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

pain management

This is the second post of the day. 

Pain management continues to be a considerable issue of concern. It is difficult to balance pain management and sedation. James has to be awake to take advantage of Patient Controlled Analgesia (PCA), but James has been on sedation, because of his excruciating pain. The team is working on finding the right balance of medication. 

Unfortunately, James is back on pressure control on the ventilator, because of increasing carbon dioxide levels. This is most likely in relation to the difficulties with high levels of sedation and analgesic medications. These agents can depress the respiratory system, and James has developed a very high tolerance. Ideally, James will be able to be awake with reasonable pain management.

We have to remember that within all the euphoria and excitement of James' progress, James will have complications. We must remain hopeful and optimistic, but it is also important to prepare ourselves for invariable difficulties. Recovery is a long process. We need to have realistic expectations. There is still reason to celebrate. We are moving forward.

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.

lungs!

Lungs! A donor has been found for James! He will be in the OR tonight! We are overwhelmed with emotions. Thank you to everyone for your prayers, love, and support! We must also remember our donor family. Our love is with them during a time of incredible grief. Thank you for your generous and courageous decision!

gratitude

I am short of words. Instead, I will focus on gratitude.

I am grateful for James.
I am grateful for James' strength and determination.
I am grateful for James' laughter and smile.
I am grateful for James' passion for life.

I am grateful for James' love.

I am grateful for organ donation and transplant.

I am grateful for activism and advocacy.

I am grateful for access to world-class medical care.

I am grateful for an exceptional team of professionals in the ICU.

I am grateful for feline cuddles and kisses.

I am grateful for sunshine.

I am grateful for hope.

I am grateful for friends, family, and community.

I am grateful for gratitude.

procedures

It has been another week of procedures.

On Tuesday, James had his monthly tracheostomy change. This has previously caused a lot of pain and discomfort. The change has become routine, but it is not without its own anxieties. James has often required mechanical ventilation from the level of sedation. It is frightening to wake up on a ventilator with no memory of the process or procedure. Nevertheless, James did phenomenally well. I was allowed to remian in his room and hold his hand. It was difficult to watch him cough and gasp, and reach out for help to breathe (even with heavy sedation). He was slow to wake, but I was grateful to be bedside.

Yesterday, James had a bronchoscopy, followed by a re-suturing of his ECMO circuit to his shoulder. He has had very thick secretions that are difficult for him to clear through independent coughing and chest physiotherapy. The infection also appears to have caused a collapse in his upper right lung. The hope was that a bronchoscopy would help to open James' airways. The procedure was largely uneventful, and James required a minimal amount of sedation.

Unfortunately, James had a lot of anxieties about the bronchoscopy, and the possibilities for complications. These are valid fears based on past experiences, and I was limited in reassurances and distractions. Once again, I was grateful for permission to remain bedside. This really does make a world of difference for both of us. It is exceptional to be involved in his care at all possible levels. 

Finally, James' ECMO circuit required re-suturing (again). This has become a regular occurrence. It is difficult for sutures to remain intact while James is awake, and to some extent, James is also mobile and ambulatory (with the presence of a perfusionist). This was a fast and simple procedure, and with a hand to hold, James managed through the pain of freezing and needles. He is amazing at taking it all in strides.

We look forward to a weekend without event. Unless, James gets his call. That would be a more than welcome procedure.

so far

We have come so far, and it is hard to look back, but it an important reminder of James' progress and improvement. We have a world of gratitude for the exceptional medical care at Toronto General Hospital, and for a loving and supportive community of family, friends, and strangers. We only want to move forward. (Click photographs to enlarge).

love, love, and more love

Toronto Sun (Friday, May 17, 2013)

He was so easy to fall in love with . . .

making sense of it all?

I ache for movement forward, or in the least, something different. 

Our lives revolve around James' disease. This was never the case. We always lived with the limitations and challenges, but it did not define our relationship. This has all changed in the last few months. We can no longer escape the realities of chronic illness. James' home has become the ICU (and by extension, I live there with him). James is completely dependent on a team of professionals for every aspect of his care. He has lost almost all of his independence and autonomy. He has lost almost all of his quality of life.

James was admitted to Toronto General on Christmas Day (for his fifth or sixth admission since arriving back in Toronto on August 30, 2012). There have been fifty lung transplants at Toronto General Hospital since January 1, 2013. This seems impossible to reconcile with our current circumstances. We know that James is the highest priority on the list. We know that James is listed as "rapidly deteriorating". We know that James' case is discussed on a daily basis. We understand all of this on an intellectual and cognitive level, but it is still difficult to make sense of it on an emotional level. 

Why are we still waiting? How long will we have to wait? How long can this go on for?

There are no answers to these questions. We simply have to keep faith. We have to trust the team. We have to believe that James has a fighting chance. Otherwise, James and I would not be in this situation. James is stable enough to wait for transplant. We will have to keep waiting. We have no other choice.

updates and ramblings of sorts

I want to write a positive post. I want there to be something to write about. There are not a lot changes from day to day. There are hard days, and harder days. We are both completely exhausted. We sleep a lot of the time. Sleep offers a reprieve from an almost constant anguish. We long for a future together, or in the least, an existence outside of this institution. It is not easy to laugh and smile. We try to fill the hours. We try to fill the empty space. There remains an endlessness to it all. 

We made it through the long weekend without complications. James will hopefully start to feel an improvement with this recent rounds of antibiotics. We have been making an attempt to follow a routine to structure our days and pass the time. This has been more difficult with James' level of fatigue and malaise.

James was not able to do a lot of physiotherapy last week, but he is determined to get back on track. We hope to start the week with a walk in the halls (rather than the treadmill), but that is completely dependent on the availability of staffing resources. It takes a team to movie all of James' equipment, and policy requires the presence of two perfusionists. Regardless, James will start the day with some movement. He does not want to deteriorate in physical strength, because it will be essential for his recovery post-transplant.

It has also been another month since James' tracheostomy site has been changed. These changes have been very painful and uncomfortable, and often result in a lot of bleeding, because of the Heparin (to prevent clotting in the ECMO circuit). James was sedated for the last procedure to prevent the immediate discomfort of the change. This led to a decrease in respiratory rate. James stopped breathing, and was forced back on a ventilator. He found it very distressing to wake on the ventilator, but there is not a preferable alternative. 

Once again, James and I feel trapped in the realities of the ICU. We must find a way to continue to move forward. It is hard to focus on the day to day, but there always one hour to the next. We find our strength in our love for one another. We will not allow desperation to weaken this bond, but rather, James and I grow closer in crisis. It becomes our resolve to continue to fight for survival. 

dark days

We wait. We wait. We wait. Nothing happens. We must find a way to keep our spirits up. These feel like dark days. We need some light in our lives.

 

Edit: James has another Pseudomonas infection. There is a collapse in his upper right lung, and pneumonia in his left lung. He will be treated with chest physiotherapy and another round of antibiotics. He is also positive for a CMV infection. The team has not made a decision about anti-viral treatment. This is all within the realm of expectation for extended ICU hospitalization. We hope that James' fatigue and malaise will start to improve with treatment.

surviving

Again, I am watching James sleep in the early morning. There is a peace and calm about him. He looks so very small surrounded by tubes and machines. It is hard to describe my love for this man. It is an intense yearning for nearness. There is complete reassurance in a simple handhold. I feel best in his presence. I feel safe in his presence. He doesn't need to be awake for me to look upon him with an enduring admiration for his incredible strength and courage. His drive and determination demonstrate a remarkable fight to survive. He exudes a deep passion for love and life. He always finds the light. He is my light. He is my fight. 

The days continue to be rough for James. He is experiencing a lot of pain and discomfort. He also continues to cough small amounts of blood (from the NG tube replacement last week and Heparin to prevent ECMO clots). He is very pale from low hemoglobin, and will need another blood transfusion. Each transfusion introduces antibodies into James' blood that could cause post-transplant complications. We are always aware of the potential for long-term side effects. 

James speaks with hope and optimism for a future beyond transplant. We do not allow ourselves to give into thoughts and feelings of despair, but there remains some level of discouragement. We are desperate to start our lives together. We miss the normalcies of life outside an institution. There is an ebb and flow to our moods. We give ourselves permission to feel down, but at the same time, a conscious effort is made to shift towards a more positive state of being. There is always reason for hope.

morning rambling

I didn't sleep last night. I saw every hour, and finally, at 4:30am, I let go of any hopes for sleep. I stumbled through a morning routine in a sleepless stupor with wide eyes and dread for the day ahead. I headed to the hospital in these early hours with the knowledge of a long day ahead. Now, I am silently typing in the corner of James' room, and watching him in the calm of sleep.

We are still waiting for transplant. How is that possible? We have been in Toronto since August 31, 2012. James has been at the (hypothetical) "top" of the list for at least three months. (There is not an actual hierarchical list). He is listed as "rapidly deteriorating" or rather, the highest priority amongst those waiting for transplant. It doesn't make sense.

We have seen many of our dear friends through the post-transplant recovery period. We have sent them warm wishes on their journies back home. We  have become absent from the treadmill room and the transplant community. We feel the isolation of long-term hospitalization. It is a painful and cruel existence in the ICU. We are finding it harder and harder to pass the time. We feel completely trapped.

We know the importance of remaining positive. It is not an easy shift away from the lure of our sadness and fears. We seek hope in transplant. It allows us to move forward without feeling a desperation or despair for the future. We are grateful that James is stable enough to wait for transplant. Gratitude can momentarily ease the pain. It serves as an important reminder: These are our precious moments. We can't take a single moment for granted. We must embrace them with a love of life. We must find a life in this existence.

Lungiversary!

Happy Lungiversary to James! James, I am so proud of you. Today, James is two years post-transplant! We will celebrate James' life, and honour the memory of James' organ donor! James would not be alive without that courageous and generous decision to be an organ donor! We feel very blessed!

anniversaries

I have been fighting a cold, but I am finally well enough to function outside of my bedroom. I am sitting in the corner of James' hospital room, wearing a mask, and keeping my distance. It has been three days since I have looked upon him. I have been aching for him. It is painful to be apart.

James has also had a rough few days. His NG tube became blocked again, and needed to be replaced (again). The procedure took several attempts, and was very painful and uncomfortable for James. It resulted in a lot of bleeding that continued throughout the night and into his lungs. He did not require a transfusion, and the bleeding has since slowed down, but I understand that it was frightening for everyone. He is still coughing blood, but there is a lot less concern. No further intervention will be necessary.

Two years ago, on May 11, 2011, James received his first life-saving phone call. The call came in the morning, and was followed by a 19 hour wait before heading into surgery in the early hours on May 12, 2011. It was during that wait that James and I shared our dreams for the future, for our future, and James proposed to me. Everything felt possible. Everything was possible. The surgery was a success, and James and I had the best year of our lives. We were both happier and healthier than ever imagined for ourselves. We were living long-distance, because I had to finish my degree. James flew back and forth between Victoria and Toronto for medical appointments, and of course, to be with me. We couldn't wait for the wedding to start our lives together.

Unfortunately, James' lung function had a slight decline in the days following his one year post-transplant bronchoscopy. It was a gradual decline that could be attributed to the bronchoscopy and grade one acute rejection. It was thought to be very treatable. It was not thought to be a cause for concern. James developed Shingles virus that invariably delayed treatment. We never imagined that everything could (and would) change overnight. We now know that everything can change in an instant.

It was a few weeks later that James and I had our magical evening. It was a celebration of life. Our wedding anniversary also became the anniversary of James' decline. His lung function took a sharp decline the following morning. Our lives have since revolved around hospitals, doctors, and tests. We went from euphoria to devastation. We didn't believe James had a long time to live. He didn't. James is still alive, because of the incredible medical expertise and care at Toronto General Hospital. We are forever grateful. 

The wait continues. James needs a second double lung transplant. We will not be leaving this ICU without it.

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.

resolve

We are back on an upward trend, or in the least, back to a baseline of relative "stability". The cause of James' gastrointestinal distress was deemed to be another pseudo-blockage as a result of gastrointestinal dysmotility in combination with low lung function. It resolved with the use of anti-emetic medications, and without the need for more intrusive measures. There has been some discussion about a different type of feeding tube that would provide nourishment directly into his small bowel. This will not be necessary as long as James can remain asymptomatic. 

We hope to find a balance with prophylactic anti-emetic medications to avoid further interventions. Of course, it is also important to consider side effects with long-term usage that could impact the function of James' heart. There is always something, but for now, James has had enough pokes and prods to last a lifetime (or several lifetimes).

endless

I am writing with a box of kleenex by my side. It has become my constant companion. The tears just flow and I have no control. This is the truth to a larger extent. There is very little left. What kind of life is this? How do you live in an ICU for months? We should not have to wait this long in these circumstances. We are told that this was never the intention. James is one of the first patient on ECMO for this length of time to be awake, alert, and oriented (and not to mention, able to participate in physiotherapy). I cannot even begin to imagine his rehabilitation at this point. We could be here for many more months. It doesn't only feel endless. It is endless.

That all being said, James and I must find a way to remain focused on the positive. There is always hope on many different levels. We can hope for a successful transplant. We can hope for comfort and calm. We can hope for genuine care, compassion, and empathy. We can hope for autonomy and voice. We can hope for laughter. We can hope for love.

Love can also be endless. I believe it is.