In February 2014, we learned that John's transplanted kidney was beginning to fail after 22 years. It is possible to live quite well with minimal kidney function, so we had the idea that John would have one or two years before he would need dialysis. Things changed quickly from there! Kidney function rapidly deteriorated, and John's energy level went down with it. By March we were 'applying' to the BI Transplant Institute for consideration for another transplant and preparing for a new reality of daily dialysis. April brought a hospital stay with cellulitis. May and June brought continued deterioration of John's health in general, and the realization that we would be in a very difficult financial situation if he were unable to work. He had a surgery to insert a port for dialysis, and another surgery to create the fistula for cannulation on hemodialysis. In July we began full-time training for home hemodialysis at a clinic in Bloomfield, CT. He cut his hours at his construction work in half, relying on short-term disability insurance. John was at the clinic for 8 hours a day learning the process and having treatment on the machine he would eventually bring home. Last year at this time, he was using a port for hemodialysis, waiting for the fistula to become mature enough to use. By the end of July last year, he had developed a fever, and spent time on and off all through August at St. Francis Hospital trying to determine the source of infection. A few nights his fever hit 104 degrees. We never did determine the exact cause, but a boatload of doctors and tests were involved. He ended up on IV antibiotics for 6 weeks, and slowly improved. He was home from work for 12 weeks.
In the meantime, Hepatitis C and hemochromatosis had taken a toll on John's liver, and he was very close to needing a liver transplant in addition to a third kidney transplant. The transplant team informed us that the HepC would need to be cleared before he could be active on the kidney transplant list. The new treatment was just available in the states, under the brand name Harvoni. It had not been tested on dialysis patients, and although it offered almost a sure CURE of the disease, the cost of treatment was roughly $100,000.00. On New Year's Eve at 4:00pm, we got a call from the pharmacy saying that John had been approved by our insurance for the treatment. An excellent start to 2015!
Home dialysis had become manageable, and he completed the course of Harvoni. He was back to work full time, and I landed an awesome full-time teaching position here in our town, and although our daily routine was different and hectic, we had found a new normal without an immediate health threat. John shows no sign of HCV. There have been issues with a herniated disc in his neck, and lots of skin cancer. We handle those as they come up. With the help of friends and family through fundraisers, we managed to hold on to our home and keep things 'normal' for our kids. We also have a specific fund set aside to help when it's transplant time!
The whole situation has revealed relationships all around--not just within our family but also with our extended circle of family and friends. It has been completely unpredictable. Family and friends have rallied and created opportunities for fundraisers. Near strangers (and celebrities) have stepped in to help, friends have consistently shown up, put up with our new 'normal', and helped with our kids.
|John and his cousin Christian Zucconi of Grouplove and Aloke|
Now we find ourselves in July 2015. Still here! Kids busy doing teenager things, John working at a new job and feeling healthier than he has in years, and doing dialysis in addition to working full time. The skin cancer is a real hassle, he is having surgery on 7/15 to remove 3 cancerous spots, and had multiple pre-cancerous spots 'burned' off a few weeks ago. So our daily life may appear stressful to most families...we are in a much better place than we were a year ago. We plan on building on that and not dwelling on the difficulties. We are grateful to have a relatively normal family life.
This month brings a big appointment at BI Liver Center, when we hope to get the official news that John is HCV-free and he can be placed on the ACTIVE list for a transplant. This means that he can get a transplant from a deceased donor (the wait is 5-7 years) or a living donor. A living donor is best for many reasons.
We are hopeful about a living donor, and several individuals have come forward to be tested. This is a humbling experience. Hopefully more on that soon.
John would not be here at this point if we didn't have the guidance of his local nephrologist. Dr. M is very local--about 5 houses from us. We first met at a block party about 8 years ago (hosted by a neighbor who has connected us with a potential living donor!). He is the best of the best. Seriously, we have had many doctors between John's kidney/liver disease, my heart disease and failure, and Lily's open heart surgery. You might say that we are professional patients. This doc has the balance of being extraordinarily bright, experienced, an excellent listener, and having outstanding interpersonal skills. He sees the big picture. He puts up with me. I have his cell phone number, and he meets us at the ER, even at midnight in the aftermath of a Lil Wayne concert in Hartford.
Thanks to all of you. The next chapter is looking toward a kidney transplant. We are ready!
LOVE & LIGHT,