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.

home with an update

James was discharged from the hospital on Monday evening. He was absolutely ready to be back in his own bed and the little space we have made into our home. We were very concerned about his blood oxygen saturation levels, but James' lung function appears to be recovering from the aspiration episode. We thought that James had become oxygen-dependent, but his blood oxygen levels have been slowly increasing to within a healthier range, and above the level that would indicate the need for supplementary oxygen support. James' shortness of breath continues to be severe in terms of the need for longer recovery periods and an ever-growing definition of exertion. These experiences are compounded by the fear and anxiety that are associated with the sensations of breathlessness. We are hopeful for that his shortness of breath and breathing difficulties will also continue to improve from the aspiration alongside his healing lungs. 

James' determination to work through the discomfort and pain of dyspnea continues to be remarkable. He is increasing in both strength and endurance at the Transplant Gym. He is now able to engage in cardiovascular activities for ten minutes without the need for a break and can complete twenty minutes on both the treadmill and stationary bicycle. He has also been able to increase his arm weights by a couple of pounds. These are more than noteworthy improvements. A few weeks ago, James was limited to only two to three minutes of cardiovascular activities between breaks and twenty minutes on either of the machines (rather than twenty minutes on both). James had even been exercising with the absence of weights for a few weeks. These improvements have been irrespective of James' frequent hospitalizations and recent aspiration episode. 

As for myself, I am coping within the realm of expectations for the given circumstances. There is a lot of grief and sadness to process. I give myself permission to experience the full extent of these emotions, but I also make a conscious effort to focus on positive experiences and moments of gratitude. My love for James does not ever seem to wane, but rather, I feel an ever-growing depth and intensity of love for him. James is a source of continuous strength and hope for the future. I would love to emulate his constant state of optimism. That is not to suggest that James does not also have moments of grief and sadness, but James always seems to have a positive resolve. He knows the importance of attitude for survival. There is not another option for James. James will have another double-lung transplant. Our dreams will become possible again. That is the only focus for the moment, and for the future. We will get through this. We have no choice.

and a second entry from the wife

Jamie and I are both recovering from the complete lack of sleep of the last few days. We are relieved the be past the point of severe pain and nausea, but James will not be able to be discharged from the hospital without an assessment of his supplemental oxygen requirements. His lung function appears to have deteriorated to the point of impacting his blood saturation levels. We were prepared for this next stage in the progression of the disease, but that doesn't necessarily ease the emotional and mental transition. James has been on supplemental oxygen throughout this hospital admission for low levels of blood oxygen saturation (and decreases with exertion and during sleep). James appears to have become oxygen-dependent again. We feel a sadness, to some extent, but not beyond expectation given the circumstances. We don't imagine that this change will have a significant impact on James' quality of life on a daily basis. Some of our best collections of memories are from James' pre-transplant oxygen-dependent days. That's all for now. I am conserving my energies for the next few days. We promise to continue to update. As always, James and I are sending love, love, and more love.

James here

Hello my loves. Yesterday at 4am I was rushed across the street to the hospital in a wheelchair driven by my mom and wife. Along the way I was barfing my dinner up to either side of the chair. This was at 4am and would have been pretty hilarious if other people had seen it. I also managed to spray puke at my wife at the end of this very long day. Believe me, it was very long for poor Adena as well. 

I am now admitted to Toronto General again. It's weird because this is all a reaction to a treatment they gave me called Neupogen, which is supposed to increase your white blood cell count. When they gave me my first dose they said there were almost no complications. HA HA FUNNY. I woke in horrible back pain and spent the day in agony. Then they gave me Tylenol 3 tablets that didn't work. Then I couldn't sleep all night, started barfing, and we rushed me to the hospital. It was scarily reminiscent of my shingles attack and caused us a lot of anxiety. (It's not shingles; shingles only happens on one side of the body, this pain radiated from my middle lower back.) Now that I'm in hospital I'm on IV hydromorphone for pain and Zofran for the nausea. 

I actually feel good and hungry now since this was not a typical nausea attack that leaves me weak for days. We are keeping an eye on my oxygen and hopefully I'll be able to go home soon! I feel so loved with my wife beside me and my mom at home nearby. I am really blessed. 

James

week of clinics (and back in hospital)

I wrote the following post last night with the intention of a positive conclusion to the week, but I will have to include a retraction of sorts. I have written extensively about the recognition that everything can change in an instant, and of course, it does. James was admitted to Toronto General early in the morning following a long and sleepless night together. I will update more about the admission in the days to come. Nonetheless, it is important to acknowledge the optimism and accomplishments of the previous days: 

It has been a week of clinic appointments. This translates into long days of waiting, waiting, and more waiting (and a couple of tests and appointments in between). We feel fortunate to have be seen within three to four hours of our scheduled appointments. We have come to expect these extended delays (without acknowledgments of the waits or apologies from the team). We have left the building in the past through dark and empty halls. We are always grateful to head home before the receptionists have locked the doors and closed the lights for the evening. 

We were scheduled to be at St. Michael's on Tuesday and Friday, and at Toronto General on Wednesday. James was also to be at Toronto General for others tests and physiotherapy (Transplant Gym) on Wednesday, Thursday, and Friday. It would be an understatement to suggest that our lives have revolved around the hospital this last week. 

Nevertheless, James continues to be stable (in the relative sense of the term). We are relieved that James has no signs of infection. (His chest x-ray remains clear. He has no fever or sputum). On the other hand, James' white cell counts have been low for a couple months. Several of his medications are being held in hopes of recovering these levels. He will also be given Neupogen shots for the next couple of days to help regenerate some of his immune function. These have resulted in excruciating muscle pain, but James always knows to manage his pain before it is beyond his control. 

On a more positive note, James, in his incredible determination, has been able to gain back a couple pounds of all the weight lost from his recent gastrointesinal episodes. He is eating a near three thousand calories every day, and truly pushing himself, despite a lack of appetite and low energy. We are both feeling very proud of his weight gain. We hope this upward trend will continue.

weekends

It is lovely to slow down on the weekends and make a conscious effort to focus on slowing down. We have each carved out a space in our little apartment. We are happy to share that space with each other and still be able to engage in our own activities and interests.

I have minimal ability to focus these days, but I can manage to read a few pages, check my e-mails, and write a blog post. I will often do some basic crafts to occupy the hours. I will eventually disappear for short walks and household errands (without any real agenda aside from fresh air and getting out of my head). James is content on his computer without disruption for any length of time. Ophelia will even makes an appearance these days for afternoon naps in the sun puddles on the floor. We are all ready for naps by the time our morning caffeine starts to leave our systems. 

All that being said, it is really difficult to feel confined to within the house. James' limitations, in regards to mobility and immunosuppression, mean that we have to redefine our quality time together. It was only a few short weeks ago that James and I were able to walk through high park, and Kensington market. We were visiting museums, and libraries. We truly able to make the most out of our time together. The changes are truly startling to contemplate. There is a grief that I am not prepared to acknowledge (at this point, at least). 

Instead, James and I have to create a different reality. We cuddle up together, and reminisce about the last few years. We dream of a different life together post-transplant (and for our return home after re-transplant). We have a few games to distract and entertain, but mostly, I crave the laughter and smiles. I want to be able to keep singing and dancing together.

I want the impossible. That is, I want a return to only a few months ago. I look through our wedding photographs. I remember the possibility of a future of our dreams. There was an unbelievable spirit of shared joy and happiness. It was only a few months ago, but in some sense, it feels a lifetime away. We never could have imagined (or would have allowed ourselves to imagine) that James and I would be back in Toronto waiting for a second double-lung transplant a few weeks later.

I don't believe that James and I were naive. There was an illusion of health. We had a perfect year post-transplant with minimal complications. There were no warning signs. It is impossible to make sense of, because of the unpredictable nature of the disease (and the complete unknowns from the world of medical science). There are no explanations. It is hard to accept the circumstances without answers, but James and I have no choice. We have to keep focused on living. This is nothing more important that being here, alive, and together. I am grateful for a warm body in my bed tonight, and a hand to hold throughout the night.