back home for a year!

Last night, James and I were awake in the wee hours marveling at the passage of time. We moved back home after James' re-transplant on September 18, 2013. It has been an exceptional year (to say the very least). We reflect back on the ebbs and flows, and the delicate balancing act that has become our lives, with complete and utter amazement. There are days that our lives still feel exceptionally surreal. It is strange to consider the leaps and bounds of change (and growth). 

We have always done our very best to project optimism and hope, but at the same time, James and I were always very honest with ourselves and with each other. We prepared ourselves for James' death on many different levels during James' re-transplant journey. We filed the appropriate paperwork. We had in-depth conversations about end-of-life decision-making in response to each indication of disease progression and further deterioration of James' health. We shared desperate words of love and sentiment with deep-seated fears (and unbearable grief) that each critical moment could be the final departure. We even called the funeral home to inquire about transportation arrangements after reaching the limits of medical intervention, and awaiting miraculous change, following James' post-transplant complications. 

All of those memories remain vivid with emotion. Yet, James is alive with the energies of childhood freedoms. We are firmly grounded in our lives. We are actively alive. We are dreaming of a future that extends beyond the day, week, or even month. It is a strange concept in the aftermath of our experiences. Our return to the world of the living has been a process unto itself. We are incredibly grateful to be here. 

Our lives are as complicated as ever, but in the most wonderful of ways. (We enjoy all forms of normalcies). We are going through a lot of change and transition, and in the process of major decision-making that would not have been possible a year ago. We never lose sight of our gratitude. 

As for this blog, I would love to see transformation here, as well. It would take conscious effort to return to habit, and commitment to a purpose or direction. I am definitely taking into consideration the possibility of writing more actively about our daily lives. I would need to dedicate some time and space to the act. The challenges remain simultaneously different, but similar, as our past experiences inform our present lives. For now, I just thought it was important to share the milestone.

final days of summer

I lost another blog post into the virtual world. The disappointment did not linger, and I am making another attempt to write. I have sentence fragments, partial paragraphs, and random thoughts scrawled on scrap paper from the last few weeks. I sit down to write, and I get caught in the emotion. It does not translate well (or easily) into language. Sometimes, I feel as though I repeat myself over and over again. I do not have a lot to write. It is the same, but with different words, I suppose.

A couple of weeks ago, James had a minor procedure (of no concern, I promise). It is always strange to be back in the hospital. James and I are both quick to panic without a reassuring handhold. I was repeatedly asked to leave his side without reason. I automatically returned to a state of fight. It was difficult to remain calm. I complied for the first request, and James insisted on my immediate return. It is a practice that is impossible to make sense of, and I had to be assertive. I was taken back to the weeks (and months) of constant advocacy that were required to be part of James' care in the ICU. Now, I had to fight to be present for vital sign readings, and medical history questionnaires. We both wanted to scream. We wanted our histories to be known. We didn't want to re-live any amount of trauma without one another. The fluorescent lights and smell of ammonia are enough to trigger a flood of memories. 

The surgery required general anesthesia, and James was gone from my side for four hours for a twenty-minute operation. I could not remain in the waiting room. I was not allowed to be present in the recovery room, nor was I told of the location. I walked the grounds of the hospital, found a small labyrinth, and foraged for wild blackberries. A few hours later, I made an attempt to write:

"I walked a labyrinth a couple of hours ago. The goal was not meditation, but rather, distraction. James was in the OR for a minor procedure, and I could not bare the waiting room. (Did I ever write about the waiting room? It is an experience unto itself). I thought a lot about writing; everything that I wrote about, and everything that I left inside. My body still holds memories at a cellular level. There is still a lot to share." One day, I hope to find the courage to share those parts of our story.

It is always a relief to walk away from the hospital. 

We are preparing for a lot of changes and transitions in the coming weeks. I might need to take to the blog more often. (In the least, I will need to find reason to procrastinate from graduate studies). James is eager to move forward, but I move with a lot more caution. I anticipate change with a nervousness about all the potential uncertainties. It is incredible to bare witness to all the various manifestations of fear in my life. I cannot escape it. I am always aware of its presence. (These are some of the realities of healing from ICU-related PTSD. This NY Times article, "Nightmares After The ICU," is an excellent read). 

That being said, I will not (and do not) allow fear to take away from the preciousness of our time together. We surround ourselves with love, and fill our hours with laughter and joy. We continue to spend a lot of time in nature. (There is a lot of healing to be found on the beach and in the forest). We enjoy reading in the hammock in the shade, and bicycle rides in the evenings. We have been rewarded with an abundance of fruits and vegetables in our garden. We discover new recipes and insist on eating well. 

That reminds me, I forgot that James had a CF Clinic at the start of the month. (Food and Cystic Fibrosis are intrinsically linked together). My update from Facebook: 

"A short Cystic Fibrosis Clinic update! James has gained 14lbs in the last six months! Fourteen pounds! Amazing, right? This has not been an easy feat with James' digestive issues. (Thank you, Rumble)! 

Best of all? James' lung function has increased by 6%. That is a major improvement. Although James's lung capacity exceeds expectation for re-transplant, and extended hospitalization, and James is no longer limited by a diminished capacity, it has always been a personal concern. We know that it is possible to lose 35% lung function overnight, and it is frightening to not have a large buffer against decline. We did not know that it was possible for his lung function to improve any further, because he has not seen any changes in his lung function since about 6 months post-transplant. 

We are certain that all of James' hard work at the gym and weight gain have contributed to this expansion in lung capacity. We'd also love to believe that the West Coast Trail and Pacific Ocean were part of his healing! Now, James has a better "buffer" against illness." 

That is all for now. A photo, or two, of course, to follow. 

living the good life

I wrote the following around James' lung transplant anniversary, but I never posted it, because it felt incomplete. It still feels incomplete, but it think it captures a lot of the complex (and often, contradictory) emotions that James and I experience on a daily basis. We are propelled forward in time,  but James and I both still carry the scars of our transplant journey. We are still on that journey. We are just in a different place:

One year later, James and I are alive. We are alive, and in love, with each other, and with life. 

One year later, James and I are no longer hostage to a disease. Our lives are not on hold. We still live with a great deal of uncertainties, but it does not prevent us from being able to live.

One year later, I continue to reflect with wonder and awe. Will it ever stop feeling surreal?

One year later, I still wake in the night to listen for James' breath, and wait for a rise in his chest. I do not have complete trust in James' health.

One year later, I still fall apart on a regular basis, but James is able to comfort and hold me. There are fewer pieces to put back together, and all of them are slowly changing shape.

One year later, James and I relish in the resilience and strengths of our bodies. We marvel at our abilities to move with ease. We enjoy a labouring of breath as an indication of health in exercise. We are active each and every single day.

One year later, I continue to cope with floods of difficult memories. We only have to look to the present for reassurance.

One year later, I am a different person. We are both different people. James' second transplant changed us in ways that would have been impossible to imagine. We are still learning to make sense of these changes, and integrate them into our identities and relationships.

---

The last few months have been a whirlwind. We have not had a lot of time to slow down and reflect. I cannot always afford the energy it requires to be social and active, but I know that it has been good for both of us to start connecting and re-connecting with friends and family. All of James' relationships have changed with his long-term absence from home. It is a difficult process to negotiate these changes, and re-establish those long-standing bonds that were impossible to nourish from his ICU bed. We are all in different stages in our lives, including James' loved ones. I also have to build a foundation here in Victoria of new friendships and networks.

James and I also have to contend with another social challenge in our post-transplant realities: We don't easily relate. Our life and death experiences separate us from our peers, and have come to inform every aspect of ourselves. We live in very different day-to-day worlds. Our values and perspectives are a reflection of those long months on the edge of death: Time is precious. Life is precarious. These realities are far more than a quote to share on Facebook (about living each day as though it were the last). We don't ever get to forget them. There are no absence-minded days to reassure these worries and concerns. We cannot spare a moment of the present. 

It is difficult to explain. I suppose, I don't have trust in a future. I am grateful for the perspective that allows James and I to cherish each and every moment, but hyper-awareness is also a heavy burden, or rather, a shadow on the brightness of our days. It would be wonderful to be able to forget, even for a few moments, and relish in the normalcies of lesser concerns. I want to feel a pure happiness that does not come with thoughts about the limits on our days together. Stay in the present. Stay in the present. Stay in the present. That was the mantra that got me through those endless months in the hospital. It remains relevant (and a necessity for survival).

James copes a lot better than myself. He has always lived with a very acute sense of his own mortality. He could never take any moment for granted, which again, is a blessing, but also a heavy weight. It is the privilege of health to be able to take your moments for granted.  It is a privilege of health to be able to live those moments without the constant knowledge of the limits (to those moments).

It is very difficult to share these thoughts and feelings without some level of guilt or shame. I fear that I will project a sense of ingratitude for James' incredible gift of another chance. My feelings of gratitude are parallel to my fears about the future. It is possible to hold two very different, but simultaneous emotions, without distracting from the presence of the one another. Transplant is the exchange of one set of problems for another, and I cannot lie to myself about that, at least, not after James' rapid decline into Chronic Rejection following his first transplant. In truth, I have more gratitude each and every single day. It only continues to grow with all the memories that James and I get to create together.

Here are some photos from the last few months:

GearUp4CF (100km for Cystic Fibrosis Canada) (c) Matt Smart and Megan Leslie

GearUp4CF (c) Matt Smart and Megan Leslie

GearUp4CF (c) Matt Smart and Megan Leslie

lounging and laughter in the backyard

Those last few photographs are from the cabin on the West Coast Trail. James talked about his dream to go to the cabin every single day in the ICU. There are not enough words to describe the joy at being able to realize this dream. It was a real physical challenge, but James has been working very hard to get strong enough for the feat. We were blistered, bitten, bruised, and in complete bliss. We look forward to heading back in a couple of weeks.

bronchoscopies in Spring

I wrote the following while awaiting James' return from a bronchoscopy. James had been fighting a virus for a couple of weeks, and saw a ten percent decline in lung function. We were relieved to learn that there was no evidence of small airway disease, but rather, James had inflammation that would (and has) heal, and James' lung function would (and has) return to his baseline.

Once again, I sit in the familiarities of a waiting room. James disappears down the hall for a routine bronchoscopy, and I remain tense with the anticipation of his return to the recovery room. I know that the benefits of bronchoscopies far outweigh the potential risks, but concern still rests on my chest as an ever-present caution.

I wish I were able to distract from the weight of uncertainties. My body remembers those paralyzing fears on a certain level. I recognize the absence of threat, but I continue to experience a body-based reaction. There is a divide between the rational and the emotional. The trauma of James' second transplant is still very alive inside of me.

All hospitals are the same. The air is stale with loneliness, or rather, a certain isolation. I suppose it could be the sterility of it all. I am familiar with the strong smell of antiseptics and ammonia. The constant flickering of fluorescent lights hum along with a chorus of machines beeping in succession. There are always bodies in movement, but I feel an eerie stillness. This is a world on hold.

The haunting shadow of memories comes in all forms. I reassure myself of distance from the past, and attempt to silence my mind. I breathe into the present moment. My thoughts do not wander far from experience, but I have no desire to re-live a single moment of past. I need to feel movement in a forward direction.

Writing has become a lot more difficult. I do not recall labouring over my words by James' bedside. I suppose it has become more difficult to separate from the heaviness of my emotions. My grief has settled in the marrow of my bones. I am out of practice. I must re-learn language as an escape. My love of words remains intact.

In April, I wrote a long post about the changing of seasons. It disappeared into the virtual world, and it has taken a while to get over that disappointment. I wrote it without an internet connection, and it failed to save on the iPad app. 

We are in love with Victoria in the Spring. We are surrounded by the beauty of living energy, blossoms and blooms of re-birth, and a strong sense of renewal. We tend to our garden with love and nurturance. We have strawberries and blackberries, and apple and plum trees. We are also nursing several herbs and vegetable seedlings. Our tomatoes, beets, carrots, peas, kale, potatoes, and onions are all sprouting out from the soil. The daily growth is a wonder to witness. We love to be able to cook with contributions from the courtyard garden.

We take advantage of any and all opportunities to spend time in nature. We walk the beaches, hike the mountains, bicycle along the seaside, and relish in every moment of feeling alive. James will be one year post-transplant in a couple of days. We have been doing a lot of reflecting. I will have more thoughts to share in the coming days.

photo dump!

a couple of months in a couple of photos (in no particular order):

Xanadu

Dorothy

Bombay

 My Ophelia has adapted very well to all the changes. She is in love with the outdoors, and has become a playful kitten all over again.

 (This is Ophelia's first experience with snow. We didn't get a lot more snow the rest of the season).

I finally (and to my relief) found Christmas photographs:

Christmas Eve on Salt Spring Island at James' Family Farm

Christmas Morning

James and I love to make fresh pasta for dinner. It does not take a lot more time or effort, and it is worth every delicious bite. (Can you tell that James has gained some precious pounds)?

We made a factory load of Hamentaschen for Purim, and had a ridiculous amount of fun at a Beatles-themed Purim Party.

Those are some seriously healthy lungs. (Thank you, Heather Armstrong, for these gorgeous photographs).

We are finally at home in Victoria.

milestone birthday

I have written this blog entry over and over again in my mind. I want to be able to fulfill my commitment to update on a regular basis. I want to be able to maintain a connection with our loving and supportive communities. I want to be able to share in the wonders of post-transplant realities. Yet, I procrastinate to no end. I avoid the blog, or rather, I avoid everything that it has come to represent. The associations alone come with waves of nausea, a tensing of muscles, pounding headaches, and an overwhelming emotional heaviness that bears the weight of deep-seated grief. 

It only takes a brief moment to transport back to the ICU. I find it hard to escape the magnitude of emotion. My body remembers. The sensations become real all over again. It does not feel safe to return to that point of mere survival, and re-expose myself to those vulnerabilities. I do not have enough distance from the trauma to reflect in a meaningful manner. I desperately want to be able to move forward without those shadows. The reminders are ever-constant, and ever-daunting, in many different forms. 

I continue to live in the present. It continues to be my salvation against the realities of Cystic Fibrosis and organ transplantation. I avoid thoughts that extend beyond the present. It requires an impressive effort to remain in that present. There is a certain level of denial that makes it possible to get out of bed. The rest becomes a source of motivation to live each and every day with gratitude. 

My love, James, had a milestone birthday over the last weekend. His 30th birthday is a testament to his passion and drive to survive. It also represents a vast amount of love and support, and a genuine commitment and dedication to James' survival by an incalculable number of individuals. 

We would not have been able to arrive here alone. 

On February 23, 2013, James was no longer able to breathe on his own. Mechanical ventilation was failing to decrease James' carbon dioxide levels, following several weeks of acute respiratory failure. The details of the day remain vivid in my mind, and I refuse to re-visit the horrors of that day. James' birthday celebrations were put on hold. We had tearful good-byes. James went down to the OR, and was placed on ECMO, an artificial lung system. 

A year later, James has few memories of the last year, and was able to mark his birthday as a true celebration of life. We look forward to sharing photos from the event. I will, as always, make effort to continue to update.

a new year

It is rare that I would labour over each and every sentence. I would sit beside James' hospital bed, watch the slow rise and fall of his chest, and write to the rhythms and sounds of the surrounding machines. Now? I sit down to write, and I am lost. There are not the right words. There are not enough words.

Last month, I wrote about a hard month for our transplant and CF communities. The following weeks were also very difficult. We learned of several deaths of young and brave individuals. Many more are facing complications of chronic rejection, kidney and liver failure, and the devastation of post-transplant lymphoma disease. It is impossible to make sense of it all. It doesn't seem right. It doesn't seem fair. It always seems to come with a genuine disbelief.

We feel the sadness deep in our marrow. We understand the realities of these diseases, but I think there is still some level of denial. We hold onto hope for a healthy future, for each and every one of us, and it is hard to comprehend the passing of these incredible individuals. We witness the strength and fight of our friends, and feel complete awe for their bravery and courage in the face of life-threatening circumstances. It can feel insurmountable. We are never far from these truths. We have been there. We never want to go back. 

We continue to hold each other close. We fill our lives with love and laughter. We reflect on each day as an incredible gift. We are very aware of our fortune. We carry that gratitude with us each and every day.

We had a very joyous holiday season. We were able to celebrate with both of our families, on Salt Spring Island, and here, in Victoria. (I have yet to upload photographs, but it is on my ever-growing list). We had the absolute delight of welcoming a little one into our family. It was an affirmation of life. We ache to be parents, but for now, James and I are proud to be Aunt and Uncle to our little niece. We look forward to a year of new beginnings.

James has a lot of tests and appointments in the coming weeks. We hope to be able to complete his 6 months post-transplant assessment. (It is now nearly 2 months overdue). We do not anticipate significant findings. James presents as a stable, albeit rare episodes of nausea and gastrointestinal distress. We are being very cautious about infection control with the flu season in full force. James and I have both been vaccinated against the flu, but that does not seem to ease the concern. We understand the severity of infection in individuals with immunosuppression. We take few risks. 

What else? James and I are both working hard to get back into physical shape. The rainy weather is not a deterrent. It feels wonderful to be able to engage our bodies in a healthy and productive manner. I cannot believe the difference after spending a year with little to no activity. James was essentially bed-ridden, and I was by his side for ten to twelve hours every single day. I ride my bicycle with new found ease, and James is able to do work around the house. (We are mid-way through some very necessary renovations to make the house safe and liveable again). 

We do a lot of cooking (and of course, eating). James was finally able to gain a few pounds over the last month. We hope that this will be the start of an upward trend. We are working our way through our favourite cookbooks, and James is learning to enjoy the experience of eating again. It has taken a long time, to say the least. Eating has always been very mechanical for him. 

That is all for now. I am heading out to work. I have a causal position working with children with Autism Spectrum Disorders, and other special needs and developmental disabilities. I absolutely love being back at work. 

As always, love, love, love!

merry christmas!

I cannot believe that the year is coming to an end, and James and I have a world of possibilities ahead for a future together. We experience the world through a lens of gratitude. We are always acutely aware of the alternative. We are not without our own difficulties, but James and I have the advantage of perspective. We can always re-frame our situation and circumstance. James is alive. We are together. There is nothing else that compares or holds the same value. Every day is a good day.

It has been a hard month in our Cystic Fibrosis and Transplant families. James and I are thinking about all of our dears friends. We know the ache of those awaiting transplant, away from loved ones, and without a certain future. We feel for those recovering from transplant, healing on all different levels, and facing the realities of post-transplant complications. We are deeply saddened by the passing of some exceptional individuals. We know that the absence of loved ones becomes increasingly palpable during the holidays. We remember the anniversaries of those lost in past years. We fight to reconcile our grief with the spirit of the season.

We are sending our love to each and every one of you. 

We wish you a joyful holiday season. 

We hope that you are surrounded by the comfort and warmth of your family and friends. 

love. love. love.

(James has been unable to complete his 6 months post-transplant assessment. We will update again in January. James continues to heal).

six months!

We made it. James is 6 months post-transplant (re-transplant). Our hopes for a future together are starting to feel possible again. We have grown together, in strength and courage, and those lingering fears are starting to fade into the background of our daily lives. 

The second transplant has been different on so many levels, and in many respects, a lot harder. We still wear the scars of James' long ICU hospitalization. James is still recovering from the physical aspects. He has overcome the major challenges of re-learning the basics, from being able to independently sit and stand, to walking short distances, and finally, being able to engage in intense pulmonary rehabilitation. James loves working out at Royal Jubilee Hospital in Victoria. He continues to challenge himself to push beyond the mental limitations of years of breathlessness.

James' nutritional status has also seen vast improvements. We no longer sit down to meals with fears of nausea, vomiting, and other gastrointestinal distress. James still copes with rare episodes, but these pale in comparison to James' past, lasting only a few hours, and without substantial weight loss, or interference with James' medication regime. He continues to aim for 3,500 calories every day in hopes of weight gain. We would both feel a lot more comfortable with a "buffer" for possible illness and weight loss.

We will need a lot more time to heal from the mental and emotional scars of the ICU. We both find it very difficult to think back to those months. It is almost impossible to discuss those months, or even to look at the photographs, without experiencing significant distress. For myself, I continue to live with some degree of grief, or rather, anticipatory grief. It is an ever-present reminder of James' morbidity, and although I work to remain positive, it also speaks to James' mortality. I am haunted by these memories in the form of nightmares and anxieties, along with physical and emotional fatigue. These realities do not disappear at discharge.

All the being said, James and I are absolutely in love with the "normalcies" of every day life. We feel a constant sense of gratitude and awe in the sharing of small joys. There is no comparison to any past that doesn't reinforce these incredible emotions. James is alive. James is alive. James is alive. Each and every single day warrants celebration. 

How is all this possible? Organ donation.

We love our extensive (and extended) Cystic Fibrosis and Transplant families. We want to be the voice of hope. 

Organ donation saves life.
 

photo dump!

James is almost 6 months post-transplant. This is a major milestone in the world of re-transplant. We promise a detailed update in honour of this achievement in the coming week. Here are some photos from the last month at home (in no particular order):

feeding the harbour seals

James' first hay ride!

bundled up in our crochet scarves from my cousin in Israel

beautiful clear day on top of Mount Tolmie

riding bikes at The Inside Ride for Coast to Coast Against Childhood Cancer in honour of Tamara (We love you, T!)

looking forward to Halloween

hiking along Mystic Vale at UVic

Vincent Van Gogh and Frida Kahlo for Halloween