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.

Saturday, November 24, 2012

and a second entry from the wife

Jamie and I are both recovering from the complete lack of sleep of the last few days. We are relieved the be past the point of severe pain and nausea, but James will not be able to be discharged from the hospital without an assessment of his supplemental oxygen requirements. His lung function appears to have deteriorated to the point of impacting his blood saturation levels. We were prepared for this next stage in the progression of the disease, but that doesn't necessarily ease the emotional and mental transition. James has been on supplemental oxygen throughout this hospital admission for low levels of blood oxygen saturation (and decreases with exertion and during sleep). James appears to have become oxygen-dependent again. We feel a sadness, to some extent, but not beyond expectation given the circumstances. We don't imagine that this change will have a significant impact on James' quality of life on a daily basis. Some of our best collections of memories are from James' pre-transplant oxygen-dependent days. That's all for now. I am conserving my energies for the next few days. We promise to continue to update. As always, James and I are sending love, love, and more love.

James here

Hello my loves. Yesterday at 4am I was rushed across the street to the hospital in a wheelchair driven by my mom and wife. Along the way I was barfing my dinner up to either side of the chair. This was at 4am and would have been pretty hilarious if other people had seen it. I also managed to spray puke at my wife at the end of this very long day. Believe me, it was very long for poor Adena as well. 

I am now admitted to Toronto General again. It's weird because this is all a reaction to a treatment they gave me called Neupogen, which is supposed to increase your white blood cell count. When they gave me my first dose they said there were almost no complications. HA HA FUNNY. I woke in horrible back pain and spent the day in agony. Then they gave me Tylenol 3 tablets that didn't work. Then I couldn't sleep all night, started barfing, and we rushed me to the hospital. It was scarily reminiscent of my shingles attack and caused us a lot of anxiety. (It's not shingles; shingles only happens on one side of the body, this pain radiated from my middle lower back.) Now that I'm in hospital I'm on IV hydromorphone for pain and Zofran for the nausea. 

I actually feel good and hungry now since this was not a typical nausea attack that leaves me weak for days. We are keeping an eye on my oxygen and hopefully I'll be able to go home soon! I feel so loved with my wife beside me and my mom at home nearby. I am really blessed. 


Friday, November 23, 2012

week of clinics (and back in hospital)

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

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

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

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

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

Sunday, November 18, 2012


It is lovely to slow down on the weekends and make a conscious effort to focus on slowing down. We have each carved out a space in our little apartment. We are happy to share that space with each other and still be able to engage in our own activities and interests.

I have minimal ability to focus these days, but I can manage to read a few pages, check my e-mails, and write a blog post. I will often do some basic crafts to occupy the hours. I will eventually disappear for short walks and household errands (without any real agenda aside from fresh air and getting out of my head). James is content on his computer without disruption for any length of time. Ophelia will even makes an appearance these days for afternoon naps in the sun puddles on the floor. We are all ready for naps by the time our morning caffeine starts to leave our systems. 

All that being said, it is really difficult to feel confined to within the house. James' limitations, in regards to mobility and immunosuppression, mean that we have to redefine our quality time together. It was only a few short weeks ago that James and I were able to walk through high park, and Kensington market. We were visiting museums, and libraries. We truly able to make the most out of our time together. The changes are truly startling to contemplate. There is a grief that I am not prepared to acknowledge (at this point, at least). 

Instead, James and I have to create a different reality. We cuddle up together, and reminisce about the last few years. We dream of a different life together post-transplant (and for our return home after re-transplant). We have a few games to distract and entertain, but mostly, I crave the laughter and smiles. I want to be able to keep singing and dancing together.

I want the impossible. That is, I want a return to only a few months ago. I look through our wedding photographs. I remember the possibility of a future of our dreams. There was an unbelievable spirit of shared joy and happiness. It was only a few months ago, but in some sense, it feels a lifetime away. We never could have imagined (or would have allowed ourselves to imagine) that James and I would be back in Toronto waiting for a second double-lung transplant a few weeks later.

I don't believe that James and I were naive. There was an illusion of health. We had a perfect year post-transplant with minimal complications. There were no warning signs. It is impossible to make sense of, because of the unpredictable nature of the disease (and the complete unknowns from the world of medical science). There are no explanations. It is hard to accept the circumstances without answers, but James and I have no choice. We have to keep focused on living. This is nothing more important that being here, alive, and together. I am grateful for a warm body in my bed tonight, and a hand to hold throughout the night.

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.

Wednesday, November 14, 2012

Monday, November 12, 2012

18 months

Today marks 18 months since my double lung transplant. My first year was problem free, but since then, I have been having problems with bronchiolitis obliterans. Regardless of all these current issues, I am still extremely grateful to my donor and to every moment that I have lived since my transplant. I would not wish for anything to be any different.

Thank you to everyone who has supported me on this quest! I am still fighting, and I plan on getting a second transplant soon. I look forward to giving back to all of you. We are so grateful for your continuous kindness and strength.

love. love. love.


Happy happy happy "lungiversary"! It has been a wonderful 18-months!
love love love

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.

Friday, November 9, 2012


As many of you know, James and I have been fundraising to finance our living and medical expenses while James awaits a second double-lung transplant in Toronto. James' disability assistance does not cover the cost of rent, and I am unable to work, but I am his full-time support and caregiver. The average wait for a double-lung transplant is 6 to 9 months, and James and I will need to remain in Toronto for at least 3 months post-transplant for rehabilitation and physiotherapy. The financial stress compounds the intense emotions of already being in a state of on-going crisis. 

In these last few weeks of fundraising, James and I cannot believe the outpouring of love and support. We have received overwhelmingly generous and truly incredible donations. Our loved ones from all over the world have made significant contributions, along with dear friends from the online world, and anonymous donations from strangers. It brings tears to our eyes. We are so grateful for the help during these difficult times.

We continue to fundraise with the goal of $10,000 in hopes to supplement James' disability and a few hours of part-time work on weekends. The cost of a year in Toronto is closer to $18,000 to $20,000, and that would only include rent, food, and transportation. We are fortunate to have universal health care in Canada, but that doesn't cover a large proportion of prescription medications that must be paid in advance (and are only reimbursed by a small percentage). There will be other medical costs to consider as James' health deteriorates, including oxygen supports, and mobility assistance devices.

We decided to have an online fundraiser on November 12, 2012 to celebrate James' 18-months post-transplant "lungiversary" and in hopes of completing our fundraising goal. It is difficult to ask for financial support with the knowledge that many of our friends and family members are also in need. "Toonies for Transplant" will hopefully allow family and friends to make a small contribution to our quest for lungs (and invite other friends and family to the "event"). The online fundraiser links to James' fundraising page (with less than a month to go). We are feeling optimistic about meeting our goal. 

We love you all so very much. 

Thank you. Thank you. Thank you.

Love. Love. Love. 

Thursday, November 8, 2012

for the love of felines

and some more photos from this afternoon, because Ophelia was in sunshine bliss (and watching James play with her warms my heart):

home from hospital

James is back from the hospital. The joy of his presence in the house again allows incessant worrying to be replaced with a more reasonable and relative level of concern. We are settling back into a routine, re-adjusting to the changes in James' health status, and re-establishing another sense of "normal". Our fears remain, but it does not compete with the love that continues to grow between us. Our resilience in the face of on-going crisis is remarkable even to ourselves. We are constantly discovering a new found sense of strength. We hold each other closer to navigate through the rapid changes and process a spectrum of emotions. The fears seems to subside with an exceptional gratitude for another day together. We continue to hope for a second double-lung transplant, but there is still a need to ground ourselves in the moment, and make the very most of our days.

Ophelia seems to share the same enthusiasm at James' return from the hospital, but of course, refuses to overtly demonstrate affection (on film, that is). It would allow for anthropomorphism on an entirely different level. She's been roaming our little home with a playfulness that has been almost entirely absent in the last few weeks of transition. She's seems to be adapting along with the rest of us, and also making her presence known. 

It has been nine months since my Bubie passed away. She was a remarkable woman with a love of life (right to the very end). She was truly the life of each and every party, and being with her, there was always a party to be had. The memories of her last few weeks are heavy with emotion. My fears for James are compounded by these memories, and an ever-lingering grief from this loss. I am all too familiar with end-stage lung disease, but I also know that there is still a lot of life to be had. These are among the reasons that James and I make a conscious effort to laugh on a daily basis and to surround ourselves with love.

We are so grateful for our growing book of love. Thanks you for all the cards of love and support. We are amazed by the kindness of loved ones and even faraway strangers (who have become dear friends). We may purchase a bulletin board and transfer these lovely cards (and add some colour to our home).

Monday, November 5, 2012

television show

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

The first video clip is unlisted here.  

Here is another clip from the segment:


Friday, November 2, 2012


There are times that writing can seem cathartic, but I'm finding myself more and more at a loss for words these days. The love and gratitude I feel for James is beyond expression. The limitations of language are never more evident than during my attempts to express this love and gratitude. It is perhaps for that reason that James and I fell in love over hours of reading poetry out loud to one another. We both understand the impossible depth of emotions that are beyond expression and articulation. We are both sensitive to the intensity of our emotions. We truly need the language of poetry and metaphor to help transform the abstract into some concrete form. The wonder and awe I feel for James' strength and courage is James. James is my wonder. James is my awe. It is here that I recognize that language and words are not enough.

James is still in the hospital. We are waiting for him to be moved to a bed outside of the emergency room. He has managed to get some sleep in a private room, but comfort is rarely synonymous with the hospital. I read out loud to him, hold his hand, and remember those afternoons in the shade and evenings by the fireplace in Victoria. We share the intimacy that comes with a love for simply being together (in separation from time, space, and of course, circumstance). Sometimes, it is all there is.

4 months ago

James and I were married on July 2, 2012. On July 3, 2012, James' lung function took a sharp decline, and continued to decline rapidly over the next couple of months. Every day together is a reason to celebrate. Today, James and I celebrate our four month wedding anniversary. These are the vows that continue to hold true to each and every moment of our lives together:

I make these promises to you:

I promise to love you throughout our lives together.
I will care for you with trust and respect.
I will offer support and encouragement for your individual growth, and for the fulfillment of our shared dreams.
I will celebrate life’s joys with you, and comfort you through life’s sorrows.
I will provide you with strength and hope for the future.

Together, we will act in ways that show compassion for all humanity, and respect for the earth and all living beings.
We will create balance in our lives, practice gratitude, and be sensitive to each other's needs.
We will build a home and a life together that is filled with love, happiness, and peace.

I love you.
Let’s get really, really, really old together.

Thursday, November 1, 2012

hospital and book of love

I have just arrived home from the hospital. James was admitted to the hospital again for anti-emetic treatment and hydration following another nausea and vomiting episode (and dehydration from several days of minimal food and drink, because of on-going low level nausea and lack of appetite).

He toughed it out at home for as long as possible (always with that same strength and courage). He fills me with wonder and awe. We held hands and cuddled together in his hospital bed for most of the evening, but I left him to sleep (and in hopes of also finding some sleep for myself). It is always hard to leave him in the hospital. It is even harder to return home to an empty bed.

On an aside, James had a good friend, Eva Markvoort. Eva was a strong voice in the Cystic Fibrosis community, and an advocate for organ donation. The film, "65_RedRoses", is a documentary about Eva's valiant struggle to survive during the transplant process. She had exuberant passion and strength during the most difficult of times. Eva had a "wall of love" from all around the world:

James and I are growing our own "book of love" with letters, cards, and postcards from loved ones and friends. It is a wonderful way to lift our spirits.