First, I have not written a health related update in the last few days, because I don't really feel that I have a lot to write about. James and I are cautiously optimistic about his new found stability even though there remain day-to-day challenges and limitations. We make a concerted effort to celebrate the small achievements improvement in James' health status. James is truly doing exceptionally well given the circumstances. He is impressing everyone at the Transplant Gym. He is able to walk longer and further distances, both on the treadmill in the Transplant Gym, and around the apartment, with less breaks and a faster recovery from shortness of breath. As always, James is pushing himself in all regards. He averages 3,000 calories almost every single day, and with that, James has been able to maintain his weight between hospitalizations. Can you feel my pride? James is humble about these daily feats, but I always remind him that I'm aware of the heroic efforts behind the smile.
Last year, James went home to Victoria for Christmas. He was able to spent the day on Salt Spring Island on his family farm with his family and beloved pets. We longed for each other, but there was comfort in the knowledge that James was healthy enough to be home. We were able prepare gifts for our families together, and skype during gift giving to share the joy between families. He was 7 months post-transplant and feeling happier and healthier than ever before. He had passed his 6 month post-transplant assessment with flying colours. James had no complications. His spirometer readings were still increasing on a regular basis. Nothing seemed insurmountable. We were elated (to say the least). James could breathe, and it was easier than in all his memories. It was remarkable to watch James' recovery from his double-lung transplant. I still remember the complete joy on James' face after running across the street for the first time in a decade. I still have that sense of awe for his continuous strength. (It is the same awe that I feel as I watch him struggle to breathe again, but continue to move forward in great strides).
We will always been indebted with gratitude for James' donor and donor family. We thought a lot about them during that first Christmas and holiday season. (We still think about them daily, and thank them for the gift of another day). We could not console the grief of these anonymous strangers, but last year, James and I worked on a very special letter to them. We wanted to find the right words to express our love and gratitude. We wanted to acknowledge the courageous act of organ donation during a time of mourning and grief. We wished to ease that pain with the knowledge that James' life was saved, and his was given a quality of life not known to him since childhood. How do you thank someone for that gift?
James would spend the holiday season with his family, and return to Toronto for his 9 month post-transplant assessment. It was a devastating time for my own family. My Bubie's health was deteriorating, with more frequent hospitalizations, and less treatment options available. Over the holiday break from school and work, I spent almost every single day in the hospital with my Bubie. We painted her finger and toe nails. We read the daily newspaper together. We drew together. We shared favourite memories. We talked and talked and talked. We always did. My Bubie was still filled with a love of life, and determined to find laughter and joy in every moment. I remember these days with a fondness, because they represent a true spirit for simply being in the moment (and loving each and every one of those moments). That was my Bubie.
James came back to Toronto early to say good-bye to my Bubie. I will always be grateful that James was able to be there to hold my hand. We were still embracing James' new life. This was a small reminder of the reasons to keep focused on living (with laughter and joy, of course). The pain and grief is still very real. In some sense, I think it is compounded within the context of our current circumstances. I give myself permission to feel grief in all its forms, but I also have to make a conscious effort to remember the positive. There still exists a depth of happiness. The sadness does not negate that happiness, but rather, I believe it makes it possible, because of the dichotomous nature of the emotional spectrum.
The next few months are a blur (to some extent). My siblings and I all traveled to Israel to celebrate my grandfather's ninetieth birthday. All of my cousins were together for the first time ever. It was wonderful to be surrounded by family, and to celebrate my grandfather's birthday together with shared memories (both new and old). James and I were also starting to plan for our wedding to be in July. James' health and stability were reason to move forward with our dreams for the future. I somehow managed to complete my semester (and degree), and I gave my notice at work to prepare for the move to Victoria with James.
James and I celebrated his 1 year post-transplant anniversary in honor and memory of his donor and donor family. James' lung function had a slight decline after his assessment. We learned that Grade 1 Acute Rejection was found on James' bronchoscopy. Grade 1 Acute Rejection is mild and rarely requires treatment, because it resolves on its own. The decline in lung function was thought to be the result of the bronchoscopy and was also expected to recover within time. Unfortunately, James' lung function didn't recover, and treatment was complicated by the emergence of the Shingles virus (two weeks before the wedding, that is). We had a perfect year with few to no complications, and in truth, James and I felt no real reason for concern (nor did the Transplant Team indicate otherwise).
Our wedding was absolutely magical. It was truly the most incredible evening of my life. I didn't know it was possible to feel the level an depth of happiness and joy. The following morning, James' lung function took a drastic decline. The rest of the year from there is documented in this blog. Everything can change in a moment.
This past year was filled with lessons about life and living. It is important to acknowledge that James and I lit a lot of memories candles for members of our CF and Transplant "family" (including one this morning, for Richard, and for his wife, Paula, always in our hearts and minds). I suppose that this past year was a celebration of life; both lives lived and lives lost.
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