Posts Tagged ‘transplant’

Approaching seven

Sunday, June 23rd, 2013

IMG_1648 I live it still 2

After a while, survival is just another habit.

I haven’t been keeping this blog up for a while, at least for the purpose I originally created it.

I have a rainbow of reasons why: not wanting to bore my few readers with constant whines about my annoyingly dramatic health, a deep dislike of hypochondria, wanting to forget everything about the last seven years on the good days, struggling to stay intact during the bad ones with no energy left over to do anything except to fight and try to figure out what the latest complication meant.

One week and I mark my biological birthday. One month and it will be seven years since the transplant. "It is amazing – way beyond amazing – that you have survived so long!" A dear friend said to me this morning. She is a highly trained and regarded nurse; she knows of what she speaks. I know she didn’t mean the statement to be as bald as it sounded, but there it is: truth, unvarnished.

About a year ago I started a post about the shock of surviving six years. "I don’t know how to write about this," I whined then proceeded to list the complications and conditions and disasters and few triumphs since I first lamented the knife. I hated the whine so I abandoned it.

For the last year, certainly since the beginning of 2013, the problems of these seven extra years of life have started to rear up, first one after the other, now cascading, and are threatening to sideline me from the game of life, perhaps pull me from the game for good. I face this challenge weaker and wearier, and struggling to shore up my will for what is likely to be my penultimate fight for life. At least I hope it will be the second to last; we’ll see.

So I will be writing here more regularly, posting next the distressing list of things I am coping with now, and talking about the last-gasp treatments that are on their way. If you don’t hear from me for a bit, send a note to remind me of this promise.

I could never go through what you’re going through…”

Monday, January 10th, 2011

I’ve heard this comment from friends and family and even strangers for five years now and it always makes me uncomfortable. Something’s off with it; somehow the sentiment just doesn’t ring true.

Thanks to Thomas Mann’s The Magic Mountain – I’m carrying out my vow to re-read this magnificent and complicated book – I’m learning why the remark causes such unease. I think I understand how the words do not say what they are meant to say.

It’s meant to be a kindness, even a salute. “I don’t know how you do it! I couldn’t,” someone will say to those of us fighting chronic illness or life-or-death health battles. Our treatments, our pain, the unending doctor visits and hospitalizations – they seem unendurable, impossible to someone looking at it all from the healthy “outside”. (more…)

Medical system FAIL

Wednesday, August 26th, 2009

This happened yesterday. The only info you need to make sense of it are a) I was in the hospital for a few days about two weeks ago due to high fevers following an endoscopy (a look down the throat), and b) when they were looking, the docs saw something that concerned them,  declaring it Must Be Removed. I agreed. Now if only I could get it done…

Rather than polish it up and risk losing the, er, spontaneity, here’s the eMail I wrote to my friends.

Went to ENT (Ear/Nose/Throat) clinic today to get the thingy in my throat removed. The following happened:

1. Doc saw me, said situation is exactly what the docs in the hospital had said two weeks ago: growth on pharynx, probably papilloma, needs to come out. Said he’ll do an excisional (right word?) biopsy removing the whole thing (unless it extends into my brain or some other inconvenient spot). I said hooray for that! (more…)

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 years and counting… count.

Tuesday, March 10th, 2009

Today I sat in the courtyard by the Nurses’ building at UCSF talking to someone whose partner lay in a room above us on Nine Long, the liver transplant floor of Moffitt Hospital, waiting, suffering, hoping for a new liver that might save his life. The man I was talking to was distraught, grasping at hope as loved ones and caregivers do coping with such suffering. I offered what I could, listening and answering his questions. 

He asked a lot of questions. As his partner in that hospital room had said a few minutes earlier, meeting someone who has actually been through the craziness of a transplant is more helpful than reading medical abstracts. (I felt an immediate bond when he said that: one wonk can always recognize another.)

As I answered questions about my experiences I realized it wasn’t approximately three years ago when I learned about the cancer in my liver and my own quest for a transplant began: it was exactly three years. To the day. 

After we parted I walked to my car, secreted in a relatively unrestricted area near Golden Gate Park about 10 minutes away. I kept walking, right into the park and all the way to the AIDS Memorial Grove. I wasn’t planning to go there. The grove is a quiet area in a small glen filled with beautiful plants. It has been there long enough that the young redwoods can now be called trees.  

I took some pictures – my own solace and serenity these days – then returned to my car and came home.

I’ve been fretting about the economy and my diminishing place in it the last few days. Who isn’t? Listening to that troubled man… meeting his stuggling partner in the uncomfortable bed on Nine Long… in a hospital room I’ve been in myself… remembering that telling phone call three exact years ago…

Three years count so much more than numbers on a financial spreadsheet.

"Fear Of Change" Isn't Just a SignOn A Coffeehouse Tip Jar

Sunday, March 8th, 2009

Yesterday I listened to three-fourths of a lecture by Dmitry Orlov titled Social Collapse Best Practices. Three-fourths? Well, as fans of Russia’s great writers know, nobody does gloom like the Russians. Consider Dostoyevsky. Or Solzhenitsyn, who makes Dostoyevsky read like Steve Martin. Orlov channels that famous Russian gloom into our new century and aims it square at the heart of our current socioeconomic madness. I ran out of mental room for the apocalypse so I had to put the last bits aside.

Mr Orlov is a hybrid: born and early raised in Russia, he moved to the U.S. at age twelve. Now he is a writer and lecturer specializing in such happy topics as Peak Oil and the collapse of societies. Serious collapse, as in Post-Soviet the-world-we-knew-is-gone-OMG! collapse.

Both bits of his background come through. He is relentlessly, apocalyptically depressing, forecasting nothing less than… oh, let him say it:

I am one of the very few people who several years ago unequivocally predicted the demise of the United States as a global superpower.

(more…)

It's The Stupid Economy

Friday, February 27th, 2009

I have this image stuck in my head:

It’s a few months from now. Everyone who can possibly be foreclosed upon has lost their house and been booted out. The banks have repossessed apartment buildings from the landlords and every tenant has been evicted. And all of us, home owners and renters side by side, are parked on the street, right in front of our former homes, worldly goods stacked around us.

We cook on barbecue grills, sleep on mattresses spread along the asphalt, wash our dishes and ourselves with hoses hooked up to fire hydrants. We queue for the block’s portapotty, all the while staring at our boarded up, crumbling former homes, wondering, “how did we get here?” No answers come forth; we shrug and go about our days.

This scenario is of course delusional. Oh, not the part of all of us living on the streets; that seems all too possible. The delusional part is the idea that everybody will shrug and go quietly about their business. We’re just not that kind of species. Paraphrasing our national court jester: burn, baby burn.

(more…)

Scene 1: "Nooo! I don' neeed a kidneeee!"

Wednesday, January 7th, 2009

For those who don’t know how most operations begin (may you long cherish that small bit of ignorance) here’s a primer.

You check in to a Pre-Op room hidden deep in a hospital. You are led to a little curtained-off cot, one of half a dozen in a row. Nurses come by with papers. You sign your life away, agreeing for the third or fourth time to the same procedures that landed you in the room in the first place. 

Your clothes, any dignity you might still have, and all other belongings are taken away to be returned “later”. Hearing the word “later” your mind substitutes “the other side” and tries to imagine what that might be like. You shiver uncontrollably. (more…)

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…)