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.