Friday, March 27, 2015

March Update

John is finishing his Harvoni treatment for Hepatitis C, he has just over a week left. The doctors will check his blood for the viral load over the next few months to see if there is a recurrence.  This happens, and a second round of Harvoni has a 100% cure rate. And another $90,000.00 price tag.  The sooner he is rid of the virus, the sooner we can get to the end game:  kidney transplant. 

Other health happenings: the squamous cell skin cancer will be an ongoing battle. John sees a dermatologist every few months for evaluation, and has surgery to remove any spots. The cancer was caused by an anti-rejection medication he took for many years to hold on to the transplanted kidney. 

A few weeks ago we went to the ER for severe chest pain. John was confident that it was not cardiac, but that had to be ruled out. He eventually got a diagnosis of a herniated disc, which can cause pain in places not even close to the disc. In John's case it was chest/shoulder and the tops of his feet. He has responded to physical therapy very well, and no longer has pain. 

Dialysis is still OK. Occasionally we learn some new issues with various alarms on the machine, but it doesn't invoke the urgency or panic that it did last summer. Most of his 'numbers'--the values they test monthly- are good. He is careful with protein intake, phosphorus, and iron.  His hemoglobin count is very low, making him severely anemic. He is tired, but still working and doing dialysis daily. He had an infusion of iron last week in an effort to bring up his hemoglobin. This is counterintuitive to me as he has a disease called hemochromatosis--an excess of iron that he is treated for by removing blood. At any rate, hope to get that red blood cell count up and avoid a blood transfusion because that will make transplant even more challenging. 

The benefit concert put on by GROUPLOVE and fans raised close to $23,000. It is amazing to be part of such a giving community!  The funds are set aside to help when it is transplant time.  More on those options in another post. 

Overall, we are feeling very positive and hopeful about the future!  This wouldn't be true without all of your support.  We are grateful.  Love and blessings to you all.