Hello Everyone!
Thank you for journeying with us on our quest for a normal, healthy life together. For those who don't know me, my name is Laura, and I'm Daniel's wife. We've been married for two years, and have dealt with increasing lung problems for Daniel. Our decision to pursue a lung transplant for Daniel is just the latest chapter in Daniel's health story, but it's been the most difficult yet. To get everyone up to speed, let's go back to December 2013, three months after Daniel's bone marrow transplant and nine months before we got married.
Daniel had started noticing that he was having more difficulty catching his breath and walking. The next day, he was admitted back into the hospital. While we never really got official word from the doctor's what was going on, it didn't take long to figure out that Daniel had Graft vs Host Disease, which had manifested itself in his lungs. When that happens, that is known as Bronchiolitis Obliterans, a rare lung disease that mostly occurs due to a chemical found in popcorn factories, and now, specific brands of vape. I remember looking it up, both in medical journals and online and it had a terrifying prognosis: typically, five years after onset, the patient needs a lung transplant or it has progressed so far that it is fatal. There is no reversing it and no stopping it. We couldn't face that, not only three months after his BMT and before we were even married yet. Even the doctor's never put a name to it and kept trying different drugs and treatments to try and stop his lungs from scarring, and were even hopeful they might improve to some extent.
October 2014: Daniel had a respirologist appointment and his doctor told him he should think about a lung transplant. A little bit of research quickly told me that lung transplants were the riskiest transplant, with only 50% of recipients making it to five years and 25% to ten years after transplant. Two months after we were married. We still couldn't face it, we were still newlyweds and it had only been a year since the BMT which had been such a hard ordeal for us. We were reassured by Daniel's lead BMT doctor the next week that that was not something we needed to think about or face.
November 13, 2015: I still remember that day clearly. We had had a great summer and it seemed that Daniel's lungs and health was finally stabilizing and he might even get a little bit better. That week in November, Daniel was diagnosed with another infection and had to go to Cancer Care every day for IV antibiotics. On the Thursday, November 12, Daniel told me that it sounded like his doctors weren't happy with the rate at which he was recovering and he might be admitted the next day. So, the afternoon of November 13, I took the afternoon off and went with Daniel and Marilyn to Cancer Care. It was while Daniel was sitting in one of those big blue chemo chairs, with others around us in their own personal tragedies that Daniel's lead doctor pulled up a chair. The same doctor who had told us a year previously that we didn't have to worry about a lung transplant was now telling us that if Daniel continued to get infections, his lungs would continue to get worse and he would need a lung transplant. Sooner rather than later. For us, it was like a bomb had gone off. Our ears started ringing and it was hard to hear anything else. We took the evening and went to the VIP theatres. I don't remember the movie, but I do remember ordering everything we could off their menu, with multiple appetizers, milkshakes and dessert! It was not a night to be restrained.
Now: Over the last ten months, we've watched Daniel's health deteriorate rapidly, leaving us with no question that a lung transplant is our only option. Whereas this time last year it filled us with dread, now, it fills us with hope. We've been through months of testing and doctor's visits and we're close to Daniel being actively on the list. Or, at least we were. A few weeks ago, Daniel received a call from one of the doctors on the lung transplant team. In an ultrasound and MRI they had done, they had found spots on his liver and needed the opinion of liver specialist. That appointment was today. Daniel's liver results are elevated and they're not sure what the spots are exactly. They asked us lots of questions, sent him for blood work and talked about setting up a biopsy. The biggest thing though, was how many times they mentioned a liver transplant. While they didn't mention it specifically as a possibility and told us lung/liver transplants were rare, the fact that they mentioned it a handful of times signalled to us that that might become a possibility. There is still more testing to be done and it could still be nothing, but it sounds like it is most likely something. We're not there yet, but the finish line has just been moved back. How far still has yet to be determined.
Thank you again for all of your love and support. I wish we had happier news to share, but it's where we are right now. As we head into October, I wish you all a Happy Thanksgiving with your loved ones.
Wishing for better days,
Laura
