Monday, October 29, 2012

two months in Toronto

It is hard to believe that James and I have been back in Toronto for almost two months. 

We want to be honest about the realities of our situation. We are still sorting through a lot of emotions about being listed for re-transplant. There are a lot of thoughts and feelings to process. The hope of re-transplant does not negate the fear and sadness, but James and I always seek to focus on the positive. We truly experience a deep sense of gratitude for one another. We hold onto every single moment of laughter and joy. We are very fortunate to have opportunity and access to advanced medical care. There may not be guarantees (and everything can change in an instant), but James and I can find hope in the possibilities of re-transplant.

James is back at the gym three times a week. The exhaustion and fatigue persists, but James perseveres through the aches and pains. He is looking forward to building back some strength and endurance. These benefits will be exceptionally important during James' post-transplant recovery period.

We have been spending a lot of time together. We don't focus on the disease. We reminisce about the last few years together. We laugh a lot. We even try to sing and dance. This also tends to result in laughter. It is not difficult to succumb to laughter. That is the power of our love. We have a deep and strong connection. It withstands the pain and grows through the struggle. It might be that newlywed glow, but I don't imagine that it will change any time soon. We try to imagine a different future for ourselves. It is a future that includes everything from the hours that follow, to the coming weeks in Toronto, and settling back into our little nest in Victoria. 

We find comfort and security in the presence of one another. We clasp our hands and touch our feet together at night. There is reassurance. We will wake again and share another day together. We have a lot to be grateful for.

Friday, October 26, 2012

on the transplant list

James is officially on the transplant waiting list. Can you see the glow?

Thursday, October 25, 2012

sleep (and waiting on news)

James is napping peacefully beside me. He closed his eyes more than five hours ago, but I know that he will certainly sleep still throughout the night (and struggle to wake in the morning). Our time feels too precious to sleep all day, but I know that James needs to listen to his body. Of course, I also need to translate this into remembering the importance of my own self-care.

This is a level of exhaustion that is impossible to describe. It is more than a physical fatigue. My body feels heavy with overwhelming emotions. There are times that the weight is replaced by numbness, and I get a reprieve from the intensity of these emotions. My eyes fight to remain open during the long days. I often nap with James during the afternoons, but I'm awake throughout the night. James' breathing is shallow and almost silent. I have moments of panic, and wake to reach over and feel his cheek or chest. His sleep is deep enough to forget these wakings by morning. In the morning, James and I curl into each other to steal a few more moments before starting another day of uncertainties.

We did not hear back from the Transplant Team, but I suspect James will receive a phone call tomorrow. Once a decision has been made regarding James' qualification for re-transplant, James will have another series of pre-transplant appointments. We will be assigned a pager (and celebrate "beeper" day). James will continue with physiotherapy at the Transplant Gym at least three times a week to build strength and muscle to support his post-transplant recovery period. The waiting will come with its own challenges, but I know that James and I will be able to wade through these waters together. We waited 19 months for his first set of healthy lungs. We can do it again. 

Tuesday, October 23, 2012

James' fancy new wheels:

and photos from a few weeks ago 
(James is always willing to humor me with a smile. On the other hand, Ophelia is most often less than impressed):

Sunday, October 21, 2012

at a loss for words

We are at a lost for words. We want to be able to share positive news. We want to be able to build on all the hope and optimism that has defined our relationship. We want to believe that James has many (many) more months, but in truth, James and I are not confident that he has more than weeks. We are no longer positive that James will qualify for re-transplant, or that he will be able to survive long enough for a donor to be found. We recognize the gravity of the situation. The risks may outweigh the benefits. It makes it harder and harder to maintain hope. We almost feel as though we are lying to ourselves. We can only pretend for so long without it becoming a form of denial. We have to be honest with ourselves, and of course, with our loved ones. 

James is not stable at less than 15% lung function. We believe that he is about 12% at 0.54 litres (FEV1). He is losing more and more lung function almost every other day. He sleeps most of the day, and has almost no appetite. He has to force himself to eat throughout the day with small bites and sips of fluids. The definition of exertion for James has come to include everything from talking to bending down. It is painful to watch Jamie struggle to breathe. 

There is a lot of grief and sadness. We both feel an overwhelming fear about the future. We try not to focus on it. We need to focus on living. We need to focus on everything that is within our control. We tell ourselves this over and over again. We try to stay within arm's reach of one another. We talk about everything and anything. We try to laugh and reminisce. We seek out friends and family to help us re-generate from the exhaustion. 

Our loved ones help to lift our spirits and find a sense of hope in all this darkness, but James and I are still at a loss for words. We want to be able to talk to each and everyone of you. We want to express love and gratitude. James wants to be able to say good-bye. This exceptionally hard. It means admitted out loud the realities of our situation. 

All that being said, it does not mean that James and I are giving up. James has all the courage and strength in the world. Everything may change in an instant, but I don't believe that James' drive to live will ever change. James has a love of life that pushes him to fight to be part of this world for as long as possible, and to have the best quality of life that his body will allow. Our lives are a reminder to those around us: There is nothing more than the moment. We can't take a single of those moments for granted. 

We love you all. As always, love, love, and more love.

Saturday, October 20, 2012

Jamie is still declining in lung function on an almost daily basis. He sleeps a lot and is finding it harder to eat. We are surrounding ourselves with loved ones, and filling our days with laughter and joy. We take strength from those around us, and find comfort in the presence of one another. 

We will be in touch with the Transplant Team on Monday. We will also know by the end of the week whether Jamie is going to be listed for re-transplant. I am also hoping for a sense of James' prognosis, but I know that bronchiolitis obliterans is exceptionally variable and unpredictable for each individual. 

We continue to live from one moment to the next. We don't take a minute together for granted. I am filled with a lot of gratitude for James. He has changed my life in ways that I never imagined possible. We are not done fighting for each other.

Thursday, October 18, 2012

short update before bed

We have good news and difficult news. The hard news is that James' FEV1 is down to 0.66 litres, or about 15% lung function. That being said, James and I are determined to keep fighting. The good news is that James' re-transplant assessment discussion has been moved forward to next Thursday (rather than in two to three weeks). This is because of his rapid decline and deterioration of quality of life. We are relieved that James' case is being made a priority for the Transplant Team. We are hopeful that James will qualify for re-transplant. The next phase would be waiting for an appropriate donor and a return to physiotherapy at the Transplant Gym. There is nothing that James and I can't do together. We just need to take it one day at a time.

James and I will be able to get a walker from a local charity-based organization on Monday. James will be able to use a walker on loan from Toronto General Hospital Transplant Gym for the weekend. We have also been able to locate a wheelchair with the help and generosity of a wonderful friend. An appointment has been booked to start the application process and interview for Wheel Trans. Wheel Trans is an accessible and direct local transportation system for individuals requiring mobility assistance. Unfortunately, Toronto does not have a very accessible public transportation system. Wheel Trans would allow James and I to travel throughout Toronto without the barriers of inaccessible streetcars and subway stations.

That's all for now. I'm heading to sleep. I will sleep well with gratitude for all of you. Thank you.

love. love. love.

Wednesday, October 17, 2012

assessment day three

We are done. We got through the last part. It was definitely the easiest of the pre-transplant assessment days (even with compounding of exhaustion from the previous days). We didn't have a lot of waiting between appointments. We returned home with time for me to go grocery shopping and pick up more household items. James is resting in bed. He perfectly content with a warm cup of tea (mostly cream and sugar with a small amount of tea), and video games on his computer.

James' recent decline has now made basic tasks impossible. He can no longer walk without physical support. The five minute walk to the hospital was extended to more than twenty minutes, with long breaks, and a significant struggle for breath. James can only walk five or ten steps without taking a break from feelings of breathlessness. He describes a pounding in his chest. It is hard to stand for any length of time. All movement is difficult, including showering, dressing, and household chores. There are many times throughout the day that James tell me, "I can't breathe," and all I can do is hold him close. We wait for his breathing and heart rate to settle to a comfortable rate. We try again together. I sense that James is becoming less confident in his own mobility. That concern then contributes to his feelings of breathlessness, and becomes a limitation in itself. James' quality of life is diminishing at a rate that doesn't allow a lot of time to process the changes. It has all been so rapid.

We borrowed a walker from the Transplant Gym for the walk home (and for the next few weeks). We will need to purchase some form of mobility assistance device. A simple transport wheelchair with be the least expensive of options. This was the recommendation from a financial standpoint, but James would prefer a walker. This would keep James relatively active (within limits, of course). We were aware of the possibility of this progression, but that doesn't make it any easier to come to terms with it all.

assessment day two

We made it through the second day of assessment with a lot of tears. These appointments were mostly interviews and information-sharing about the realities of re-transplant. Re-transplants are rare for a number of reasons. The risks often outweigh the benefits for a large percentage of possible candidates. The statistics and survival rates are less than reassuring (and that is a significant understatement). There are always exceptions. James and I need to believe that he will be one of those exceptions. It is the only way to cope and get through the days.

It will be at least two to three weeks before a decision is made about James' acceptance or rejection for re-transplant. The third possible outcome is that James may qualify for a second double lung transplant, but it may be deemed too early for re-transplant. It is a team decision, but James and I have been told consistently in the last few weeks that he is a good candidate for re-transplant. The hope is that he will qualify for transplant, and be able to survive long enough for an appropriate match to be found. The highest and most acute risks will be during the surgery and in the immediate post-transplant recovery period. We can expect a lot more complications and a longer hospital admission. 

All that being said, James and I have no reason to believe that he won't make it. (We truly can't let ourselves think otherwise). He has enough strength for both of us, along with a positive attitude and a hopeful resolve. We will get through the decision-making process, wait as long as necessary for an appropriate match to be found, and James will survive a successful second double-lung transplant. We will be given the incredible gift of more time together. The limitations on that time may weigh heavily on my mind (and in my heart), but I am grateful for each day I still get to hold his hand and hear his voice. James is here right now. We need that to be our focus.

Please register to be an organ donor. There is a significant lack of available organs in Canada. A very small percentage of individuals die in a way that will allow for organ donation. I believe it is less than 1% of potential organ donors are eligible for organ donation at the time of death. Of that small percentage, every single organ donor can save up to 8 lives. Organ donors can also improve the lives of up to a seventy-five more individuals through bone, muscle and tissue donation. The first step is to talk to your family and friends. Open the dialogue. Registration is easy at (Ontario) and (British Columbia).

According to The Gift of 8 Movement, Toronto's registration rate is 13%. Thornhill and Vaughan are also lacking at 9%. There is also some great information available on the Trillium Gift of Life Network and the RecycleMe.Org.

Monday, October 15, 2012

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:

recycle your organs

Join the challenge. You don't need a fake organ to help spread the awareness. All you need is yourself, a camera, and a recycling bin. Upload to the comments or on James' Quest for Lungs on Facebook. You can also e-mail it to James or Adena. We'll do the rest.

Sunday, October 14, 2012

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.

Saturday, October 13, 2012

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.

Thursday, October 11, 2012

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.

Wednesday, October 10, 2012

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.

Saturday, October 6, 2012

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

Friday, October 5, 2012


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:

Monday, October 1, 2012

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.