Friday, February 6, 2015

Harvoni / Hepatitis C

John has been taking the new Hepatitis C treatment, Harvoni, for one month.  The only side effect he has experienced is an occasional mild headache.  Managing this drug while on dialysis has been a bit confusing, as it is new territory for all involved--both John and the medical professionals.  HCV is a blood disease that affects the liver, so the prescribing doctor and manager of this treatment is in the Liver Center at BIDMC in Boston.  This medication is new, and they focus on the liver, which makes the complication of no kidney function and artificial filtration through dialysis a bit of a mystery to them.While taking Harvoni, blood work is done to monitor several variables.  One of them is kidney function.This measurement is horrifically bad for John.  This is not surprising, as he has no kidney function at all--but we had trouble communicating this to the liver center.  It's not as if he would lose any kidney function.  HE HAS NONE. They wanted him to stop taking the medication!

After a visit to Boston this week and some 'big picture' advice from our local nephrologist, we do have a plan of action. I have mentioned him before, but I don't know what we would do without this nephrologist.  He is brilliant.  John will continue to take the Harvoni.

The best news this week:  the blood work indicating how much of the HCV is active came back today.  The viral level is down to a trace:  barely detectable.  The medication is working!!

Happy weekend everyone!  Love to all!

Sunday, February 1, 2015


You know how when you listen to Grouplove you get the idea that the fantastic energy you feel comes not only from the notes being played but also the people playing it?  That somehow the sincerity, playfulness and intensity translates--even into the recorded version? At a Grouplove live show, that feeling is 10-fold!

We travelled to LA to attend the Grouplove benefit show for John last weekend. Other family members went for the weekend as well, and we got to spend time with Christian and Hannah outside of a concert venue. So many people came together to make this happen--all of Grouplove: Christian, Hannah, Ryan, Andrew, Dan and their manager Nicky; the Troubador, John's family, my mom who came to Connecticut from Wisconsin to take care of our kids and the house, and all those incredible Grouplove fans!

The show was created to raise money for the John Toomey Kidney Fund. The feeling of community and support is equally sustaining--so grateful to be a part of it.

Here are a few of my photos from the evening, better shots are coming from beautiful photographer Anna Lee.