hospital update

James has a bowel obstruction. This is very common for individuals with Cystic Fibrosis. He has been having gastrointestinal symptoms (to a lesser degree) for a few weeks, but James and I didn't consider a blockage. This was often thought to be the cause of James' pre-transplant nausea and vomiting episodes, but it was never determined to be a definite cause. The transplant team attributed his symptoms to his immunosuppressants. They had  made recommendations for a medication change to a coated version of one of his immunosuppressants, and a follow up with the St. Michael's Cystic Fibrosis Gastrointestinal Clinic. We have been the in the process of seeking coverage for the medication change, and making those appointments.

James had a really good day yesterday. He was able to eat small amounts throughout the day, and visit with a really good friend. She brightened both of our days, and was exceptionally helpful with setting up the new apartment. James and I feel very grateful for her friendship. She affirmed and validated a lot of my feelings. She reminded me that there is no shame in feelings of helplessness and hopelessness. It is hard to navigate the system as James' sole support and advocate, and I often feel alone in the process. There is comfort and security in knowing that I am never alone despite those late night feelings of loneliness. I am getting better at asking for help, and allowing others to help. Our time together was a reminder that James and I surrounded by a generous support system of loving and caring friends and family members. We are very fortunate.

James was feeling very optimistic about being discharged today. We ate breakfast together this morning, and James was feeling strong enough to shower, dress, and go downstairs for a coffee. Unfortunately, James' symptoms returned shortly after lunch. He was given some Gravol, and is closing his eyes in hopes of sleep. We are still waiting to see the doctor, but James no longer feels confident that he is ready to go home. 

We hope that James will still be able to start his pre-transplant assessment as an inpatient. We are scheduled for full days of tests and appointments on Monday, Tuesday, and Wednesday. We do not want to prolong the process, and of course, James and I are both anxious to be officially listed for transplant. His lung function is relatively steady, but it is not certain that it is stable. We will have to wait a few more days to differentiate between normal variation and a continued pattern of decline. We hope for the latter and focus on everything that is within our control. James and I always manage to enjoy being together. We find laughter and joy in the worst of circumstances. It is not difficult to give each other reasons to keep smiling. We are constantly reminding each other of the strength that comes from our ever-enduring love. (I woke this morning to a loving e-mail from James in gratitude for our relationship). There is nothing that James and I can't do together.

old newspaper article

James and I unearthed a scanned copy of a newspaper article from September 2010. He had been in Toronto since November 2009, and was finally listed for transplant on August 31, 2010. This article was published in a local newspaper in the following days. (We returned to Toronto to seek a second double lung transplant exactly two years later on August 31, 2012). I will have to add it to the collection of articles on the right sidebar:

 

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.

back at the gym

We are back at the transplant gym at least one day each week for some additional support with exercise. We are relieved that James' oxygen saturation levels have not declined with his recent decrease in lung function (and despite an increase in James' sense of breathlessness). He was able to complete the majority of his exercise routine (with a reduction in intensity). We are both exhausted. James also feels very weak. Naps have become standard in the afternoon, but the fatigue remains. For myself, I believe it is the emotional stress. On the other hand, James is coping with both the physical and emotional stress. We came across the following image and found ourselves in laughter:

 

It definitely resonates with his current state. It is clear that his body is working hard, and of course, James is always pushing himself in all respects. He has this incredible strength to fight for the best possible quality of life. I wish I could emulate his seemingly eternal optimism. In the least, I wish I could have a similar level of acceptance for the uncertainties and lack of predictability our every day lives.

That's all for now. It is time for that afternoon nap. It is at least one consistent aspect of our lives.

amy and jon

The Grid has very generously posted an update online to help raise awareness about the importance of organ donation, and to help James and I with our fundraiser to finance living expenses in Toronto. We are very grateful. The update reads as follows:

"My name is Adena, and I married James, the love of my life, on July 2, 2012. We were delighted to share the story of our first date in Dating Diaries with the psuedonyms ‘Jon’ and ‘Amy.’ James’ lung function started to decline rapidly the day after our wedding. He was diagnosed with bronchiolitis obliterans, a form of chronic rejection. He is down to 20 per cent lung function and struggling to breathe again. We had to leave our home in Victoria and return to Toronto to wait for a second double-lung transplant. We are leaning on each other for strength and love during this difficult time. We are seeking help to raise awareness about organ donation and to finance our living expenses in Toronto. More information can also be found on our blog and Facebook page."

James and I received our extensive list of pre-transplant assessment tests and appointments for next week. We will essentially be at the hospital all day on Monday, Tuesday, and Wednesday. We are relieved to be moving forward on getting James listed for a second double-lung transplant. We had our first appointment today. We left feeling very positive about the prospect of being put on the waiting list. James is an excellent candidate for transplant.

That being said, the last few days have been exceptionally difficult. James' lung function has continued to decline. It has been decreasing steadily on a daily basis since Friday. He is down to 0.83 litres (or about 20%). We are very scared. James feels constant exhaustion and fatigue. He sleeps a large portion of the day. He continues to struggle for breath on exertion. It is also becoming harder to recover from these episodes of breathlessness without feeling completely depleted (and defeated). James is doing exceptionally well with exercise and weight gain despite these difficulties. We will be purchasing a finger oximeter to measure his oxygen saturation and monitor his levels. It is difficult to accept that there are no treatment options left or available.

We are holding out for hope that James will receive donor lungs. The average wait in Toronto is 6 months, but there is a lot of variability in that statistic. We are focusing on everything that is within our control. We take it one day at a time. James and I are thriving in our relationship. We are only growing stronger and strong together. We are grateful for the importance of perspective. We truly have lives that are filled with fun and laughter. We sing together. We dance together. We find joy in shared moments of wonder and beauty in this world. We are glowing in the love of being together. 

We want to thank all our friends and family. We are surrounded by love and support. We have raised more than 50% of our fundraising goal. This will amount to almost 6 months rent in downtown Toronto. We are overwhelmed with generosity in all forms.

We are sending you all love, love, and more love.

recycle your organs

the "recycle your organs" challenge continues:

recycle your organs

so, it is your turn to help spread awareness of the importance of organ donation. we challenge you to take photos of yourselves with recycling bins and the caption "recycle your organs." e-mail them to James and we will post the photos. (we are also happy to pass along the fake heart to locals). or, go ahead and post them in the comments.

 

a day at high park zoo

gratitude

James is snoring away the afternoon (and early evening), and I'm left to consider the importance of gratitude. James and I make a conscious effort to practice gratitude in our daily lives. We write in a gratitude journal on a regular basis. We also share our gratitude with each other before closing our eyes at night. We mention beauty in nature, and wonder takes over for the night. We note privilege, and dive into political conversations. We appreciate literature and a love for poetry and language, and a dreamer emerges from within each of us. 

Gratitude seems to serve an essential purpose: It acts to ground us in the present moment. It becomes a defense against the negative. It reminds of all that there is to love about being in this world. It builds strength and resilience (in the face of chaos, and everything beyond our control). Gratitude allows for connection to everything essential in our lives (and in this world). It helps give voice to all our reasons to keep fighting to be here, for ourselves, and for each other. With that, I am grateful:

I am grateful for James (and the ability to love and be loved).
I am grateful for access to the basic necessities of life.
I am grateful for access to live-saving and life-enhancing medical care.
I am grateful for the opportunity to pursue post-secondary education.
I am grateful for poetry (and the beauty of words).
I am grateful for the changing of seasons (and the vibrant reds, oranges, and yellows in our window view)
I am grateful for laughter.
I am grateful for hope and optimism.
I am grateful for friends and family (and support and care in both the best and worst of times).
I am grateful for pumpkin pie and apple cider.
I am grateful for hand-knit gloves (and small labours of love).
I am grateful for warm blankets (and the comforts of home).
I am grateful for Ophelia (and feline cuddles at all hours of the night).

and of course, I am grateful for our feline friends left home in B.C:

pre-transplant assessment

James' case was discussed on Thursday for pre-transplant evaluation. He will start the assessment process during the week of October 15, 2012. This clinic is booked solid, but James and I will make ourselves available for all appointments, including last-minute cancellations. This does not guarantee that James will be listed for transplant, but it is a positive step forward. He remains a good candidate for transplant, but it is possible that James is stable enough to remain "inactive" on the list. That is, James would go through the process of assessment and evaluation, but he would not be actively waiting on the transplant list. This would ensure that all the necessary tests and information are in place for the point at which James' lung function declines further (or the risk of decline is deemed serious enough to require an active position on the transplant list).

We are both feeling a range of emotions. There is relief in knowing that James will be evaluated for transplant, but there is also a lot of sadness and fear that is compounded by the emotions of his first double-lung transplant. It is a lot to process, but James and I are ready to do this together. We just need to keep focused on living:

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.