love love love

transplant clinic update

We had a clinic today with the transplant team at Toronto General Hospital. We are both exhausted. It is a physical and emotional exhaustion. We did not anticipate a lot of change. James' lung function remains stable. The team understands that James' quality of life has deteriorated, and share the same concern about the risk of further decline. James' case will be discussed on Thursday for pre-transplant assessment and evaluation. We waited 19 months for James' first transplant. We can wait a few more days, weeks, or months.

James was very assertive about his symptoms. He advocated really well for a pre-transplant assessment and evaluation. He talked about his feelings of fatigue and weakness. His shortness of breath feels severe, and is easily brought on by basic exertion, including moving from sitting to standing, climbing stairs, or walking and talking at the same time. He sleeps a lot, with long naps during the day, followed by ten to twelve hours at night. We also talked about remaining positive. We are not ready to give up. We are prepared to go through the emotional roller coaster of transplant all over again, for ourselves, and for each other.

There was some good news: We are thrilled that James has been able to gain a few pounds. This is an incredible feat for several reasons. At 25% lung function, James' requires about 4,000 calories each day in order to maintain his weight. This is about 200% of the "normal" or "average" daily requirement. His body expends a large percentage of these calories simply to breathe. James has a history of significant difficulties with weight gain (and associated gastrointestinal problems). Individuals with Cystic Fibrosis also have pancreatic insufficiency and malabsorption concerns that further complicate these difficulties with weight gain. My understanding is that every pound of weight gain requires an increase of 3,500 calories in addition to daily nutritional requirements. In order to gain a single pound in a week, James would need to increase his calories by 500 calories each day. This amounts to an enormous 4,500 calories on a daily basis. 

James has been able to gain this weight without the support of a feeding tube or nutritional supplements. I am so proud of him. He has the horrible memories and threat of a g-tube to motivate himself to eat. This weight gain can be attributed to James' commitment to weight gain and exercise. He is constantly snacking on high-calorie foods. He surrounds himself with buttered and candied nuts, chocolate-covered pretzels filled with peanut butter, and a variety of cookies and candies, all while sipping on coke floats, cream-filled tea, and protein shakes. It is a full-time job. Exercise stimulates his decreasing appetite, and James' is always pushing the boundaries of "full" signals. He worked really hard to gain 45lbs in the year post-transplant. He is not prepared to let that go without a fight. As I read this paragraph out loud, James nods in agreement.

one month in Toronto

We have been in Toronto for a month now. This seems absolutely insane to me. Time seems to simultaneously disappear in the chaos of crisis, but also seems to slow in the every day moments of simply being in this world. This is the well-known illusion of time.

James was in the hospital for the first couple of weeks in Toronto. Those weeks were defined by the infinite boredom of hospitals (and loneliness of the long nights apart from each other). The uncertainties of those weeks has remained, but the sense of urgency has transformed into an acceptance. The following weeks gave way to the process letting go of our grief, re-framing our thoughts and feelings, and determining a level of stability, in all sense of the word (and world), and despite the continuous unknown.

My blogging doesn't seem to change. I write the same words in different combinations. I repeat the same script (both in writing and out loud). The translation is the same: James and I are still waiting. Our lives are one hold. We are forced to move from one moment to the next (without taking a single second for granted). Yet, I am always aware of the surrounding world. It continues to move at an unfathomable pace.  How do I make sense of all this? The background of our lives is a constant a blur of packed streetcars, hurried conversations, and never-ending meetings and appointments. The streets are still crowded and polluted with noise long after James and I close our eyes. We are always slowing down and holding our breath. We want that illusion of time; the one that will last well beyond the statistics and realities of our situation. We need that illusion of time.

We meet with the transplant team tomorrow. It will be a long day. We are hoping for answers. We are hoping to hear something different. We are also preparing for otherwise. We may need to remain static (even in this never-ending motion). I suppose it might be another form of balance. We are good at balance. We balance each other.

seven dwarves

7 dwarves of cystic fibrosis:

wheezy
phelgmy
salty
skinny
barfy
poopy
doc

7 dwarves of lung transplant:

achy
moody
hungry
healthy
happy
sleepy
doc

love for st. michael's

St. Michael's Cystic Fibrosis Clinic in Toronto has an incredible history of life-saving and life-enhancing research and advanced treatment in the field of Cystic Fibrosis over the last 20 years.

When James arrived in Toronto in November 2009, St. Michael's resolved James' life-threatening gastrointestinal problems that were preventing him from qualifying for transplant. James become stable and was able to gain enough weight to become a candidate for transplant. St. Michael's helped save James' life.

We will always be grateful for the love and care at the CF Clinic. They are an incredible team of dedicated professionals and specialists.

Here is a video that documents and celebrates the last two decades:

(Do you recognize that good looking couple at 2:10?)

surprise from home!

James' good friend arrived on Wednesday in the middle of the night from British Columbia to surprise him. James was (and is) absolutely thrilled to have a friend from home. Our spirits are lifted. We definitely needed a good distraction.

We will head to Toronto Islands in the afternoon. I will update again tonight, or tomorrow morning.

We are sending out love, love, and more love.

Update: We had a great day (and that would be an understatement). It is lovely to take a break from hospitals and focus solely on having fun. We were filled with laughter and energy. We will sleep well tonight, but it is the good kind of exhaustion.

Here are some wonderful photographs from the day by our friend, Kendell, yogi and photographer (http://meandher.smugmug.com/):

James and I are very grateful to have an increasing collection of photographs together, but I should admit that I have always been hesitant about being the subject of a photograph, and I prefer to hide behind the camera. That being said, I love to be able to document our time together into a permanent collection of shared moments. We also have another friend back in Victoria with an incredible talent for photography. She generously made herself available last minute to take a beautiful series of photographs before James and I had to move back to Toronto. We love all these photographs. We love our friends.

esophageal PH study results

This is a difficult post to write. I'm feeling very emotional. James and I received some disappointing test results. We are both feeling a lot of anger and frustration, but I can't afford the energy to hold onto negative emotions. This will be another process of acceptance and letting go.

In Victoria, James had an esophageal PH study to determine the level of acid in his esophagus. This was a miserable experience for James. He was required to wear an electric sensor and have a tube down his nose for a twenty-four hour period of monitoring. Microaspirations are a known cause of bronchiolitis obliterans. This is a form of gastroesophageal acid reflux from the stomach into the lungs that causes inflammation and tissue damage. It is very common in individuals with Cystic Fibrosis. It is preventable and treatable through a combination of laproscopic surgery and medication to reduce acid levels in the digestive system. 

The study was recommended following James' drastic reduction in lung function with no known cause. We have since learned that the study is standard for many pre-transplant patients with Cystic Fibrosis at some transplant centres. This is a proactive strategy to detect and treat microaspirations prior to transplant to prevent post-transplant bronchiolitis obliterans.

James was required to stop taking his gastrointestinal medications in the days prior to the esophageal PH study. At that time, James was in the hospital recovering from sinus surgery for a nasal obstruction and nasal polyps. (This is also very common for individuals with Cystic Fibrosis). His lung function started to decrease in the days following his surgery. We both suspected that this was correlated with the discontinuation of his gastrointestinal medications, but it was also possible that it was a delayed response form the anesthesia.

We waited several weeks for the results. We inquired almost daily during James' inpatient hospitalization. We finally decided to get in touch with James' transplant co-ordinator form British Columbia. She informed us that the results had been faxed to Toronto several weeks ago. James' results were abnormal. James has high level of acid in his esophagus. 

We are waiting for more details. We need more information. We hope that the damage is not permanent. We cannot increase James' medications that reduce acid, because of a dangerous interaction with his prophylactic antibiotics. We will inquire about a repeat test without the discontinuation of James' gastrointestinal medications. We will also inquire about the laproscopic surgery to prevent further microaspirations, but James' may not be a candidate for anesthesia, because of the dangers associated with a decrease in lung function.

That is all for now. The only other news is that James will no longer be attending the transplant gym. He will have to wait for a further decline in lung function or for his official listing on the transplant waiting list. We knew this was possible. The gym has limited space. The priority is for individuals on the transplant list or immediately post-transplant. We will continue to do physiotherapy independent of the transplant gym.

no longer homeless!

James and I have good news to share. We signed a lease for October 15th. It is a 6-month lease (and month-to-month afterwards). We officially have a home in Toronto. It is directly across from the hospital. It has a single bedroom, a lot of closet space, and a bright view of downtown Toronto. We will also have access to an exercise room for James' physiotherapy and of course, for my sanity, to some extent.

We are meeting more (and more) wonderful people at the transplant gym. There is a very positive energy of hope and optimism in the room. We continue to enjoy sharing stories amongst individuals pre-transplant and post-transplant. The level of support and encouragement is incredible. There are no words to describe the courage in that room. I will often feel a wave of sadness watching someone struggle for breath, but there is always laughter in the background to bring me back into the present.

James pushes himself very hard at the gym, and tends to collapse into exhaustion back at home. He is sleeping more and more these days. I wake often during the night to check on him. His breathing has become very shallow and almost silent at night. It scares me and I will reach out to feel his skin for warmth. It is a significant contrast to the last year of gasping for air and loud snoring from a complete sinus obstruction. 

James and I want to share our gratitude. It is important to keep our focus on positive.

We are grateful for each other. We are grateful for each and every day together. We are grateful for friends, family, and community. We are grateful for hope and optimism. We are grateful for access to health care, and a team of genuinely caring experts and specialists. We are grateful for deep sleep, and of course, good food. We are grateful for feline friends and late night cuddles (both from each other and Ophelia). We are grateful for gratitude itself. It is an excellent reminder to appreciate the present moment.

These photos are from our temporary home. We are looking forward to moving into a more permanent living situation. It will be lovely to have more than a mattress on the floor, but of course, all you need is love, love, love.

end of weekend update

James and I seem to be settling in to Toronto, and re-establishing a relative sense of normalcy, or in the least, adjusting to the reality of our situation. There will continue to be a lot of uncertainties in the coming weeks, but James and I refuse to live as though our lives are on hold. We are starting to plan for a foreseeable future in Toronto (with some degree of enthusiasm for everything that the city has to offer a couple of dreamers).

It has been a difficult transition. There is a process of letting go, or rather, a re-framing of our dreams for the future. We need to allow ourselves to envision a different future (without holding onto grief). We have not lost our dreams. This is simply another path to them. We still have the shared happiness and joy that defines our relationship. We find hope and optimism in each other. I have said it before, and I truly believe that James and I grow together in strength through the adversities of life. We are not strangers to the pain. It only serves as a reminder of the importance of gratitude. We take full advantage of our time together from one moment to the next. We look to each other and smile. There are still reasons to celebrate.

This weekend, James and I enjoyed some relaxation and fully met our cuddle quota for both canine and feline friends with four dogs and three cats at my father's house:
We also went to Word on the Street. This book and magazine festival was also the location of our third date together. We visited The Grid booth and started a discussion about Dating Diaries and a possible re-print of Jon and Amy, a well-received story about our first date (with pseudonyms). We hope that in consideration of the positive reception, James and I might be able to raise some awareness about the importance of organ donation (and low donor registry rates in Toronto at only 13%). Of course, there is also hope that publicity could also help in our personal campaign to finance our re-location to Toronto for transplant. We spoke with a writer at the booth. Our story was immediately recognized, and a nearby couple even requested a photo of us. We were encouraged to re-contact Dating Diaries about these inquiries.

We continued to walk around with silly paper crowns, browsed through books, magazines and comics, and enjoyed an ever so inspiring talk and interview with David Suzuki and Jeff Rubin:

James has an appointment with the Toronto General Hospital transplant clinic in about a week. We hope to gain a better sense of his prognosis, and the course of treatment available, including assessment and evaluation for a second double lung transplant. James' lung function appears to be stable (with some normal variation in both directions), but I am weary of the weight loss (and a history of gastrointestinal problems that have been associated with James' weight status). I am learning to become an active and assertive advocate, but I also have a tendency towards feeling overwhelmed and helpless. It is a fine balance.

That is all for now. We are sending out love, love, and more love. 

a day in kensington

We enjoyed a day in the market with a focus on the joys of being alive. We don't need to find reasons to sing and dance each and every day. We know that importance of laughter and fun. Here are a collection of photographs from the day (with a requisite photo of a furry friend, because James' days are never complete without befriending a squirrel or two):

love. love. love.

transplant gym

It is strange to be back at the transplant gym. We hear a lot of stories. We share our stories. There is a lot of community-building and a transplant "family" is formed. There are even a few people from James' pre-transplant days. Most of them are recent transplants. (James was at the transplant gym for 3 months post-transplant, and it has been 16 months since his first double-lung transplant. These individuals would have been on the waiting list for longer than a year).

James at the Gym in June 2011 (1 month post-transplant)

There are very few young adults in the gym. The vast majority of elderly seniors awaiting lung transplant. (The stories of COPD and emphysema are painful to hear. Many of these individuals are only a few years younger that my Bubie would have been, but I do not believe she would have been a candidate for lung transplant. She also had advanced lung cancer that resulted in the removal of a third of her lungs a few years prior to her death).

Today, James and I met another young man with Cystic Fibrosis (from across the room). We were not able to talk with him, because the risk of cross-contamination and shared infection is high among individuals with CF. We are required to remain on separate sides of the room. The transplant gym makes all efforts to create separate schedules for individuals with CF. 

It was clear that this young man is pre-transplant. His cough was reminiscent of James' pre-transplant days. There were hours and hours spent coughing up phlegm and sputum in the morning (and throughout the rest of the day). James had to exercise with a garbage beside him. We do not miss these days. It was hard for both of us to hear, but at the same time, I have a hard time remembering James' constant cough. This is the definition of being blinded by love. The same can be said for James' malnourishment. He was 90lbs (and all bones). Now, I cannot look at photographs from our first year together without feeling nauseous. He was dying (and close to death in those last few months). I don't think I really let myself feel or know the extent of his illness. We just focused on a single day at a time. We are doing that again, but I cannot lie to myself. I cannot deny the gravity of our circumstances. We have been here before, and it is all too familiar.

rosh hashanah

Last night, James and I celebrated Rosh Hashanah (Jewish New Year) with my family. It was a small crowd around the table. The absence of loved ones lost in the last year was strongly felt by all of us. We shared stories and watched videos, but there is still a lot of pain and grief. I held James close, and I asked for a lot of photos to be taken. I have always hidden behind the camera, but these days, I want to document every moment I have together with Jame in shared love and happiness.

He is looking good for someone in lung failure.

We also went to the transplant gym in the morning. James worked really hard, and then, fell asleep in complete exhaustion for most of the afternoon. I'm so proud of him. That never seems to change. He is working at about the same level as he was pre-transplant, but with a significant difference: He is not on oxygen. We looked around the room. There were a lot of people in dire need for lungs. We shared similar thoughts: James is not sick enough for transplant (despite his decline in lung function to 25%). This should come with some reassurance, but it is devastating to imagine that James may have to deteriorate a lot further before being considered a candidate for another double-lung transplant. 

We are feeling very lost. It is not safe to return to Victoria, but James is not ready for transplant. His body is compensating for the decline. We are playing a waiting game. We have no certainties for the coming days, weeks, or months. We can no longer conceptualize a form of stability for James' health. (Can stability exist at 25% lung function?). We really have no choice. We have to take it one day at a time.