photo dump!

a couple of months in a couple of photos (in no particular order):

Xanadu

Dorothy

Bombay

 My Ophelia has adapted very well to all the changes. She is in love with the outdoors, and has become a playful kitten all over again.

 (This is Ophelia's first experience with snow. We didn't get a lot more snow the rest of the season).

I finally (and to my relief) found Christmas photographs:

Christmas Eve on Salt Spring Island at James' Family Farm

Christmas Morning

James and I love to make fresh pasta for dinner. It does not take a lot more time or effort, and it is worth every delicious bite. (Can you tell that James has gained some precious pounds)?

We made a factory load of Hamentaschen for Purim, and had a ridiculous amount of fun at a Beatles-themed Purim Party.

Those are some seriously healthy lungs. (Thank you, Heather Armstrong, for these gorgeous photographs).

We are finally at home in Victoria.

update

I am trying to process a lot of difficult and conflicting emotions. James continues to move forward, but at a pace that lends itself to discouragement. I am acutely aware of the challenges ahead, and the length of time it will take to get there. The progress is remarkable in consideration of the last six months, but it is starting to feel endless again. We still have a long way to go. Movement is slowing down a lot. It can feel as though our lives are on hold again. The walls are no longer closing in on us, but James need the benefits of time. We are going to have to remain still for a while.

Where are we? James is able to remain off the ventilator (and on a tracheostomy mask at 30% oxygen) for ten hours during the day. We will increase to twelve hours on Friday. At that point, James will be given the weekend to rest. He still requires ventilation on high pressure control for physiotherapy and at night. James is not able to breathe on his own during deep sleep. There could be a number of reasons for this, including James' medication regime. The team is hesitant to push forward, because James' success during the days is dependent on his ability to sleep through the night. He needs to feel strong during the day to be able to participate physiotherapy. This is essential for progress in all regards. 

In terms of physiotherapy, James is walking further some days, and feeling stronger all the time. He is now able to get out of bed with minimal support. He can also stand independent of support. These are strenuous movements, and James finds himself short of breath. Nevertheless, James is gaining back his autonomy on several different levels. This all makes a significant difference in terms of James quality of life in the ICU. 

We had another scare on Wednesday followed by a miserable procedure. James had cultures done on his central line. The results came back positive for a pathogen. James was asymptomatic for sepsis, but the line would have to be removed as soon as possible to prevent the spread of infection.

There were three unsuccessful attempts at the insertion of a new central line. James cried in excruciating pain throughout the procedure. I held his hand, and whispered words of reassurance and encouragement. James hates needles after a childhood of pokes and prods. This was absolute torture for him. James finally agreed to a PICC line insertion in his arm. He was given time to rest followed by another procedure of painful anticipation. This was successful, and James' infected line was removed late in the evening. We both went to sleep in a state of complete exhaustion. 

We have to find a way to remain positive. We have to remind ourselves that James will continue to improve. We will eventually have lives separate from illness and hospitals. We have to hold still, and hold each other close. We will get through all of this.

exhaustion

James has been pushing himself to the point of complete exhaustion. He has been falling asleep earlier in the evening, and often, the afternoon, and sleeping in to late in the morning (and almost afternoon). Yesterday, James was only awake for four hours (and could barely keep his eyes open). We were not able to do a spontaneous breathing trial, because of James' exhaustion. There has been a trend of progressive fatigue throughout the ventilation weaning process. It takes an enormous amount of energy for him to breathe independent of the machine.

The team has made a decision to slow down the aggressive weaning process. James will return to pressure control settings overnight. The machine will breathe for him in his sleep. This will allow him to conserve energy in his sleep, and achieve some well-earned and well-deserved sleep. James will be able to build strength and endurance through participation in physiotherapy. As always, it is all about balance. We continue to move forward, but at a different pace. It is essential to listen to your body.

James has been meeting all of his goals for moving forward. It is all very promising and hopeful. It is with absolute joy that I share James' accomplishments. James is no longer on TPN. This was a major leap of faith for James. He is getting all of his nutritional needs met through nasogastric feeds (despite a long standing history of nausea and vomiting episodes in association with feeds). This eliminates the risk of sepsis from TPN. It also starts the process of redeveloping the function of his digestive system. (James has not had anything by mouth in almost six months). James is also weaning down on his narcotics (with slow and careful pain management). This will help improve the function of his digestive system, and allow for weaning from his extensive bowel routine.

James' participation in physiotherapy is also impressive. He walks the entire unit every morning, and in the afternoon, James independently takes on exercise. He stands every hour to stretch and do exercises from the treadmill room routine. He is able to stand without support and remain standing for several minutes. He also does arm weights and leg weights. He is even considering the pedal bicycle for the afternoons. That is motivation and determination at its best. He is doing his best, and I am so proud of him.

heroics

Heroics. That is the word for all this. James is a hero. He is making enormous strides. He keeps pushing forward. His courage is unbelievable. I tried to express my deep admiration, and I found myself in tears. Words are completely inadequate here. I am so proud to be his wife.

James has been walking the entire unit in the mornings, followed by independent arm weights, leg weights, and standing stretches in the afternoon. He has a very strong sense of motivation, along with a very real determination and drive that makes an incredible difference. (We all already know this about James. His pre-transplant days were a testament to it).

James' improvements are evident on all levels with a promise of future health and benefit. The most essential (and remarkable) change has been in James' respiratory system. His hard work has made for steady weaning from the ventilator. This can often be a very long process with a lot of back and forth movement between the various stages. James has been on minimal support for the last twenty four hours (and for twelve hours on previous days). This afternoon, James will make an attempt at a spontaneous breathing trial. That is, James will breath completely independent on the machine (with oxygen support). It will be a short trial of a couple of minutes followed by longer trials in the coming days. It is all part of the process.

Another major area of change has been with James' gastrointestinal system. James has a long-standing history of nausea and vomiting episodes as a result of severe dysmotility, delayed gastric emptying, and pseudo-blockages. He has not been able to tolerate entereal feeds (or anything by mouth) for the last six months. He has received his nutrition directly into his veins through Total Parenteral Nutrition (TPN), in addition to trickle feeds to preserve the function of his digestive system. Unfortunately, TPN has been known to cause infections and sepsis over the long-term. A major hurdle for James will be developing a tolerance for feeds. James will not be able to eat or drink with his tracheostomy, but at some point, James will need to slowly re-introduce liquids and solids. He will also need to regain strength in his swallowing muscles. This will be a major goal for eventual discharge from the hospital.

We can expect a difficult and slow process, but James is braving the very early steps of weaning from the TPN, and increasing his nasogastric feeds. He follows a strict bowel routine to encourage digestive motility and prevent bowel blockages. Nevertheless, James continues to face daily nausea and vomiting episodes. He is pushing through the discomfort with incremental changes to his digestive routine. This is a remarkable feat.

I wish I could convey the magnitude of these steps forward. We are right on track with forward motion (right out of the ICU). We move with cautious optimism and a weary knowledge of potential challenges. James can also be hesitant at the speed of this pace, but I sense confidence and readiness in his movement. Everything feels possible all over again.

leaps and bounds

James' progress has been absolutely astonishing over the last few days. It is impossible to describe all the minute details, but I will do my best to convey these leaps and bounds. (We are moving mountains here). 

James is awake and alert enough to be able to communicate again. He is able to advocate for himself and become an active participant in his own care. He is re-developing a sense of autonomy and independence in his self-care. He is further re-gaining a sense of normalcy through the establishment of a structure and routine to his days. It really is an exceptional change. It represents movement forward on several different levels. 

James has shown improvements (along with great strength and resilience) in all areas of concern. He is no longer on sedation, and is staring another slow wean from long-standing analgesia. His respiratory status is back on track with post-transplant recovery expectations. He is tolerating lower levels of mechanical ventilation support for longer periods of time with each consecutive day. His kidneys and liver function are starting to show positive signs of recovery from early indications of potential failure. His fluid balance has been trending towards the negative, and relieving pressure on his lungs from fluid overload. His gastrointestinal distress remains, but without the same level of concern. The list goes on. The message is the same: We are trending in the right direction in all regards. 

The news gets even better. (There is always more sunshine). James achieved a major milestone this afternoon. James walked this afternoon. He walked a marathon after two weeks with minimal physiotherapy and movement. It was incredible. He nearly passed out from the short distance, and earned a well-deserved afternoon nap, but James still had motivation and energy for arm weights, and five hours in a chair. There are not enough words for "remarkable" here. Instead, I will leave you with love, love, and more love.

update (from my bed)

I have written before about the failures of language in attempts to articulate my love for James. It is also seems impossible to describe these intense emotional experiences of living on the edge of life and death. I have written about the endlessness of this waiting process, and the daunting uncertainties about the future. I have written about the overwhelming feelings of sadness and fear; a strange grieving process and a letting go, I suppose. I aim for catharsis in my writings, but I often feel short of words. It is not enough. It doesn't change the circumstance. There is always that sense of helplessness. I know that I need to focus on that which is within my control, but it doesn't come easily to me. I still feel lost in the unknowns. 

We no longer have an ebb and flow to our days. The days are structured by numbers that determine movement and change. It is as though James has become an object in a world of medicalization. I find some comforts in knowing the details of his medical status, but it can also be very painful. I am keenly aware of the extent of his illness. This will not be an easy or simple path to recovery and health. 

James' medical status is largely the same. There remain some serious concerns. We hope for improvement in the coming days, but James' complications are complex and on-going. The team can offer supportive care in all regards, but treatment options are limited to some extent. James has developed a very high tolerance to a lot of the analgesic and sedative medications. This creates a barrier to treatment and an additional layer of complication in finding the right balance and combination of medications for James' comfort and pain. There are also a lot of contradictions to consider, and James' kidney and liver status create another challenge in preventing further deterioration and decline.

The most recent development is possible sepsis. James developed a high fever overnight along with a spike in his white blood cell count. We are still waiting for blood and urine cultures to confirm this possible infection. He also had another bronchoscopy this afternoon to collect further cultures from his lungs (in the event that there is another source of infection). 

Unfortunately, I have been in bed for most of the afternoon in escape from light and sound. I suspect this migraine is a response to the stress of the morning at the hospital (and an accumulation of the last week of distress). James was awake for the first time in days (despite very high levels of sedation), but his presentation was of pain and discomfort. It is difficult to differentiate between moments of delirium, and moments of definite lucidity. He pleads with me, wide-eyed, in desperation and pain, and then disappears into an unresponsive state of being, eyes glazed-over, and grasping aimlessly into space.

I am fortunate that there are also endearing gestures of sweetness. James recognizes the sound of my voice, and a beautiful smile will make an appearance. My heart aches as James reaches out for me, squeezes my hand, and asks for kisses. I find a lot of reassurance in these moments. I miss these moments in his days of deep sedation. I need these daily reminders that James is still present. James is still here. James will continue to be here.

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. 

possible rejection?

I am looking for the light, and I am lost in a muddle of overwhelming emotions and dissociative thoughts. 

There have been no improvements. 

James' respiratory status is deteriorating without explanation or known cause. James is on the highest possible ventilation settings. His carbon dioxide levels continue to rise to dangerous levels. He is back on heavy sedation in attempt to improve the consistency of his breathing with the ventilation settings. He continues to have signs and symptoms that indicate potential liver and kidney failure. Edema remains a significant concern despite efforts at diuresis. 

The team has made several adjustments and changes to his medications in efforts to resolve these issues. He has also started treatment for potential rejection. It is possible that there are a number of factors contributing to his decline, but without clear indication of infection or improvements with diuresis, it is reasonable to consider rejection as a cause.

We are receiving love and support from all different directions. We feel very embraced by the ICU and Transplant Teams at Toronto General. We are both getting the best possible care. 

James also has all the strength in the world. He will recover. It will simply take time.

complications

These words are difficult to write. I want to communicate a message of hope, but I don't want to create a false pretense. That is, I want to be able to share an honest perspective, but I also strive to maintain a positive resolve. There is and will always be a precious balance. There are a lot of details to share, but I will mostly focus on the larger elements.

James' edema is a significant concern. This accumulation of fluid has a negative impact on his respiratory system (in addition to the function and regulation of his other major body systems). James' fluid balance continues to increase. There are challenges to the process of duiresis for a number of different reasons. James' creatine levels have been steadily increasing to the extent of renal dysfunction, or in the least, it is an indication of the potential for renal dysfunction and failure. This creates a barrier to intervention for duiresis.

Similarly, James' has been demonstrating signs of liver toxicity and liver dysfunction. He has had on-going and serious episodes of myoclonic muscle spasms, along with frightening episodes of delirium and hallucinations. It would be painful to even make an attempt at describing these episodes. There are no words to describe the distress. There have been several changes to James' medication in hopes of a positive improvement in all regards.

Finally, James' lungs present with the appearance of Primary Graft Dysfunction. According to my understanding, Primary Graft Dysfunction is a form of injury to the lungs (rather than a form rejection). This can be the result of the length of transition period during the operation, in addition to other recipient and donor factors. Of course, James is a rare case. It is difficult to make comparisons for a re-transplant patient on ECMO pre-transplant.

We have hope that James will continue to move forward. We expect these challenges along with the need realistic expectations, but I am also not ready to let go of fears for the future. James has incredible amount of fight and determination. His motivation and drive to survive will be his strength in the coming weeks.

Thank you (again and again). 

Love.

Love.

Love.

early days post-transplant

In those early ICU days, I would describe waking up with complete anxiety in the mornings. There was an intense need to look upon James. I could not ease this incredible emotion without being able to hold his hand. I crave that same need for nearness these days. I shake in anticipation in the waiting room. I am easily brought to tears. The difference is that I am not finding a lot of comfort in his presence. I am desperate for him to be awake and arousable, but at the same time, it is heart-wrenching to watch James thrash and scream in severe pain. I can accept a level of helplessness. (It has become a familiar emotion). That being said, I experience a depth of pain in response to James' discomfort. This is a consequence of love and connection.

The last few days have been ripe with challenges and complications, but also moments of great success and accomplishment. We have gone from one end of the emotional spectrum to the other. There is no post-transplant euphoria. We are deep in the trenches of post-transplant realities, and it an entirely different set of uncertainties. It is impossible to predict or project into the future. We continue to live a single day at a time (and in truth, from one hour to the next). The days each bring movement in many different directions. We will have to find comfort in a general trend forward.

There have been some scares (for all of us), but I would rather share the uplifting news. (The rest is all part of post-transplant complications and all within the realm of expectations for a re-transplant recovery process. I have a need to focus on the positive). James did chest physiotherapy, and with some encouragement, James nodded enthusaistically at the suggestion of sitting on the edge of the bed. He was willing to make an attempt despite the pain and discomfort. Then, James took it a step further. That was pun-intended. James was able to stand up and take a few steps. It was absolutely remarkable. I cried in pure joy and pride. I didn't get a photo of him on his feet. (I was trying to find Kleenex). I do have a wide grin from the side of the bed:

That's all for now. 

love. love. love.

moving forward and backward

There is an intensity to this level of exhaustion. I am vulnerable to my own emotions. I am waiting for that sense of relief, but I still feel the weight of uncertainties. I need to find a place of peace and calm. I want to be able to rest with the knowledge that James is moving forward, but I continue to feel the weight of the unknown. I watch my love in incredible amount of pain, and I feel that familiar helplessness.

I have to reconcile the intellectual with the emotional. I know that James' recovery will be completely different that his first transplant. I recognize that it is a long and slow process. I am aware of all the various factors that could influence his short-term and long-term recovery process. I know that there will be complications, and I can prepare myself for the inevitable.

My emotions are beyond my control. Yet, I am not flooded with fears and anxieties, but rather, I am hesitant. I am afraid to let go of control. (Of course, I have no control). I suppose I need to know that James is still present. It is a strange feeling of almost desperation. He has rarely been awake enough to communicate. I long to see those blue eyes and sweet smile. It comes with a wave of overwhelming emotion, and I find myself in joyful tears. It is James. James is all I need. 

We continue to have difficulties with pain management, and the subsequent impact on James' need for sedation, and on the function of his respiratory system. There have been some improvements to his blood gases, but I know that variability is within the realm of expectations for this stage. 

James will slowly be weaned from the ventilator in balance with these changes. It is very positive that James has been able to tolerate pressure support settings on the ventilator for short periods of time (rather than a more invasive pressure control). That being said, James may require pressure control with increases to his carbon dioxide levels or other negative changes to his blood gases. This could be a response to high levels of sedation and analgesia, or James' own anxieties in relation to pain and movement. It is all part of the process.

Physiotherapy worked with James in his bed on range of motion exercises. He was limited due to intense pain, and the movement of sputum and mucus in his lungs. The secretions have been very thick, and James does not have the strength to cough (to support proper suctioning and clearance). A decision was made that James would have a bronchoscopy to clear secretions from his lungs, and to get a sputum sample. We have been informed that James' donor lungs have returned a positive sample for a Staph bacteria. Another antibiotic will be added to his regime to fight the infection.

We will continue to move forward. We will continue to move backward. This is all part of the process. We can expect challenges ahead. We can also expect celebrations. I have complete faith and trust in James' medical team. We feel the love of the entire ICU. Everyone is invested in helping James through the best recovery that is possible at this stage.

I find some reassurance in James' smile. I can hold his hands for hours waiting for him to open those eyes. I am then able to close my own eyes in hope of some form of rest.

Fancy Shmancy Stockings and Chest Tube Drainage

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.

waiting day

We spent the day in a calm anticipation. There were fears and anxieties, but also, a complete readiness for surgery. It was a hard day without the addition of overwhelming emotion. James has been very sick with nausea and vomiting, and word of a donor did not bring reprieve from his symptoms. The pneumonia (Pseudomonas) has also meant an increase in secretions and shortness of breath. The pain and discomfort seemed to heighten the desperation for transplant.

We waited for hours to hear about the viability of the donor lungs. There were continuous words of caution about the high instances of false alarms. We have learned to live with levels of uncertainties and unpredictabiliies. We held each other close (and closer). We left nothing unsaid, and all that was left was a cuddle and a handheld.

We have the privilege of an exceptional team of medical professionals. James was given a small amount of sedation in his ICU room. This was a special consideration to ease Jamie's anxieties, and allow for a proper good-bye before heading to surgery. James was finally taken to the OR at around 1:00am on Wednesday, May 29th. This new "lungiversary" is also two years to the date of James' discharge from the hospital after his first double lung transplant. I retreated to the waiting room, shaking and teary-eyed, and hoping for an escape into a sleep that still hasn't come. 

There have been no updates from the surgical team. James will be in the OR for at least another four to five hours. I long to look upon him, hold his hands, and be near to him again. He will be in sedation for a few days. I will continue to update as I am able (and awake). There will never be enough words to express our gratitude. Love. Love. Love.

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.