nurturance

There are no changes to report. James is fighting for his life, but James is still alive. James is still here. There is still a lot of fight left in him. His body will heal with time. I truly believe in my heart of hearts that James will recover. Yet, I ache in my sadness. I ache in my fears. I ache in my loneliness. The darkness has an unbearable weight. I am broken without James.

There is still room to care for James in his delicate state. I seek ways to nurture. I take gentle care to wash the salty residue from his skin and oil from his beautiful curls. I massage lotion into his palms. I rest a cool washcloth on his forehead, and wipe the sweat from his cheeks. I speak to him in a soft voice. I give voice to our hopes and dreams. I hope that James feels my love within his deep sleep. 

post-transplant day one and two

I have been short of words for weeks. There has been an intense desperation with the weight of a looming depression. We were holding onto a shadow of hope. It seems impossible to articulate these overwhelming emotions. James is completely exceeding all expectation for re-transplant, and long-term ECMO patients. James has a chance. We have a chance. We will experience joy and happiness again. 

James came out of the OR at around 10:30am, and I was able to first look upon him at 2:30pm.  We were told that the surgery was within the realm of expectations for a re-transplant. James had a lot of bleeding during the surgery. There was a lot of scar tissue from the first double lung transplant, and James was on Heparin (an anti-coagulant) to maintain the flow of the ECMO circuit. He required twelve units of blood, and has had several more transfusions to maintain his hemoglobin levels. 

We were told that James would most likely remain on ECMO for twenty-four to forty-eight hours to allow his lungs to rest. The sedation was also expected to last for at least several days. James had made it through the hardest part of his quest for lungs. We would have a long road to recovery ahead. 

James' strength, determination, and drive have never been more evident. James was awake within hours, and mouthing "I love you" and "What happened?" This was not the only incredible feat and indication of progress. The ECMO circuit was removed at 7:00pm! There have been a constant of team members in and out of the room to send James best wishes, and affirm that James is doing even better than expectations. 

This morning, James was already looking better (and a lot less swollen). He has been removed from pressure control on the ventilator, and is on pressure support. He is being supported with 40% to 50% oxygen. (We had been on 60% to 100% for the last three months, in addition to 100% oxygenation from the ECMO circuit). He is very responsive to my voice and external stimulation, and of course, full of wide-eyed smiles. My world stops to experience James' gaze.

James was taken off sedation early in the morning, but within the hour, James was thrashing around and screaming in excruciating pain. The sedation was started again, but James has developed a high tolerance in the last few months. He wakes every few hours in a lot of pain. The team is working on getting him a PCA for personal pain management control.

I am feeling a range of emotions. It all seems very surreal. I am filled with an incredible hope for our future. I have not felt this level of joy in a long time. We feel very embraced by our families, friends, and communities. We are surrounded by love, light, and support. I read every comment, and I truly appreciate all the blessings.

love love love

I love to watch James sleep early in the morning, with sun beaming in through the windows, and a sense of peace and calm in the room. He is so beautiful at rest. There are not enough words to describe my love for James. He has brought wonderful changes into my life. I am a different person, because of James.

I hold his hands in the quiet, watch the flutter behind his closed eyes, and remember all the moments of shared joy together. I ignore the beeping of machines and the constant flow of oxygen, and replace the sounds with memories of lying in our tent to the tune of the forest, or sitting on the beach and listening to the waves.

We have a lifetime of experiences to hold onto from only a few short years together. We are bonded in the trauma of it all, but also, in the light that we create for each other and with each other. We have truly learned to make the most of each day. Even now, James and I do not pass a day without love and laughter. We talk of gratitude and appreciation. These shared affections are not an act of desperation. My hopes are almost always high in James' presence. There is reassurance in each enduring moment. I believe there has to be more. We need more time. We deserve more time.

There can be a lot of dissonance between knowledge and emotion. That is, I cannot ignore my rational brain and the intensities with of my emotions, but I really do have a desire for hope and faith. I believe that James has a chance, but I struggle with all the uncertainties. Nothing is predictable. I suppose that has always been the case.

I am learning that, in love, I am vulnerable, and for each and every day that I get to sit by James' side and admire his sweet smile, it is worth all the pain and all the hurt. I am grateful for James. I am grateful for perspective.

updates from the never-ending hospital stay

Today, James was the centre of attention to an audience of ten doctors. He certainly makes for an interesting case study in both Cystic Fibrosis and lung transplant. We learned that James may be in the hospital for a few more weeks. He is still holding out for hope that it could be only a week (or less, of course). The goal is to determine James' energy needs for weight gain through TPN. It could take a few weeks to slowly continue to increase the calories to that level and to transition from 24 hour feeds to 12 hour (overnight) feeds. There is some disappointment at the thought of remaining in hospital even a minute longer, but James is prepared to do everything necessary to optimize his health for transplant. This may also allow time for the hospital to contact the Ministry of Health in British Columbia to request funding for TPN at home. 

For now, James' lung health appears to be relatively stable and holding steady at 12%. He is maintaining his weight in the same range with some normal variation in both directions. He had a rough morning with the return of a short-lived bout of nausea and vomiting, but James has gotten comfortable hugging a basin with the knowledge that the discomfort is a temporary condition. Once the medications start to work, he is ready for his routine tea-sipping and cookies.

I packed up my bedside cot at the realization that it is not feasible for me to sleep at the hospital with James for weeks. We will both have to learn to sleep in the absence of one another. I know Ophelia will definitely not protest either the return of my company or the spare room in bed. She loves to sleep on a pillow by my head (and wake me in the night with kisses and kneading). 

I am feeling very grateful for my extended transplant "family" here at the hospital. I've always considered myself to be rather shy, and socially awkward, to some extent, but I have been embraced by a wonderful group of caring individuals. There is an immediate connection with a sense of reciprocal understanding that can only arise from shared circumstance and firsthand experiences. We come from a range of different backgrounds, but that doesn't seem to prevent the building of bonds. There is no reason to ever feel alone; spare those late night encounters with an irrational loneliness, that is. 

We are coping exactly as would be expected given the circumstances. (That is my standard response these days). Our exhaustion remains. There are days that perpetual fatigue can weigh heavily on our moods, but James and I rarely remain low for any length of time. We seem to balance each other out, and lift each other up during moments of need. There has always been a lot more laughter than tears between us. That being said, I think that teary nights allow for the intimacy of shared emotions. The hard moments serve as a reminder of our love and gratitude for an ever-present shoulder to cry on. Those difficult nights reinforce our promise to always be there for each other. We get each other through it all. We will continue to get each other through it all.

six months anniversary!

I am forever grateful that I was able to marry the love of my life. It has been a difficult few months, but in many ways, it has also been the best months of my life, because I have James to hold my hand. I am grateful for every single day that James and I are able to open our eyes in the morning, and find each other by our sides. I am grateful for every shared moment of laughter and tears. I am grateful for each and every breath that allows for more of these moments together. I am grateful for the depth of my emotions, and the comforts and securities of this o so special love. I am grateful for James.

It is important to find reasons to celebrate (and with James, it is not hard to find those reasons):

 

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

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).

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:

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.

update of sorts

It has been a while since I have written a more serious update, but first, I want to acknowledge the incredible and overwhelming generosity of our loved ones, dear online friends, and perfect strangers. "Toonies for Transplant" was a wonderful success. We will forever be grateful for your contributions to our lung fund during this difficult time. We can truly take a deep breath. Our fundraising goal has been met! (The fundraising page has been re-formatted. Our media has been lost. We are hoping to get it back in a few days).

James appears to be stable at 12% lung function, but it is difficult to ascertain a level of stability that also allows for the unpredictable nature of the disease. We recognize that everything can change in a single moment. We are always alert to the possibility of decline. It is a relative stability that doesn't allow for complete rest and relaxation. We remain aware, in both fear and gratitude, making the most out of each and every moment (all within the limitations of the disease). Laughter has never been more important.

James is doing exceptionally well at the Transplant Gym. He is building strength and endurance. James accepts the limitations on his independence. He is learning to slow down and listen to his body (with its ever-changing capabilities). He is able to exercise for five to seven minutes before a sense of complete breathlessness forces him to rest. This no longer incites a form of panic or anxiety within him. James has come to expect these moments, and focuses on breathing through them. He accepts a lower level of intensity for exercise and allows for these breaks to rest. I am so proud of his determination. This is a recurrent theme in my posts: James as the epitome of strength and courage. I feel an incredible gratitude for being part of his life.

I return to another recurrent theme in my posts: That is, a level of physical and emotional exhaustion that is beyond description, and the limitations of language for the expression of these experiences. There is a heaviness that seems to have long settled into my body. It has become a constant weight that slows my thoughts and movements to an impossible pace. I am made still by the force of this exhaustion. The adrenaline of on-going crisis is a temporary illusion. I find it difficult to regenerate energy.

It takes a conscious effort to face the fatigue with self-care. I seek the comfort and nourishment of foods. I exercise to escape my mind and build my own strength. I sleep, and I sleep, and I sleep. I also build energy through attitude. It involves a letting go, or rather, an acceptance for everything that is beyond my control. I must embrace the moment for survival and in mindful appreciation.

My love for James is my best defense against exhaustion and fatigue. It is our best defense. We are both very sensitive to one another. We have the ability to lift spirits (and of course, the alternative, bring each other down). The later is rare. We both feel positive for the most part. We have each other, don't we? That alone makes every single moment worth it.

a year and a half lungiversary

Our lives are always beyond prediction.

On November 9, 2009, James moved from Victoria, British Columbia, to Toronto, Ontario in hopes of qualifying for a live-saving double-lung transplant. He was oxygen-dependent and struggling to maintain his weight about 90lbs.

James and I met in Toronto in June 2010. We formed an immediate and deep connection. It took James 10-months to qualify for transplant. He waited another 9 months on the transplant list. On May 12, 2011, James proposed before heading into the surgery that would save his life, and allow our dreams to become a possibility. In James' words, "I came for lungs, and I found love." 

Tomorrow, it will be James' 18-month post-transplant "lungiversary." It would have been impossible to imagine that James would be on this journey again within a few short years, but James and I do not regret a single day together. 

We will celebrate and honor the memory of James' donor, and that very generous and courageous decision save the lives of others during a time of incredible grief and sadness. We are so grateful for the gift of another year and a half together. We wrote a letter to James' donor family with overwhelming gratitude for an incredible year of health and happiness. As always, there were not enough words to express our gratitude.  

James' life was not only extended. He was given a quality of life that was reminiscent of childhood. We went biking, swimming, hiking, and camping. We filled our lives with laughter. (We still insist on dancing and singing on a regular basis). Our wedding was a magical evening in a celebration of life. There may be fear and sadness to be waiting for another life-saving transplant, but that does not negate the happiness and joy of best year and a half of our lives.

4 months ago

James and I were married on July 2, 2012. On July 3, 2012, James' lung function took a sharp decline, and continued to decline rapidly over the next couple of months. Every day together is a reason to celebrate. Today, James and I celebrate our four month wedding anniversary. These are the vows that continue to hold true to each and every moment of our lives together:

I make these promises to you:

I promise to love you throughout our lives together.

I will care for you with trust and respect.

I will offer support and encouragement for your individual growth, and for the fulfillment of our shared dreams.

I will celebrate life’s joys with you, and comfort you through life’s sorrows.

I will provide you with strength and hope for the future.

Together, we will act in ways that show compassion for all humanity, and respect for the earth and all living beings.

We will create balance in our lives, practice gratitude, and be sensitive to each other's needs.

We will build a home and a life together that is filled with love, happiness, and peace.

I love you.

Let’s get really, really, really old together.

hospital and book of love

I have just arrived home from the hospital. James was admitted to the hospital again for anti-emetic treatment and hydration following another nausea and vomiting episode (and dehydration from several days of minimal food and drink, because of on-going low level nausea and lack of appetite).

He toughed it out at home for as long as possible (always with that same strength and courage). He fills me with wonder and awe. We held hands and cuddled together in his hospital bed for most of the evening, but I left him to sleep (and in hopes of also finding some sleep for myself). It is always hard to leave him in the hospital. It is even harder to return home to an empty bed.

On an aside, James had a good friend, Eva Markvoort. Eva was a strong voice in the Cystic Fibrosis community, and an advocate for organ donation. The film, "65_RedRoses", is a documentary about Eva's valiant struggle to survive during the transplant process. She had exuberant passion and strength during the most difficult of times. Eva had a "wall of love" from all around the world:

James and I are growing our own "book of love" with letters, cards, and postcards from loved ones and friends. It is a wonderful way to lift our spirits.

two months in Toronto

It is hard to believe that James and I have been back in Toronto for almost two months. 

We want to be honest about the realities of our situation. We are still sorting through a lot of emotions about being listed for re-transplant. There are a lot of thoughts and feelings to process. The hope of re-transplant does not negate the fear and sadness, but James and I always seek to focus on the positive. We truly experience a deep sense of gratitude for one another. We hold onto every single moment of laughter and joy. We are very fortunate to have opportunity and access to advanced medical care. There may not be guarantees (and everything can change in an instant), but James and I can find hope in the possibilities of re-transplant.

James is back at the gym three times a week. The exhaustion and fatigue persists, but James perseveres through the aches and pains. He is looking forward to building back some strength and endurance. These benefits will be exceptionally important during James' post-transplant recovery period.

We have been spending a lot of time together. We don't focus on the disease. We reminisce about the last few years together. We laugh a lot. We even try to sing and dance. This also tends to result in laughter. It is not difficult to succumb to laughter. That is the power of our love. We have a deep and strong connection. It withstands the pain and grows through the struggle. It might be that newlywed glow, but I don't imagine that it will change any time soon. We try to imagine a different future for ourselves. It is a future that includes everything from the hours that follow, to the coming weeks in Toronto, and settling back into our little nest in Victoria. 

We find comfort and security in the presence of one another. We clasp our hands and touch our feet together at night. There is reassurance. We will wake again and share another day together. We have a lot to be grateful for.

Jamie is still declining in lung function on an almost daily basis. He sleeps a lot and is finding it harder to eat. We are surrounding ourselves with loved ones, and filling our days with laughter and joy. We take strength from those around us, and find comfort in the presence of one another. 

We will be in touch with the Transplant Team on Monday. We will also know by the end of the week whether Jamie is going to be listed for re-transplant. I am also hoping for a sense of James' prognosis, but I know that bronchiolitis obliterans is exceptionally variable and unpredictable for each individual. 

We continue to live from one moment to the next. We don't take a minute together for granted. I am filled with a lot of gratitude for James. He has changed my life in ways that I never imagined possible. We are not done fighting for each other.

hospital update

James has a bowel obstruction. This is very common for individuals with Cystic Fibrosis. He has been having gastrointestinal symptoms (to a lesser degree) for a few weeks, but James and I didn't consider a blockage. This was often thought to be the cause of James' pre-transplant nausea and vomiting episodes, but it was never determined to be a definite cause. The transplant team attributed his symptoms to his immunosuppressants. They had  made recommendations for a medication change to a coated version of one of his immunosuppressants, and a follow up with the St. Michael's Cystic Fibrosis Gastrointestinal Clinic. We have been the in the process of seeking coverage for the medication change, and making those appointments.

James had a really good day yesterday. He was able to eat small amounts throughout the day, and visit with a really good friend. She brightened both of our days, and was exceptionally helpful with setting up the new apartment. James and I feel very grateful for her friendship. She affirmed and validated a lot of my feelings. She reminded me that there is no shame in feelings of helplessness and hopelessness. It is hard to navigate the system as James' sole support and advocate, and I often feel alone in the process. There is comfort and security in knowing that I am never alone despite those late night feelings of loneliness. I am getting better at asking for help, and allowing others to help. Our time together was a reminder that James and I surrounded by a generous support system of loving and caring friends and family members. We are very fortunate.

James was feeling very optimistic about being discharged today. We ate breakfast together this morning, and James was feeling strong enough to shower, dress, and go downstairs for a coffee. Unfortunately, James' symptoms returned shortly after lunch. He was given some Gravol, and is closing his eyes in hopes of sleep. We are still waiting to see the doctor, but James no longer feels confident that he is ready to go home. 

We hope that James will still be able to start his pre-transplant assessment as an inpatient. We are scheduled for full days of tests and appointments on Monday, Tuesday, and Wednesday. We do not want to prolong the process, and of course, James and I are both anxious to be officially listed for transplant. His lung function is relatively steady, but it is not certain that it is stable. We will have to wait a few more days to differentiate between normal variation and a continued pattern of decline. We hope for the latter and focus on everything that is within our control. James and I always manage to enjoy being together. We find laughter and joy in the worst of circumstances. It is not difficult to give each other reasons to keep smiling. We are constantly reminding each other of the strength that comes from our ever-enduring love. (I woke this morning to a loving e-mail from James in gratitude for our relationship). There is nothing that James and I can't do together.

amy and jon

The Grid has very generously posted an update online to help raise awareness about the importance of organ donation, and to help James and I with our fundraiser to finance living expenses in Toronto. We are very grateful. The update reads as follows:

"My name is Adena, and I married James, the love of my life, on July 2, 2012. We were delighted to share the story of our first date in Dating Diaries with the psuedonyms ‘Jon’ and ‘Amy.’ James’ lung function started to decline rapidly the day after our wedding. He was diagnosed with bronchiolitis obliterans, a form of chronic rejection. He is down to 20 per cent lung function and struggling to breathe again. We had to leave our home in Victoria and return to Toronto to wait for a second double-lung transplant. We are leaning on each other for strength and love during this difficult time. We are seeking help to raise awareness about organ donation and to finance our living expenses in Toronto. More information can also be found on our blog and Facebook page."

James and I received our extensive list of pre-transplant assessment tests and appointments for next week. We will essentially be at the hospital all day on Monday, Tuesday, and Wednesday. We are relieved to be moving forward on getting James listed for a second double-lung transplant. We had our first appointment today. We left feeling very positive about the prospect of being put on the waiting list. James is an excellent candidate for transplant.

That being said, the last few days have been exceptionally difficult. James' lung function has continued to decline. It has been decreasing steadily on a daily basis since Friday. He is down to 0.83 litres (or about 20%). We are very scared. James feels constant exhaustion and fatigue. He sleeps a large portion of the day. He continues to struggle for breath on exertion. It is also becoming harder to recover from these episodes of breathlessness without feeling completely depleted (and defeated). James is doing exceptionally well with exercise and weight gain despite these difficulties. We will be purchasing a finger oximeter to measure his oxygen saturation and monitor his levels. It is difficult to accept that there are no treatment options left or available.

We are holding out for hope that James will receive donor lungs. The average wait in Toronto is 6 months, but there is a lot of variability in that statistic. We are focusing on everything that is within our control. We take it one day at a time. James and I are thriving in our relationship. We are only growing stronger and strong together. We are grateful for the importance of perspective. We truly have lives that are filled with fun and laughter. We sing together. We dance together. We find joy in shared moments of wonder and beauty in this world. We are glowing in the love of being together. 

We want to thank all our friends and family. We are surrounded by love and support. We have raised more than 50% of our fundraising goal. This will amount to almost 6 months rent in downtown Toronto. We are overwhelmed with generosity in all forms.

We are sending you all love, love, and more love.

love love love

end of weekend update

James and I seem to be settling in to Toronto, and re-establishing a relative sense of normalcy, or in the least, adjusting to the reality of our situation. There will continue to be a lot of uncertainties in the coming weeks, but James and I refuse to live as though our lives are on hold. We are starting to plan for a foreseeable future in Toronto (with some degree of enthusiasm for everything that the city has to offer a couple of dreamers).

It has been a difficult transition. There is a process of letting go, or rather, a re-framing of our dreams for the future. We need to allow ourselves to envision a different future (without holding onto grief). We have not lost our dreams. This is simply another path to them. We still have the shared happiness and joy that defines our relationship. We find hope and optimism in each other. I have said it before, and I truly believe that James and I grow together in strength through the adversities of life. We are not strangers to the pain. It only serves as a reminder of the importance of gratitude. We take full advantage of our time together from one moment to the next. We look to each other and smile. There are still reasons to celebrate.

This weekend, James and I enjoyed some relaxation and fully met our cuddle quota for both canine and feline friends with four dogs and three cats at my father's house:
We also went to Word on the Street. This book and magazine festival was also the location of our third date together. We visited The Grid booth and started a discussion about Dating Diaries and a possible re-print of Jon and Amy, a well-received story about our first date (with pseudonyms). We hope that in consideration of the positive reception, James and I might be able to raise some awareness about the importance of organ donation (and low donor registry rates in Toronto at only 13%). Of course, there is also hope that publicity could also help in our personal campaign to finance our re-location to Toronto for transplant. We spoke with a writer at the booth. Our story was immediately recognized, and a nearby couple even requested a photo of us. We were encouraged to re-contact Dating Diaries about these inquiries.

We continued to walk around with silly paper crowns, browsed through books, magazines and comics, and enjoyed an ever so inspiring talk and interview with David Suzuki and Jeff Rubin:

James has an appointment with the Toronto General Hospital transplant clinic in about a week. We hope to gain a better sense of his prognosis, and the course of treatment available, including assessment and evaluation for a second double lung transplant. James' lung function appears to be stable (with some normal variation in both directions), but I am weary of the weight loss (and a history of gastrointestinal problems that have been associated with James' weight status). I am learning to become an active and assertive advocate, but I also have a tendency towards feeling overwhelmed and helpless. It is a fine balance.

That is all for now. We are sending out love, love, and more love. 

a day in kensington

We enjoyed a day in the market with a focus on the joys of being alive. We don't need to find reasons to sing and dance each and every day. We know that importance of laughter and fun. Here are a collection of photographs from the day (with a requisite photo of a furry friend, because James' days are never complete without befriending a squirrel or two):

love. love. love.