine on a phone telling someone she’s ready to go but is waiting to be discharged. Eventually I see her through the gaps in the curtain; middle aged and in a red dress, she leans out in the hall anxiously looking for someone, anyone, to come and set her free.

What AM I doing here? It’s becoming an obsession. I won’t give up the life I’ve pulled together, however hobbled, these last twelve weeks. I just won’t. They cannot take it away from me. No! The ER only leads in one direction: to more procedures, more doctors, more exams, more endless nights and days in the hospital – that horrible wonderful hospital that saved my life only to put me through groundhog days of torture. WHY am I in the ER? WHY did I come?

The charge nurse doesn’t appear. The woman in red makes another call and haunts the hallway. My eye hurts less and less, my anxiety hurts more and more. The pink tears stop. I fantasize about walking out, just getting up and leaving. The more I think about this the more urgent the idea becomes. I argue with myself: Stay and they will steal my twelve weeks. I’ll be imprisoned again in perpetual “unwellness” and this time I might never escape. I have to go, I have to go.

I look at the gown on the bed, the lights on the equipment, hear the woman in red call for someone, anyone, in the hall. I dab my eye one more time, still no pink. Without consciously deciding to I grab my backpack, jacket and hat, stuff the hat in the pack and back out through the curtain into the hall. I look for an escape but can’t see one, just halls leading to halls.

“Can I help you?” A young nurse carrying sheets and gowns appears.

“No, no, thanks. I’m fine. I have to go.” I stumble all over my words and flash a panicked smile.

“I’m your charge nurse,” she says. “What do you need? Here, come on in…” she indicates the little room. “Lets see how your eye…” The woman in red watches and I am aware enough of what I am doing to be know I am telegraphing panic.

“No, no… everything’s fine, really. I’ve got to go. Really. Got to.” I hurry down the hall and take the first turn. I see doors to the world but they are marked “Ambulance Intake Only.” The charge nurse rounds the corner. “You can’t go out that way that’s for ambulances.” I’m trapped. She sees the panic on my face. “You have to go out the way you came in,” she adds gently.

“Thanks,” I say, my face redder than my eye ever was. I pass her by, back into the main hallway to the next left but it’s a dead end. Finally I find a hallway that leads to the intake area.

“Everything all right?” asks the intake nurse. “You’ll be right back.” It is a statement not a question.

“Fine, fine, thanks.” I’m shrivelling into a pit of chagrin. “I just… my eye is fine, fine. I just have to go. Thanks. Thanks so much.” And I bolt through the double-gated security-guarded entrance onto the street.

I’m both enormously relieved and hugely ashamed to be standing outside again. I am liberated and I have also let these people down, the same people – sort of, anyway – that saved my life two years ago. And now I’m running from them as if they are evil incarnate, each one intent on sucking out what is left of my life.

I go far enough to be out of sight of the ER and call Jeff. “Please, please don’t yell at me,” I start, then tell him what happened. He pauses, but does not yell. He does understand, at least on some level. “I’ll pick you up,” he says. “We’re not far.”

As I cross the street to the elevators that will take me to the rendezvous point – UCSF is on a San Francisco hillside and is vertical not horizontal – I’m overwhelmed with shame. I pull out the cell phone again and dial the hospital general number. Yes, I have it memorized. They connect me with intake at ER.

“This is Ed Brownson,” I say. “I just came in, but I had to leave. My eye is fine. I really really apologize for taking up your time. Everything is fine. I’m very very sorry.” The person on the other end asks a couple of questions then thanks me for calling. “Please tell the staff I’m sorry for taking up their time,” I repeat. “Oh, and tell them I didn’t touch anything in the room.” As if that makes it all better. I get in the elevator and go down to Irving Street to wait for Jeff.

As I said, I’m not proud of this. Truth is, the whole bloody experience was devastating. I panicked and I don’t panic easily. Or proudly.

Oh, there are excuses if I want one, no problem. The awful experiences of December and January. The fact that ERs never listen to what you say or to what you need but always go for their procedures and protocols no matter how irrelevant. That I should not have to go to an ER just to have an irritated eye looked at but should be able to go to a drop-in clinic – same with all those kids with colds – if only this damned country had an intelligent health system. Or I can evoke the most honest and easiest excuse of all: after two years of all this, I. Have. Had. Enough.

But as we learn when we are kids, excuses change nothing. I bolted. I panicked and bolted from the ER. And I found out another limitation on my once unchallenged carpe diem “nothing gets to me” attitude to life.

In January I found my limit to pain; I didn’t know where it was before. Now I’m learning just how many trips to the hospital, how many medical procedures, I can take before I crash and burn in red-faced madness. Two years ago, when I sailed through the liver cancer and the transplant, the lesson seemed to be “I can survive anything.” Now I see how thin that illusion is. I guess 2008 is my year of learning limitations.

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It’s been too long between posts. I’ve decided to add less edited, more frequent comments and experiences to the mix. Oh, I’ll still be doing the essays, I seem incapable of not writing them. But they take longer to think through and there is so much more going on in the life of a professional transplantee and lab rat… Stay tuned.

OMG! My life belongs to a Medicare HMO!!! (First in a series, unfortunately)

Saturday, February 16th, 2008

If there’s one thing everybody knows about those of us who have body parts replaced, it is that we have to stay on anti-rejection meds the rest of our lives. One slip and our immune systems go haywire and try to expel the alien organ. Rejection is NOT fun: you get two grams (yes grams) of a IV form of prednisone (Solumedrol) dumped into your veins, lose what little is left of your immune system and go stark raving bonkers in the meanwhile. I’ve seen people in 9 Long – the transplant floor of UCSF’s Moffitt Hospital – suffering through this madness. They don’t mess up their rejection meds again.

Hold that thought. We’ll be right back to it.

When I was being evaluated at UCSF for my own liver transplant, if and how it would get funded was a real worry. I ignored the worry for a while – there were the million evaluation tests to get through, a chemoembolization to shrink the tumor they’d found, etcetera. But eventually the financial fretting took over: What if, after going through all the steps, the insurance company said no? One of the doctors evaluating me suggested I talk to a UCSF financial counselor.

“Don’t worry!” said the counselor. “The insurance company will likely want a second opinion and that’s normal. But you shouldn’t have any trouble getting approved.”

“How do you know?” I asked. “Heck, how will I know? I haven’t heard word one from HealthNet’s HMO since the tumor. What if I go through all these tests, you find me a liver, and HealthNet goes, ‘Oops! Sorry! Can’t afford your transplant, we have a bottom line and you’re not in it.'”

“Are you getting regular care here?” He asked.

“Yes.”

“Then things are going ok.” I looked at him puzzled. “Believe me,” he said. “We wouldn’t be doing anything for you if the insurance company wasn’t funding it.”

Nice, that.

Obviously I made it through the approval, a liver was found, and the transplant happened, all without a peep from HealthNet. I was as amazed by their silence as I was by having my body ripped open and an organ replaced. Transplants, especially liver, are expensive (there’s a lot of cutting and pasting involved in switching livers) usually to the tune of $400,0000 to half a mil. And the insurance company never squeaked? Wow.

A few weeks later, I’m out of the hospital recovering well (this is before my other complications set in) and I go to fill my prescriptions for the anti-rejection meds. Denied, said the pharmacy. Not part of HealthNet’s formulary, it seems. Medications deemed not necessary, it seems.

Huh?

And here we are, back at this post’s start. I had a transplant. The hospital staff beat me over the head making sure I understood that if I didn’t take my meds the organ – me too incidentally – is toast. And everybody knows etc., etc.; surely ‘everybody’ includes health insurance companies too? How could HealthNet not even squeak about dropping $400k for the part swap but now balk at a few hundred dollars for the meds needed to keep it functioning? Huh? Huh?

After much back-and-forth between UCSF and HealthNet it was decided that, yes, a transplant recipient probably does need anti-rejection meds and they were duly authorized. End of story? Oh, no.

Fast forward to today (Feb 08), post transplant 18 months and counting. Into the pharmacy I go to pick up my monthly supplies. My Myfortic, one of my anti-rejection meds, has gone from $7 copay to $170.

“Why?” I asked.

The pharmacy didn’t know and suggested I call HealthNet. I call, wind through the “press 1 for life, 2 to die on hold” nonsense, get a human and after much back and forth, learn that Medicare and the HMO, now working together (isn’t that a marriage made in hell), have de-authorized all rejection meds for 2008. I am out of “Huh’s?” at this point though other words that came to mind.

There is a happy ending here of sorts. Just as UCSF has a person dedicated solely to deal with financing transplants so it has a person whose job is to make sure those same companies don’t cut off transplantee’s meds after the transplant’s done. Seems I’m not the only one with this problem. I called her – we’re on a first name basis now – and after 24 hours HealthNet decides that I probably do need anti-rejection meds and probably will for the foreseeable future – at least mine. My UCSF contact was jubilant. “I told you,” she said. “HealthNet is one of the easiest to deal with.”

Sheesh. God may bless America, who knows (I have my doubts). But she clearly forgot to include our health care system.

Rant: Credit Where Due

Wednesday, December 12th, 2007

Recently I stepped in a pile of religious doo-doo on the ‘net. I extricated myself as fast as I could and made an attempt to tidy the mess, but it left the inevitable stain. What happened was this.

I have Yahoo and Google set to troll the web for the latest news on liver transplants and Hepatitis C. Along with the (desired) medical info I get articles about celebrities (Anita Roddick dies from HCV complications, alcoholic politicians and celebrities get moved to the top of the transplant list when they wear out an organ), Google also sends along links to blogs on these topics. Usually I just scan them (more…)

A funeral, and Dr. Cassandra makes the call(or: The beginning of my own annus horribilus.)

Thursday, June 28th, 2007

Last night I went to my own funeral but just couldn’t hack it. I tried to be a good corpse – really, I did! – but the whole death-funeral-honor-thy-memory thing gives me the creeps so I snuck out of my coffin and bailed through the mortuary window. I did hesitate before bolting; I was worried I’d disappoint people. You know, wreck the last rites, ruin the opportunity to speak nice of the dead (God knows my friends and family have been waiting for the opportunity), wasting all that money on flowers and somber men in black suits, et cetera ad nauseum. But I just had to bolt.

I flashed one of those phony “So sorry!” grins to those who happened to see my escape, but the dearly beloved gathered didn’t look all that concerned. A lot of acted like they actually expected it. My rep, I guess. Nothing I do re: living and dying seems to surprise anyone anymore. So out the window I went and it was a relief. I never could abide a funeral. Want to do something nice for somebody? Do it while they’re alive. Otherwise, don’t bother me. I’m dead.

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Today is the anniversary of my latest death sentence, the third in a series. One year ago (more…)