Sunday, January 11, 2015

Many appointments

Dialysis has been fine.  We blew an electrical fuse one day last week and had to learn how to do an 'emergency manual rinseback' with the machine off.  It was fairly dramatic. We also did bloodwork and sent that out to check levels that can vary due to the dialysis process.  Anemia is creeping up again, so we are waiting to up his dosage of Epogen that should help with energy levels.

More on Harvoni: click here to read an article from this week about the deal made between the maker of the drug and our insurance company.  We were very lucky with that timing.

For those of you who have ever wondered what a pill that costs $1,125.00 might look like, here you are:

This week brought many appointments.  Here are the basic updates:
1/5 and 1/9-Cardiology

Overall, everything is fine.  He continues to be in sinus rhythm, and his heart rate is a bit high.  The cardiologist heard a strange aortic valve sound, which is likely from the fistula in place for dialysis, but he ordered an echocardiogram for Friday to be sure. Waiting for reults on the echo.

1/6:  Physical Therapy and Podiatrist
The tendonitis is healing well.  Only a few more PT appointments, hopefully that painful injury will resolve.

1/7:  The Liver Center in Boston
John went to Boston to pick up the Harvoni to treat the HCV.  This is the expensive new treatment that will likely cure the disease.  He took his first pill last night!

1/8:  MOHS surgery
The most painful appointment of the week was the removal of skin cancer on his left hand.  He is very sore, and can't take anything for pain because of his liver disease.  He puts his needles in for dialysis with his left hand, so he needs to use it. 

Sunday, January 4, 2015

Fantastic New Year Update

On December 31, 2014 at 4:30pm, we got word that John was APPROVED for the HVC medication by our medical insurance company.  The approval covers Harvoni, the newly approved combo pill used to treat hep C.  This will be 12 weeks of treatment, which will potentially cure John of the virus.

This is some awesome news.

John will be the only patient (anywhere ever) to use this medication while on dialysis, so it will certainly take some tweaking and monitoring to get the dosage correct.  Also not sure about side effects and the potential need for a second course of treatment...but we'll handle those if they come up.

We are thrilled to be starting 2015 with this news!  Feeling lighter and even more hopeful...

Some details on Harvoni:

Much love to you all.  xo