I'm incredibly exited today as I'm on WEEK FOUR OF TREATMENT. A lot has happened in the last week, but two liver specialists in one week will tend to do that.
Let's start at the beginning of the week. Early in the week I met with my transplant doc, she had the results from the bloodwork I'd done on Friday as well as the past few weeks to show how I've progressed.
ALP is down
ALT is down
Bilirubin is down
But what does that mean? Besides that boy needs therapy? It means that my liver function is returning to a state of normalcy. Something I haven't known for years. It means my brain is operating better, my organs are less burdened by the wretched fuel my liver had bestowed upon them in earlier times. And most importantly it means that the treatment is working.
I'd post the numbers, but I'll save that for a more technical post, I'll even make some charts for your inner data nerd.
One number which is a serious indicative factor of the progression rate of the virus is the viral load. A number I have yet to receive, but will know of it soon.
In the last few days the state of my liver's functionality has allowed me to stop (or at least pause) taking my diuretics and lactulouse. My body is holding on to vittles more proper like. I can engage others in conversation on a scale I'd nearly forgotten that I had the capacity for. In a weird way I liken the difference to Charlie's transformation in Flowers for Algernon.
While my body is functioning on better fuel it doesn't mean that the liver damage is healed, it means that the process is no longer as inhibited. it means the treatment is working well. My symptoms are all very present, and remind me when I get too sure of myself, that they are still a force to be reckoned with and not to be taken lightly. The side effects however have lessened to some degree, my photosensitivity is slowly becoming more bearable and the headaches and side pains more predictable.
Diet has also played along well with this. I've been avoiding high salt foods, with the help of a friend I even found a no salt bread at Sprouts. It tastes a little rougher but it's not that noticeable. My exercise routine has been irregular, but still it's as intense as I can make it.
I learned two pieces of information on Tuesday from the transplant doc that were rather puzzling. The first was that my treatment was 12 weeks, not 24 as I had originally thought.
The reason for this is a little complicated:
For a decomp Cirrhotic patient, such as myself the efficacy or likelihood of success on the 12 week program is about 86%. for a comp non-cirrhotic patient the efficacy is about 94%. At 24 weeks both patients, cirrhotic and not see about a 94% efficacy rate. Since I'm ordering off label(not using one of the FDA approved combos) my insurance only covers so much of it. The docs tell me I'm on the 12 week slot. Here's why this is better while it initially may seem to suggest otherwise. There is a new partner drug to come out in October which will be the FDA approved partner to Sovaldi, both drugs will be manufactured by Gilead. So if I were to fail this treatment another will be more quickly available to me while on the 12 week treatment as compared to the 24.
hmmm...that's a little complicated... here's the TL;DR of it 12 weeks is better because if I were to fail then a new treatment is more readily available and with higher efficacy AND FDA approval sooner than if I were to take 24 weeks.
Transplant doc also told me a seemingly odd piece of information. That drinking two cups of coffee per day is good for the liver.
Okay, I should mention right now: I hate coffee. I hate the smell of coffee, I hate everything about coffee.
but since learning this I've been using my French press to down two cups a day. where I begrudgingly sweeten it with Hazelnut syrup, almond milk and agave nectar.
Could I make that sound more hipster? Oh I guess if it were Turkish coffee. (that's next week, as I'm trying lots of blends to find one that is the least repulsive. Go Big or Go Home, amirite?)
My meeting with my GI this last Thursday was equally as fruitful, not only did we confirm the 12 week situation (I had mistakenly thought it was 24 week due to multiple conversations on the topic leading to both conclusions) but that I'm responding very well to the treatment. I did learn of something still troubling however. My platelet and hemoglobin counts are lower than they should be. I'm borderline anemic, which helps explains why I'm more tired often.
Overall this treatment is doing amazingly well, not only is it more bearable, it's working.
but I've been here before, the triple therapy worked, at least initially. I shot down from a 9 million viral load to around 200, while incivek ravaged my body it did assist my progression against the virus. I hold onto hope and I believe this will work, but I understand and humble myself to the potential reality of failure.
This, is how I've remained resilient, while all of this good news is fantastic and if it holds, exactly what I want... I must constantly prepare myself for either situation, so that I may be ready for my next trial if need be. But in the mean time, this spoonful of sugar helps the... Coffee go down.
ALSO TOMORROW, SATURDAY IS THE LIVER LIFE WALK!