Dear Organ Donor and Organ Donor Family,
There are not enough words to articulate our gratitude. How can I thank you for saving my husband's life? We will always be grateful for your generous and courageous decision during a time of incredible grief. We think about you each and every single day. You will forever be close to our hearts. We honor your memory in our every day life. We do not take a moment for granted. We live life to its fullest.
We first wrote to you last year in February 2012. It was my husband's 28th birthday. It was a celebration of life. We would not have been able to celebrate without you. There was no other gift in the world better than to be able to celebrate another year together. We lit a candle for you, and your loved ones. We made a promise to honor you forever and always.
My husband will be celebrating his 29th birthday in the coming weeks. We have not lost track of the preciousness of your gift, and your brave decision that allowed our future and dreams to become a reality.
We are not allowed to share personal information with you, but I want to share the meaning behind your gift. My husband was diagnosed with a fatal lung disease at birth. There was no cure. Every single breath was a struggle. My husband was oxygen dependent for the two years before his transplant, and a double lung transplant was necessary for him to survive.
In the last year, I was able to marry the love of my life. It was a magical evening that was made possible by you. My husband was active for the first time in nearly a decade. We went bicycling, swimming, hiking, and even psuedo-camping on the family farm. We set up home together and made memories with friends and family. Our lives are filled with love and laughter.
We are eternally grateful. We have not forgotten about you. Thank you for your gift. Thank you for the best year of our lives. We feel a deep love for you. We feel a special connection with you.
May there be comfort and solace in the knowledge that you have saved my husband's life, and given him a quality of life not known to him.
We love you.
Thank you.
Wife of Double Lung Recipient
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, February 2, 2013
waiting for transplant
We have been in Toronto for five months now. James has been on the transplant list for three months. He has been in the hospital since December 25th (with a single day at home on December 28th in between admissions). This is his 6th or 7th hospital admission since arriving in Toronto. We are exhausted and drained of all energy and resources.
I want to write about the process of waiting for a double-lung transplant, but I don't know that I will be able to describe the experience.
We attempt to live our lives one day at a time, and focus on living in the moment. The speed of the surrounding world becomes incomprehensible. It is impossible to describe that feeling of watching the world move around you. Our lives are on hold. We are slowed to the pace of a single moment. We live in each and every breath, and for each and every breath. Everything may feel static, but nothing is static. It can all change without a warning sign. We persevere with hope, because there is no other choice. Transplant is the only alternative. We don't allow our mind to consider the other possibilities.
There is isolation. Our world becomes smaller and smaller. We build incredible friendships within the transplant communities. This eases some of the loneliness, but it comes with its own pain. We watch dear friends struggle for breath. We pray for everyone with the knowledge that not everyone will make it.
There is fear. The future is complete with uncertainties. It is impossible to make predictions. Each and every day can bring something different. We know the progression of the disease, but it is hard to prepare for deterioration. We lie to ourselves to counter the fear. This is for survival. It is all about attitude.
There is a longing for something different. We struggle to imagine something different. We miss our lives. We miss ourselves. We miss each other. We are brought to tears by the smallest of memories; walking side by side and hand in hand, fall asleep back to back, and so forth.
One of the hardest part of the wait is the waiting itself. It could be days, weeks, or months. We all tell ourselves that our call will come soon. We are all aware that it could be a lot longer. We have to believe that our call will come in time. We have to believe that it will be the right set of lungs. We have to believe that it will be worth all this pain and sadness.
We find a hope and faith that we don't know had existence. We persevere through the hard days (and harder days). We wait, and wait, and wait.
p.s. I promise more photographs soon.
love.
love.
love.
I want to write about the process of waiting for a double-lung transplant, but I don't know that I will be able to describe the experience.
We attempt to live our lives one day at a time, and focus on living in the moment. The speed of the surrounding world becomes incomprehensible. It is impossible to describe that feeling of watching the world move around you. Our lives are on hold. We are slowed to the pace of a single moment. We live in each and every breath, and for each and every breath. Everything may feel static, but nothing is static. It can all change without a warning sign. We persevere with hope, because there is no other choice. Transplant is the only alternative. We don't allow our mind to consider the other possibilities.
There is isolation. Our world becomes smaller and smaller. We build incredible friendships within the transplant communities. This eases some of the loneliness, but it comes with its own pain. We watch dear friends struggle for breath. We pray for everyone with the knowledge that not everyone will make it.
There is fear. The future is complete with uncertainties. It is impossible to make predictions. Each and every day can bring something different. We know the progression of the disease, but it is hard to prepare for deterioration. We lie to ourselves to counter the fear. This is for survival. It is all about attitude.
There is a longing for something different. We struggle to imagine something different. We miss our lives. We miss ourselves. We miss each other. We are brought to tears by the smallest of memories; walking side by side and hand in hand, fall asleep back to back, and so forth.
One of the hardest part of the wait is the waiting itself. It could be days, weeks, or months. We all tell ourselves that our call will come soon. We are all aware that it could be a lot longer. We have to believe that our call will come in time. We have to believe that it will be the right set of lungs. We have to believe that it will be worth all this pain and sadness.
We find a hope and faith that we don't know had existence. We persevere through the hard days (and harder days). We wait, and wait, and wait.
p.s. I promise more photographs soon.
love.
love.
love.
Thursday, January 31, 2013
and the nausea continues
We are on day five of nausea and vomiting. I wish there was more to write about, (or at least, more positives). There is some discouragement and disappointment, but James and I both know that it will pass, despite all the discomforts and misery. Every day is still another accomplishment; a day closer to transplant. We have to stay focused on that goal. We will get there. We have to get there.
These nausea and vomiting episodes slow the pace of time in the hospital. Respite comes in the form of sleep. James sleeps on and off throughout the day, between discarded basins, and cold washcloths. I sit and knit, and listen to James' laboured breath, and watch for the rise and fall of his chest. There is a peacefulness to these moments.
I love to hold James' hands in my own, and comfort him with back rubs. I wish there was more that I could do to ease his pain and discomfort. I know that my presence brings him a sense of security, but that doesn't seem to be enough. I remind him often that he is surrounded by love. We are grateful for all the prayers. We will get through this. We have to get through this.
These nausea and vomiting episodes slow the pace of time in the hospital. Respite comes in the form of sleep. James sleeps on and off throughout the day, between discarded basins, and cold washcloths. I sit and knit, and listen to James' laboured breath, and watch for the rise and fall of his chest. There is a peacefulness to these moments.
I love to hold James' hands in my own, and comfort him with back rubs. I wish there was more that I could do to ease his pain and discomfort. I know that my presence brings him a sense of security, but that doesn't seem to be enough. I remind him often that he is surrounded by love. We are grateful for all the prayers. We will get through this. We have to get through this.
Monday, January 28, 2013
long days in hospital
It was a rough day, but I still feel as though James is genuinely doing a lot better, or in the least, making improvements almost every day. The nausea and vomiting comes in waves. We truly have no choice but to function one day at a time, or rather from one hour to the next. A very positive morning can be followed by a miserable afternoon, and nauseous morning can be followed by a lovely afternoon.
Today, James woke with another nausea and vomiting episode, and with hopes that it would subside by the afternoon. Unfortunately, a second wave arrived in time for physiotherapy, and James spent the rest of the afternoon curled up in a ball and hugging a basin (with his wife by his side to rub his back and cuddle him).
A lot of the frustrations comes with the uncertainties, and of course, a lack of known cause for these episodes. It seems to correlate with James' low lung function, and often follows several days of (relatively) good eating. It is possible that his body simply cannot handle digestion at this point. It requires more energy than is available, because the majority of James' energy requirements go towards breathing. He has no appetite and no interest in food or eating. He motivates himself to eat out of necessity, but the difficulties remain.
We ended the day on a positive note with an escape from his bedroom to the hospital lobby. We played a game of Settlers of Catan, shared a few laughs, and were able to create our own space together (in separation from the disease). I can't even begin to express the value of these moments. Our time is more previous than ever before (and that includes all the difficult moments too).
Today, James woke with another nausea and vomiting episode, and with hopes that it would subside by the afternoon. Unfortunately, a second wave arrived in time for physiotherapy, and James spent the rest of the afternoon curled up in a ball and hugging a basin (with his wife by his side to rub his back and cuddle him).
A lot of the frustrations comes with the uncertainties, and of course, a lack of known cause for these episodes. It seems to correlate with James' low lung function, and often follows several days of (relatively) good eating. It is possible that his body simply cannot handle digestion at this point. It requires more energy than is available, because the majority of James' energy requirements go towards breathing. He has no appetite and no interest in food or eating. He motivates himself to eat out of necessity, but the difficulties remain.
We ended the day on a positive note with an escape from his bedroom to the hospital lobby. We played a game of Settlers of Catan, shared a few laughs, and were able to create our own space together (in separation from the disease). I can't even begin to express the value of these moments. Our time is more previous than ever before (and that includes all the difficult moments too).
Sunday, January 27, 2013
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.
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.
Thursday, January 24, 2013
escape from reality
We have been thoroughly enjoying our daily escapes from the hospital. The rather unpleasant accommodations of a hospital ward room are reason enough to desire a change in scenery. It is lovely to be able to share in our own private space. We still have our morning routine. I arrive at the hospital with a thermos of tea, or rather, some tea to go with James' sugar and cream. James wakes up slowly to take his medications and prepare for the day ahead. He has physiotherapy in the afternoon three times a week, but otherwise, James and I brace ourselves for the cold, and head across the street to our little apartment. (We still go home for a few hours on physiotherapy days, but without the leisure of an entire day to ourselves).
Ophelia prances around the apartment, and James and I collapse into bed to sleep the day away. I've become entirely unproductive around the house. My chores take several days to even reach a point of consideration, but it is completely worth a long afternoon sleep with my husband. Nights are long in his absence. We both have been missing the company of a warm body at night (for snuggling purposes, of course). These afternoon naps have become a dream to look forward to on sleepless nights.
We both find our spirits are lifted by these hours home together. There is no ambition to do anything more than simply be together. The hardest part of the day is returning to the hospital, and once again, leaving James for the night.
James is slowly re-gaining weight with a little more solids each day to eat. He is also rebuilding his strength. He is able to walk further distances, and be active and awake for longer periods of time. These are incredible feats for a man with twelve percent lung function. There are limitations to his energy, because of weakness and faitgue, but there is always motivation to keep pushing through the breathlessness. It amazes me. I know, I know, I am always gushing with pride. It is hard not to be proud.
It has been a few weeks since I have written about gratitude. With that, I am grateful (in no particular order, and certainly, a non-exclusive list):
I am grateful for access to universal health care.
I am grateful for access to and availability of healthy food and clean water.
I am grateful for a warm and safe shelter.
I am grateful for the small comforts of home.
I am grateful for Ophelia (my feline companion).
I am grateful for the ability to experience and feel happiness.
I am grateful for the ability to experience and feel love.
I am grateful for strength and motivation (both my own, and James' enduring fight to survive).
I am grateful for friendships (and the embrace and support of the transplant and Cystic Fibrosis communities).
I am grateful for James' organ donor and organ donor family. (James is 20 months post-transplant. We cherish each and every day that is possible because of this courageous and generous act of organ donation).
I am grateful for James.
I am grateful for gratitude.
Ophelia prances around the apartment, and James and I collapse into bed to sleep the day away. I've become entirely unproductive around the house. My chores take several days to even reach a point of consideration, but it is completely worth a long afternoon sleep with my husband. Nights are long in his absence. We both have been missing the company of a warm body at night (for snuggling purposes, of course). These afternoon naps have become a dream to look forward to on sleepless nights.
We both find our spirits are lifted by these hours home together. There is no ambition to do anything more than simply be together. The hardest part of the day is returning to the hospital, and once again, leaving James for the night.
James is slowly re-gaining weight with a little more solids each day to eat. He is also rebuilding his strength. He is able to walk further distances, and be active and awake for longer periods of time. These are incredible feats for a man with twelve percent lung function. There are limitations to his energy, because of weakness and faitgue, but there is always motivation to keep pushing through the breathlessness. It amazes me. I know, I know, I am always gushing with pride. It is hard not to be proud.
It has been a few weeks since I have written about gratitude. With that, I am grateful (in no particular order, and certainly, a non-exclusive list):
I am grateful for access to universal health care.
I am grateful for access to and availability of healthy food and clean water.
I am grateful for a warm and safe shelter.
I am grateful for the small comforts of home.
I am grateful for Ophelia (my feline companion).
I am grateful for the ability to experience and feel happiness.
I am grateful for the ability to experience and feel love.
I am grateful for strength and motivation (both my own, and James' enduring fight to survive).
I am grateful for friendships (and the embrace and support of the transplant and Cystic Fibrosis communities).
I am grateful for James' organ donor and organ donor family. (James is 20 months post-transplant. We cherish each and every day that is possible because of this courageous and generous act of organ donation).
I am grateful for James.
I am grateful for gratitude.
Wednesday, January 23, 2013
photos before bed
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| (a misleading headline. we need lungs!) |
Monday, January 21, 2013
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.
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.
Sunday, January 20, 2013
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):
Wednesday, January 16, 2013
making it through
James is, in his words, miserable. This extended hospital stay is wearing him down. He is longing is for the comforts and privacies of being at home. The feelings of fatigue and weakness, along with limited mobility, translate further into a sense of confinement. His sadness and discouragement are completely valid. It has been nearly three weeks in the hospital. It would be hard for anyone to hold onto hope (and hope is hard to come by in the hospital). We are trying to stay positive, and I do everything that I can to lift his spirits. It is difficult to feel as though we are moving forward, or least, in the direction of discharge, without a discharge plan, and with all these building uncertainties. The hospital is one long perpetual wait.
We also have to come to terms with the progressive realities of lung disease. Each and very change to James' independence requires a shift in thinking, or rather a re-framing of the circumstances. We have to rediscover and redefine a sense of normalcy. We have to learn to accept the difficult changes and make a continuous and conscious effort to recognize the small reasons for gratitude. The later can be a challenge, but is essential for getting through the hard days.
James has every right to be feeling down. I'm proud of him for every effort he makes to push himself to feel better, and to make the most out of, well, miserable circumstances. He truly is focusing on everything that is within our control. He is sitting up more often, and even walking around the unit with a walker and oxygen. He always tries to greet me with a smile. We know that these are temporary conditions. It will get better. It has to.
We also have to come to terms with the progressive realities of lung disease. Each and very change to James' independence requires a shift in thinking, or rather a re-framing of the circumstances. We have to rediscover and redefine a sense of normalcy. We have to learn to accept the difficult changes and make a continuous and conscious effort to recognize the small reasons for gratitude. The later can be a challenge, but is essential for getting through the hard days.
James has every right to be feeling down. I'm proud of him for every effort he makes to push himself to feel better, and to make the most out of, well, miserable circumstances. He truly is focusing on everything that is within our control. He is sitting up more often, and even walking around the unit with a walker and oxygen. He always tries to greet me with a smile. We know that these are temporary conditions. It will get better. It has to.
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