morning update

I thought I would give a brief morning update (and move away from all that doom and gloom). The team is still very concerned about James' lack of improvement, but also communicate an overwhelmingly positive resolve that James will recover with time. Sleep deprivation has made me vulnerable to that looming shadow of depression. It is more important than ever before to focus on the positive.

James is in the best possible place in the world. Toronto General is an international centre for multi-organ transplants. I cannot emphasize enough the exceptional and genuine care that James and I receive in a daily basis. We feel completely loved and embraced by the entire ICU and Transplant Teams. We will never be able to fully express our gratitude. 

We also have incredible communities of support. There are hundreds of individuals sending James and I all the love and best wishes in the world for a full recovery and a chance at a healthy life together. We never have to feel alone. Thank you to everyone for your continuous love and support. We really appreciate your generosity of energy and spirit during this difficult time.

It is painful to go through this experience without James by my side, but James' body needs time to heal. The sedation allows his body the rest it needs to focus on that healing. It means the ventilator can breathe for him without resistance. That allows for healthier gas exchange and regulation processes throughout his entire body. For now, James is stable on sedation, and I am grateful for that offering of peace and calm.

We can expect complications with re-transplant, but there is no reason to believe that James will not make a complete recovery. James has all the strength and all the drive to survive. We will get through this rough patch.

Edit: James' most recent bronchoscopy sample has come back positive for a fungal infection. His cumulative fluid balance is also a serious concern. He will get a nephrology consult to consider dialysis to remove excess fluid.

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.

closing in

I want to write, but there are no words (or in the least, words that come easily to me). We go through the motions on a daily basis, follow a structured routine in a sterile environment, and hold onto remnants of hope. It is strange to accept this form of "normalcy". It has become increasingly hard to imagine that ever distant future together.

We live within the boundaries of this hospital room. These boundaries seems to extend to our dreams, creating a sense of limitations, or rather, a threat to our future together. How do I describe the sensation? The walls are closing in and there is not enough time in the world to make everything right again. It is a challenge to remain positive, and conceive of a different life. We haven't really had our chance. We have found a way to make the most out of our time, but it still does not seem to be enough. We want to live together in health without the constant shadow of death.

James' lung function took a steep decline on the day after our wedding. We were given permission to return home to British Columbia, and in that time, James and I started to nest together. We re-arranged furniture in the house, scrubbed the floors, cabinets, and walls, and weeded our way through the courtyard jungle. His lung function continued to decline at a rapid rate, and it was rare that James and I would pass a day without an appointment or test at the hospital. We insisted on creating a life for ourselves in Victoria. 

Every single day, James and I spent time in nature together. We went for picnics on the beach between appointments. We rode our bicycle through campus to find deer foraging on blackberries. We hiked along the water, and went swimming on Salt Spring Island. We went pseudo-camping on the family farm, and woke to the screeching of peacocks. We found a way to make the most of our time. It was still possible. It was still possible to focus solely on living, and on living together. 

This experience changes everything. James can no longer walk without extensive support, or stand long enough to shower or brush his teeth. It is difficult to finish a sentence without feeling short of breath and gasping for air. He struggles to breathe with all movement. He requires 100% oxygen support to turn to his side or shift his body weight in the bed. He is not able or allowed to move without the help of several nurses. His excess of tubing is clamped to the bed. He is stuck in the most literal sense. We are both stuck. It is no wonder that it can feel as though the walls are closing in.

How do we cope? How do we remain positive? We focus on hope for a live-saving and life-changing transplant. We focus on gratitude. There is a lot to be grateful for. We are grateful for access to exceptional health care. We are grateful for genuine care. We are grateful for family and friends. We are grateful for generosity and kindness. We are grateful for support and understanding. We are grateful for love. We are grateful for each other.

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.

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.

assessment day two

We made it through the second day of assessment with a lot of tears. These appointments were mostly interviews and information-sharing about the realities of re-transplant. Re-transplants are rare for a number of reasons. The risks often outweigh the benefits for a large percentage of possible candidates. The statistics and survival rates are less than reassuring (and that is a significant understatement). There are always exceptions. James and I need to believe that he will be one of those exceptions. It is the only way to cope and get through the days.

It will be at least two to three weeks before a decision is made about James' acceptance or rejection for re-transplant. The third possible outcome is that James may qualify for a second double lung transplant, but it may be deemed too early for re-transplant. It is a team decision, but James and I have been told consistently in the last few weeks that he is a good candidate for re-transplant. The hope is that he will qualify for transplant, and be able to survive long enough for an appropriate match to be found. The highest and most acute risks will be during the surgery and in the immediate post-transplant recovery period. We can expect a lot more complications and a longer hospital admission. 

All that being said, James and I have no reason to believe that he won't make it. (We truly can't let ourselves think otherwise). He has enough strength for both of us, along with a positive attitude and a hopeful resolve. We will get through the decision-making process, wait as long as necessary for an appropriate match to be found, and James will survive a successful second double-lung transplant. We will be given the incredible gift of more time together. The limitations on that time may weigh heavily on my mind (and in my heart), but I am grateful for each day I still get to hold his hand and hear his voice. James is here right now. We need that to be our focus.

Please register to be an organ donor. There is a significant lack of available organs in Canada. A very small percentage of individuals die in a way that will allow for organ donation. I believe it is less than 1% of potential organ donors are eligible for organ donation at the time of death. Of that small percentage, every single organ donor can save up to 8 lives. Organ donors can also improve the lives of up to a seventy-five more individuals through bone, muscle and tissue donation. The first step is to talk to your family and friends. Open the dialogue. Registration is easy at http://beadonor.ca (Ontario) and https://transplant.bc.ca (British Columbia).

According to The Gift of 8 Movement, Toronto's registration rate is 13%. Thornhill and Vaughan are also lacking at 9%. There is also some great information available on the Trillium Gift of Life Network and the RecycleMe.Org.

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.

gratitude

James is snoring away the afternoon (and early evening), and I'm left to consider the importance of gratitude. James and I make a conscious effort to practice gratitude in our daily lives. We write in a gratitude journal on a regular basis. We also share our gratitude with each other before closing our eyes at night. We mention beauty in nature, and wonder takes over for the night. We note privilege, and dive into political conversations. We appreciate literature and a love for poetry and language, and a dreamer emerges from within each of us. 

Gratitude seems to serve an essential purpose: It acts to ground us in the present moment. It becomes a defense against the negative. It reminds of all that there is to love about being in this world. It builds strength and resilience (in the face of chaos, and everything beyond our control). Gratitude allows for connection to everything essential in our lives (and in this world). It helps give voice to all our reasons to keep fighting to be here, for ourselves, and for each other. With that, I am grateful:

I am grateful for James (and the ability to love and be loved).
I am grateful for access to the basic necessities of life.
I am grateful for access to live-saving and life-enhancing medical care.
I am grateful for the opportunity to pursue post-secondary education.
I am grateful for poetry (and the beauty of words).
I am grateful for the changing of seasons (and the vibrant reds, oranges, and yellows in our window view)
I am grateful for laughter.
I am grateful for hope and optimism.
I am grateful for friends and family (and support and care in both the best and worst of times).
I am grateful for pumpkin pie and apple cider.
I am grateful for hand-knit gloves (and small labours of love).
I am grateful for warm blankets (and the comforts of home).
I am grateful for Ophelia (and feline cuddles at all hours of the night).

and of course, I am grateful for our feline friends left home in B.C:

no longer homeless!

James and I have good news to share. We signed a lease for October 15th. It is a 6-month lease (and month-to-month afterwards). We officially have a home in Toronto. It is directly across from the hospital. It has a single bedroom, a lot of closet space, and a bright view of downtown Toronto. We will also have access to an exercise room for James' physiotherapy and of course, for my sanity, to some extent.

We are meeting more (and more) wonderful people at the transplant gym. There is a very positive energy of hope and optimism in the room. We continue to enjoy sharing stories amongst individuals pre-transplant and post-transplant. The level of support and encouragement is incredible. There are no words to describe the courage in that room. I will often feel a wave of sadness watching someone struggle for breath, but there is always laughter in the background to bring me back into the present.

James pushes himself very hard at the gym, and tends to collapse into exhaustion back at home. He is sleeping more and more these days. I wake often during the night to check on him. His breathing has become very shallow and almost silent at night. It scares me and I will reach out to feel his skin for warmth. It is a significant contrast to the last year of gasping for air and loud snoring from a complete sinus obstruction. 

James and I want to share our gratitude. It is important to keep our focus on positive.

We are grateful for each other. We are grateful for each and every day together. We are grateful for friends, family, and community. We are grateful for hope and optimism. We are grateful for access to health care, and a team of genuinely caring experts and specialists. We are grateful for deep sleep, and of course, good food. We are grateful for feline friends and late night cuddles (both from each other and Ophelia). We are grateful for gratitude itself. It is an excellent reminder to appreciate the present moment.

These photos are from our temporary home. We are looking forward to moving into a more permanent living situation. It will be lovely to have more than a mattress on the floor, but of course, all you need is love, love, love.

imagining a future

First, I feel to need to mention that sleep is incredible. It seems to that sleep, in addition to exercise (as I wrote about in a previous post), is also essential to obtaining any sense of normalcy in my life, that is, in terms of my ability to cope and function on a day to day basis. It is wonderful to finally be able to sleep again. James has been discharged from the hospital, and I suppose that all I needed was the comfort and security of knowing James is safe (and sound asleep) beside me.

I have been working really hard to re-frame my thinking, and I suppose, to some extent, to challenge the intensity of this grief, or in the least, to make more sense of it. I mean, I understand that that some degree of anticipatory grief is within reasonable expectation. James and I are navigating through a very scary time in our lives. We cannot avoid end-of-life discussions and decision-making. It is impossible to completely negate these fears (without knowingly lying to ourselves). Rather, James and I make all attempts to speak with a language of hope and optimism. I try to dissuade my feelings of grief with a focus on gratitude for each and every day I still get to hold James in my arms. James is still alive. I also allow myself time to grieve, because I believe in honoring a need to truly feel the true extent of my emotions. That being said, I need to be cautious about my tendency to become overwhelmed with emotions, and the depression that seeks to engage with any or all opportunities of vulnerability and fragility. 

I think that I am also grieving for a fundamental change in our relationship. This involves the ability to imagine a future together (as the title of this post alludes to). This is hard to explain, and I'm not certain whether I will be able to accurately articulate or express it, but I will make an attempt. I also believe that it is not something that is lost. It is a change that James and I can control. We just need to find a way to re-claim it within our current realities. We need to allow ourselves time and permission to grieve for the future from our dreams, but at the same time, there is need to create a different dream for ourselves. We may still be processing all this rapid change, but James and I should not limit the ways in which we imagine a future together.

Let me explain further. When I met James, I really had no ability to imagine a future for myself. I truly could not conceive of a future without the throes of depression. I didn't know that this level of love and happiness was possible. On the other hand, James was oxygen-dependent and struggling to gain enough weight to qualify for a double-lung transplant. James depended on the dreams of a future for survival, but it was difficult to remain positive with recurrent hospitalizations (and not to mention, the loneliness of being a in a foreign city). We both struggled to find hope. James and I did something incredible for one another: We imagined a future of our dreams together. We created dreams based on a hope for a shared future. We gave each other reasons to live. (I think it is important to make a distinction here. We gave each other reasons to live. This is different than being each others reason to live). We gave each other reasons to keep fighting. Thus, I truly feel as though imagining a future together is a fundamental aspect of our relationship.

This photo was the first of us taken together, a few months after James and I met, and already imagining the possibilities:

Here we are again in our first photo together post-transplant with endless possibilities for our hopes and dreams to become realities:

Our wedding was a testament to the possibility of these dreams. It truly was a celebration of life. The future of our dreams never felt more possible. It was only two short months ago, but James and I have spent few days since outside of hospitals. We went immediately from entering the next phase in our lives (and the beginning of our lives together) to a devastating crisis of potential death. I do not believe that we were naive, but there was certainly an illusion of health, or in the least, a sense of stability. James had an incredible year post-transplant with few to no complications. We were not prepared for his rapid deterioration.  

We both agree: We feel simultaneously very old and very young. We have had a lifetime of experiences in our two years together. 

That is also another important part of all this to place in context. In many ways, I think James and I were still recovering from the trauma of his first transplant (and the following year of long-distance relationship). I had emerged from the severity of my depression in our first year together (and the ECT that left permanent blanks in my memory), but the recent death of my Bubie left me feeling fragile (and vulnerable to another episode of depression). There was a lot of transition and change (to say the least). We were still putting the pieces of our lives back together. 

Now, James and I must create new dreams for ourselves, for each other, and most importantly, together. Some of these dreams may be the same as those from the past. We can find a balance between living one day at a time (and from one moment to the next), and creating a world for our future together. We don't need to let go of them all. It is the hope for something different that makes imagining a future together possible. We need that hope to the same extent that James and I need to focus on gratitude for every shared moment.