Positively mad!

FDA FDA FDA

http://www.nature.com/news/united-states-to-approve-potent-oral-drugs-for-hepatitis-c-1.14059

This is the drug combo I’ve been talking about/waiting for. Since I’m banned from injectables due to the whole potentially dying thing… this is my ticket.

The idea has been around for a while, but no pharma company really was in a place to jump onto it. focus on the virus rather than the host. That being said reading between the lines on this article illuminates a major issue when it comes to drug therapies. Business collusion, and profit driven cures.

While yes I’m glad there is a cure around the corner I can take it’s distressing to know that so many people will be unable to afford it. People who are in those dire straits the cost become a cost effectiveness evaluation of their own life. Breaking Bad did an amazing job of illuminating the emotional and psychological process and ramifications of this nonsense.

It’s an amazing show if you haven’t seen it, I’d recommend it.

On the note of affordability Please remember sign ups are two months away for the liver life walk! The foundation uses proceeds for all kinds of liver operations/treatments and support services.

This last weekend my leg was going out of control again. Drink water, take vitamins and pass the pain on later with some Soma. While muscle relaxers do help ease the pain, they deal damage to my liver, so it doesn’t so much get rid of the pain so much as it just spreads it out over more areas over a longer period of time.

Weekends previous I was absolutely delighted to see one of my best friends marry the love of his life. It was a beautiful little ceremony, different than I thought he’d go with, but it was nice and fun. I can’t wait until he has a kid or six.

Similarly, Disneyland again…it’s been sooooo long! People often ask how I can go back to the same place, hundreds of times and not get bored of it. The beauty of Disneyland is just that. It’s always the same place. No matter how much of it changes, no matter how the world moves around it, it remains Disneyland. It is a happy place, a place where everyone’s inner child can come out for a day. For those not dragged along just going for the sake of going… you can see how thrilled, how excited each person is. And it’s infectious, with so many people, so happy.. it’s just wonderful. It’s just my cup of tea.

BACK TO TREATMENT…. Soon I will know more information regarding treatment, when and how everything is going to happen.

I have to move around a lot of things to figure out when its best to start, but it will be soon.

Because I’m late, I’m late, you see. I’ve got life behind that little door, and I think I’ve finally found the right bottle and key. It’s not impossible…just impassable.

Tick Tock

The beauty of the mindset you take when you live between the seconds is that you find value in such small things.

My doctor told me a while ago that I could go off the propranolol, but as jaundice shows more and more I’m cautious to stop completely. Every time I feel my throat tightening, there is a little sense of panic in my mind. Even if I've just got a sore throat or haven't had enough water that day... the memories are so vivid so etched into every facet of my being that I can't shake it. So I guzzle down water and take everything I can to ensure the sore throat goes away, but being careful to balance what I take so as not to further damage my liver. It's a thin wire I walk upon; the idea of decompensating just doesn't have the same buzz it used to.

and now back to my original thought… 

Today I was sick, some stupid nonsense I got from Papa G and Easy Mac...  Those are friends, not food. Also not fish. I took everything I could, but my mind was more in shambles than anything else. It's like when you think about the emptiness, the void the nothing that can exist, how small our plights are, that futility. You get trapped in the spiral, and for me, when I’m sick it exacerbates the issue. So in my zombie like state between naps I cleaned, and cleaned and cleaned. Because the principle of setting my mind right, setting my frame of the world in order is a process. Start with a step in the right direction, so I organized and I restructured, reorganized and I cleaned, and when I finished I saw that sense of accomplishment, that something small sets the level and brought back the focus to put my frame back in perspective. 

That yes, small as these actions are they are my actions, my slow, insignificant attempt to remind the universe that I will set the pace for how I do things. That I have my objectives in mind and hurdles be damned... I will live with joy and hope, in those seconds, those beautiful irrelevant tiny fractions... for the beauty is in their brevity.

On another positive note signups for next year's Liver Life Walk start soon, if memory serves me correctly it will be next month some time. Please keep an eye out for my posts to sign up/donate or just send overall words of encouragement.

2014: We will have matching shirts this time, everyone else looked super cool, and I was just lost.

Also because I dressed up as Waldo.

Also we actually got lost.

Also baby giraffes... are... hilarious.

Bueno

I should imagine that it's time for a bit of an update.

The Liver life walk (at the zoo) was an amazing success, we raised over eight hundred dollars, and really the walk was more of a.. OH LOOK BABY ANIMALS, because damn they're cute, and we had very little idea where the actual course was. There was a lot of fanfare and fun to be had, but damn was it disorganized. We're doing it again this year, i'll post up sign ups in December/January.

It's been a while since i last put an entry in here, with the failure of my last treatment i learned a lot.
1. How much i hate insurance companies who don't understand their own policies.
2. How hospital accounting departments seem to just bill first and ask questions later, end even report you to a credit agency.
3. biggest of all... how finding that critical treatment when you've been banned from the "cure" because if you take it, you die.

The treatment works, but i'm too far gone for it to work on me, so now i wait for a non-inject-able.

Hmm... how best to put this...

LAST TIME ON, THE ADVENTURES OF BONHOMME... With the failure of the ribivian/interferon/incivek triple cocktail in play, our hero was barred from trying this final cocktail due to an unfortunate side effect of advanced liver cirrhosis: Esophageal Varices. The stress from the treatment helped worsen the conditions to allow for several bursts causing massive internal bleeding and a lovely near death experience. As the doctors would later conclude, this treatment is too dangerous given our hero's present state. Banned from the treatment and hopes dwindling new potential FDA approvals glistened on the horizon... but will they arrive in time.

Turns out the answer is no, our FDA has a very...very....very...long screening process. note, i didn't say thorough, i said long. While sometimes it is, in many cases political pressure prevents certain drugs from hitting the market when they should because one company wants to corner the market or push a different drug that makes more money.

Shitty? yes, but hey they keep making cures, so it's not all bad.

Essentially the treatment i'm waiting for is under approval, and it's in limbo thanks to a lovely government shut down... Now for where it gets...well... ridiculous.

There is a form of hemodialysis that is so refined it can purge the virus. woohoo! great news! wait a second... lets look a little closer shall we? it turns out this particular form is not FDA approved, and most hepatoligists won't back it, mostly because of that. The company doing the procedure has been operating for a few years now, with great success, however getting over here is proving...challenging. Luckily their top notch facility is located in a rather unusual and fantastic place... India.

The  hemodialysis will take two to three weeks and it will be one of the most painful experiences in my life as they slowly filter....all of my blood. Good thing it's only like ten grand sans airfare, and it's all out of pocket. It will put me in the best condition to start treatment, as i'll begin it with a nearly zero count.

So i just have to take this trip before i begin my full treatment, once FDA passes that of course...but with the government shut down, the treatment may get postponed further, which makes planning this trip harder. Now throw in the next wrench, I'm on a transplant clock. When i hit twenty nine, it will be time for a transplant, in hopes they give me a decent sized healthy liver (if need be) the treatment options will begin to get even thinner.

If all goes as planned i'll be able to take the trip this Christmas, taking minimal time off work, and then start up treatment around the end of January when we have more holidays so that i don't miss much work. Thankfully my new job is less stressful, and more flexible. (not to mention it's what i love to do, and couldn't be happier.) I've got a compassionate boss who gives me all the tools i need to succeed, and amazing staff that are like a well oiled machine.

If this works, i'll be clear around July of next year, meaning that i'll be able to have a drink on my 28th birthday, but i won't be able to really know until around my 29th birthday. Because they want to make sure a patient is clear for a year with no signs of remission.

NEW SYMPTOM: of all this lovely experimentation and liver failure...muscle cramps. I'm not talking lil cramps, my hands, and limbs will lock in place if i don't move around enough, and even then the cramps turn to multiple hour long charlie horses.... Soooo what's the solution? apparently all they can give me is a muscle relaxant. There is one tiny problem with the vast majority of muscle relaxants: they're processed through the liver, which means it's a band-aid on a gaping wound.

Sooo what am i doing about it? Eating healthy, stretching and working out every day. I've now got a host of vitamins, supplements, and interesting food choices that all assist my liver's function. I'm going to go back on a real fitness/health regimen to ensure that i'm in top notch shape for this.

because it's literally the fight for my life.

I've decided i can't keep waiting for all the pieces to this puzzle of life, i take from the Ray Bradbury's borrowed words given to me by another Lifer, "...Jump off cliffs and build your wings on the way down."

The messaged echoed this past weekend at a John Mayer concert, You can't keep waiting for the right pen to start writing, you need to just write...you find yourself waiting for the guitar, or the protools, you just need to play, and just do.

A slight irony from the artist who wrote "Waiting on the world to change" but it was the growth from that he was talking about.

So here i fall, into madness, into darkness, into hope.

Images © 2015 Rick Nash and Bad Imagery All Rights Reserved

Asides

A few weeks ago I turned twenty seven, I had amazing birthday celebrations with friends and a party of nostalgic fun. I secretly planned a friend’s birthday plotting and scheming with the help of his girlfriend family and fellow friends to surprise him with not only a passport to Disneyland, but also a trip with lots of close friends. Whilst at Disneyland, I surprised some more friends with some upgrade assistance, helping to make it one of the most memorable trips to date. A lot of people question how and why I spend so much on a theme park.

To me, Disneyland is a place where everyone is welcome, where it’s okay to be strange and goofy. Where the kid at heart can always play, and it brings me such joy to have others who feel the same way enjoy the magical experience with me. It always cheers me up, and for someone who hears a decent lot of bad news, that’s a great thing to have.

Along that note, I recently had bloodwork and a routine MRI done (to check for liver cancer.) Thankfully I’m cancer free! However, I can’t seem to visit the doc without hearing some kind of depressing news. When looking at the MRI they found abdominal ascites. That’s basically liquid in my belly, in really bad cases, I could actually look pregnant. Woohoo! The trouble with this is twofold, the first being a smaller issue which is I will need to modify my diet to a low to no sodium diet. The second being significantly worse: I am barred from future studies. Ironically my liver cirrhosis is now at such a state, and my additional factors are too serious to risk for studies that would cure the cause of the cirrhosis.

What this means going forward is that I must wait for a few months after FDA approval to go on any treatment; which means waiting up to two years longer for a treatment than I would have to otherwise.

I recently found out the wonder drug I was taking: Incivek, killed two people in Canada and has left thousands with terrible skin problems. I nearly died during the treatment I can only imagine the insanity going on up there with the treatment. Because the problem with this killer drug… it works for most people.

Additionally I am no longer on the watch list for liver transplant, come next month, I will be on the actual transplant list. While I wait for my doctors to figure out what they can do with me, I plan on staying as healthy as a I can. However my newly swollen legs, obnoxiously irritating itching and growing jaundice are definitely cramping my style.

But no matter what happens, I will be participating in the Liver Life Walk this year.

SATURDAY MAY 11TH AT BALBOA PARK/SD ZOO Bright and early at 6:30AM!

 And I urge you to join me, if not for my sake then to raise money to help for the hundreds of thousands who will struggle with liver disease, and for the millions around the world who will die of it, because of lack of access and treatments.

Walk with me, Join my team, or Donate if you can!

Run for my life!

With the Liver Life Walk fast approaching, I've decided it's time to finally participate in it.

It's a hard road we must all walk, i see no reason to walk alone.

Please help, walk with me, and/or donate so that others who are not so lucky, may have the oppurtunity luck has denied me.

Sponsor me, and/or join my team, and thank you. :)

Seven weeks out

It’s been near seven weeks since the treatment failed. I've been hearing lots of good news regarding prospective treatments.

While I’m changing up my diet to include more liver healthy foods, I've added supplements to encourage my overall health. And most importantly I’m keeping to a healthy daily exercise schedule.

I've gone through all of this shit to get my numbers down from nine million, I’d like to keep it low in hopes that my liver can do some serious regeneration.

Along that note, the last four weeks have been a unique trial. I suspected there would be lingering symptoms from the treatment but I had no idea that some would worsen.

The other day, when I was drying off from a shower I noticed some long hairs. I assumed that my cat sat on my warm laundry again, and dismissed it. As each day would pass I noticed more and more hair, sometimes even when running my fingers through it. I had recently gotten a haircut, so again I thought little of it. But as the weeks progressed I noticed it wasn't stopping, by four weeks time I’d begun to notice my hair was seriously thinning. To date, the thinning hasn't stopped, in fact I've noticed my hair thinning everywhere. If the trend continues I’ll be completely hairless in a years time. I do not look forward to this, it sounds very cold.

My skin took began to get drier and drier, in patches. The more anything came in contact with my skin the more likely it was to dry up and get brittle. Constant lotion for nearly a month has solved most of that issue, but it was alarming how weak my skin had become.

My vision is still readjusting, my eyes get tired easily and I've become more prone to headaches. I can’t take anything for the pain, if only to ensure my liver has minimal medications to deal with.

The best new thing about my compromised immune system is my inability to process food properly. I am now apparently allergic to spinach. Depending upon the time of day, if I drink milk, eat meat, or even some greens it causes me immense pain. Increased, and random, sensitivity to air particulates that some days at work, I just sit there and wait for it all to stop before I can get back to what I was doing. There have also been…serious colonic distress issues.

Some of it may have been as a direct result of constant food poisoning, but it has a lot to do with my body’s current state, compromised immune system and the medication slowly dissipating.

I’m sure some of you are wondering, constant food poisoning? Yes, the colonic distress has been such an issue that I sought medical advice, and that was their conclusion.

Doc: …Did you eat anything unusual prior to the event?
Me: I had a really good burrito.

Doc: And the second time?

Me: Was also after a burrito….

Doc: ...You may have an issue with your gallbladder... did you eat lunch today?

Me: Yea, around eleven.

Doc: Burrito?

Me: Yeah.

Doc: It’s really a weird coincidence, but maybe you should stay away from burritos.

But on to the good news!

There is a company here in San Diego, which does a very unique dialysis. Currently they perform the operation in India; last I’d heard it was around ten thousand dollars and four weeks long. Doing this would cost me my job and around twenty five thousand out of pocket.  It’s a lot of money, but if it works, it’s worth it. Luckily, I won’t have to risk that much. Recently they've been able to bring the time down to around a week, and they’re looking at replicating operations in the United States soon.

My hope is that they’re operational and FDA approved in the US by the time I can do my treatment.

The dialysis beforehand will not cure me, but it will “cleanse” my blood, making treatment easier. If the dialysis is not FDA approved, I imagine the cost being around twenty thousand for the week. But if improves my odds, It must be done.

The future looks good, however far away that may be. In the meantime it’s about staying healthy, and staying away from burritos.