Friday, October 24, 2014

Big Pharma

John had an appointment with his transplant neuphrologist in Boston today, the first one in six months.  When we had the last appointment, we were thinking it could be 1-2 years before he started dialysis. It took only 3 months for the kidney to fail completely, and then we spent the summer dealing with the complications from infection.

Dr. P believes that John is doing well, especially given all he's been through in the past six months.  They discussed the next phase of treatment before he can be listed for a kidney transplant:  clearing his body of Hepatitis C (HCV).  There are some treatments available now, but they can not be used in transplant patients.  The HCV load has remained fairly low for the past 22 years, and recently started progressing.  There is some urgency to getting treatment underway, as John's liver damage is severe enough that he is close to needing a liver transplant.  One of the theories as to why the HCV did not become a problem until recently is that the immunosuppressants he was taking to ensure his immune system would not reject the transplanted kidney also kept the HCV in check.  He is no longer taking the immunosuppressants.  

There is a new oral drug regimen that clears most HepC patients of the virus.  Cures them.  The medical professionals are excited about this, and the trials a few years ago were hugely successful.  The problem is that the insurance companies don't want to pay for this very expensive treatment. Also, dialysis/transplant patients have some restrictions.

In the meantime, a trial was done with the new meds on dialysis patients.  It worked!  The gastrointerologists and neuphrologists are thrilled.  Now they wait for the NIH to finish 'reviewing' the trials, and for the FDA to approve the meds for use in dialysis patients.  THEN the insurance companies get to decide if they will pay for it.  Click on the articles above to see how well that went in other countries.  

So the battle becomes fighting Big Pharma before we can fight the HCV.  John's docs were hopeful about having treatment in December, but it could be longer.  

Modern medicine has saved John's life several times.  It is maddening that we have a cure in sight, and it is up to insurance and the pharmaceutical company to decide if he gets it.  

Next Boston appointment:  November 4.  Hoping for some good news about available treatment for HCV so that we can work on the end goal:  transplant #3.  

Monday, October 13, 2014

The New Normal

I am happy to share that home hemodialysis continues to go well.  Getting on and off the machine has become more routine, and the alarms on the machine less frequent.  Well, we are less panicked about the alarms, as well.

John puts two needles into the fistula in his arm for each treatment.  He has created 'buttonholes' in his arm for easier access.  The fistula is in his right arm, which means he has to insert those needles with his left (non-dominant) hand.

The entire set-up for treatment is in one area, meant to be accessible to John using his left hand to grab anything he needs and to run the machine.  Typically I help get him set up, and then can leave the room and do other things around the house during treatment.  

Once a month, John pulls 6 vials of blood to send for tests.  We have a centrifuge in the dialysis room, so we spin and stabilize the samples before they are sent out via FedEx.  He also administers heparin and epogen during his treatment.

John has not returned to work, but hopes to go back in November.  His energy has been better for about a week now, and we are finding 'the new normal'.  After the complications and severe illness this summer, 'only' doing dialysis seems relatively easy.  

Friends and family continue to help up raise funds to keep up with living and medical costs.  Here is the link to the fundraiser on YouCaring:

Kidney Quest for John

This winter there will be an art show fundraiser attached to  the YouCaring page.  Will share the details as they develop.  We have amazing friends and family!

Next up:  Hepatitis C treatment in December.

We are overwhelmed by the support from friends and family near and far. We are so grateful!