Salternatives

Damnit, who turned the electrolytes off?

The last week of September always seems to be a rough time in my life. Whether it's the end of a serious relationship, the catastrophic failing of treatment or simply my consistent return to a decompensated state, the time never seems to be so grand.

It's become such a theme in my life that I can't seem to kick the Green Day song until it feels like October again.

As a cirrhotic liver patient, a low sodium diet is routine and a relatively high protein diet helps me rebuild the muscle loss due to my decompensated state.

When the liver gets to a certain point, it stops giving a shit about this and demands more sodium. I started to notice a desire for salty foods unlike ever before but I really thought little of it. My body even began rejecting higher levels of protein, either by making it feel unappealing or forcing me to eject it from my system.

With all the other changes going on at the time it was hard to dissociate it with some kind of change in my system. As I had been moving living situations, my body began to get more and more tired. Eventually after a week of moving boxes and unboxing things it became crunch time in retrieving and wrapping up the old apartment. Unfortunately three days before we were supposed to vacate I had spent more time being exhausted than being of much use. Wednesday 9/28 was the last straw, halfway through the day I was brought over to my parent's house as I could hardly stand. There I was watched carefully as I began to grow more and more tired still. On Thursday morning I briefly felt better but as the day would go I began to get lethargic and my ability to stand was compromised due to balance issues. I went to urgent care as I had a terrible experience with the ER a month ago. After waiting for near an hour for some kind of answer from the attending physician my father and I left for the ER as they alone could quickly handle the situation. Traffic that night caused us to wait further but thankfully during our waiting my GI called me and she helped prep the ER for my arrival.

The pain became excruciating, I was in tears. My mother, who worked nearby, was able to help walk me through the check in process. With my doctor having prepped my entry and my visibly decaying jaundice, the pain alongside made the proceeding moments hazy to recall. As they began to gather the necessary information as to what was happening with me they began my IV. An intern introducing herself as such asked if I would be okay with her attempt at the IV. As my veins are like highways it's hard to miss, but it does happen. As it would this time, the second spot they chose was less desirable and the needle stick was also painful. The pain medication would ease this issue over the course of the next few days.

As they moved me to my room they tested the blood they'd drawn to get a better picture as to what was going on. As the night would go, the pain would come and go but my tiredness remained. My mother stayed with me the first night to assist with minor things as nurses and their aides were slow to respond during the evenings. The second night my friend stayed with me, it was unexpected, and he was extremely helpful and helped make my stay easier. By that Saturday we had come to find the culprits of My extreme exhaustion and pain. My sodium was dangerously low, my calcium was as well, and my ammonia was very high.

When sodium gets too low it can cause seizures and exhaustion, if it gets too low it could kill me.

My calcium being low only added to those elements, and ammonia being so high puts me at risk for serious brain damage and a potential coma.

The interesting phenomenon is that I do not seem to display the typical flapping that occurs with the hands of patients with Hepatic Encephalopathy.

They continued my liquid restriction(1200mls) to help prevent me from losing more salt. It was arguably one of the harder things to deal with as everything made me thirsty.

On Sunday night I had delayed my pain meds to return a phone call.

The result of the call and reaction left me stressed out and upset, the next day I was taken more seriously and the nurses and aides almost began to know me as I'd been there so long.

I am on the liver transplant list, and due to my presently high bilirubin my MELD score puts me near the top. Often I am second or third in line and as an alternative I am contacted for the potential transplant.

I got a call at 10:49pm from transplant

I explained to transplant that I was presently in the hospital, they said they'd need to speak with a nurse

and hear my charts over the phone or faxed, so I asked my nurse "to come here now to assist transplant for me so that they can determine if I'm in the condition to transfer over."

and explained that I need her now. 'immediately as this is a time sensitive matter'
(Normally a nurse leaves a direct line for me to contact them, she however did not feel the need to do so. Telling me she didn't have a phone.)

In the mean time I was talking with transplant about my options and when speaking with them I told them how slow the nurses/CNAs had been the last few times I've asked for anything they said to have me call them back when my nurse arrives.

At 10:51pm I had asked for any available nurse.

At 11:10pm I again explained the urgency of the situation and explained it once more

At 11:15pm a CNA came in and I explained the situation AGAIN, and said get me my nurse now.

At 11:19pm she moseys in.

I explain the situation to her, her response first was that of disbelief "transplant is calling so late at night?"

So I told her: yes, that is correct, called them back and handed her the phone

She read off the numbers to them and then passed me back over

And they explained that they'd need to transfer me hospitals now.

*Meanwhile my nurse wanders out*

Engrossed in the conversation I explained that they should begin the transplant procedures and I would contact my parents to make the decision.

As I am not in the emotional or psychological state to make this choice.

As I notice my nurse's absence, I message over that I need my nurse to begin transfer procedures

And the lady on the end of the call button messages me, "okay why don't you wait to tell her yourself"

So I tell her NO. THIS IS THEIR NUMBER. HAVE MY NURSE CALL THEM.

The Nurse or CNA on the call button begrudgingly wrote the number down.

I contacted my parents, and after about 15 min of deliberation both say no.

So I call transplant and cancel the request then call my nurse over the button

And explain we no longer need to go through with it. As it turns out this was unnecessary as She hadn't even started faxing over the paperwork. And then, and I asked for ice, explaining my last pink cup (500mls) she instead decided that I only have 300 mls left for the day instead of 500, refusing to get my last cup and reducing it based on her whimsy. I asked for my pain medication, and just cried from the entire experience. It's a tough call to take, and a horrid realization that as a transplant patient not only does someone need to die for me to have one, another person could die as a result of my taking that liver over them. It's something that goes through my head every time I get this call.
I took down notes using my call log as a time log to note who I talked to/when.

When I explained the situation to the nurses the next day, they took me seriously as I thumbed through the notes I'd taken that night. My nurses indicated to me that my nurse from the previous night did in fact have a direct line.

These facts made me feel like my nurse from the previous night didn't trust me and didn't take me seriously. So when every nurse I spoke with afterward showed a modicum of respect I was extremely thankful. Several nurses and doctors came in to help build a better system for dealing with transplant patients and took my criticisms to heart, from those conversations on I got along very well with most my nurses, as I normally do.

I was switched over to a normal diet with less protein. So my diet went from 1000mgs salt with 100g protein to 2000mgs salt with 60gs protein, in a 3,500 calorie diet.

Too much protein builds up ammonia, which causes hepatic encephalopathy in those with decompensated livers.

The sensitivity and pain remained, and as magnesium was fed into my IV, it burned so much that I required pain meds before and after it. My body's electrolytes were being forcibly rebalanced, and overall I had begun to feel better.

I could walk around and I began with small walks on my own around my room, eventually expanding my walking across the floor, to laps around the floor itself. Picking up saltines along the way. My docs worked with me to assesses how to manage the pain when I left the hospital and he suggested Tramadol.

Reluctantly I began taking this new pain med.

It took a few hours to release me from the hospital, but in that time I put in an order for delicious ramen soup from a local ramen house, as I needed to maintain my new sodium levels.

I drew a happy Halloween Nightmare Before Christmas message on my board as I left. With the IV out of my arm, I could see the full extent of the hematoma.

 

Home! Even when you've got highways for veins, people can still miss. I'm out of the hospital. My sodium and calcium levels were dangerously low. As a cirrhotic liver patient it's important to watch my electrolytes like a hawk. As my liver had a very sudden about face regarding it's sodium needs. Magnesium and potassium via IV burns, especially if the IV isn't a great stick to begin with. #HCVME #blood #electrolytes #liver #cirrhosis

A photo posted by Rick Nash (@defnotricknash) on Oct 5, 2016 at 4:47pm PDT

During all of this; my friends stepped up and took care of every last bit of the move. They made time in their busy schedules to stop by and stay with me for good lengths of time, all the while helping me when I was unable. To say that I am grateful for them is hardly enough, this experience has made me appreciate them that much more.

I'd noticed many friends reach out to me via social media, even the date that I had to reschedule checked up on me. Although this was not my first rodeo, I've never felt so failed by my own body, and by my nurses. I've learned a lot of depressing things at each hospital visit I've had but this one was by far the most stressful and emotionally challenging.


Life is not easy, but in moments of need, those who are close to you, can make you feel more humble and grateful than you'd ever thought possible.

The Transplants

I received the call at 8:39 PM

I was expecting a call from my parents when the phone rang. When I saw it was from a restricted number, I started off apologizing saying "Yea, I meant to call you back sooner, sorry about that." A little confused, the man asked my name.

I was playing Sid Meier's Civilization 5 with a friend at the time, a very mellow video game. The man began after he confirmed who I was, "Hello Rick Nash, I'm calling to tell you that you have a liver offer." My eyes became transfixed on the wall as he explained to me the details. I was jarred from my seat standing, as if that would help with understanding. He explained all of my options very clearly, I could take the liver, or not and it would not affect my standing for a transplant. There was one hiccup:

It was a high risk liver with HCV.

I told him that I'd call him back with an answer. I had to act fast, an hour was all the time that could be spared. I spoke with my parents and friends to work it out.

In my present state, my MELD score is in the high teens, which means I'm not in an immediate danger. However given my proclivity for the ER, I seem to find myself in life threatening situations every so often. And if I were to be hospitalized it would likely result in my needing a liver.

With that in mind, taking the liver offer becomes a pre-emptive strike approach. If I take the liver it would take a year for my body to get used to it. By that time I will decompensate and be worse off than I am now. And I may also be unable to take the new treatment(s) in 2016 while I'd recover. This pre-emptive strike is more about risk mitigation than anything else.

Besides the affect of my end stage liver disease, I'm otherwise healthy. I'm young and there is little information on recovery following a treatment for young patients (let alone with MELD scores). I could potentially live for a few more years as I am, before needing a transplant. And there are two upcoming treatments which deal with my scenario and trials I could participate in.

When laid out in front of me, the decision was clear. I'm in it for the long haul.

After weighing the options, I called him back and told him I will pass on the liver offer.

When I signed up for the liver transplant program two years ago, I hadn't yet realized just how suddenly these kinds of things are. 

A liver offer has a very limited amount of time to stay viable,

and I have to be ready at a moment's notice to be at that center when the time comes. Which also means I need to have my phone near me at all times.

In the end it I feel it was a potentially worse short run decision with better long run results.

Today is World Hepatitis Day.

Over 400 million people around the world suffer from a form of Viral Hepatitis. In the United States Over 36,000 people die every year from liver disease.

Around the world over 4,000 people die every day from Viral Hepatitis.

It's known as the silent epidemic, because for years it hides, not displaying any symptoms.

I spend a lot of time talking about Hepatitis C, because it's been eating away at my body since I was born.

But this post is different. It's mostly about the other two major forms of Hepatitis.

Both Hepatitis A and B have vaccines. While Hepatitis A is unlikely to kill you it will make you sick...for months. Hepatitis A can run its course and rarely develops into anything worse. In an otherwise healthy adult Hepatitis A will be like the worst flu you've ever had. In a person with a compromised immune system, it can be life-threatening.

Hepatitis A is transmitted typically via the fecal-oral route. Like C. Diff and other forms of food poisoning you'll get it from (feces)tainted food or water.

Hepatitis B usually develops into a chronic illness. Like Hep C it is a silent killer often slowly destroying the liver. There are treatments for Hep B, but since there is a vaccine, focus is more on prevention than treatment. Like Hep C(HCV) there is no cure, while someone with HCV can be cured by clearing the virus through Sustained Viral Response, this is not the case for Hep B.

When someone is diagnosed with Chronic Hep B it is (for now) a life sentence. Treatment for it often is required as a daily pill to prevent the viral load from increasing and causing more damage.

This year the WHO announced its first ever treatment guidelines for Hep B.


If a person with Chronic Hep B or Chronic Hep C is exposed to Hep A, the effects can be crippling.

Hep A and B vaccinations are available for infants, and can be taken at any time/age and still be effective.

Every year we move leaps and bounds toward better prevention methods, better testing and better treatment options for all forms of Viral Hepatitis.

World Hepatitis Day is about taking preventative measures against Viral Hepatitis, getting tested, and getting treatment.

I am a person with Hepatitis C Genotype 1a Q80k Polymorphism with a decompensated stage two liver.
I was put into the stage four category two years ago.

One year mortality rates

As this chart shows, my odds get slimmer ever year. I'm lucky though.

This year I have an ~89% chance of complete liver failure. If a new treatment option does not appear by the fall, I would not be surprised to need a transplant come winter.

A transplant for individuals with HCV or HBV is not a cure. It's far from it. When the transplant takes, I will re-infect that new liver.

My odds after that do not exist.

Because there isn't a large enough sample size who have done this at such a young age. I've heard estimates of 10-15 years, as I'll likely re-infect the new liver soon after it takes.





Oh! Hello there! Still reading?

Wondering where that 400 million comes from? Well If you look at CDC data it'll point to WHO, if you look at WHO fact sheets it either doesn't say or points to the WHO, The Lancet, or CDC data...So i did some digging. (The Lancet article is about deaths, not in total)

400 million people have Viral Hepatitis which comes from about 240 million for HBV, and 130-150 Million for HCV.

Plus or minus 10 million is a silly think to throw out there when their own fact sheets would have them add up to 370-390 million.

240 million is actually a ten year old low-ball estimate.
The number is based off something called an empirical Bayesian hierarchical model. The number was about 223 million back in 1990, but a 2005 estimate had the number at that 240 we see today. 

They just haven't updated fact sheets to respond to the increase, and i have yet to come across new data. While i lack the knowledge to employ the model it's reasonable to assume millions more for HBV.

So what about HCV? that crazy range of 130-150 million people? The numbers are all over the place estimates go as high as 180 million.

Hopefully we'll see a study soon with application of the model so that we can have a more accurate picture.

So I'm sad to say that 400 million is probably a conservative estimate.

Jaundice, HCV, and Me.

I haven't spent much time on here talking about myself lately. I've been wrapped up looking for more information regarding insurance, and trying to analyze the political climate and new concerns about HCV.

So I'll be posting or presenting a handful of potentially peculiar posts until my next doctor's appointment in August. Because It's time I get you up to speed. On moments, with friends, because they're important. Because they help me better understand how I approach this physical and emotional battering ram, with small and subtle gestures.

This past weekend, we had installed a new bulb in the kitchen. It's a bright white bulb, the light had been malfunctioning for a while. Since most of the bulbs in the rooms are soft white and shades of yellow, things appear their actual color.

Most of our lights are soft white or yellow intentionally.
My bilirubin has been bizarrely high since I graduated high school. I've always had a shade of yellow to my skin and dull eye whites. I've learned to obscure it with color, lighting and getting a little tan.

My brief experience with extreme jaundice confirmed what I assumed would be the case.

Call me.. Golden-eye.

I stick out. Especially as the jaundice also extends to the whites of my eyes. Normally now my eyes have a hazy yellow instead of a typical white sheen. When the jaundice is bad, it's jarring.

When they see it most people can tell I'm probably sick, but it's hard to understand. As it's the only characteristic they see and besides that, I appear healthy.

I was in the kitchen when a friend of mine noticed my jaundice from a few feet away. Concerned, he asked me about it. It's something I can't see without a mirror. It's something I can't tell because I see things with a slightly yellow wash. A camera is best, a selfie under a white light with my eyes wide open will tell me how jaundice my eyes are. I can compare it to something I know to be white.

Panic,
Fear, anxiety rushed into me within a second. I'd have to go back to the hospital. I'd be there for a while, and this could happen at any moment.

It was a sobering realization, that any day, I could wake up look in the mirror and say "Shit. Where the hell are my Go-Bag, Keys and Wallet?"

As much sadness as it brings me, as much fear as it brings me, dwelling on hang ups slows down my response. A response that's crucial and could involve whether I live to make it to the hospital or freeze up and delay timely medical assistance.

For a moment I stuttered, I realized I'd forgotten to take my meds that day. I downed them quickly and I took the photos under two different white lights, compared them to white objects. I was normal, well for me anyway. It was simply the case that my friend had never seen the more pale part of my farmer's tan  under the bright white light.

I'm rather relieved that this was the case. But I realize that it is very likely that I will become more and more jaundice as I approach the need for a transplant.

But I guess it's good to know that at least I'd have survived The Battle of Bunker Hill. So I got that going for me, which is nice.

The Battle of Bunker hill is where the phrase "Don't shoot until you see the whites of their eyes." came from.

Wait, what? This was supposed to be a sequel, not a trilogy!

In five days, I will be finished with the Harvoni treatment. Much to the relief of my friends, I will no longer wait for my alarms of Taylor Swift's" Trouble When You Walked In" everyday at 6:50-7:05 PM.

I will no longer wait for weekly results on my blood tests. In five days I will have my end of treatment blood test.
Whose results rest my future. Will I have ten years left? Twenty? Fifty? Will I wait in line for a liver transplant, only to re-infect the organ and return to my level of damage within a few years?

And what happens when I reach the coveted SVR12 (Sustained Viral Response, the point of "cured")? If I can clear it, if in this game of life-or-death tic tac toe I manage to avoid a fifth cat's game...what does that mean for my liver? What does recovery look like?

I am the extreme, What happened to me at the age of twenty is more likely to happen to someone after forty to fifty years of infection. I am lucky, I came from a tiny likelihood of vertical transfer, and at less than 5% I beat the odds, and live with a decompensated liver so early in life... I have been in study after study since I was sixteen. Most studies bulk young people in an under 40 bracket. Inherently, a twenty year-old and a forty year old have wholly different recovery abilities, which only makes data harder to find/interpret.

What research can I find to help me understand what my future looks like?

Almost none. As most of the F4 and decomp patients are considerably older there is simply not enough data to provide more than a strong inference.
Even the classifications (F0-F4) themselves have been recently been looked at.


Where I sit now, the majority of my liver is...well... to say garbage would be an improvement. How my body chooses to handle the different parts of my liver is the subject of debate.


Whatever parts are near healthy will recover in around a year, the early stage fibrosis areas will recover within a few years. But the worse off the fibrosis is, the less likely it will recover. The last chunk of my liver, is the cirrhotic bit, which probably isn't going anywhere.


While there are some RXs for helping the fibrosis, the level of damage to the remainder of my liver has already been done. It is, most likely irreversible.

This is why I'm so insistent on testing, on looking at your options early. Early detection can prevent situations like mine.

I say a lot of probablys and likelys in this situation, because as I said before, I am the extreme.


So true to my nature, I hope to be the extreme here too, and recover in the dramatic flair that has engulfed my treatments.

Know More Hepatitis

Be #hepaware

I'll stop the world and MELD with you

A lot of my friends and family have heard me talk about MELD scores, but I've never really explained what they mean.

A Model for End stage Liver Diseases score is determined by the functionality of the liver, the level of cirrhotic damage, and pressure/clotting factors.

In my case I am at stage 4, decompensated with a low INR (clotting factor). My meld score hangs out in somewhere between fourteen and nineteen.

A MELD score is calculated by a person's INR (normal is .8-1.2)

Bilirubin count (normal(total) is about .3 to 1.9 mg/dl)

and creatine level (it's gender based, but for a guy it's .7 to 1.3 mg/dl)

That's what it's a MELD score, but what does it mean?


If you have one it typically means your liver is in serious trouble. A medical professional can determine the need for a MELD score, there are online calculators, but a doc is best suited to assessing whether or not someone needs one.

It's not a death sentence necessarily. Here's the probability you'll need a transplant in three months. If you can't get that, well... then those really are mortality rates. In the chart below it takes the range of scores that can exist, and says the likelihood that you'll need that transplant. MELD scores are not permanent they shift, constantly.

The blue area is where I generally hang out, so at in any given month I have about a 10% chance I might need a liver transplant within the next few months. It's something I've lived with as a fact for about five years now. But keep that in mind, I've been alive these five years, well to the best of my knowledge I am.

There are two other points on that chart, represent two recent hospital visits. In September 2012 my varicies burst, and I was vomiting blood, I was lucky enough to know and understand what was going on so I caught it just in time.

Key factors you have internal bleeding where the blood is entering your GI: Black tarry stool, light-headedness (from loss of blood), easier to bruise, stomach pain(it can be mild or even unnoticeable), annnnnd blood farts. There is nothing in the world quite like 'em, and they're the first thing I (and unfortunately anyone around me) notice.
I was in seriously bad shape that day, and my MELD shot up, ironically they thought I had C. Diff, but in fact I did not. After a quick transfusion, The trip was so hazy I don't even remember the endoscopy where they banded the bleeding varicies . About a week afterward, my MELD score dropped in half, and kept going down.

Fast forward two years to September 2014, my most recent and longest stay yet, I was jaundice to an almost comic degree. And somehow I actually contracted C. Diff ಠ_ಠ it was making the resurgence of my HCV even worse, and my MELD jumped up due to my INR hitting 1.8 and my bilirubin between 28 and 32, then slowly went down to the teens as the month passed.

I am lucky to have been able to have the resources I had when I needed them.

I am also lucky in another sense, I am the extreme. Most people with HCV will not have had the problems I've had in the time span I've had them. There is variance to the specificity but you can see some general trends:

"After twenty years of infection about 20% of patients develop cirrhosis and after fifty years of infection, about half develop cirrhosis. "

"Most HCV patients, if untreated, are expected to develop cirrhosis at about 65 years, irrespective of the age at infection. Thus, age itself seems even more important than age at infection for predicting the occurrence of liver cirrhosis."

" In an estimated 20 to 30% of patients with hepatitis C infection, chronic viremia results in inflammation followed by fibrosis and cirrhosis. "

And for decompensated patients it's a little more complicated, and even more uncommon so early on.

I was first assigned a MELD score when I was twenty three years old, to this day that hospital visit is one of my most vivid memories. Since I didn't really display any other symptoms prominently, for this brief time I had compensated cirrhosis. But as more symptoms showed up I moved to decompensated status.

If what the studies I've read are accurate I could be looking at a (near) single digit MELD by summer's end for SVR12, for now I've got about two more weeks left until I'm finished with my 24 weeks of Harvoni.