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. 

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.

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

morning nausea

It is Sunday morning, and I am watching James try to sleep away the nausea. He is making an attempt to fall asleep to the background noise of snoring on one side, and blaring television and concerning cough across the room. These are the wonders and joys of a ward room. 

Nausea always bring disappointment, but it doesn't negate the accomplishments of the previous days. It was a wonderful week of small improvements. These gains are essential in the face of possible deterioration. The fear is always there; lung disease is notoriously progressive. Even the smallest of movements towards improvements in health status warrant recognition and celebration. James has been able to eat solid foods for the last few days, take several walks each day (without oxygen), and has been gradually gaining weight. These accomplishments lift our spirits. James' misery at a long-term hospitalization has been replaced with a sense of hope for a second transplant. 

We have now surpassed James' post-transplant hospitalization in length. It has been over a month in the hospital. The complications in securing funding for James' Total Parenteral Nutrition (TPN) feedings remain. There are a lot of politics (and that is without the additional factor of being an out-of-province patient). The Transplant Team and TPN Team have been very clear that it is not safe to discharge James without a solid nutritional plan. This would need to include feedings (in some form) to supplement James' minimal intake. James' gastrointestinal difficulties are further complicated by the previous failure of a g-tube, and Cystic Fibrosis-related pancreatic insufficiency (leading to malabsorption and impaired motility). These are the realities of Cystic Fibrosis and end-stage lung disease. We are fortunate and grateful that James' lung status remain stable at 12%. 

In the time it has taken me to write these paragraphs, James has been able to fall asleep (despite the musical of bodily sounds from his roommates). I will allow him to rest without the pressure of medications and exercise. Updates to follow, but for now, love, love, and more love.

another day over and done

We had a very positive day today. I'm insanely proud of James in every respect. 

We started the day with a warm tea and morning cuddles. James had been in and out of sleep for the last few hours. This is very common with various early morning intrusions of pokes and prods. The doctors arrived at a reasonable hour with a disappointing consensus that James will need to remain in the hospital for at least a few more days. Discharge discussions and decision-making seem to be on hold. It is essential to determine a long-term nutritional plan that takes into account James' variable daily intake and gastrointestinal issues, and includes Total Parenteral Nutrition (TPN) as a prime source of nutrition. Of course, out-of-province funding further complicates the situation. 

James woke slowly with his computer as a companion. I escaped for an hour with some very dear friends from within our ever-growing transplant "family". These social excursions ease the isolation of the transplant process. I allow laughter to replace the loneliness. We completely understand each other. I feel a level of embrace and acceptance that has always been foreign to me. My expressions of gratitude will never be enough here. We never have to feel alone. We never are alone. 

James walked to the Transplant Gym for the first time in months. That's right, James walked to the Transplant Gym. Can you see my grin? I am aglow. This is an incredible feat for someone with serious limitations of breathlessness and fatigue. A precedence has been set. I will have to get some streamers for his walker.

In the afternoon, James was relocated from his o-so-private room to a ward room in the company of three other patients. We made the immediate decision to escape the hospital. It was absolutely wonderful to be home with James for a few hours. Ophelia pranced around the apartment with a playfulness that could only be attributed to a complete happiness and joy at James' presence. (I refute all accusations of anthropomorphism). I made a chicken soup, and James relished in the comforts of home. It was a sweet reminder of the relative normalcy of our lives out of the hospital (and a bitter tease to return back to a loud and crowded hospital room). The room change is less than ideal, but James will continue to cope with the same incredible strength and endurance.

Did I mention that I was proud of him? 

James is a superhero. 

how is James? a day in the hospital

This is a surprisingly difficult question to answer. I wish there were a simple answer. The days in the hospital are monotonous and mind-numbingly slow. We always seem to be waiting; for a doctor, a test, or another hour to pass. James and I create our own structure and routine. We mark the small improvements and accomplishments of the passing days. We acknowledge the gains of each additional hour spent out of bed, or a few independent steps in the hallways (sans oxygen). Every sip of a Resource supplement warrants a celebration. These gains may seem meaningless, but each step represents movement towards the direction of discharge. Lung disease may be progressive, but James refuses to allow himself to deteriorate within the areas of his control. I know that every bite of food takes effort, and every minute out of bed is banked in hours of sleep, but James continues to endure. We may fall apart on a regular basis, but I'm insanely proud of his heroic push to maintain (and even improve) his health status.

Every morning, I wake to an internal alarm and start my day slowly with cat cuddles and a protein-rich breakfast. The warmth of my bed is a lure in the morning, and a reward at the end of the day. No amount of sleep seems to resolve my fatigue (and it is never easy to leave a cat curled by your side). I stumble through my routine, clear the dishes from the sink and drying rack, and boil the kettle for Jamie's tea. James' tea is a morning staple loaded with enough sugar and cream to make any morning delightful. My caffeine cravings begin with his brew. A month in hospital would create a coffee addict out of the best of us. I depend on the cold morning air and a brisk walk to the hospital to get me through the first part of the day, but by early afternoon, I'll be walking in my near sleep to the Starbucks for a daily dose of caffeine.

I arrive at the hospital either to find James bent over a basin, or ready to indulge his own caffeine addiction. The difference will determine the rest of the day. The rare appearance of another episode of nausea and vomiting is always fraught with fears of more days on end in hospital hugging a basin. James has had enough basin bonding to last a lifetime. (It has been an enduring relationship. That is some serious commitment). Fortunately, James has been having fewer episodes.

I take a few minutes aside to clean and organize the room, and scavenge James' breakfast tray for edibles. The room is often littered with empty packages of no longer sterile bandages and wipes from midnight glucose readings and early morning blood draws. The activities of the day are concentrated between the early hour of five and seven in the morning. It is a fury of nurses in and out of the room for vital signs, weights, and several rounds of medications. James has been in a light sleep for hours. He braces himself for the bright overhead lights. We share anecdotes of the night, fragments of dreams, and assurances that there were a decent quantity of cat cuddles for both of us. 

The waiting is soon to begin. Did I not mention that the hospital is one perpetual wait?

James will move to sit in a chair for the morning, and I often stretch out on the bed. We snack on fresh fruit, and at James request, I seek out a Tim Horton's for muffins or soup. James will disappear into his laptop, and resurface to share music, news and videos. I knit and knit (and knit) with music in the background. I eventually become restless and determine an appropriate time to disappear for a coffee (always weighing the possibilities that I will miss the appearance of a doctor or specialist). We move through the day at a snail's pace (and that is an understatement).

We are both ready to return to bed by the time lunch arrives (or rather, a foul-smelling tray that resembles something edible in colour and texture, but is more often than not, a test of stomach strength). We salvage the fresh fruit and vegetables, apple juice, and condiments for our stash. This is definitely not the Cystic Fibrosis ward at St. Michael's hospital. The chips and chocolate bars will have to come from our own budget. 

James has physiotherapy in the Transplant Gym three times a week in the early afternoon. This is a delightful exercise (pun-intended) of co-ordination between a wheelchair, oxygen tank, and IV pole. We laugh a lot, and manage through the bumps and bruises. James' determination at the Transplant Gym really is a testament to his determination and strength. He has become very weak and short of breath from the last month in hospital, but James always completes his routine. He pushes through the discomfort, with breaks to rest and listen to his body, and with that, is re-building strength and endurance. 

He earns a long nap in the afternoon, and I often return home for a few hours. This is my opportunity to do house chores, grocery shopping, laundry, and so forth. I am also trying to follow through on my commitment to get back into exercise on a regular basis. We touch base in the late afternoon, and I often make dinner to bring back to the hospital. We watch shows in the evening, and play various games. (My Scrabble skills are improving each and every day).

We procrastinate to say good night and wish each other the sweetest of sweet dreams. Some nights I fall asleep on a cot beside his bed, but I eventually find my way back across the street to a very demanding feline. (My long absences in the day have become a source of distress. Ophelia has become very vocal in expressing her discontent).

That is a novel of a blog post. I'll end it here (for now):

 

gratitude and acceptance (and hospital update, take three)

James is ever so patiently tolerating the hospital experience. The long nights in hospital can lend themselves to some negative thoughts and feelings, but James is always sunshine in the morning. We both tend to leave our fears to late at night. It seems that loneliness begs the attention of our deepest emotions and allows sadness to make an appearance. We can spare a few tears here and there, but James and I take these moments as reminders to spend the days in fun and laughter. 

I am learning a lot about acceptance. It allows me to move forward with a lot more confidence in the present and for the future. It is almost a form of faith. We do not allow our fears to control our decisions. We move forward together with a focus on everything that is within our control. We are doing everything right, both for ourselves, and for each other; by ourselves and together. 

I write a lot about gratitude. We find gratitude for the perspective of our circumstance, rather than for the limitations of our circumstance. We do not take for granted our time together. We can be honest with ourselves about the realities of transplant, and still close our eyes at night without regrets. We find value in the important aspects of our lives. I fall more and more in love with James each and every day. He wrote me a card with a similar profession. There is something special here to protect. 

As for a health update, James started total parenteral nutrition (TPN) last night for supplemental nutrition through his portacath. There is a relief in knowing that James' nutritional needs are being met. This is currently a short-term solution for during hospitalizations. James may not be able to obtain coverage for extended care at home, because of the cross-province health care agreement that only allows for out of province acute care, rather than in home care (or chronic care). This is frustrating for a number of different reasons, but for the most part, I feel it is essential to optimize James' health status (including nutrition status) for transplant. This should be a shared goal with the Transplant Team, but of course, I also understand that there are limited available health resources (and it is certainly not ideal for James to remain in hospital). The fact that these are unprecedented circumstances doesn't negate the need to address the issues. We will work with the social workers on finding a solution prior to discharge. I will never be done advocating for James. 

James also went to the Transplant Gym for physiotherapy in the afternoon (and showed off his fancy shmancy IV pole). He completely amazes me with his ability to push through the discomforts of being in hospital, and continue towards the goal of transplant. He did a series of stretches and strength exercises, along with ten minutes of cardiovascular exercise on a stationary bicycle. He was exhausted (and nursing a headache), but still managed to get through the basic workout. That's some serious determination. Let's also take into consideration the fact that James has been in a hospital bed since Christmas. I'm insanely proud of him. Can you tell?

hospital update, again.

This would be the second post of the day. The first post was actually a scheduled post to acknowledge our six months anniversary, because it is important to celebrate the months these days. It may seem unnecessary (and silly, to some extent), but I am reminded of being post-transplant. At first, James counted the days. This slowly became weeks and months, and eventually, a year. o, how wonderful is was to be 1 year post-transplant. As James' health started to decline again, James and I returned to counting months and weeks post-transplant. This was not a conscious decision. We find reasons to celebrate, because James and I need these small victories to note the passage of time. Our world moves at a slow pace. Our lives are on hold. It is not easy to wait for transplant. These celebrations remind us to focus on living (rather than the alternative). We continue to move forward. It is essential to our survival. 

James seems to be genuinely recovering from this nausea and vomiting episode. We requested a combination of dextrose and saline to give James some energy (instead of the normal saline that has been hydrating him for the last few days). It seems to have made a difference. James has been able to keep down clear liquids and is ready to try solids for dinner tonight. 

A referral for total parenteral nutrition is also in the works, because James' weight loss is substantial enough to be a cause for concern. This is a frustrating and painful decision, because James works really hard to maintain his weight with 3000 to 3500 calories a day (and that is without supplemental nutritional shakes or beverages). In the first year post-transplant, James gained from 88lbs to 133lbs. It hurts to watch that weight disappear, but it can take up to a week (or longer) for James' eating to normalize post-hospitalizations, and with inpatient stays almost every two to three weeks, James is at risk of becoming malnourished. He is already clinically underweight and it really has become nearly impossible for him to recover lost weight from frequent hospitalizations. This is not for lack of effort. His body expends a lot of energy simply to breathe, and digestion requires even more energy to gain any benefit at all from his diet. We will do everything that we need for him to be as healthy as possible for transplant and post-transplant recovery. 

hospital update

Holidays are slow at the hospital. All expectations for tests, appointments, and referrals are on hold for a few more days, and with that, James may be in the hospital for a few more days. He is recovering at his own pace, starting to take in fluids and solids, but not enough to be granted a discharge pass. We will need need a nutrition plan in place to get James back on track with packing in the calories, and for supplemental nutrition during these frequent hospitalizations. James works really hard to maintain his weight at home, but it is becoming increasingly difficult with these nausea and vomiting episodes. Nonetheless, I don't think he will be able to escape the Transplant Gym tomorrow, inpatient or not. Exercise is all too important (and a natural appetite stimulant). We are also waiting on another home oxygen assessment, because James' blood oxygen saturation continues to decrease on exertion. All that being said, James is in good spirits, and the trend is definitely towards recovery and improvement. We don't feel a lot of worry or concern, because our focus is on getting through the days with as much positive energy as possible. We are fortunate to be surrounded by a wonderful transplant community, or rather, a transplant family. There is a lot of love and warmth all around us (and that is an understatement).

Last night, James and I both curled up in James' hospital bed, fell asleep holding hands, and discretely broke the "no overnight" rule (with the indirect permission of the nurse that closed the lights and curtains, and wished us a "good night"). Neither of us manage a lot of sleep during these hospitalizations. We were in agreement that we would rather be awake and together than wide-eyed and longing for each other. We both had a better night with the company of one another. It is clear that the nearness of loved ones are an essential part of healing (for both of us, that is). 

I came home for a few hours in the morning to find Ophelia in distress at my overnight absence. She was meowing and meowing (and meowing) while climbing all over me and licking my face. She proceeded to protest my overnight with James by following me from room to room and repeating this demand for affection and attention. She is now curled up by my side, asleep and content, with a false reassurance that I am staying home. I will be returning to the hospital in twenty minutes or so, but I cannot imagine spending another night. Ophelia has been very adaptable to all these transitions and changes, but it feels cruel to leave her alone for more than a single night. James and I are both so grateful to have a feline friend with us in Toronto. We could not have left her behind. With that, James went to bed last night wishing for his Bombay; a cat that would happily sleep under the covers in James' hospital room for days at a time.

Edit: I spoke too soon, or rather, I wrote too soon. In the short hour that I was gone from the hospital, James started to feel sick again. I returned to find him hugging a basin. I will write more soon, but for now, James needs a hand on his back.

holidays in the hospital

As many of you know from "James' Quest For Lungs" on Facebook, James spent a large portion of the holidays in the hospital. James' resilience remains as remarkable as always, along with a positive attitude to compliment his enduring (and seemingly infinite) optimism. He is always moving forward with complete acceptance of the recent past and readiness for the distant future. He finds the light in the hardest of moments and warms my heart with these sweet reminders. 

James and I spent a wonderful Christmas Eve with my father's family that was reminiscent of James' childhood memories. He relished in the joy of being surrounded by the comfort and warmth of family, and the constant demands of canine and feline affections. Unfortunately, James awoke Christmas coughing green and hugging a basin. We opened presents and stockings between ice packs, back rubs, and a competing pile of Kleenex to wrapping paper. He slept for a while on the couch to be near the family, but by the afternoon, James was feeling miserable. The on-call medical team gave recommendations to head towards the emergency department back in Toronto for a highly probable admission on Christmas day. 

In all honesty, I was disheartened. I have the previous experiences to know that lung disease does not take a holiday, but I continue to hold out for hope of a different future. James was promptly admitted onto the transplant floor and given the luxury of a private room for those on isolation precautions. A few days later, James was discharged from the hospital, and back at home to snuggle in bed with me. It was then that James turns to me, and with all the reassurance in the world, remarks, "You know, I really did have a nice Christmas." That, right there, is James. He can always find the light (and without the need for conscious effort). 

The following day, James was re-admitted through the ER by ambulance. It had taken almost thirty minutes and the kindness of strangers to get James home from the hospital in his wheelchair a few days earlier, because of escalating snowbanks and uncleared sidewalks. We couldn't venture across the street to the ER alone without a personal shovel or wheelchair snowplow. We wouldn't have made it very far, and James needed some immediate attention. The paramedics were exceptional. We truly appreciate the generosity of simple kindness.

James was given a quiet and dark room to find some comfort and sleep. We were pleased to learn that his lungs remain clear from infection and fluids. The gastrointestinal concerns are similar to the past: a form of pseudo-blockage that is common in Cystic Fibrosis. James has had previous repeat episodes that seem to accompany his low lung function and weight status. This is an unpleasant, but familiar path. We will be able to wade through together.

That's all for now. I will continue to update. Thank you to everyone for your prayers and warm thoughts. We feel so grateful and humbled by all of your love. (Our wall of love continues to grow back at home. You can message us here or on Facebook for our address to contribute). Please continue to share our story to help spread the word about the importance of organ and tissue donation.

be an organ donor

There have been a lot of emotions in the last few days. Toronto has been doing a record number of lung transplants, and James and I have seen many friends from the Transplant Gym breathe easy for the first time in years (without the support of oxygen). There is an incredible amount of joy for them. We remember that feeling. We remember that glow. We also know of the fear that comes with complications. It is hard to find words of comfort. These friends have become part of a very special community, or rather, a family of tightly knit lives. We understand the experience at a level that is beyond description. We don't need words. We lean on each other. We celebrate with each other. We mourn with each other. We feel for each other at a very deep level. There is no competition. We want each and everyone of our loved ones to get the right set of lungs, at the right time, even with the knowledge that about fifty percent will not survive the wait. That later part is harder to talk about. We need to believe otherwise, but there are always reminders of the reality of living so close to death.

This week, a friend of mine, a "Cyster Wife", said good-bye to her fiance. It was her birthday, and had been exactly a year to the date of his proposal. He, like James, had Cystic Fibrosis, and was at 12% lung function awaiting a second double-lung transplant. The CF Wives come together during these times. We pray for the family of loved ones lost. We send love (and love and more love) in their direction. We feel the pain as though it was our own and grieve alongside them. We hold our loved ones closer and closer. We all deserve to breathe easy. Cystic Fibrosis is a cruel disease.

The lack of available organs for transplant is another part of this story. Please visit the links of the right to register online in Ontario and British Columbia. Talk to your friends and family about your wishes. We need to open the dialogue. It could be you. It could be someone you love.

Edit: Good news. Another friend got his call. It will be a few more hours to find out whether the lungs are a viable match. 

According to the Trillium Gift of Life Network, James is one of 83 people currently waiting for a lung transplant in Toronto, Ontario. There have been 104 lung transplants to date in 2012. We really are at the international centre for lung transplants. My hope is that James can become one of those statistics. These are hopeful numbers.

remembering Spencer

There is an incredible group of women on Facebook in a CF Wives Group ("Cyster Wives"). These women have strength and courage beyond description. It is a safe and loving environment to be open and honest about the both the highs and lows of having a loved one with Cystic Fibrosis. We support one another through the difficult moments, and celebrate each positive step forward.

Please take a few moments to visit "Let's Solve the Riddle of CF" in memory of Spencer Riddle. Today, James and I light a yahrzeit candle in honor of Spencer's legacy, and for Nikki, Spencer's loving and devoted wife. We have placed it under our (new) tree to send love and warmth to Nikki and all of Spencer's loved ones on this holiday season.

love love love

week of clinics (and back in hospital)

I wrote the following post last night with the intention of a positive conclusion to the week, but I will have to include a retraction of sorts. I have written extensively about the recognition that everything can change in an instant, and of course, it does. James was admitted to Toronto General early in the morning following a long and sleepless night together. I will update more about the admission in the days to come. Nonetheless, it is important to acknowledge the optimism and accomplishments of the previous days: 

It has been a week of clinic appointments. This translates into long days of waiting, waiting, and more waiting (and a couple of tests and appointments in between). We feel fortunate to have be seen within three to four hours of our scheduled appointments. We have come to expect these extended delays (without acknowledgments of the waits or apologies from the team). We have left the building in the past through dark and empty halls. We are always grateful to head home before the receptionists have locked the doors and closed the lights for the evening. 

We were scheduled to be at St. Michael's on Tuesday and Friday, and at Toronto General on Wednesday. James was also to be at Toronto General for others tests and physiotherapy (Transplant Gym) on Wednesday, Thursday, and Friday. It would be an understatement to suggest that our lives have revolved around the hospital this last week. 

Nevertheless, James continues to be stable (in the relative sense of the term). We are relieved that James has no signs of infection. (His chest x-ray remains clear. He has no fever or sputum). On the other hand, James' white cell counts have been low for a couple months. Several of his medications are being held in hopes of recovering these levels. He will also be given Neupogen shots for the next couple of days to help regenerate some of his immune function. These have resulted in excruciating muscle pain, but James always knows to manage his pain before it is beyond his control. 

On a more positive note, James, in his incredible determination, has been able to gain back a couple pounds of all the weight lost from his recent gastrointesinal episodes. He is eating a near three thousand calories every day, and truly pushing himself, despite a lack of appetite and low energy. We are both feeling very proud of his weight gain. We hope this upward trend will continue.

television show

James and I were filmed for a television show in September to help raise awareness about the need for organ donation and to help finance James' double lung transplant. The difference in James is startling to me. The filming was only a few weeks ago, but Jamie was able to walk at a fast pace, and to some degree, a long distance, without a lot of support. It is wonderful to hear the passion in his voice. The optimism and hope was ever present in those first few weeks. I would love to see some of that colour return to his face, along with those round (and o so pinchable) cheeks. 

The first video clip is unlisted here.  

Here is another clip from the segment:

 

assessment day two

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

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

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

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

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