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

home sweet home

I am out of excuses. I can no longer avoid an update. I suppose I am developing my procrastination skills in preparation for graduate school. In truth, I rarely turn on my computer, and I do not feel an immediate or cathartic need to write. Then again, I think it is important to document our process and journey through the worlds of Cystic Fibrosis and transplant. These memories are a precious reminder of the precarious nature of our lives. It is through this perspective that James and I are able to let go of sources of stress, and focus on the happiness of, well, being alive (and being alive together). There was a period of time that I wasn't certain I would ever be able to feel a form of happiness again. We are so relieved to be back into the normalcy of our daily lives.

I did not realize that I have yet to post from home. (My sincere apologies). James and I are back in Victoria. We have been home for several weeks. We are taking is slow, taking deep breaths, and taking it all in. We are filled with complete gratitude for each and every day together, along with our loving and supportive community of friends and family, and of course, James' organ donor, whom without, none of this would be possible. 

We spend a lot of time in nature (as the weather allows), and a lot of time enjoying the freedoms and luxuries of leisure time. We do a lot of cooking and baking together, and are slowly working our way through the collection of cookbooks at the local library. We are still in the mist of nesting in our little home. There is a lot of cleaning, renovation, and organization to be done, all in time, and without pressure. We are also developing a taste for thrift shopping; a habit that cannot be supported on a disability assistance. I will be returning to work on a casual basis with much excitement and enthusiasm. 

My graduate degree has been deferred for September 2014, and I cannot begin in January without re-application. I still hope to connect with my graduate supervisor in the next few weeks, and start to build that relationship. James is also looking at the possibility of non-degree credit courses through correspondence or online courses at the University of Victoria.

Speaking of James, I continue to feel wonder and awe for his courage and strength, and of course, his incredible drive and passion for life. James' recovery has been nothing short of miraculous. I have no other words. Aside from the day-to-day realities of Cystic Fibrosis, and of transplant immunosuppression, James is almost as healthy as after his initial transplant. He has re-gained his independence, and through pulmonary rehabilitation, James is continuously building strength and endurance. We spend very little time in hospitals, and at doctor's appointments, and I don't suspect that will change in the near future. We feel very blessed.

Here are an insane number of photographs from the last few weeks at home:

o, and an article from the Times Colonst on October 14, 2013!