Friday, June 28, 2013

one month post-transplant

We have come a long way in the last month: 

James is no longer on ECMO.

James in only on the ventilator at night. He uses a tracheostomy mask at 30% oxygen for twelve hours during the day.

James is no longer on TPN. He is being fed completely through NG feeds without nausea or vomiting.

James is no longer fighting infections.

James' major organ systems are all functioning within normal ranges.

James no longer has serious fluid overload.

James' various tubes and catheters have all been removed, (and James should be free from an IV pole by the end of the day).

James is awake, alert, and oriented. He can communicate with the team, and advocate for himself. We can laugh and smile, and find joy in our time together. 

James can move between his bed and the chair with minimal support. He has become a lot more confident in his own strength and endurance.

James has been able to leave the ICU twice. He was outside for the first time in six months, and had a lovely afternoon in the atrium.

James and I can imagine a future together again. We have a sense of hope.

Why be an organ donor? Organ donation saves lives. We are so very grateful for another chance at life. There are not enough words of gratitude. We are forever indebted by the generosity and courage of an anonymous stranger.

Thursday, June 27, 2013


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.

Wednesday, June 26, 2013

The last few days have been largely uneventful. James is meeting all his daily goals. We are moving in slow motion. I will try to update further in the morning. Love, love, love.

Sunday, June 23, 2013

path to ventilator liberation

We are still treading lightly, and to some extent, awaiting the next setback, but James is determined to stride forward. We continue to move at a slow and steady pace. James has daily goals, and manages to meet them all without difficulties. He feels stronger with each passing day, and there is evidence to support his gains.

We are on the path to ventilator liberation. James' oxygen requirements are down to 30%. He spends an increasing amount of time on a tracheostomy mask each day. Yesterday, James spent a total of four hours off the ventilator, and will aim for six hours today. He doesn't feel short of breath during these trials, but it does impact his level of fatigue. He is learning to breathe all over again. It takes a lot of energy. 

James has also been requiring less oxygen and ventilation support for physiotherapy. He will soon take on walking without the ventilator. These small gains are major on the path to recovery.

Friday, June 21, 2013

moments in time

We finally have a routine to structure our days. We have re-established a sense of normalcy, or at least, the normalcy that has become our lives in the hospital. We are settled at a reasonable and productive pace of moving towards a healthy recovery from James' re-transplant.

We have no point of reference for comparison. We have been told that James is the first re-transplant patient to survive on ECMO for three months as a bridge to transplant. Each of these factors alone would come with expectations of a long and complicated recovery process.

I wish I had more of a sense of the future possibilities. I wish I had more of a sense of James' prognosis. I know the statistics, but James and I have always been outliers. We want to believe that this transplant will be different. We want to defy chance.

James is doing everything within his abilities to move forward. He is pushing himself to the point of exhaustion. He is doing everything right (and everything possible). He has been achieving all of his goals for weaning from mechanical ventilation. The ICU team has created a regimen for daily incremental increases to the length of time on low levels of pressure support. We even have a sticker chart for motivation.
The days can be long, but we find hope in the small changes that indicate progress on a daily basis. We are so grateful to be on the other side of transplant. That is enough to continue to propel forward movement. We are both in good spirits. There are regular frustrations and moments of discouragement, but dreams of a future together are enough to lift the weight. We still have fears and anxieties, but again, James and I are able shift our focus, and find that same sense of hope that was essential for pre-transplant survival.

We have learned out of necessity to live in the moment. We have the knowledge and experience to understand that everything can change in an instant. We dabble in those post-transplant euphoric feelings of joy and relief with acceptance for the moment, and a letting go of anything beyond the moment. Does that make sense? We have no alternative. We only have the moment.

Wednesday, June 19, 2013


Slowing down is hard without feeling some level of discouragement. These long-term hospitalizations tend to wear down our patience. James and I are ready to move beyond the stage of perpetual waiting (for, well, everything). Our lives have been on hold for almost a year now. We are ready for change. We are desperate to start out lives together.

Time will always be precious for us. We have no illusions of health. We have no real sense of James' long-term prognosis. (The median survival for re-transplant is two years). We no longer believe that we will be the exception. We are driven to live with complete joy and happiness, and of course, in the absence of pain. We have learned acceptance of that which is beyond our control. We will never be completely free from fears. These fears act as a reminder to live within the moment. I am grateful for that perspective.

Our challenge right now is weaning from the ventilator. We are trying to determine a balance in moving forward without leading to backwards movement from aggressive change. We have to remind ourselves that James is still in the early stages of recovery. We have to embrace the passage of time, and learn to allow ourselves to slow down. We have to account for time in the healing process. We don't want to work against ourselves. We are fortunate to have hope and optimism on our side.

The pace is not as important as the direction of movement. James continues to move forward. That will have to be enough for now.

Tuesday, June 18, 2013


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.

Monday, June 17, 2013


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.

Sunday, June 16, 2013

shifting expectations

The worry has been a constant in our lives. It is hard to let go. We have learned to anticipate the worst. We have come to expect challenges and setbacks. We are always bracing ourselves for a long and rough road. We prepare for patience and endurance. We scale our expectations to avoid disappointment.

Nevertheless, James' progress continue to astound and amaze. It is absolutely beyond belief. It borders on the miraculous. We are waiting for the trend to slow to a plateau or more gradual pace. It is almost as though James and I are afraid to accept this excitement and joy. It doesn't seem real on some level.

Of course, James and I hope to be the exception. We always did, and I suppose, I still desire that same sense of optimism. The difficulties lie in knowledge of post-transplant realities. This is even more the case with re-transplant. We really do exchange one set of problems for a another, but then again, it is a completely different magnitude.

The ability to breathe is a gift without word for expression of gratitude. James is still on life support, but I know that James will breathe independently again. This is a realization of enormous hope. We need to learn to antipcate the best.


James went outside for the first time in nearly six months! We are so grateful for a very loving and dedicated ICU team. We will never be able to thank them enough! James was beaming with sunshine! o, the joy! We both glowed for hours and hours! Did I mention that James has been walking and participating in physiotherapy? He walked 20 metres on Thursday, 40 metres on Friday, and 120 metres on Saturday! I am bursting with excitement and future possibilities!

Thursday, June 13, 2013

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.


I feel truly hopeful. It really is an incredible feeling to experience a very real hope (without the sense that you are lying to yourself on some level). James has a long journey ahead and several challenges to overcome, but it all seems possible in the foreseeable future. The load feels lighter for the first time in a long while. It could be another six months, but James and I will be nesting again in our lovely home on the West Coast. (I will try to update more later).

Wednesday, June 12, 2013

moving forward

We are moving forward at slow and steady pace. We will continue to experience a range of bumps and bruises, but these are all within the realms of expectations for this stage.

James wakes every couple of hours. He is alert and responsive with some disorientation. He doesn't always remember my presence. There is some confusion of circumstance. He isn't always able to place himself in time or space. This can lead to a restlessness, and lends itself to fears and anxieties. His sleep is also haunted by vivid dreams and nightmares. These border the edge of hallucination and delirium. All of this is completely appropriate to the level of sedation and analgesia in his system.

James has had some improvements to his respiratory status that allow for gradual weaning from mechanical ventilation. He seems to be stable enough to tolerate varying levels of support depending on a number of different factors. These factors dictate the level of aggression in the weaning process. His hemodynamics and oxygen requirements are also variable and dependent on James' level of alertness. The process is seemingly complex and dynamic, but James is trending in the right direction. This morning, James was able to tolerate an hour and forty-five minutes on minimal support. This is a noteworthy achievement for rehabilitation. It was a challenge for James, but as always, James demonstrates motivation and perseverance. 

We had have further achievement in the last few days. This includes the removal of three chest drainage tubes. The remaining two tubes continue to drain at a minimal rate, but James is right on track with an appropriate post-transplant recovery interval in this regard. James is also able to participate in physiotherapy again. The progress here is also slow and difficult, but James' continues to impress with his incredible drive. He was able to sit without support at the edge of his bed for ten minutes, followed by a steady stand, and some high steps on the spot. We look forward to further improvements in strength and endurance.

Some remaining concerns include fluid overload, kidney and liver function, and gastrointestinal blockages, but again, James' body has shown a lot of resilience, and is starting to recovery independent of intensive or aggressive intervention. We can breathe a bit more easily these days.

Tuesday, June 11, 2013


sigh of relief

My cautious optimism wasn't without warrant. It seems as though James' delirium returned overnight. The subsequent anxiety had a negative impact on his hemodynamics, and James was placed back on sedation, along with an increase to his ventilator settings. His fluid balance is also back in the positive with an increase in edema and swelling. This is the dance of transplant recovery; a precarious balance of movement backwards and forwards, and an in-between settling space for hope and gratitude.

James has shown great potential for improvement. Movement forward is within the range of possibilities. We will continue to face complications, but I am certain that these days of renewed hope will soon start to out number those of anxieties and fears. Yesterday, I experienced my first sigh of relief since James' second double lung transplant. I am holding my breath again, but I am looking forward to the next letting go.

some sunshine

James seems to have turned a corner! I write with cautious optimism, but also the enthusiasm of a renewed sense of hope. James is finally moving in the right direction. His resilience and drive have never been more evident (and I know I write that a lot, but James continues to amaze me).

James' respiratory status has improved significantly, along with his kidney function, fluid balance, and gastrointestinal status. A decision was made that James was finally stable enough to wean from all the sedation. He was calm and alert through the process, and was able to tolerate the wean without delirium or hallucinations. Subsequently, James was also able to come down on his ventilator settings. It will take some time for James to be able to breathe on his own, but I am already beaming with pride. 

Yesterday, James tolerated twenty-five minutes on pressure support without negative impact to his hemodynamics. His oxygen requirements have also improved with a need for fifty to sixty percent oxygenation. It is also important to also consider the role of muscle deterioration, including the muscles that are necessary to allow for breathing. James will have limited trials on pressure support to allow these muscles to rebuild in strength and endurance. These are all essential baby steps along this journey. We are headed towards James' independent breathing!

Do you want some more sunshine? James was also able to participate in physiotherapy yesterday! He dangled on the edge of his bed, and made two separate attempts at standing. How is that for heroics? This is very impressive for James' current health status. We were all beyond pleased.

Sunday, June 9, 2013

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.

Friday, June 7, 2013

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.

Thursday, June 6, 2013


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. 

holding onto hope

We knew the process of transplant would become more difficult long before it would start to ease. James worried about me, and I did everything within my abilities to rest and reassure. We did our best to prepare ourselves. We were open and honest about our anxieties and fears. We shared our hopes and dreams for the future and for each other. We left nothing unsaid. We held each other close in a comfortable calm and silence. We would be together again soon. 

The days pass in a different sort of silence. These feelings are familiar in both the helplessness and endlessness to it all. We still have no certainties, and the unknowns are more daunting than ever before. Nothing has changed. Everything has changed. 

There are some differences. We made it to transplant. We are on the other side. Yet, I no longer have James to confide in. I can whisper to him through the layers of heavy sedation, but he cannot squeeze my hand or wipe my tears. I no longer have a clear and concrete goal to work towards. There is a lot of abstraction in the process of recovery and healing. Of course, I can dream of returning home to British Columbia together, but even that feels far from these realities. 

What is there to hold onto? There is only hope. I have to hold onto hope. 

Wednesday, June 5, 2013

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.

Sunday, June 2, 2013


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). 


Saturday, June 1, 2013

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.