“My husband needs a kidney transplant.” I never thought I would type those words, let alone say them out loud. But I have said them out loud. Multiple times. And sometimes I can’t believe this is really happening.
So, how did we get here? It started on our honeymoon actually. Chris’ feet became really swollen while we were on our cruise and the swelling didn’t go away. When we got back, we were in a period of transition, moving from Fort Worth to Dallas so Chris went to a doctor that prescribed him medication to make the swelling go down but didn’t look into the root cause of the swelling. After we moved to Dallas, Chris went to another doctor who immediately referred him to a Nephrologist (kidney doctor) and he ordered a kidney biopsy to be done right away, as in 2 days later. I think at that point we started to suspect something serious was going on, but we held out hope it would turn out to be something minor. I should add that Chris was diagnosed with a disease called IgA Nephropathy as a child and treated for it. As far as we knew, this disease was “cured” years ago, so we weren’t overly concerned it would be an issue again. Chris had his biopsy done on a Friday and on Monday we got his results back. Chris was re-diagnosed with IgA Nephropathy and his kidney function was so low (30%) that he needed to be hospitalized immediately and start treatment. You’re probably thinking that we shouldn’t have been surprised with his diagnosis given that he had this disease as a child. Well the truth is, we were surprised. As far as we knew his disease was cured and there had been no reason to monitor it in his teenage/adult life. It turns out we were very misinformed. There is no cure for IgA Nephropathy and it is a rare and serious autoimmune disease that causes the immune system to attack the kidneys. It can potentially go into remission, but it is never cured.
So what treats IgA Nephropathy? That depends on the patient and how aggressive their IgaN is. In Chris’ case, his kidney function was so low at diagnosis, the only treatment was a combination of Chemotherapy and high doses of steroids. In October 2016, two days after the biopsy results came back, Chris was admitted to the hospital and had his first round of Chemotherapy. He was released a few days later and the rest of his treatments were outpatient. He had 5 treatments of that Chemotherapy and they did not improve his kidney function. We regrouped with his Nephrologist and decided to try a different kind of chemotherapy. He received 4 treatments of that (so 9 total treatments) and again, no improvement in kidney function. In fact, his kidney function had decreased to 20%. We were told in February 2017 to start preparing for a kidney transplant.
So, here we are: July 2017 and Chris’ kidney function has continued to drop. He is currently sitting at 13% kidney function and we are knee-deep in the kidney transplant evaluation process. We are hoping for a transplant sooner than later, but there are still a lot of unknowns.
To say we have been on a roller coaster ride would be an understatement. I’m not sharing our story for sympathy or attention, and to be honest, I debated whether to post this at all. But ultimately Chris and I decided to be open about what we are going through because we know we aren’t the only people going through it. Life isn’t perfect and bad things happen and we can’t avoid it or shy away from it. Maybe by sharing our story we can turn this into something positive and reach other people that are going through the same thing and let them know they are not alone. Chris and I have tried our best to stay positive and we will continue to do that in the road ahead. Thank you for reading this and stay tuned for transplant updates and more kidney-friendly recipes.