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Peginterferon-Ribavirin, Failed it twice. Incivek, Failed it. Sovaldi Olysio, failed it. Harvoni, failed it... Transplant Patient Zepatier and Sovaldi...we'll find out!

Tuesday, October 30, 2012

Better things than angry

As a whole my GI doctors don’t generally like to look at me, if they don’t have good news. The average age of the people they see is in their late forties, and were exposed to HCV by doing something during their lifetime. Whereas I was born, got it, have failed treatment three times and have worse liver damage than many of their late forty year-old patients. So it’s not exactly easy with all of this knowledge to give me anything less than good news.

While I appreciate the consideration of my doctors to constantly reassure me of my resilience, sometimes they’re not always… tactful.

Doc: Normally if a person with your level of cirrhosis were to bleed as often as you have in the last year, they’d die.

Me: Well that’s nice.

Doc: But even with that, you’re still going to need a transplant… You’ll need to without another bleed for a year, and then we can look at a study.

Me: I’ll do my best, Varicies will start bleeding, and I’ll be like ‘Nah man.’

Doc: You have a really optimistic outlook despite this horrible situation you had no control over, If I were to be in this situation I’d probably be really angry all the time.

Me: Yea, well like you said, I’m resilient. It can’t be helped, if I spent all my energy being angry, how would I have any left to get better?

There is also the reality that within a few years I’ll be due for a transplant if I can’t make some headway in the next treatment. It is not a treatment though... it is currently an interferon free study, which has far greater risks than an FDA certified treatment.

It was a rather depressing way to spend forty dollars. But I realized that I don’t fight most things, I allow them to pass, so that I can pour my fight into things I truly care about.

Friday, October 26, 2012

Struggle, because it proves you're still alive.

Sleeping last night was an adventure to say the least. Wrestling with my unrelenting mind I could not find it within my power to fall asleep. A little anxious for the news I would hear today, I kept my thoughts elsewhere. Waking up more exhausted than when I went to sleep I drudged through the day, every spare moment my eyes locked to the phone waiting…

At 2:30 I got tired of waiting, I called them to check what was going on with my results. The nurse was away, I was assured she would contact me with results when she reviewed them. The suspense broke me, noting it was getting close to the end of the day at 4:00 I called again, the nurse had yet to review the information with my doctor.

At 5:03 pm, Friday, October 26th I got the call. 

She asked me how I’m doing, knowing full well the weight, the information in her hands held, to me. Her voice dropped as I responded and she began, “the results of your lab work still show that it’s detectable.” She apologized as if she had some measure of control. So as not to needlessly inject tonight, i pushed for an answer, as my doctor agreed, I stopped treatment.
Four months after i started this..
The treatment has failed.
While I know there is a treatment in the future now, one without interferon, I must go a year without an episode. Something I've yet to be able to do, As I consistently have had bleeds since being diagnosed with Esophageal Varicies.

The future’s sky seems a little less bright, but that’s no reason to give up the fight.
I've spent the last four months putting myself through all kinds of hell, I've lost over thirty five pounds of muscle and fat on this treatment, I’m weak, and brittle. I’m tired and my eyes lose focus of elements right in front of me. The muscles in my hands shake violently when I strain them, exhausted from lack of blood. I still bleed from less desirable places, each day reminding me how ragged I've become.

But now I must rebuild, as I have done before, I must focus myself on who I am and what I want from life. For it may not be a long life, but it will be bright, joyful, and filled with love and laughter.

I would be a fool to let something as little as failure hold me back. 

Wednesday, October 24, 2012


It's hard to describe in words the solemn despair,
No reward, no end yet, not even halfway there.
Just more things to kill me, more fears and more pain,
In a short time now, I’ll wait once again.
A year seems quite long to await some new torment,
But I’m losing more time with each passing moment.
The longer I wait, the less time I have,
In stasis life passes by, nothing left but to laugh.
Perhaps some kind of madness lingers in my mind,
Insanity and serenity leave reality behind.
A built up rage burns the sadness deep inside.
On a torrent of resilience the passionate rage does ride.
A turbulent clash of self, as my mind is torn apart.
A focused calm replaces fear, emboldening the heart.
But even with this new found courage, death is my shadow.
It walks along reminding me I’m steps from the gallows.
Love beside me, whisper shouts be filled with hope and joy,
Reminding me it's not so lonely, with love and friendship employed.

I was attempting to write how i feel about the potential of this treatment failing. It's impossible to truly explain, especially in this limbo.

The pole is awfully low....but i still have hope.

The doc's visit yielded no major new issues, but a colonoscopy just to check, in fact my blood levels are up!

Sunday, October 21, 2012

I saw Red

While the treatment warps my memories, and throws my emotions in to chaos, my body has decided that the  physical pain from the side effects of the treatment are not enough.

My esophageal varicies are at it again, i have no idea how or even why any more. Last month i was hospitalized for a bleed, i had an endoscopy performed, two weeks later i had another with no bleeding and everything looked fine.

and yet, here i sit, a week later finding myself in a similar situation to near a month ago.

It's like a time bomb, with no visible timer, it just ticks. Taunting me, reminding me that soon they'll pop and when i'm not attentive enough, i won't be able to react. I fear the treatment is worsening my varicies.

The problem is that now they'll need to up my RX for my beta blockers to combat the varicies, which means if i am allowed to remain on treatment i will have so little energy a full workday will not even be possible, let alone even driving there. 

If this latest bleeding episode turns out to be more varicies, there is a high likelihood that i will be forced to stop treatment, regardless the viral load.

So soon i will depart for my seaside villa in La Jolla, also known as the hospital.

No matter how bad it becomes, i hold steady to hope.

Saturday, October 13, 2012

Doctors Orders

I despise the scheduling department, for so many reasons. But here is yet another one; I had an appointment for Tuesday in the afternoon after work with my doc. Apparently no one thought to contact me until two days prior to my appointment to notify the appointment at the close facility was unavailable due to my doctor not being in that week. So instead they moved the appointment at a facility much farther away, to a different doctor two days later in the middle of the busiest day of the week. My 11:00 was more like an 11:45, which I had to talk a half day off work to drive out there to.

So not only did I have to wait two more days to figure out the mess the first scheduler handed me by telling me to stop all meds. But now it was the worst possible scenario for the continuation of my treatment, because it was with the busiest doctor.

So I went to work early, and left to go to the doc. After about twenty minutes of waiting my negative competent nurse came out to talk with me. I still have no idea why; she told me it was the busiest day at that my doctor would be a while. After two minutes of saying nothing of note she returned to bowels of the GI department. So I picked up my lovely Crohn’s disease pamphlet and continued to reread it until I would see the doctor at a little after noon. Ready to explain the shituation of a non-medical professional calling me to tell me I should stop my meds and to fight for staying another month he examined my numbers. Surprised I was functioning, considering the fact that I’d injected post severe bleed and my now very apparent anemia, he explained my numbers are all border line. Since I’d successfully injected and my viral load had not zeroed out it was a cacophony of confusion. Prepared for the worst, I listened as he explained there is a new treatment that is interferon free so long as I can go a year without an incident. After going over more numbers we came to the conclusion that I would continue the treatment for another month, but If I couldn't zero out then, that I would need to stop. It was a mix of news, but the perpetual state of limbo I’m in seems to keep dropping the poll closer to the ground and limiting my potential for success.

Excited for the prospect of a new treatment and another month, I left in good spirits. That night I celebrated the “News?” with some of my best friends. We went to a hidden bar, and I paid with two dollar bills, the night was a release from so much of the tension and insanity of dealing with rapidly growing incompetence of ancillary staff. 

With 14 injections done, I've come too far to give up. I know I've got a long road ahead of me and my body struggles along the path that’s been set. But luckily I am surrounded by support from all my friends and family. Some of the biggest surprises come from friends who I've not spoken with in years, and co-workers who've been following what’s going on as best they can. Everyone’s love, concern, and hope helps fuel the fire within to fight for what I’m doing. If I haven’t said thank you enough, I truly feel your encouragement, prayers and support have helped push me through those harder moments. Thank you all so much :-)

Friday, October 5, 2012

Full Stop.

I received a call today from not my doctor, not my nurse, but rather the scheduler to talk about two things. The first is that I’m going to need to see my doc ( I have an appointment next Tuesday, apparently someone was supposed to call to reschedule, which no one did besides her.)

The second, is a full stop. Because of my bleed last week and hospitalization, I am to stop treatment all together.

My numbers notwithstanding as I just took the test with viral load yesterday, I am to stop the treatment that will stop this bleeding that will stop me dying from this, that will allow me to live a near normal life.

I am to stop, with no information indicative to me that this is failing. No evidence, no data, nothing but the word of a secretary.


I will be continuing this treatment until I am convinced otherwise that I must stop.

I didn't spend the last three months in hell to hear this from some stranger on the phone.

There are too many emotions swirling around right now for me to truly encapsulate how enraged, saddened and disgusted I am by this.

But thanks to the emotional enhancement of my treatment, there sure as hell is a lot of rage.
Another lovely twist of it, is that I have to keep my blood pressure down.
To avoid another bleed out like last week.