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.
Showing posts with label life. Show all posts
Showing posts with label life. Show all posts
Thursday, May 30, 2013
Saturday, May 4, 2013
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.
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.
Tuesday, March 12, 2013
sadness
I allow myself to feel the extent of my emotions, but the depth and intensity of these emotions translate into an exhaustion that is beyond the already constant fatigue. It makes it harder to move beyond the sadness (and the so-called negative cognitive bias of my depression). It is a conscious effort to focus on the positive. I consider the strength of our love for one another. I embrace the glow of our post-transplant friends. I imagine the possibilities for post-transplant health, and I remind myself of our hopes for a future together. It does not negate the sadness, but it allows for movement forward on these o so hard days of waiting for transplant. The wait feels different at this point. It feels critical and urgent, and I ache with a pain of uncertainties.
James is ready for transplant. He is building strength and endurance, and I have my own glow of pride for his drive and determination. He continues to make strides in physiotherapy on the treadmill and with arm and leg weights. He sits in a chair for several hours each day. James does everything within his abilities to maintain a positive resolve. There remain moments of acute anxiety and fear, but the tension does not linger beyond reassurance. There is safety in the presence of love, and I am grateful to be able to bring comfort and calm with warm hands and a smile of admiration.
I still arrive at the hospital to be James' morning sunshine. He is slow to rouse, but always with a light in his eyes. We create our own structure and routine within these endless days of waiting (and waiting). We sit quietly in light conversation or to a background of music. We play games on the iPad, and watch television on his computer. James reads in his bed, and I continue to contribute to an ever-growing collection of handmade knits. We are grateful for these moments of normalcy, but there is still a shadow of sadness in the knowledge that this has become our "normal". We are never alone. We are in constant wait.
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| ECMO or ECLS (Artificial Lungs) |
Sunday, February 3, 2013
hospital hair!
a post about hospital hair! well, some photos, at least.
James has not had a haircut in months, and the weeks in hospital left his hair less than desirable. Showering takes a lot of energy, and is completely exhausting for James (and even with my help, and a shower chair, James is left shivering and breathless). ReadyBath claims to be a water-free shampoo and conditioner in cap form. We were weary at first, and James was tempted to research the chemical ingredients list, but decided it was worth a try. It comes with strict instructions to discard after use (with immediate disposal should it become dry). It left an odd gel-like film on James' hair, and thus, became the first and last time:
James has not had a haircut in months, and the weeks in hospital left his hair less than desirable. Showering takes a lot of energy, and is completely exhausting for James (and even with my help, and a shower chair, James is left shivering and breathless). ReadyBath claims to be a water-free shampoo and conditioner in cap form. We were weary at first, and James was tempted to research the chemical ingredients list, but decided it was worth a try. It comes with strict instructions to discard after use (with immediate disposal should it become dry). It left an odd gel-like film on James' hair, and thus, became the first and last time:
and today, James (finally) got a haircut in the hospital:
Saturday, January 19, 2013
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):
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.
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).
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.
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):
Thursday, January 10, 2013
updates from the never-ending hospital stay
Today, James was the centre of attention to an audience of ten doctors. He certainly makes for an interesting case study in both Cystic Fibrosis and lung transplant. We learned that James may be in the hospital for a few more weeks. He is still holding out for hope that it could be only a week (or less, of course). The goal is to determine James' energy needs for weight gain through TPN. It could take a few weeks to slowly continue to increase the calories to that level and to transition from 24 hour feeds to 12 hour (overnight) feeds. There is some disappointment at the thought of remaining in hospital even a minute longer, but James is prepared to do everything necessary to optimize his health for transplant. This may also allow time for the hospital to contact the Ministry of Health in British Columbia to request funding for TPN at home.
For now, James' lung health appears to be relatively stable and holding steady at 12%. He is maintaining his weight in the same range with some normal variation in both directions. He had a rough morning with the return of a short-lived bout of nausea and vomiting, but James has gotten comfortable hugging a basin with the knowledge that the discomfort is a temporary condition. Once the medications start to work, he is ready for his routine tea-sipping and cookies.
I packed up my bedside cot at the realization that it is not feasible for me to sleep at the hospital with James for weeks. We will both have to learn to sleep in the absence of one another. I know Ophelia will definitely not protest either the return of my company or the spare room in bed. She loves to sleep on a pillow by my head (and wake me in the night with kisses and kneading).
I am feeling very grateful for my extended transplant "family" here at the hospital. I've always considered myself to be rather shy, and socially awkward, to some extent, but I have been embraced by a wonderful group of caring individuals. There is an immediate connection with a sense of reciprocal understanding that can only arise from shared circumstance and firsthand experiences. We come from a range of different backgrounds, but that doesn't seem to prevent the building of bonds. There is no reason to ever feel alone; spare those late night encounters with an irrational loneliness, that is.
We are coping exactly as would be expected given the circumstances. (That is my standard response these days). Our exhaustion remains. There are days that perpetual fatigue can weigh heavily on our moods, but James and I rarely remain low for any length of time. We seem to balance each other out, and lift each other up during moments of need. There has always been a lot more laughter than tears between us. That being said, I think that teary nights allow for the intimacy of shared emotions. The hard moments serve as a reminder of our love and gratitude for an ever-present shoulder to cry on. Those difficult nights reinforce our promise to always be there for each other. We get each other through it all. We will continue to get each other through it all.
For now, James' lung health appears to be relatively stable and holding steady at 12%. He is maintaining his weight in the same range with some normal variation in both directions. He had a rough morning with the return of a short-lived bout of nausea and vomiting, but James has gotten comfortable hugging a basin with the knowledge that the discomfort is a temporary condition. Once the medications start to work, he is ready for his routine tea-sipping and cookies.
I packed up my bedside cot at the realization that it is not feasible for me to sleep at the hospital with James for weeks. We will both have to learn to sleep in the absence of one another. I know Ophelia will definitely not protest either the return of my company or the spare room in bed. She loves to sleep on a pillow by my head (and wake me in the night with kisses and kneading).
I am feeling very grateful for my extended transplant "family" here at the hospital. I've always considered myself to be rather shy, and socially awkward, to some extent, but I have been embraced by a wonderful group of caring individuals. There is an immediate connection with a sense of reciprocal understanding that can only arise from shared circumstance and firsthand experiences. We come from a range of different backgrounds, but that doesn't seem to prevent the building of bonds. There is no reason to ever feel alone; spare those late night encounters with an irrational loneliness, that is.
We are coping exactly as would be expected given the circumstances. (That is my standard response these days). Our exhaustion remains. There are days that perpetual fatigue can weigh heavily on our moods, but James and I rarely remain low for any length of time. We seem to balance each other out, and lift each other up during moments of need. There has always been a lot more laughter than tears between us. That being said, I think that teary nights allow for the intimacy of shared emotions. The hard moments serve as a reminder of our love and gratitude for an ever-present shoulder to cry on. Those difficult nights reinforce our promise to always be there for each other. We get each other through it all. We will continue to get each other through it all.
Monday, December 10, 2012
Chanukah
It would be impossible to not love that smile.
James has been out of the hospital for two weeks and is feeling stronger and stronger each and every day. We seemed to have found a resolution for James' gastrointestinal issues, and James has been able to return to eating as a full-time job. His white cell counts are back within an acceptable range for immunosuppression, but James is still mostly housebound (aside from appointments at the hospital and physiotherapy at the Transplant Gym) to reduce the risk of infection. We are really looking forward to Christmas at my father's house. We need to take as many precautions as possible to remain healthy for the holidays.
We celebrated the first night of Chanukah over this past weekend (and will have another Chanukah party on Saturday). We have plenty of leftovers, and the house still smells of latkas from the weekend (and other fried deliciousness from the holiday). We played driedel for candies with my siblings, and sang traditional Chanukah songs. We have been lighting the candles each night before dinner. My Bubie has been close at mind and in our hearts. She would have been the first to sing and dance, and of course, to burn the latkas.
love love love
Tuesday, December 4, 2012
holidays away from home
We are getting ready for the holidays with the mixed emotions of love for the holiday season, and a longing to be back home with James' family, (and of course, curled up with feline friends in front of our fireplace). James insists that all he needs for the holidays is to be with me, but I also sense a sadness for the separation from his family. We are looking forward to receiving some of his childhood ornaments in the mail to bring some of his tradition to our temporary home.
We will travel to my father's house for Christmas. He lives in a rural area close to Port Perry, Ontario, with several pets that will occupy James' every moment of attention during the holiday. We will still be surrounded by family, and the love and warmth that the holidays are meant to represent.
We will also celebrate Chanukah with my family in Toronto. The party will come to us, because my mother's house has several flights of stairs that would be completely inaccessible for James. We have many special and meaningful traditions. These have become more and more important over the years. The holidays come with comfort of memories. As with the last few holidays, I will feel the absence of my Bubie. She has been gone for almost 10 months, but in many ways, it could have been only a few weeks. There is not a single day that she doesn't cross my mind, and I feel that loss even stronger as the holidays approach without her around the table.
We have also been getting the apartment ready for the holidays, and bringing some of that festive cheer into our small space.
We bought a special ornament to represent the year of our marriage:
and another for the blending of traditions:
Our dear friends and family have also sent loving cards in the mail, along with a beautiful angel, and some delicate homemade snowflakes to bring the holiday spirit to our little home in Toronto:
Tuesday, November 27, 2012
home with an update
James was discharged from the hospital on Monday evening. He was absolutely ready to be back in his own bed and the little space we have made into our home. We were very concerned about his blood oxygen saturation levels, but James' lung function appears to be recovering from the aspiration episode. We thought that James had become oxygen-dependent, but his blood oxygen levels have been slowly increasing to within a healthier range, and above the level that would indicate the need for supplementary oxygen support. James' shortness of breath continues to be severe in terms of the need for longer recovery periods and an ever-growing definition of exertion. These experiences are compounded by the fear and anxiety that are associated with the sensations of breathlessness. We are hopeful for that his shortness of breath and breathing difficulties will also continue to improve from the aspiration alongside his healing lungs.
James' determination to work through the discomfort and pain of dyspnea continues to be remarkable. He is increasing in both strength and endurance at the Transplant Gym. He is now able to engage in cardiovascular activities for ten minutes without the need for a break and can complete twenty minutes on both the treadmill and stationary bicycle. He has also been able to increase his arm weights by a couple of pounds. These are more than noteworthy improvements. A few weeks ago, James was limited to only two to three minutes of cardiovascular activities between breaks and twenty minutes on either of the machines (rather than twenty minutes on both). James had even been exercising with the absence of weights for a few weeks. These improvements have been irrespective of James' frequent hospitalizations and recent aspiration episode.
As for myself, I am coping within the realm of expectations for the given circumstances. There is a lot of grief and sadness to process. I give myself permission to experience the full extent of these emotions, but I also make a conscious effort to focus on positive experiences and moments of gratitude. My love for James does not ever seem to wane, but rather, I feel an ever-growing depth and intensity of love for him. James is a source of continuous strength and hope for the future. I would love to emulate his constant state of optimism. That is not to suggest that James does not also have moments of grief and sadness, but James always seems to have a positive resolve. He knows the importance of attitude for survival. There is not another option for James. James will have another double-lung transplant. Our dreams will become possible again. That is the only focus for the moment, and for the future. We will get through this. We have no choice.
James' determination to work through the discomfort and pain of dyspnea continues to be remarkable. He is increasing in both strength and endurance at the Transplant Gym. He is now able to engage in cardiovascular activities for ten minutes without the need for a break and can complete twenty minutes on both the treadmill and stationary bicycle. He has also been able to increase his arm weights by a couple of pounds. These are more than noteworthy improvements. A few weeks ago, James was limited to only two to three minutes of cardiovascular activities between breaks and twenty minutes on either of the machines (rather than twenty minutes on both). James had even been exercising with the absence of weights for a few weeks. These improvements have been irrespective of James' frequent hospitalizations and recent aspiration episode.
As for myself, I am coping within the realm of expectations for the given circumstances. There is a lot of grief and sadness to process. I give myself permission to experience the full extent of these emotions, but I also make a conscious effort to focus on positive experiences and moments of gratitude. My love for James does not ever seem to wane, but rather, I feel an ever-growing depth and intensity of love for him. James is a source of continuous strength and hope for the future. I would love to emulate his constant state of optimism. That is not to suggest that James does not also have moments of grief and sadness, but James always seems to have a positive resolve. He knows the importance of attitude for survival. There is not another option for James. James will have another double-lung transplant. Our dreams will become possible again. That is the only focus for the moment, and for the future. We will get through this. We have no choice.
Friday, November 16, 2012
update of sorts
It has been a while since I have written a more serious update, but first, I want to acknowledge the incredible and overwhelming generosity of our loved ones, dear online friends, and perfect strangers. "Toonies for Transplant" was a wonderful success. We will forever be grateful for your contributions to our lung fund during this difficult time. We can truly take a deep breath. Our fundraising goal has been met! (The fundraising page has been re-formatted. Our media has been lost. We are hoping to get it back in a few days).
James appears to be stable at 12% lung function, but it is difficult to ascertain a level of stability that also allows for the unpredictable nature of the disease. We recognize that everything can change in a single moment. We are always alert to the possibility of decline. It is a relative stability that doesn't allow for complete rest and relaxation. We remain aware, in both fear and gratitude, making the most out of each and every moment (all within the limitations of the disease). Laughter has never been more important.
James is doing exceptionally well at the Transplant Gym. He is building strength and endurance. James accepts the limitations on his independence. He is learning to slow down and listen to his body (with its ever-changing capabilities). He is able to exercise for five to seven minutes before a sense of complete breathlessness forces him to rest. This no longer incites a form of panic or anxiety within him. James has come to expect these moments, and focuses on breathing through them. He accepts a lower level of intensity for exercise and allows for these breaks to rest. I am so proud of his determination. This is a recurrent theme in my posts: James as the epitome of strength and courage. I feel an incredible gratitude for being part of his life.
I return to another recurrent theme in my posts: That is, a level of physical and emotional exhaustion that is beyond description, and the limitations of language for the expression of these experiences. There is a heaviness that seems to have long settled into my body. It has become a constant weight that slows my thoughts and movements to an impossible pace. I am made still by the force of this exhaustion. The adrenaline of on-going crisis is a temporary illusion. I find it difficult to regenerate energy.
It takes a conscious effort to face the fatigue with self-care. I seek the comfort and nourishment of foods. I exercise to escape my mind and build my own strength. I sleep, and I sleep, and I sleep. I also build energy through attitude. It involves a letting go, or rather, an acceptance for everything that is beyond my control. I must embrace the moment for survival and in mindful appreciation.
My love for James is my best defense against exhaustion and fatigue. It is our best defense. We are both very sensitive to one another. We have the ability to lift spirits (and of course, the alternative, bring each other down). The later is rare. We both feel positive for the most part. We have each other, don't we? That alone makes every single moment worth it.
James appears to be stable at 12% lung function, but it is difficult to ascertain a level of stability that also allows for the unpredictable nature of the disease. We recognize that everything can change in a single moment. We are always alert to the possibility of decline. It is a relative stability that doesn't allow for complete rest and relaxation. We remain aware, in both fear and gratitude, making the most out of each and every moment (all within the limitations of the disease). Laughter has never been more important.
James is doing exceptionally well at the Transplant Gym. He is building strength and endurance. James accepts the limitations on his independence. He is learning to slow down and listen to his body (with its ever-changing capabilities). He is able to exercise for five to seven minutes before a sense of complete breathlessness forces him to rest. This no longer incites a form of panic or anxiety within him. James has come to expect these moments, and focuses on breathing through them. He accepts a lower level of intensity for exercise and allows for these breaks to rest. I am so proud of his determination. This is a recurrent theme in my posts: James as the epitome of strength and courage. I feel an incredible gratitude for being part of his life.
I return to another recurrent theme in my posts: That is, a level of physical and emotional exhaustion that is beyond description, and the limitations of language for the expression of these experiences. There is a heaviness that seems to have long settled into my body. It has become a constant weight that slows my thoughts and movements to an impossible pace. I am made still by the force of this exhaustion. The adrenaline of on-going crisis is a temporary illusion. I find it difficult to regenerate energy.
It takes a conscious effort to face the fatigue with self-care. I seek the comfort and nourishment of foods. I exercise to escape my mind and build my own strength. I sleep, and I sleep, and I sleep. I also build energy through attitude. It involves a letting go, or rather, an acceptance for everything that is beyond my control. I must embrace the moment for survival and in mindful appreciation.
My love for James is my best defense against exhaustion and fatigue. It is our best defense. We are both very sensitive to one another. We have the ability to lift spirits (and of course, the alternative, bring each other down). The later is rare. We both feel positive for the most part. We have each other, don't we? That alone makes every single moment worth it.
Sunday, November 11, 2012
a year and a half lungiversary
Our lives are always beyond prediction.
On November 9, 2009, James moved from Victoria, British Columbia, to Toronto, Ontario in hopes of qualifying for a live-saving double-lung transplant. He was oxygen-dependent and struggling to maintain his weight about 90lbs.
James and I met in Toronto in June 2010. We formed an immediate and deep connection. It took James 10-months to qualify for transplant. He waited another 9 months on the transplant list. On May 12, 2011, James proposed before heading into the surgery that would save his life, and allow our dreams to become a possibility. In James' words, "I came for lungs, and I found love."
Tomorrow, it will be James' 18-month post-transplant "lungiversary." It would have been impossible to imagine that James would be on this journey again within a few short years, but James and I do not regret a single day together.
We will celebrate and honor the memory of James' donor, and that very generous and courageous decision save the lives of others during a time of incredible grief and sadness. We are so grateful for the gift of another year and a half together. We wrote a letter to James' donor family with overwhelming gratitude for an incredible year of health and happiness. As always, there were not enough words to express our gratitude.
James' life was not only extended. He was given a quality of life that was reminiscent of childhood. We went biking, swimming, hiking, and camping. We filled our lives with laughter. (We still insist on dancing and singing on a regular basis). Our wedding was a magical evening in a celebration of life. There may be fear and sadness to be waiting for another life-saving transplant, but that does not negate the happiness and joy of best year and a half of our lives.
On November 9, 2009, James moved from Victoria, British Columbia, to Toronto, Ontario in hopes of qualifying for a live-saving double-lung transplant. He was oxygen-dependent and struggling to maintain his weight about 90lbs.
Tomorrow, it will be James' 18-month post-transplant "lungiversary." It would have been impossible to imagine that James would be on this journey again within a few short years, but James and I do not regret a single day together.
We will celebrate and honor the memory of James' donor, and that very generous and courageous decision save the lives of others during a time of incredible grief and sadness. We are so grateful for the gift of another year and a half together. We wrote a letter to James' donor family with overwhelming gratitude for an incredible year of health and happiness. As always, there were not enough words to express our gratitude.
James' life was not only extended. He was given a quality of life that was reminiscent of childhood. We went biking, swimming, hiking, and camping. We filled our lives with laughter. (We still insist on dancing and singing on a regular basis). Our wedding was a magical evening in a celebration of life. There may be fear and sadness to be waiting for another life-saving transplant, but that does not negate the happiness and joy of best year and a half of our lives.
Monday, October 15, 2012
assessment day one
We had an early start to day with the beginning of James' pre-transplant assessment. The first test was early in the morning at the Cardiac Radiology Lab. I could barely manage to stay awake in the waiting room. I closed my eyes to music for the first hour, and paced the halls for the remaining forty-five minutes. James emerged from the test with the same feeling of exhaustion and restlessness, but there was also a sense of relief to be moving forward with the pre-transplant process. We are closer and closer to our goal of being officially listed for transplant. We went directly to the lab for James' blood tests and ECG. We were amazed at the collection of fifteen vials. James was drained (literally), and ready for breakfast and medications. This, of course, is a positive sign towards to the direction of being discharged from the hospital.
I left him with the necessities (that is, a warm cup of tea with loads of cream and sugar, and access to the internet) and ventured across the street to collapse at home for a few hours. I'm learning to give myself permission to leave James at the hospital for the purpose of self-care. Sleep doesn't come easily with James in the hospital, and I need to listen to my body. I will not be a able to take care of James without also taking care of myself. I need an official prescription for rest and afternoon naps.
James will have more tests in the afternoon. The Pulmonary Lung Function Lab will do a series of lung function tests. We will both be interested in the results. It is very difficult to make sense of James' decrease in lung function without a simultaneous decrease in blood oxygen saturation. James' lung function is lower than pre-transplant, and James feels a strong sense of breathlessness with even slight exertion, but he still does not require oxygen. This is positive, but also perplexing, to some extent. These tests will be followed immediately by an appointment for a Bone Mineral Density Scan. At that point, I am certain James will be almost walking in his sleep.
It is a long day of being poked and prodded. It doesn't help to have to return to a hospital room rather than his own bed at home (with Ophelia curled up with us). These are exactly the days that require the warmth and comfort of loved ones. We will have to re-define intimacy to include shared hospital beds (without the tangling of cords, isolation precautions, and background of beeping machines).
James is fortunate to have been moved to a private room. We can close the door, curl up on his bed, and bring each other to laughter and tears without the fear of being disruptive to others. James has been known to belt out Meatloaf lyrics in the hospital (without the knowledge of a team of doctors outside his door). In the weeks post-transplant, I believe this impromptu karaoke was both an attempt at courtship towards myself, and a declaration of being ready for discharge. These are the moments that demonstrate James' strength (despite the difficulties ahead). There are always moments of pure delight at being alive. He is the epitome of living life to its fullest.
(On a side note, I am reminded of my Bubie. She has only been gone 8 months. She loved life to the very end. She found joy in all possible forms. We painted her toenails in the hospital, drew pictures together on paper plates, and shared afternoon tea. There was almost always laughter in the room).
James has a deep level of acceptance for our circumstances. We will go through another long day of testing tomorrow, and again on Wednesday, and I know that James will still be smiling at the end of the day, and well into his dreams. He has taught me to do the same (or at least, I try my best). I hope that spirit never fades.
I left him with the necessities (that is, a warm cup of tea with loads of cream and sugar, and access to the internet) and ventured across the street to collapse at home for a few hours. I'm learning to give myself permission to leave James at the hospital for the purpose of self-care. Sleep doesn't come easily with James in the hospital, and I need to listen to my body. I will not be a able to take care of James without also taking care of myself. I need an official prescription for rest and afternoon naps.
James will have more tests in the afternoon. The Pulmonary Lung Function Lab will do a series of lung function tests. We will both be interested in the results. It is very difficult to make sense of James' decrease in lung function without a simultaneous decrease in blood oxygen saturation. James' lung function is lower than pre-transplant, and James feels a strong sense of breathlessness with even slight exertion, but he still does not require oxygen. This is positive, but also perplexing, to some extent. These tests will be followed immediately by an appointment for a Bone Mineral Density Scan. At that point, I am certain James will be almost walking in his sleep.
It is a long day of being poked and prodded. It doesn't help to have to return to a hospital room rather than his own bed at home (with Ophelia curled up with us). These are exactly the days that require the warmth and comfort of loved ones. We will have to re-define intimacy to include shared hospital beds (without the tangling of cords, isolation precautions, and background of beeping machines).
James is fortunate to have been moved to a private room. We can close the door, curl up on his bed, and bring each other to laughter and tears without the fear of being disruptive to others. James has been known to belt out Meatloaf lyrics in the hospital (without the knowledge of a team of doctors outside his door). In the weeks post-transplant, I believe this impromptu karaoke was both an attempt at courtship towards myself, and a declaration of being ready for discharge. These are the moments that demonstrate James' strength (despite the difficulties ahead). There are always moments of pure delight at being alive. He is the epitome of living life to its fullest.
(On a side note, I am reminded of my Bubie. She has only been gone 8 months. She loved life to the very end. She found joy in all possible forms. We painted her toenails in the hospital, drew pictures together on paper plates, and shared afternoon tea. There was almost always laughter in the room).
James has a deep level of acceptance for our circumstances. We will go through another long day of testing tomorrow, and again on Wednesday, and I know that James will still be smiling at the end of the day, and well into his dreams. He has taught me to do the same (or at least, I try my best). I hope that spirit never fades.
I'll be heading back to the hospital soon to share a dinner with my love. Here we are on Skype in the late afternoon:
Friday, September 28, 2012
surprise from home!
James' good friend arrived on Wednesday in the middle of the night from British Columbia to surprise him. James was (and is) absolutely thrilled to have a friend from home. Our spirits are lifted. We definitely needed a good distraction.
We will head to Toronto Islands in the afternoon. I will update again tonight, or tomorrow morning.
We are sending out love, love, and more love.
Update: We had a great day (and that would be an understatement). It is lovely to take a break from hospitals and focus solely on having fun. We were filled with laughter and energy. We will sleep well tonight, but it is the good kind of exhaustion.
Here are some wonderful photographs from the day by our friend, Kendell, yogi and photographer (http://meandher.smugmug.com/):
James and I are very grateful to have an increasing collection of photographs together, but I should admit that I have always been hesitant about being the subject of a photograph, and I prefer to hide behind the camera. That being said, I love to be able to document our time together into a permanent collection of shared moments. We also have another friend back in Victoria with an incredible talent for photography. She generously made herself available last minute to take a beautiful series of photographs before James and I had to move back to Toronto. We love all these photographs. We love our friends.
We will head to Toronto Islands in the afternoon. I will update again tonight, or tomorrow morning.
We are sending out love, love, and more love.
Update: We had a great day (and that would be an understatement). It is lovely to take a break from hospitals and focus solely on having fun. We were filled with laughter and energy. We will sleep well tonight, but it is the good kind of exhaustion.
Here are some wonderful photographs from the day by our friend, Kendell, yogi and photographer (http://meandher.smugmug.com/):
James and I are very grateful to have an increasing collection of photographs together, but I should admit that I have always been hesitant about being the subject of a photograph, and I prefer to hide behind the camera. That being said, I love to be able to document our time together into a permanent collection of shared moments. We also have another friend back in Victoria with an incredible talent for photography. She generously made herself available last minute to take a beautiful series of photographs before James and I had to move back to Toronto. We love all these photographs. We love our friends.
Sunday, September 23, 2012
end of weekend update
James and I seem to be settling in to Toronto, and re-establishing a relative sense of normalcy, or in the least, adjusting to the reality of our situation. There will continue to be a lot of uncertainties in the coming weeks, but James and I refuse to live as though our lives are on hold. We are starting to plan for a foreseeable future in Toronto (with some degree of enthusiasm for everything that the city has to offer a couple of dreamers).
It has been a difficult transition. There is a process of letting go, or rather, a re-framing of our dreams for the future. We need to allow ourselves to envision a different future (without holding onto grief). We have not lost our dreams. This is simply another path to them. We still have the shared happiness and joy that defines our relationship. We find hope and optimism in each other. I have said it before, and I truly believe that James and I grow together in strength through the adversities of life. We are not strangers to the pain. It only serves as a reminder of the importance of gratitude. We take full advantage of our time together from one moment to the next. We look to each other and smile. There are still reasons to celebrate.
This weekend, James and I enjoyed some relaxation and fully met our cuddle quota for both canine and feline friends with four dogs and three cats at my father's house:
We also went to Word on the Street. This book and magazine festival was also the location of our third date together. We visited The Grid booth and started a discussion about Dating Diaries and a possible re-print of Jon and Amy, a well-received story about our first date (with pseudonyms). We hope that in consideration of the positive reception, James and I might be able to raise some awareness about the importance of organ donation (and low donor registry rates in Toronto at only 13%). Of course, there is also hope that publicity could also help in our personal campaign to finance our re-location to Toronto for transplant. We spoke with a writer at the booth. Our story was immediately recognized, and a nearby couple even requested a photo of us. We were encouraged to re-contact Dating Diaries about these inquiries.
We continued to walk around with silly paper crowns, browsed through books, magazines and comics, and enjoyed an ever so inspiring talk and interview with David Suzuki and Jeff Rubin:
James
has an
appointment with the Toronto General Hospital transplant clinic in about
a
week. We hope to gain a better sense of his prognosis, and the course
of treatment available, including assessment and evaluation for a
second double lung transplant. James' lung function appears to be stable
(with some normal variation in both directions), but I am weary of the
weight loss (and a history of gastrointestinal problems that have been
associated with James' weight status). I am learning to become an active
and assertive advocate, but I also have a tendency towards feeling
overwhelmed and helpless. It is a fine balance.
It has been a difficult transition. There is a process of letting go, or rather, a re-framing of our dreams for the future. We need to allow ourselves to envision a different future (without holding onto grief). We have not lost our dreams. This is simply another path to them. We still have the shared happiness and joy that defines our relationship. We find hope and optimism in each other. I have said it before, and I truly believe that James and I grow together in strength through the adversities of life. We are not strangers to the pain. It only serves as a reminder of the importance of gratitude. We take full advantage of our time together from one moment to the next. We look to each other and smile. There are still reasons to celebrate.
This weekend, James and I enjoyed some relaxation and fully met our cuddle quota for both canine and feline friends with four dogs and three cats at my father's house:
We also went to Word on the Street. This book and magazine festival was also the location of our third date together. We visited The Grid booth and started a discussion about Dating Diaries and a possible re-print of Jon and Amy, a well-received story about our first date (with pseudonyms). We hope that in consideration of the positive reception, James and I might be able to raise some awareness about the importance of organ donation (and low donor registry rates in Toronto at only 13%). Of course, there is also hope that publicity could also help in our personal campaign to finance our re-location to Toronto for transplant. We spoke with a writer at the booth. Our story was immediately recognized, and a nearby couple even requested a photo of us. We were encouraged to re-contact Dating Diaries about these inquiries.We continued to walk around with silly paper crowns, browsed through books, magazines and comics, and enjoyed an ever so inspiring talk and interview with David Suzuki and Jeff Rubin:
That is all for now. We are sending out love, love, and more love.
Friday, September 21, 2012
a day in kensington
We enjoyed a day in the market with a focus on the joys of being alive. We don't need to find reasons to sing and dance each and every day. We know that importance of laughter and fun. Here are a collection of photographs from the day (with a requisite photo of a furry friend, because James' days are never complete without befriending a squirrel or two):
love. love. love.
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