Missed calls

A decent lot has happened since i last posted. Yesterday i had my follow-up endoscopy. My lil sister was kind enough to drive me there, in my usual form i refused to take off my shoes, and resisted everything in my drugged up haze. The next day has a few fuzy details after i saw them start the injection, and then it was Saturday.

I did learn a few big things prior to my surgery. I learned that my treatment would begin later, because they're trying to get me on drugs that will have potentially less side effects (but sadly no data to back that up at the moment due to the state of my liver) and will take half the time.  An article came out a while ago, and i had a comment exchange with a  friend on my FB wall, i've attached it below as i'm sure many of you have similar questions if you've seen the article.

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So recently I've noticed that a few people have read a BBC article. Yes a version of this will be used in part of the therapy i will soon be on. The numbers reflect people with functioning livers, i am not among those. So this is incredibly promising, however not the golden ticket it would appear to be.

Hepatitis C trial a 'turning point' http://www.bbc.com/news/health-26987653

A new treatment for hepatitis C cured 90% of patients with the infection in 12 weeks, say scientists after studies in Europe and the US.Top of Form

Friend: Thanks for the post. Will you please explain where the study shows that the numbers reflect only people with functioning livers? They stated that all participants were experiencing liver cirrhosis. I think there might be a gap in my knowledge between cirrhosis and functionality of the liver. Additionally, they state in the preface of the article that Hepatitis C can be spread via "blood , or bodily fluids of an infected person," which is erroneous, right? I thought that it's only spread through blood to blood contact.

*Edit-Here's the original article. It's pretty heavy, but explains the details: http://www.nejm.org/doi/full/10.1056/NEJMoa1402869...

Me:  Bodily fluids is technically correct, because blood is one. There can also be blood in other fluids. Blood to blood is correct.

Cirrhosis has levels. I have advanced liver cirrhosis, for reference.....http://www.meddean.luc.edu/lumen/MEdEd/orfpath/cirhosis.htm

I have a decompensated liver.

Me:  I know they do, I asked my doctor who was familiar with this information, and confirmed with other GIs.

Friend:  Thanks for the information/clarifications. The article that you linked on liver cirrhosis states that it is considered to be a "self-perpetuating irreversible process." Is that for all stages?

Me:  Once the tissue becomes necrotic, or starts to exhibit signs of liver failure..., the only method is removal/replacement.

early states though...As long as the nodules aren't fuckall crazy (aka they don't regenerate and possibly spawn cancerous lil shits) it can be dealt with and managed depending upon the remaining healthy cells.

Early phases: yes it can be dealt with. Late phases the only solution is removal.

"

Another dismaying fact is that i have rather active regenerative nodules. but! all is not lost! the world is still fantastic and beautiful, because, yes my doctor and advocates have a hard case to sell; but they have a case to sell. Me. And the more faces i see beside me, the more i realize how much of a product their selling. My support network always comes through, dozens of friends, realistically dozens of family members is what i should say. i am constantly surprised by the outpouring support and love pushing for my success.  thank you all ever so much. <3

Sleeping in recovery with my shoes on.

Only a few months left, sign up for 10 bucks! JOIN THE LIVER LIFE RACE. or donate, that's cool too!

Ticks and Tocks

A lot of crazy medical stuff has been going on but first i feel happy, and i must share why.

In our lives we find struggles, we find hurdles. Sometimes our legs don't jump just high enough. It's not the best, but there is providence in struggle. In our lives we encounter enemies that will crush a soul, an arm, an idea, a smile.  It takes more energy to recover what was crushed, but it's sweeter. To those who struggle, enjoy the story, the ride, the journey, the crescendo. We live between seconds, and we will always have just enough time. Life; love, sadness, pain, joy, anger happen to sweeten each next piece until a perfect end.

I have recently come to terms with the fact that I'm not as physically able as i once was. I get tired after a few hours of day to day things. I've finally found a balance of supplements that's working well, my new doc gave me some info that helped a lot. The downside to getting rid of acitites is the process. it's tripled my trips to the bathroom, and drains me of lots of nutrients. My muscles can't operate properly and they seize, the problem is that it now happens anywhere.  My metabolism was already on constant eating or pass out mode, this just made it worse. i am tired and worn out so much easier. My solution is 750mg Mg 500mg K 40+g Protein, >200mg Na, 300-500 calories per hour, 8 oz water per hour, and two low stress 20 min exercise routines. high iron, minimal red meat, and a ludicrous number of Bananas. with that, i have days that work, i can function. 

i have done blood tests, ECG, a urine sample where i peed in jug for a whole day... still don't get that...MRIs, Endoscopies and I'm up for EKG and a few other tests it seems before i can start. Being cured is that goal i strive for, this process has been sped up tremendously with help from my family, my fantastic doc and staff as well as some of the best Health Advocates I've encountered. But the whole wait of it, i will savor. i find joy within ticks and tocks, because it reminds me to experience what lies between them.

28

A few days ago was my birthday, with my leg problems coming and going, the endoscopy looked to be an odd way to celebrate. the night of my birthday had an early alarm wake up from my cell phone. Years ago when i started the third treatment i set a calendar event in hopes of success. it read one word: "Freedom."

 It wasn't the way i wanted to begin my birthday. that hope crushing reminder of my consistent failures.

The endoscopy was not promising as some bleeding varices were banded. exhausted, and drugs running through my system from the endoscopy the next few days were a blur of familiar faces dropping by to take care of me. It reminded me what good friends i have.

I normally celebrate my birthday for about ten days, but this year i scaled it back to one party. the original reason why was because people didn't show up. this year i expected about 20 people, i was surprised and excited to see over forty of my friends in attendance. as i looked around i felt so lucky to have so many amazing friends all there for me.  It was the best present i'd received in a while.

in other news, i am moving forward with steps to start treatment. my hope is for march which really means May, as it can take up to two months to be OKed for RX.

Also please join me and my amazing friends (or if you areone of my amazing friends and haven't registered, for free btw) on the SanDiego Liver Life Walk.

it's free until the end of the month.

and if you can't make it, that's okay, you can always donate. :)

Drop in cabin pressure

 The last few weeks have been a doozy! My legs have added a new source of frustration, the solution to deal with ascites was to get rid of all that excess water.

I could not have foreseen what happened next, within a week I lost near 15 lbs, turns out flushing all the water out of my system has left me rather bone skinny. After a week of the rx, I was introduced to what has become a new daily battle.

My legs seized, while most of the muscles cramped, the rest Charlie horsed or fell asleep depending upon the angle. For a good near hour I was restricted to the floor, I am lucky in that my friends were all there to take care of me. Ice did very little, heat helped more, so heat and steam became my remedy until they depeleted their usefulness. After talking with a friend of mine she explained a few things about the rx I was on. Turns out, in flushing your system, potassium, sodium and magnesium get depleted easily. To make the balance harder I am on a low sodium diet, making supplements, and fruity snack choices my primary tools alongside water in preventing the debilitating  leg pain.

The pain, I can get used to, I can deal with it. but the frustration is with my newfound lack of independence. It’s a hard concept to take in, to know that where I stand presently, i essentially can’t risk driving too far by myself, and at times I can’t drive, can’t move. i’m getting a pretty good handle on it, which is nice because I’m certain I will be able to stop taking them soon.

Also a new staple to my diet is massive amounts of protein I am to be having a minimum of 40-60gs per day. Luckily I always make sure to do curls and wear sunglasses while I drink my protein drinks.

The Liver life walk team is growing!!! I’m so excited, we’ll be ordering shirts third week of march so sign up before then.

It’s free until the end of the month 2/28

 I also have an upper endo soon, the day after my birthday next week, woohoo. lets hope to keep the varicies under wraps.

Gams like hams

Recently I had a brush with one of the more odd symptoms of worsening liver disease. While my ascites has not been a constant obstacle in my life it does randomly present some odd challenges. Like tying my shoes, my stomach area is so rigid that it’s difficult to bend down. It’s as if I were either pregnant or weighed a hundred pounds more. Over the last few months my legs have been getting worse and worse. My skin brittle and lacking the elasticity it once had prior to treatment has been struggling with  my legs swelling up. Last night the swelling was so bad I was unable to move my ankles properly, it was as if I were wearing two casts that were part of my body.  After lots of rest, water and exercise my legs got to the point where I could walk, drive and function normally. Running is still out of the question. Imagine someone hot gluing then duct taping two Ziploc bags of water to your feet, that’s what it feels like.

 I went to Urgent care where in I found out, this is in fact a result of my decompensating liver. They will probably be tapping me soon in attempt to ease the ascites (http://en.wikipedia.org/wiki/Ascites) my hope is that the rx they gave me will also decrease the leg swelling. It’s actually immobilizing, and I’d rather avoid it if at all possible. Additionally it on reinforces the rationale behind getting in shape, if I’m in shape this shit happens less.

I'll know more sometime today(friday 1/16) th

Trouble will find me

With my offer rescinded I head out to shop this holiday season for a new job. It’s amazing how I seem to keep falling into these bizarre circumstances; where just a little bit of hope dangles in front of me, Only to slam the door in my face and leave a sliver of light to encourage my persistence. Luckily through covered CA I should be able to find a way to reduce my costs, and keep my hopes that this spring I can start treatment. So for now, Merry Christmas, and if you don’t celebrate Christmas, happy day off where most everything is closed! Unless you work today, then enjoy your federally mandated holiday pay! Unless you’re paid under the table… anywho merry Christmas to you!

Also The National's Trouble Will Find Me is a fantastic album if you have a chance to listen to some mildly depressing rainy day beach music.

In the meantime I encourage you to join/donate! Only a little over a month left to register for free for the liver life race.

We're far from the goal, but we'll get there soon!

Resilience

Not to be confused with invulnerability.

Last Friday I was offered a contract, after accepting it I spoke with my soon to be supervisor(s)… the next day the offer was rescinded. While that happened i did some searching, It took me a bit to figure out Cobra vs. the marketplace and how big of a financial impact this will have, but it’s not pretty.  On top of this I found out the treatment I’ve been hoping to take may not be for my Genotype…which means another year or so until I’d be able to start.

But hey...'tis but a scratch.

Thankfully I am still able to sub, and I love being back but obviously the circumstances are bittersweet.

As some of you know John Mayer is a favorite artist of mine. His discography has helped me gain perspective on many challenges, so I leave you with the song The Age of Worry.

ALSO!!!!

  PLEASE SIGN UP FOR THE LIVER LIFE RACE!

Registering before feb is free.

If you don't want to/can't sign up or join then please donate.