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But I'M NOT BITTER...
The Goddess of battle, strife, and destruction explains it all for you

A Not-So-Merry Christmas

by

December 12, 2008

Iím at the hospital today, but Iím only here for the day.After improving significantly, I began to get sicker again.My liver functions skyrocketed, the pain got worse and the itching became unbearable.

What weíre looking at here girls is primary sclerosing cholangitis,a disease that normally runs its course (that course being diagnosis to eventual total liver failure and transplant) in about a decade.†† Itís an add-on to Crohns disease (though more common with ulcerative colitis), and thought to be the result of the same autoimmunity that triggers Crohns. Think of it as an optional extra, like leather seats in a new car.

All things considered, Iíve had a fairly easy go of it until now.I was diagnosed as a child and it was the last thing they expected, given that the typical patient is male and 50 so finding it in a 13-year-old girl surprised everyone.By the time the diagnosis had been made, considerable damage had already been done.

In a nutshell, itís a degenerative liver disease.The bile ducts (youíre born with 4) begin to scar and narrow. They become blocked and then atrophy, obviously impeding and eventually preventing normal bile flow.The only treatment is transplant.The disease progresses slowly Ė in my case, the initial diagnosis revealed that at that point, I had only 3 functioning bile ducts.Off and on during my teens I was pretty ill with the Crohns and the liver disease didnít really trouble me all that much. In fact, it just seemed to abate and I thought no more about it.

Fast forward a few years.I began to have upper right quadrant pain and became so itchy, I felt like I was ready to claw my own skin off. My bilirubin and other liver enzymes and functions were grossly elevated.And although at that point I was referred to a transplant surgeon, I responded well to the medication and it never came down to that.When the entire episode was behind me though (and it lasted well over a year), I was down to 2 functioning bile ducts.

As Iíve said, thereís no cure for this.I knew eventually Iíd need a transplant but I wanted to put that day off as long as I could.I heal like an Immortal and since I didnít drink much or do street drugs, I figured I could buy myself a bit more time.

But during that long hospitalization, I had some surgery to remove neoplasms from my liver (to simplify:nasty little cells that shouldnít be there and often become malignant) and an attempt was made to unblock one of the two remaining bile ducts.

The surgery Ė called a hepatectomy Ė was no big deal.They go in through your belly button and as far as surgeries Iíve had go, this was nothing.Itís a bit odd to wake up and find your belly button sewn shut, but that was the most distressing thing about it.

The ERCP was another matter.Prior to the development of a type of nuclear medicine test (a fancy xray for you non-medical geeks out there) called an MRCP, diagnosis of primary sclerosing cholangitis was made via an ERCP. Now itís only used for therapeutic purposes, as itís dangerous, excruciating and invasive.

This is the worst pain any human can endure and not die.Hands down.Iíve had a lot of physical pain in my life and as a result, Iíve got a ridiculously high pain threshold Ė Iíve had stitches and staples put in my head with no anaesthetic or painkiller (they lower my seizure threshold and seizures, given the violence of mine, scare me more than anything).

An ERCP is torture.Thatís not hyperbole ladies Ė itís actual torture.You canít be out for it because you have to cooperate while itís being done and the risks of fatal internal injury during it are significant.Too much sedation will lower your blood pressure dangerously and increase the risk of vomiting and this is the last place you want to start throwing up.So the protocol is to give only as much sedation as is required to ďkeep you comfortableĒ Ė which is a fucking laugh.

Hereís how it works:an instrument is placed in your mouth to keep you from closing your mouth.Itís made of hard plastic so even though you bite down as hard as you can, your mouth stays open.A tube with a camera is fed down your throat and pushed into the bile ducts of the liver (and Iím really simplifying here).This is the torture part.It is excruciating.I always try to scream and get away but I never quite manage it.An instrument is then corkscrewed through the blocked bile ducts in an attempt to open them up to permit bile flow.I canít even describe what this feels like:itís something more primal than pain.If you have any conscious thought left at this point, youíre praying to die.

It takes forever.

After the ERCP I had all those years ago, I swore Iíd never have another.I would rather die.

I wasnít given that choice.During this most recent hospitalization, I had to have another.I remember the pain, I remember screaming and trying to crawl off the table.I remember being held down.

I was on that damn table for 45 minutes.

After it, I started to bleed internally.I bled so much, in fact, that I went into shock.I developed pancreatitis as a result of the ERCP (the procedure causes it) and for a day or so, I was very close to death.

I donít remember much, mercifully.I was being given time released hydromorphone around the clock and tons of dilaudid every 2 hours.I was in and out of consciousness Ė another mercy.The trauma to my body was extensive.

When I came out of that, it was to discover that I have only one bile duct left and itís not in good shape.

But between the procedure and the drugs, I began to get better.My liver functions dropped until they were not as frightening as they had been.They sent me home on massive amounts of narcotic and I began to improve.

This lasted two weeks.

Then the pain and the itching began again and the bloodwork showed that my liver functions were again deteriorating.Because I was being so closely monitored, this was caught immediately.I stopped responding to the meds and within a matter of days, was right back to where Iíd started.

So today Iím back in the hospital again, this time only to get baseline tests.

The consensus is that the last bile duct I have is dangerously dilated and may well be on its way to becoming obstructed.Iíve got more neoplasms on my liver too.

Iíll need another ERCP and I have to tell you, I donít know if I have the courage to go through that again.I know I have to Ė Iím not healthy or stable enough for a transplant at the moment.If they donít clear this duct, I could die.

To say this has been a shitty year is putting it mildly.As a result of my bodyís treachery, first with the seizures, now with this, Iíve been off work for a year.As a result of that, Iíve lost everything Iíve had:my career, my independence, all my savings, my income.I never used to resent these unscheduled time outs when I was a kid Ė they make me angry and hopeless now.I get very depressed and begin to believe that perhaps Iíd be better off dead.Iím still not convinced that this isnít true.

I know damn well that if I lose the will to fight, itís game over.But entre nous ladies, Iím getting pretty tired of this.I find it hard to imagine a light at the end of the tunnel and the thought of starting over AGAIN just makes me weary.I donít know if I have the heart for it and Iím pretty sure I donít have the energy.

Itís hard to hurt this much for this long:at some point, you just want it to stop.Because PSC is so intertwined with Crohns (same autoimmunity, remember?), thatís active again and Iíve got a gut bleed going on as well.My whole world has shrunk to one room in a house and a town I donít want to be in.Iím isolating myself again Ė and thatís a bad sign.For me to cut myself off so completely from other people is akin to crawling away to die.

Iím in a town I loathe and Iím here on sufferance, at the mercy of things that are beyond my control.Iím not eating.Iím not sleeping.Iím being given so much narcotic but it just amounts to bad drugs that donít work enough.

Iíve been in this place before, but never for such a long time.I know this frame of mind too well to allow myself to dwell on my current circumstances.For the time being, I have to surrender and just let things be.Giving up control has always been difficult for me, so this is a struggle.

And in the meantime Iíll write.Itíll be drug addled and likely incoherent but the feeling of fingers on the keyboard is so soothing and these days, Iíll take my comfort where I can find it.

Till next time,

M.

PS - I want you to know that as hard as it is for me to accept help, I greatly appreciate all the donations, support, and well-wishes that have come in during this difficult time.



Copyright© the Morrigan & Heartless Bitches International (heartless-bitches.com) 2008
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