leaps and bounds

James' progress has been absolutely astonishing over the last few days. It is impossible to describe all the minute details, but I will do my best to convey these leaps and bounds. (We are moving mountains here). 

James is awake and alert enough to be able to communicate again. He is able to advocate for himself and become an active participant in his own care. He is re-developing a sense of autonomy and independence in his self-care. He is further re-gaining a sense of normalcy through the establishment of a structure and routine to his days. It really is an exceptional change. It represents movement forward on several different levels. 

James has shown improvements (along with great strength and resilience) in all areas of concern. He is no longer on sedation, and is staring another slow wean from long-standing analgesia. His respiratory status is back on track with post-transplant recovery expectations. He is tolerating lower levels of mechanical ventilation support for longer periods of time with each consecutive day. His kidneys and liver function are starting to show positive signs of recovery from early indications of potential failure. His fluid balance has been trending towards the negative, and relieving pressure on his lungs from fluid overload. His gastrointestinal distress remains, but without the same level of concern. The list goes on. The message is the same: We are trending in the right direction in all regards. 

The news gets even better. (There is always more sunshine). James achieved a major milestone this afternoon. James walked this afternoon. He walked a marathon after two weeks with minimal physiotherapy and movement. It was incredible. He nearly passed out from the short distance, and earned a well-deserved afternoon nap, but James still had motivation and energy for arm weights, and five hours in a chair. There are not enough words for "remarkable" here. Instead, I will leave you with love, love, and more love.

so far

We have come so far, and it is hard to look back, but it an important reminder of James' progress and improvement. We have a world of gratitude for the exceptional medical care at Toronto General Hospital, and for a loving and supportive community of family, friends, and strangers. We only want to move forward. (Click photographs to enlarge).

love, love, and more love

re-defining normal

A few days ago, James and I had a full day without any hospital appointments. Weekends aside, it is rare for James and I have to time together that doesn't revolve around the hospitals (and post-hospital fatigue). We decided to take the risk of going out to the museum with hopes of avoiding crowds by visiting in the middle of the day. We constantly wash our hands and take all the necessary precautions to avoid potential infection, but it is also important for James and I to feel as though we have a quality of life together. I pushed James in his wheelchair through the crowded streets of downtown Toronto. This is an experience of its own kind. He also insisted on trying to walk to give me a break (with the back of the wheelchair as support), but found it exceptionally difficult. It is painful to watch James struggle to breathe. We took long breaks, but even still, it was impossible for him to take more than a couple steps. I felt the tears stream down my face with the cold as an excuse. I knew that James was trying to me, and that too, is a different form of hurt. We are both trying to protect each other. We both worry about each other. James, even at his weakest, is still trying to take care of me. I know I say this with a bias, but I truly admire the part of him that cares so very deeply for others, including myself, of course. 

We both loved the museum exhibition. We felt a reassurance that some degree of normalcy can still exist within our lives. We are always re-defining our "normal". I am trying to focus on the positive, but it is a conscious effort on my part. It does not always come naturally to me. There are days that I feel the weight of my exhaustion building into a seemingly insurmountable fatigue, but I continue to move forward. It is a strange feeling to watch the world continue to move around you, and to feel separate; that is, to be moving at a very different pace. My world is on hold. Our world is on hold. We are slowed to living within each and every moment, and rarely, beyond that present. I am grateful for the perspective, but I still struggle to make sense of the speed of the world around me. We are in a state of constant crisis, but there is a stillness that I struggle to define. It is an isolating feeling to no longer relate to the world at large. 

I love to be able to share this little space in the company of James. It has been more than a couple weeks since James' last hospitalization. There is a lot of be said about nearness. I am grateful to be able to help him to take care of himself. I am grateful to be part of his journey; a journey that now belongs to both of us. James is still very sick, and I feel as though I only really allow myself to grasp that reality on a certain cognitive level. I don't allow myself the emotional freedom recognize the severity of James' condition. A few weeks ago, I felt as though I would never find a sense of hope again. Now, I am only imagining a future together. I have been able to shift from simple acceptance to a place of hopeful resolve. It is more than wanting to believe that James' transplant will come in time. James' transplant needs to come in time. It will come in time. I refuse to imagine a future without him (at least not at this point).

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.

assessment day one

We had an early start to day with the beginning of James' pre-transplant assessment. The first test was early in the morning at the Cardiac Radiology Lab. I could barely manage to stay awake in the waiting room. I closed my eyes to music for the first hour, and paced the halls for the remaining forty-five minutes. James emerged from the test with the same feeling of exhaustion and restlessness, but there was also a sense of relief to be moving forward with the pre-transplant process. We are closer and closer to our goal of being officially listed for transplant. We went directly to the lab for James' blood tests and ECG. We were amazed at the collection of fifteen vials. James was drained (literally), and ready for breakfast and medications. This, of course, is a positive sign towards to the direction of being discharged from the hospital.

I left him with the necessities (that is, a warm cup of tea with loads of cream and sugar, and access to the internet) and ventured across the street to collapse at home for a few hours. I'm learning to give myself permission to leave James at the hospital for the purpose of self-care. Sleep doesn't come easily with James in the hospital, and I need to listen to my body. I will not be a able to take care of James without also taking care of myself. I need an official prescription for rest and afternoon naps.

James will have more tests in the afternoon. The Pulmonary Lung Function Lab will do a series of lung function tests. We will both be interested in the results. It is very difficult to make sense of James' decrease in lung function without a simultaneous decrease in blood oxygen saturation. James' lung function is lower than pre-transplant, and James feels a strong sense of breathlessness with even slight exertion, but he still does not require oxygen. This is positive, but also perplexing, to some extent. These tests will be followed immediately by an appointment for a Bone Mineral Density Scan. At that point, I am certain James will be almost walking in his sleep.

It is a long day of being poked and prodded. It doesn't help to have to return to a hospital room rather than his own bed at home (with Ophelia curled up with us). These are exactly the days that require the warmth and comfort of loved ones. We will have to re-define intimacy to include shared hospital beds (without the tangling of cords, isolation precautions, and background of beeping machines).

James is fortunate to have been moved to a private room. We can close the door, curl up on his bed, and bring each other to laughter and tears without the fear of being disruptive to others. James has been known to belt out Meatloaf lyrics in the hospital (without the knowledge of a team of doctors outside his door). In the weeks post-transplant, I believe this impromptu karaoke was both an attempt at courtship towards myself, and a declaration of being ready for discharge. These are the moments that demonstrate James' strength (despite the difficulties ahead). There are always moments of pure delight at being alive. He is the epitome of living life to its fullest.

(On a side note, I am reminded of my Bubie. She has only been gone 8 months. She loved life to the very end. She found joy in all possible forms. We painted her toenails in the hospital, drew pictures together on paper plates, and shared afternoon tea. There was almost always laughter in the room). 

James has a deep level of acceptance for our circumstances. We will go through another long day of testing tomorrow, and again on Wednesday, and I know that James will still be smiling at the end of the day, and well into his dreams. He has taught me to do the same (or at least, I try my best). I hope that spirit never fades.

I'll be heading back to the hospital soon to share a dinner with my love. Here we are on Skype in the late afternoon:

back in the hospital

James is back in the hospital for gastrointestinal symptoms. His lung function is still not stable, but James is coping very well (as always). He was admitted through the ER, and is now sound asleep on the transplant floor. This wasn't the case last night. I'm always relieved to arrive at the hospital and find him asleep. Sleeping can be close to impossible in the ER with constant noise and movement, bright lights at all hours of the night, and regular interruptions for vital sign readings. It is not very conducive with healing. 

Of course, James and I are also always weary of sharing space with a range of viruses and bacteria in the ER. There were no isolation beds available, and James was stuck in a room with three other patients. One of these was on droplet precaution requiring gowns and masks for doctors and visitors. This was not very reassuring for the rest of the patients.

For now, James will focus on healing, slowing down, and listening to his body. He is not a stranger to these gastrointestinal episodes. They are reminiscent of his pre-transplant past (and were a significant barrier to be listed for transplant the first time around). We are grateful to have an established routine. James' symptoms seem to be under reasonable control. He will regain his energy over the course of the next few days. James continues to show incredible strength.

On a side note, I have been slowing setting up home in our new apartment. (I got the keys yesterday morning). It is literally across the street from the hospital. James will be glad to be discharged from the hospital into our own place. We may only have a mattress on the floor, but I have no doubt that James and I will make it our home.

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.

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. 

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.

exercise

Exercise is amazing. Did I mention that I love exercise? Thirty minutes of weights in the gym, and I am significantly more stable (mentally, that is). I start to feel human again, or rather, I feel something that I would assume to be in the human-like range. What does it mean to feel human? Perhaps, I simply mean that I feel more alive, or in the least, more able to function. Perhaps, I might need to experience a certain amount of sleep on a regular basis before I can be expect to be able to engage in a philosophical discussion with any degree of insight or intellect.

It is early evening, and I have returned home to make dinner (and of course, I went to the gym. Did I mention that I love exercise?). James is back at the hospital in a benadryl-induced sleep. He is eager to complete his last treatment and be given his discharge papers. The muscle jerks and spasms that were reminiscent of James’ past dystonic reactions to various anti-emetics have started earlier in the treatment process, after the administration of benadryl, but before the thymoglobulin. We are starting to suspect that it may be an allergic-type reaction to the benadryl, or even a psychosomatic response in anticipation of the anti-lymphocyte globulin. Regardless, James’ best defense is to close his eyes, and hope for an extended period of uninterrupted sleep to get through the process. He is insanely tough (and very tolerant of the constant checking of vitals, and the disruptive environment that invariably is the hospital).

James’ lung function appears to be stable at 25%. This is good news to the extent that it does not represent further decline. It could be weeks before the potential effects of this treatment are known. In the past, James and I have been cautiously optimistic (within reason). This is different. We know the efficacy of this treatment is rare. Our understanding is that individuals with acute cellular rejection tend to have a positive response. That being said, James does not present as acute cellular rejection. His rapid decline is more suggestive of bronchiolitis obliterans. This was the diagnosis given a few weeks ago. It is a diagnosis of exclusion for deterioration with no known cause. We are willing to make all efforts to recover lung function, but it is not clear whether this is possible. The damage may already be permanent. This is impossible to know at this stage.

James is struggling for breath with any or all exertion, including slight inclines, fast pace walking, climbing stairs, and even light stretching. Nevertheless, James’ oxygen saturation remains within the normal range. This is a good sign. He does not require oxygen support. On the other hand, it seems as though James’ heart is compensating for his low lung function. In the past, James had to work exceptionally hard to increase his heart rate to an aerobic range. This is no longer the case. James’ heart pounds from a couple of stairs or even several minutes of stretching. This is followed by throbbing headaches, extreme shakiness and fatigue, and a sense of weakness and complete breathlessness.

James is learning to take it slow (or at least, slow down), but he does not want to lose the benefit and hard work of the last 16 months since his transplant (and longer). He has been able to build incredible strength and endurance. We enjoyed hiking, swimming, and bicycling. We were lifting weights several times a week.

Here he is in the Gulf Islands Driftwood in February 2012:

and another from only a few months ago:

We have been asking the hospital for guidance over the last couple weeks of James’ admission. We made several requests to be seen by the transplant physiotherapist. We continued to inquire on a daily basis to each different doctor and nurse. We were finally able to meet with the physiotherapist this afternoon. She was wonderful and completely sympathetic to our situation. She understood the importance of maintaining James’ exercise regime (both for his physical health and as an appetite stimulant) and went to the transplant gym to advocate for us.

The transplant gym is reserved for patients actively awaiting transplant or up to three months post-transplant. The schedule can be difficult to arrange, because of the need to separate individuals with Cystic Fibrosis with burkholderia cepacia (and other dangerous and infectious bacteria). We have been given permission to return to the transplant gym (even though James is not on the transplant list). We are so grateful for the help of the physiotherapist in advocating for us, and for the kindness of the transplant gym in accommodating our needs.

James and I seem to grow stronger together in crisis (rather than apart). James tells me, “I love you more and more each day.” I do not hesitate to share the sentiment. The feeling is mutual. We do have our moments of tension, but James and I are able to attribute these to high dose steroids (on his part) and lack of sleep (on my part). We are forgiving of each other’s imperfections, and continue to hold each other closer at night. We are all too aware of the fragility of life. We cannot afford to take a single moment for granted. We have to focus on the love between us, and the joy and happiness that we bring to each other’s lives.

comfort in discomfort

I wish there was more to write about. My dearest, Jamie, is lying beside me and closing his eyes in hope that sleep will bring relief from dystonia and malaise of thymoglobulin treatment. He had a treatment break yesterday to allow his low white cell counts to recover to some extent, and is finally nearing the end of his treatments. There is a fine balance with immunosuppressants between the benefits of preventing James' body from detecting his donor lungs as foreign, and the risks of developing serious infections. 

As always, James pushes through with strength and determination. He seems to accept a certain level of discomfort as a reality of living with disease. Although James rarely complains, he often expects and craves video games and McDonalds in exchange for his courage. This is a conditioned response from childhood. These were the rewards for needles and pills, invasive procedures, and long days in the hospital. These days, I am able to offer comfort with my presence, but I will admit, James was thrilled that I brought him McDonalds as a "treat" after nearly two weeks in the hospital. I also bought him a discounted t-shirt that is reminiscent of his favourite arcade game. (The behaviourist in me enjoys this testimony to behaviour modification and the power of positive associations). It was the best of both worlds, and in reality, based on a need, rather than a desire or impulse. James' weight has become a concern again (his wedding band is falling from his finger), and his few packed t-shirts in Toronto are all worn from lying in hospital beds and going to the gym.

There is some good news, but I am finding it hard to feel excitement or pride. I have been accepted into a prestigious graduate school program for January 2013. I will have to defer my admission, because of James' declining health status. That disappointment seems to negate the positive feelings. I wish I had more resilience against a seemingly negative cognitive bias. I wish it was easier to give myself permission to feel good. 

That is all for now. I may write more again tonight upon returning home. (I am having a really hard time with font size. It is really inconsistent. I will make an attempt to figure it out at some point in the not so distant future).

gratitude and finding strength

[As with the previous entry, I wrote this in the evening, but I was unable to post, because I only have internet access at the hospital].

It seems as though I may be establishing a routine that actually involves writing on a regular basis. (It also seems to be that lack of internet access could be a great source of motivation to write). I love to write, and I wrote in journals throughout my adolescence, but I would eventually become too critical or judgmental of my writing abilities to continue for any length of time. (Perfectionism was a great barrier to many of my pursuits). My online blogs have almost always been private to protect the personal nature of my ramblings, but I am starting to understand the strength and support that can build within online communities.

James and I launched a fundraising website a few days ago. We are so deeply touched and overwhelmed by the incredible generosity of friends, family, and anonymous donors. It is impossible to even begin to articulate our gratitude. It is reminiscent of writing James’ donor letter to the family of his organ donor. There were not enough words. There are not enough words.

I was weary of asking for help with the knowledge that so many of us are already struggling with student debt, month-to-month daily living expenses, and so forth. We are so grateful for access to universal health care in Canada. We know that our struggles pale in comparison to a large percentage of the population. We want to be able to give back. We will find a way to give back.

We are also very grateful for support and encouragement during these extended hospital stays that easily lend themselves to disappointment and frustration. James and I feel very displaced in our own lives. We lack a certain sense of control over our lives. There are a lot of uncertainties. We move through our days from one moment to the next with the knowledge that we cannot take our time together for granted. There are days that it is harder to laugh (and easier to cry), but James and I always find comfort and security in each other. We both agree: We would do this over and over (and over) again as long as we had each other to hold. The strength of our relationship continues to build irrespective of the challenges that we face. This is a love that extends well beyond the depths of fear and sadness. We have been through this before. We can do it again.

As for a health status update, James was sleeping when I left the hospital tonight. He was comfortable and calm, but I was reluctant to leave. He had a dystonic reaction to his fourth dose of the anti-lymphocyte globulin (thymoglobulin), but it resolved with a short break from the treatment, followed by a dilution and slowed delivery rate. I left him with food for the evening, and stumbled down the hallway in my own state of exhaustion. It is hard to let go of his hand and return to this empty apartment. I eat dinner in silence, turn on my computer to write, and crawl into bed with the hopes of even a few hours of sleep. Ophelia doesn’t leave my side.

Here we are in the morning (with dark circles to compliment our eyes), cuddling up, and waiting for the doctor:
 

one day to the next

[this was written last night, after arriving home from the hospital, forcing myself to eat dinner, and making an earnest attempt at relaxation].

o, this exhaustion is unbelievable. It is the type of fatigue that is not resolved through sleep, but hopefully, slowly over time, through a conscious effort at self-care, I will be able to move through my days with the ability to complete sentences and step without stumbling.

tomorrow, I will focus on housing. we have made phone call after phone call after phone call. no vacancies and expenses beyond imaginable for individuals with disabilities (and that is not to mention those barriers to employment and income). we found an apartment close to the hospital that is beyond our budget, but reasonable for the downtown core, and will offer a short-term lease. we have been advised to wait on signing a lease, because all potential funding would be dependent on James' listing as a pre-transplant patient, but at the same time, we will not find anything in the downtown cores within our range that is not listed on the bed bug registry as a cockroach hotel. James will need to be officially listed for transplant to receive any financial supports. we are still in a period of complete uncertainties, but this may not be a decision that can we can linger on. we do not want to put it on hold for too long, and end up without any housing upon James' hospital discharge.

although James has not started the assessment process for transplant, we have been told repeatedly that he seems to be a good candidate. the fear is that James may actually not be sick enough to meet the requirements. this is absolutely impossible to comprehend with a lung function of 25%, significant difficulties breathing on exertion, and an almost daily decline in weight. unfortunately, or rather, fortunately, his body is not showing distress in other areas. James has worked incredibly hard in the last 15 months (and longer) to build a strong and healthy body that is now compensating for the rapid decrease in lung function. this may become a barrier to being listed, at least, for now. I'm afraid that we will have to wait for him to deteriorate further.

for now, James is on his third miserable thymoglobulin treatment with improvements in tolerance and more appropriate medications available to treat the side effects of destroying James' delicate immune system. (we requested these in advance of the first treatment, but of course, the order was never made, and James was made to shake and shiver in the middle of the night while waiting for a doctor on-call to order basic pain medication and anti-emetics).

there has been no change in James' lung function for the last week. this is positive in that it is not a decline, and could indicate a level of stability, but at the same time, it doesn't speak to the possible hope of increase from the anti-lymphocyte globulin. but, James has incredible strength, and continues to be willing to make any and all efforts towards possible recovery of lung function. he has the enduring hope of an eternal optimist. to say that his strength is admirable would be a complete understatement.

with shorter days, light is fading earlier, and it is time to focus on rest and restoration. I am going to take pleasure in reading for pleasure. this is not something I was able to do in the last seven years as an undergraduate. good night, and more updates to follow.

love

love. love. love.

another return to blogging

I often return to blogging after months or years of absence with a comment of observation that I only tend to resort to writing as a method of coping when I am struggling - and I am struggling, but not with depression. This is not a depression. This is a profound and overwhelming grief, or rather, anticipatory grief, at the rapid deterioration of my husband's health (and the difficulty of finding hope in a desperate attempt to focus on living). I deeply resonate with Dr. Kay Redfield Jamison's distinction and description of the differences between the experiences of grief and depression in "Nothing Was The Same." I am at a loss of words for this incredible pain, but I know that it is different than the lure of depression.

I also have a need to document these moments. I need to know that this was real. I have a deep fear that I will look back at these few short years, and I will not have memories. I am afraid that these years will be lost in a lifetime. I am afraid that I will lose James (and with him, all the love and joy and happiness that defined our relationship and that I have known). 

My former blogs have been mostly private, but I have decided to import blogs relating to James' journey with Cystic Fibrosis and Transplant (and our journey together in the last few years). We have also launched a fundraising website. The brief details of James' decline and status are written in the "Updates" section. (We have also linked to a facebook page in hopes of taking advantage of the social media network). 

That's all for now. I will make an attempt to write more in the coming days. Here are some photos from the magical night that was our wedding (because we are still glowing from that evening, and it is important to draw on those moments of happiness and joy for strength and hope from within the darkness):

acute rejection

It is early, but I'm awake to stare at this blinding screen, because I didn't sleep well. In other words, I could no longer stare at the ceiling (and prevent my mind was wandering). so, I made a cup of coffee, poured a simple breakfast of cereal and goat's milk, and decided to type a few lines before heading to work. 

(sidebar: I really should write about work more often. I am working with some very interesting children. It can be very challenging, but I am learning a lot from these experiences).

It seems that it is only during difficult times that I find myself with a need to write. My pile of adolescent journals should speak to that (and dark poetry written on scrap paper strewn throughout). 

The truth is that James and I are in pre-marital bliss. We are both glowing with joy at thoughts of sharing our lives together. We talk about the future with optimism and hope. We will be grandparents together. We will hike the West Coast Trail. We try to believe that survival is all about attitude. We tell ourselves that James will be the exception. 

The problem? We are not immune (pun-intended) to the realities of Cystic Fibrosis and post-transplant complications. James has had an exceptional year with (relatively) minor difficulties, and the most incredible gains in all areas of his life. We live our lives with gratitude for each and every day, but that doesn't change our resolve: James will not be a statistic. 

We weren't prepared to hear those words on the answering machine: James has rejection. It is acute rejection. It is only level one. (What does that mean?). It often is not treated, because it resolves on its own.

We don't know a lot more. The rejection showed up at his 1 year post-transplant bronchoscopy. We were not informed. It wasn't a concern. Then, James' spirometer readings started to decline steadily. It started with a 5% drop at his recent pulmonary function test (PFT). This progressed to several mornings with a 10% decrease in lung function. Yesterday, James had a 30% decrease. He went to get batteries in hopes that it was a malfunction of the machine. It wasn't. 

We called the transplant team and waited. I was scared, but I was (and am) trying not to panic. Acute rejection is treatable. It was caught early. Toronto is the best place to be. I am telling myself this over and over again. The doctors do not seem to be concerned. That must be a good sign.

The message systems allows for communication with the transplant team. We leave messages. We receive messages. We don't get to talk. We have to trust the team.

The wait for the phone to ring was reminiscent of James' 9 months with that pre-transplant pager. I remember the anxiety. I remember the uncertainty. Would the call come in time? It didn't matter the length of the wait. It always feels too long. It always feels urgent. The difference? We were waiting for good news. James would be getting his lungs. Now? We are waiting for information and a plan.

We are still waiting. The doctor was unavailable yesterday. James needs to go for more tests, but it is not safe for him to be at the hospital. Fridays are clinic days for individuals with burkholderia cepacia. It is a scary bug. It is highly communicable. It can have devastating (and often life-threatening) consequences. 

We might need to wait for Monday. We are good at waiting. James waited 10 months to qualify for transplant. We waited 9 months together with a pager on his belt. We were done waiting post-transplant. James was ready to live. We were ready to live together.

We know that we can get through anything together. Our first year together was a testament to that fact. We will do our best to enjoy the weekend, and stay distracted. We are so grateful to be able to participate in CF Canada's Great Strides on Sunday. We both met our fundraising goals. It will be great to give back to the community.

That is all for now. I have to go to work, find distraction, and focus on the positive.

a transplant journey in parts

almost a year ago, I started to write a journal entry about James' transplant journey. I worked on it for several weeks, but I never completed it. we will soon celebrate James' 1 year post-transplant lung-aversary. it is an incredible milestone. I would love to be able to finish his story, or at least, the story from the point at which I met James, and it become our story. here are the bits and pieces from many (many) months ago:

"it has been a while since the last update. time seems to disappear (and is easily replaced with the stress of every day life)."

"and so, where to begin? as always, there are no words, and I've never been very articulate (or, rather, I never feel very articulate). this entry has come together in pieces over the last few days, as I have been sitting by James' hospital bedside, watching him sleep, in complete awe of his strength and courage, and the wonders of medical science. it has only been a few days since his double-lung transplant, but, with much determination, he has been up and walking around (without oxygen) . . . ! he is still sleeping most of the day, but with each smile, and kiss, and, hours of hand-holding, I am beyond confident that he will continue to recover."

"I find myself in tears at random moments during the day. our wonderful dreams for a future together have suddenly become a real possibility."

"I think that the best way to describe this experience is as an 'emotional rollercoaster' of ongoing intensity. there is the guilt of leaving him at night, and the helplessness in his moments of pain an discomfort. there are the small complications that can manage to feel life-threatening. but, mostly, there is absolute joy and pride in each accomplishment and improvement."

 
"once again, I continue to write (with the eventual intention of posting online), and it is nearly impossible to find the words to even begin to describe this experience. it has now been nine days since James' surgery."

"I have made many attempts over the last few weeks to write this journal entry, but, yet, it remains seemingly possible to find the words to describe this experience. I thought I would start from the beginning, or well, the beginning for myself:

James and I met through an online dating site in June 2010. the connection between was us almost immediate. we blew bubbles on the grass outside of a cindi lauper concert. we read poetry out loud to one another under a tree in the park. we spent hours and hours (and hours) at used bookstores across the city. 

James had been in Toronto since November 2009 in hopes of qualifying for a double-lung transplant. I understand that those early months were a constant struggle, with several hospitalizations, and a lot of uncertainty about the future. I imagine it would have been difficult to continue to find hope.  

we were both attempting to live our lives one day at a time, and with gratitude for each and every moment together, we made a conscious effort not to take anything for granted, and truly appreciate the time we had together. we were living in the moment, for the moment, from one moment to the next. there was no certainty about the future.

James was eventually listed for transplant at the end of August 2010. His call came almost 9 months later on May 12, 2011."

it is extraordinarily difficult to look back at the photos from James' transplant. at the time, I don't think I really allowed myself to see the extent of his illness. I suppose it is all about survival.