Home one week, and the drugs are gone | yosoyrosa's Blog

 In case, my friend, you're new to being around a liver disease patient, let me reassure you that the #1 symptom is common, absolute fatigue, tired all the time and no energy to go anywhere.  In our home, the couch becomes a bed and TV command center during treatment, and napping occurs at any time.  No food sounds interesting but boredom leads to munching.  Requests for take-out comfort food such as pizza gets called out.  I'm tired too - putting in 10+ hours plus commute just to come home, make dinner and clean house isn't appealing either, so pizza this week, along with chili and tonight was an easy barley spinach risotto for another warm-you-up from inside dinner.

The stock market and economic downturn have setup camp in our living room, election sound-bites are zapped away for some cheesy 80s movie a few channels down, flip - spanish, flip - spanish, flip - korean, flip - and its obvious boredom has set in and the calls from friends have dwindled.  Construction work is out, our network of contacts don't know if he'll be able to do the work, and projects aren't getting funded with few remodeling or home improvement loans being awarded.  Flip - CSI rerun, flip - Survivor rerun, flip - become an expert on everything after all the episodes of "How its Made" and discovery channel specials.

The blood pressure readings dropped shortly after the last capsule of antibiotics.  The past few readings from the new home monitor are back in 120/70 range.  The Norco pills are gone too, and so has most the pain.  Occasionally there is a quick stab of reminder up under the ribs, or in the groin especially after turning the wrong way.  The purple blackness that had spread across the lower abdomen is now ringed with the red and green of a healing bruise, and that tiredness.

Our good doctor called today, I'm disappointed I missed it.  Apparently, after meeting with the attending staff there was some information we needed to be aware of.

• They were going to do a TACE of the left lobe
• They may have to treat the right lobe again for more
• This could turn out to be a series of treatments
• The recommendation is to start the Nexavar right away, not wait until after TACE treatments are done in hopes of keeping new tumors at bay
• This medication is very new, and very expensive, insurance may not cover it
• They will be monitoring the case for a few months after TACE, and several more before his score will be at a point where he'd be considered for transplant (MELD score of 30+ norm for recipient)
• This university hospital would not consider a Hep C donor, even if now virus-free
• Live donors are preferred to be 18-30 no medical conditions, 30-50 very healthy

The criteria just eliminated the possible donor we did have offer, which explains his sour mood.  We may have to reach in our pockets to buy health, as I doubt that we'll qualify for the patient assistance program judging from the college financial aid responses we've received past 2 years.  So now we have the faxed prescription, and form to send in to the Nexavar REACH program, and our fingers are crossed.  

Our daughter is away at the university, I'm heading off to a conference, so in comes the cousin from the southern states to take the reigns for the next few days.  Good!  I'm sure her comfort food is a better than the take out I brought home this week.