holidays in the hospital

As many of you know from "James' Quest For Lungs" on Facebook, James spent a large portion of the holidays in the hospital. James' resilience remains as remarkable as always, along with a positive attitude to compliment his enduring (and seemingly infinite) optimism. He is always moving forward with complete acceptance of the recent past and readiness for the distant future. He finds the light in the hardest of moments and warms my heart with these sweet reminders. 

James and I spent a wonderful Christmas Eve with my father's family that was reminiscent of James' childhood memories. He relished in the joy of being surrounded by the comfort and warmth of family, and the constant demands of canine and feline affections. Unfortunately, James awoke Christmas coughing green and hugging a basin. We opened presents and stockings between ice packs, back rubs, and a competing pile of Kleenex to wrapping paper. He slept for a while on the couch to be near the family, but by the afternoon, James was feeling miserable. The on-call medical team gave recommendations to head towards the emergency department back in Toronto for a highly probable admission on Christmas day. 

In all honesty, I was disheartened. I have the previous experiences to know that lung disease does not take a holiday, but I continue to hold out for hope of a different future. James was promptly admitted onto the transplant floor and given the luxury of a private room for those on isolation precautions. A few days later, James was discharged from the hospital, and back at home to snuggle in bed with me. It was then that James turns to me, and with all the reassurance in the world, remarks, "You know, I really did have a nice Christmas." That, right there, is James. He can always find the light (and without the need for conscious effort). 

The following day, James was re-admitted through the ER by ambulance. It had taken almost thirty minutes and the kindness of strangers to get James home from the hospital in his wheelchair a few days earlier, because of escalating snowbanks and uncleared sidewalks. We couldn't venture across the street to the ER alone without a personal shovel or wheelchair snowplow. We wouldn't have made it very far, and James needed some immediate attention. The paramedics were exceptional. We truly appreciate the generosity of simple kindness.

James was given a quiet and dark room to find some comfort and sleep. We were pleased to learn that his lungs remain clear from infection and fluids. The gastrointestinal concerns are similar to the past: a form of pseudo-blockage that is common in Cystic Fibrosis. James has had previous repeat episodes that seem to accompany his low lung function and weight status. This is an unpleasant, but familiar path. We will be able to wade through together.

That's all for now. I will continue to update. Thank you to everyone for your prayers and warm thoughts. We feel so grateful and humbled by all of your love. (Our wall of love continues to grow back at home. You can message us here or on Facebook for our address to contribute). Please continue to share our story to help spread the word about the importance of organ and tissue donation.

reflections of year and other ramblings

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.

happy holidays!

sick

I've been fighting a viral respiratory infection for the last week or so. It is nearly impossible to take care of James, while also managing to take care of myself, and prevent the spread of infection. I have been constantly wiping down all of the doorknobs and surfaces of the apartment, and washing my hands with the frequency of a compulsion. James has been making all efforts to help around the house within the limitations of his disease. My tolerance for being sick has its own limitations. I'm ready to return to my previous level of exhaustion and fatigue. I suppose it really is all about perspective.

We have had a few days without appointments, because I have not been well enough to take James to the Transplant Gym. Cooking, dishes, and laundry aside, I have been sleeping, sleeping, and sleeping. Unfortunately, I'm not feeling a lot better, and James has to return to the hospital for appointments. We head out early in the morning for James' weekly lab work and I will have to find the energy again this afternoon to head back to the hospital again for physiotherapy. I won't be able to stay in the Transplant Gym, because of my infection, but I will find a corner to sleep, set my alarm, and return to pick him up within an hour and a half.

I'm disappointed that I also won't be well enough to go to work tomorrow. I've been working as a behavioural therapist with a child with Autism Spectrum Disorders on Saturdays. It is a welcome break for both James and myself. James spends some time with a friend, and escapes into his computer for a few hours. For myself, I've always been incredibly independent, and the isolation of the transplant world has also mean a sense of identity loss. Our world has become smaller and smaller. Despite our best efforts, it can feel as though our lives revolve around Cystic Fibrosis and waiting (and waiting and waiting) for re-transplant. My Saturdays are an opportunity to re-engage with the part of myself that has drive and passion for working with children with special needs and disabilities. I'm working with a sweet child with a high dependency for a rigid routine and I feel guilty that my absence will also impact the child's day.

On a side note, our wall of love from family and friends has grown and grown to include a second wall. We are so grateful:

 

love love love

be an organ donor

There have been a lot of emotions in the last few days. Toronto has been doing a record number of lung transplants, and James and I have seen many friends from the Transplant Gym breathe easy for the first time in years (without the support of oxygen). There is an incredible amount of joy for them. We remember that feeling. We remember that glow. We also know of the fear that comes with complications. It is hard to find words of comfort. These friends have become part of a very special community, or rather, a family of tightly knit lives. We understand the experience at a level that is beyond description. We don't need words. We lean on each other. We celebrate with each other. We mourn with each other. We feel for each other at a very deep level. There is no competition. We want each and everyone of our loved ones to get the right set of lungs, at the right time, even with the knowledge that about fifty percent will not survive the wait. That later part is harder to talk about. We need to believe otherwise, but there are always reminders of the reality of living so close to death.

This week, a friend of mine, a "Cyster Wife", said good-bye to her fiance. It was her birthday, and had been exactly a year to the date of his proposal. He, like James, had Cystic Fibrosis, and was at 12% lung function awaiting a second double-lung transplant. The CF Wives come together during these times. We pray for the family of loved ones lost. We send love (and love and more love) in their direction. We feel the pain as though it was our own and grieve alongside them. We hold our loved ones closer and closer. We all deserve to breathe easy. Cystic Fibrosis is a cruel disease.

The lack of available organs for transplant is another part of this story. Please visit the links of the right to register online in Ontario and British Columbia. Talk to your friends and family about your wishes. We need to open the dialogue. It could be you. It could be someone you love.

Edit: Good news. Another friend got his call. It will be a few more hours to find out whether the lungs are a viable match. 

According to the Trillium Gift of Life Network, James is one of 83 people currently waiting for a lung transplant in Toronto, Ontario. There have been 104 lung transplants to date in 2012. We really are at the international centre for lung transplants. My hope is that James can become one of those statistics. These are hopeful numbers.

photos

These photographs were taken by a dear friend and talented photographer, Heather Armstrong, on the day before James and I left Victoria, British Columbia for Toronto, Ontario. These photos bring tears to our eyes. We remember the fear and the panic, but also the beauty of love. Thank you, Heather. 

re-defining normal

A few days ago, James and I had a full day without any hospital appointments. Weekends aside, it is rare for James and I have to time together that doesn't revolve around the hospitals (and post-hospital fatigue). We decided to take the risk of going out to the museum with hopes of avoiding crowds by visiting in the middle of the day. We constantly wash our hands and take all the necessary precautions to avoid potential infection, but it is also important for James and I to feel as though we have a quality of life together. I pushed James in his wheelchair through the crowded streets of downtown Toronto. This is an experience of its own kind. He also insisted on trying to walk to give me a break (with the back of the wheelchair as support), but found it exceptionally difficult. It is painful to watch James struggle to breathe. We took long breaks, but even still, it was impossible for him to take more than a couple steps. I felt the tears stream down my face with the cold as an excuse. I knew that James was trying to me, and that too, is a different form of hurt. We are both trying to protect each other. We both worry about each other. James, even at his weakest, is still trying to take care of me. I know I say this with a bias, but I truly admire the part of him that cares so very deeply for others, including myself, of course. 

We both loved the museum exhibition. We felt a reassurance that some degree of normalcy can still exist within our lives. We are always re-defining our "normal". I am trying to focus on the positive, but it is a conscious effort on my part. It does not always come naturally to me. There are days that I feel the weight of my exhaustion building into a seemingly insurmountable fatigue, but I continue to move forward. It is a strange feeling to watch the world continue to move around you, and to feel separate; that is, to be moving at a very different pace. My world is on hold. Our world is on hold. We are slowed to living within each and every moment, and rarely, beyond that present. I am grateful for the perspective, but I still struggle to make sense of the speed of the world around me. We are in a state of constant crisis, but there is a stillness that I struggle to define. It is an isolating feeling to no longer relate to the world at large. 

I love to be able to share this little space in the company of James. It has been more than a couple weeks since James' last hospitalization. There is a lot of be said about nearness. I am grateful to be able to help him to take care of himself. I am grateful to be part of his journey; a journey that now belongs to both of us. James is still very sick, and I feel as though I only really allow myself to grasp that reality on a certain cognitive level. I don't allow myself the emotional freedom recognize the severity of James' condition. A few weeks ago, I felt as though I would never find a sense of hope again. Now, I am only imagining a future together. I have been able to shift from simple acceptance to a place of hopeful resolve. It is more than wanting to believe that James' transplant will come in time. James' transplant needs to come in time. It will come in time. I refuse to imagine a future without him (at least not at this point).

remembering Spencer

There is an incredible group of women on Facebook in a CF Wives Group ("Cyster Wives"). These women have strength and courage beyond description. It is a safe and loving environment to be open and honest about the both the highs and lows of having a loved one with Cystic Fibrosis. We support one another through the difficult moments, and celebrate each positive step forward.

Please take a few moments to visit "Let's Solve the Riddle of CF" in memory of Spencer Riddle. Today, James and I light a yahrzeit candle in honor of Spencer's legacy, and for Nikki, Spencer's loving and devoted wife. We have placed it under our (new) tree to send love and warmth to Nikki and all of Spencer's loved ones on this holiday season.

love love love

Chanukah

It would be impossible to not love that smile. 

James has been out of the hospital for two weeks and is feeling stronger and stronger each and every day. We seemed to have found a resolution for James' gastrointestinal issues, and James has been able to return to eating as a full-time job. His white cell counts are back within an acceptable range for immunosuppression, but James is still mostly housebound (aside from appointments at the hospital and physiotherapy at the Transplant Gym) to reduce the risk of infection. We are really looking forward to Christmas at my father's house. We need to take as many precautions as possible to remain healthy for the holidays.

We celebrated the first night of Chanukah over this past weekend (and will have another Chanukah party on Saturday). We have plenty of leftovers, and the house still smells of latkas from the weekend (and other fried deliciousness from the holiday). We played driedel for candies with my siblings, and sang traditional Chanukah songs. We have been lighting the candles each night before dinner. My Bubie has been close at mind and in our hearts. She would have been the first to sing and dance, and of course, to burn the latkas.

James' mother sent some lovely Christmas ornaments from James' childhood for our little apartment tree. Unfortunately, Ophelia got to the tree this evening, and James and I returned home from grocery shopping to scene of pine needles and broken glass in every corner of the apartment. Ophelia was prancing around with pride at all the toys she had discovered on our tree. We will have to replace the tree with an artificial plant. It has fallen a few times prior to this incident, and with Ophelia's new found interest, I can't imagine it would remain upright for a lot longer. 

 love love love

holidays away from home

We are getting ready for the holidays with the mixed emotions of love for the holiday season, and a longing to be back home with James' family, (and of course, curled up with feline friends in front of our fireplace). James insists that all he needs for the holidays is to be with me, but I also sense a sadness for the separation from his family. We are looking forward to receiving some of his childhood ornaments in the mail to bring some of his tradition to our temporary home. 

We will travel to my father's house for Christmas. He lives in a rural area close to Port Perry, Ontario, with several pets that will occupy James' every moment of attention during the holiday. We will still be surrounded by family, and the love and warmth that the holidays are meant to represent.

We will also celebrate Chanukah with my family in Toronto. The party will come to us, because my mother's house has several flights of stairs that would be completely inaccessible for James. We have many special and meaningful traditions. These have become more and more important over the years. The holidays come with comfort of memories. As with the last few holidays, I will feel the absence of my Bubie. She has been gone for almost 10 months, but in many ways, it could have been only a few weeks. There is not a single day that she doesn't cross my mind, and I feel that loss even stronger as the holidays approach without her around the table.

We have also been getting the apartment ready for the holidays, and bringing some of that festive cheer into our small space.

  

We bought a special ornament to represent the year of our marriage:

and another for the blending of traditions:

Our dear friends and family have also sent loving cards in the mail, along with a beautiful angel, and some delicate homemade snowflakes to bring the holiday spirit to our little home in Toronto:

anniversaries

The last few days have been important reminders of the passage of time, and the precious value of that time together. James and I were married five months ago, and for the first of these monthly anniversaries, James and I were able to celebrate our love for each other outside of the hospital. We have also been in Toronto for more than three months now, and James has been officially listed for re-transplant for the last month. These later acknowledgements come with a longing for home, and an indescribable ache for a distant dream. We mark these passages in celebration and gratitude for life, and of course, for one another, but it is impossible to lose sight of the fact that are lives are still on hold. We hope for a future together that moves beyond simply being in the moment, but for now, James and I go through the motions of one moment to the next, always, in celebration and gratitude.