Well, it looks as though the transplant team may be making a liar out of me. The transplant team is advocating for James' discharge, because of the risks of remaining in hospital, including hospital-acquired pneumonia or other pathogens that roam these halls. The TPN team is responsible for the suggestion that James will remain in hospital for a few more weeks, but it seems as though there has not been communication between the two teams (in regard to James' discharge plan, that is). Wouldn't that be nice? It comes down to a risk versus benefits argument for keeping James in hospital. Do the benefits of remaining in the hospital for weight gain outweigh the risks that are associated with hospitalization and immunosuppression? It is a difficult question to answer, because James' nutritional status is an essential component of transplantation. The ideal solution would be discharge with an order for TPN at home. This remains unattainable without provincial coverage from British Columbia for extended care in the home environment. We cycle back to the beginning of the conversation. A decision will have to be made at some point. 

For now, James has rather limited mobility in the hospital, with an IV pole always by his side, and the dangers of leaving his room and contracting an infection. He sleeps a lot, and forces himself to eat between naps. I am concerned that James may become increasingly weak with muscle loss from remaining in bed all day. He has been going to the Transplant Gym three times a week, but that has its own limitations (and frustrations), because of James' muscle fatigue and his budding relationship with an IV pole. He still has that incredible determination to push himself through the essential parts of the exercise routine, but it may not be enough. The possibility of pulmonary rehabilitation was mentioned among the doctors today, but that too, has its own complications as an out-of-province patient. 

I've hit the late afternoon wall, and I am too exhausted to even complete sentences in my head. In short, James and I are coping as well as can be expected, and moving forward in most respects (or at least, in the areas of most importance). That's all for now. 

 love. love. love.

gratitude and acceptance (and hospital update, take three)

James is ever so patiently tolerating the hospital experience. The long nights in hospital can lend themselves to some negative thoughts and feelings, but James is always sunshine in the morning. We both tend to leave our fears to late at night. It seems that loneliness begs the attention of our deepest emotions and allows sadness to make an appearance. We can spare a few tears here and there, but James and I take these moments as reminders to spend the days in fun and laughter. 

I am learning a lot about acceptance. It allows me to move forward with a lot more confidence in the present and for the future. It is almost a form of faith. We do not allow our fears to control our decisions. We move forward together with a focus on everything that is within our control. We are doing everything right, both for ourselves, and for each other; by ourselves and together. 

I write a lot about gratitude. We find gratitude for the perspective of our circumstance, rather than for the limitations of our circumstance. We do not take for granted our time together. We can be honest with ourselves about the realities of transplant, and still close our eyes at night without regrets. We find value in the important aspects of our lives. I fall more and more in love with James each and every day. He wrote me a card with a similar profession. There is something special here to protect. 

As for a health update, James started total parenteral nutrition (TPN) last night for supplemental nutrition through his portacath. There is a relief in knowing that James' nutritional needs are being met. This is currently a short-term solution for during hospitalizations. James may not be able to obtain coverage for extended care at home, because of the cross-province health care agreement that only allows for out of province acute care, rather than in home care (or chronic care). This is frustrating for a number of different reasons, but for the most part, I feel it is essential to optimize James' health status (including nutrition status) for transplant. This should be a shared goal with the Transplant Team, but of course, I also understand that there are limited available health resources (and it is certainly not ideal for James to remain in hospital). The fact that these are unprecedented circumstances doesn't negate the need to address the issues. We will work with the social workers on finding a solution prior to discharge. I will never be done advocating for James. 

James also went to the Transplant Gym for physiotherapy in the afternoon (and showed off his fancy shmancy IV pole). He completely amazes me with his ability to push through the discomforts of being in hospital, and continue towards the goal of transplant. He did a series of stretches and strength exercises, along with ten minutes of cardiovascular exercise on a stationary bicycle. He was exhausted (and nursing a headache), but still managed to get through the basic workout. That's some serious determination. Let's also take into consideration the fact that James has been in a hospital bed since Christmas. I'm insanely proud of him. Can you tell?

hospital update, again.

This would be the second post of the day. The first post was actually a scheduled post to acknowledge our six months anniversary, because it is important to celebrate the months these days. It may seem unnecessary (and silly, to some extent), but I am reminded of being post-transplant. At first, James counted the days. This slowly became weeks and months, and eventually, a year. o, how wonderful is was to be 1 year post-transplant. As James' health started to decline again, James and I returned to counting months and weeks post-transplant. This was not a conscious decision. We find reasons to celebrate, because James and I need these small victories to note the passage of time. Our world moves at a slow pace. Our lives are on hold. It is not easy to wait for transplant. These celebrations remind us to focus on living (rather than the alternative). We continue to move forward. It is essential to our survival. 

James seems to be genuinely recovering from this nausea and vomiting episode. We requested a combination of dextrose and saline to give James some energy (instead of the normal saline that has been hydrating him for the last few days). It seems to have made a difference. James has been able to keep down clear liquids and is ready to try solids for dinner tonight. 

A referral for total parenteral nutrition is also in the works, because James' weight loss is substantial enough to be a cause for concern. This is a frustrating and painful decision, because James works really hard to maintain his weight with 3000 to 3500 calories a day (and that is without supplemental nutritional shakes or beverages). In the first year post-transplant, James gained from 88lbs to 133lbs. It hurts to watch that weight disappear, but it can take up to a week (or longer) for James' eating to normalize post-hospitalizations, and with inpatient stays almost every two to three weeks, James is at risk of becoming malnourished. He is already clinically underweight and it really has become nearly impossible for him to recover lost weight from frequent hospitalizations. This is not for lack of effort. His body expends a lot of energy simply to breathe, and digestion requires even more energy to gain any benefit at all from his diet. We will do everything that we need for him to be as healthy as possible for transplant and post-transplant recovery. 

hospital update

Holidays are slow at the hospital. All expectations for tests, appointments, and referrals are on hold for a few more days, and with that, James may be in the hospital for a few more days. He is recovering at his own pace, starting to take in fluids and solids, but not enough to be granted a discharge pass. We will need need a nutrition plan in place to get James back on track with packing in the calories, and for supplemental nutrition during these frequent hospitalizations. James works really hard to maintain his weight at home, but it is becoming increasingly difficult with these nausea and vomiting episodes. Nonetheless, I don't think he will be able to escape the Transplant Gym tomorrow, inpatient or not. Exercise is all too important (and a natural appetite stimulant). We are also waiting on another home oxygen assessment, because James' blood oxygen saturation continues to decrease on exertion. All that being said, James is in good spirits, and the trend is definitely towards recovery and improvement. We don't feel a lot of worry or concern, because our focus is on getting through the days with as much positive energy as possible. We are fortunate to be surrounded by a wonderful transplant community, or rather, a transplant family. There is a lot of love and warmth all around us (and that is an understatement).

Last night, James and I both curled up in James' hospital bed, fell asleep holding hands, and discretely broke the "no overnight" rule (with the indirect permission of the nurse that closed the lights and curtains, and wished us a "good night"). Neither of us manage a lot of sleep during these hospitalizations. We were in agreement that we would rather be awake and together than wide-eyed and longing for each other. We both had a better night with the company of one another. It is clear that the nearness of loved ones are an essential part of healing (for both of us, that is). 

I came home for a few hours in the morning to find Ophelia in distress at my overnight absence. She was meowing and meowing (and meowing) while climbing all over me and licking my face. She proceeded to protest my overnight with James by following me from room to room and repeating this demand for affection and attention. She is now curled up by my side, asleep and content, with a false reassurance that I am staying home. I will be returning to the hospital in twenty minutes or so, but I cannot imagine spending another night. Ophelia has been very adaptable to all these transitions and changes, but it feels cruel to leave her alone for more than a single night. James and I are both so grateful to have a feline friend with us in Toronto. We could not have left her behind. With that, James went to bed last night wishing for his Bombay; a cat that would happily sleep under the covers in James' hospital room for days at a time.

Edit: I spoke too soon, or rather, I wrote too soon. In the short hour that I was gone from the hospital, James started to feel sick again. I returned to find him hugging a basin. I will write more soon, but for now, James needs a hand on his back.

week of clinics (and back in hospital)

I wrote the following post last night with the intention of a positive conclusion to the week, but I will have to include a retraction of sorts. I have written extensively about the recognition that everything can change in an instant, and of course, it does. James was admitted to Toronto General early in the morning following a long and sleepless night together. I will update more about the admission in the days to come. Nonetheless, it is important to acknowledge the optimism and accomplishments of the previous days: 

It has been a week of clinic appointments. This translates into long days of waiting, waiting, and more waiting (and a couple of tests and appointments in between). We feel fortunate to have be seen within three to four hours of our scheduled appointments. We have come to expect these extended delays (without acknowledgments of the waits or apologies from the team). We have left the building in the past through dark and empty halls. We are always grateful to head home before the receptionists have locked the doors and closed the lights for the evening. 

We were scheduled to be at St. Michael's on Tuesday and Friday, and at Toronto General on Wednesday. James was also to be at Toronto General for others tests and physiotherapy (Transplant Gym) on Wednesday, Thursday, and Friday. It would be an understatement to suggest that our lives have revolved around the hospital this last week. 

Nevertheless, James continues to be stable (in the relative sense of the term). We are relieved that James has no signs of infection. (His chest x-ray remains clear. He has no fever or sputum). On the other hand, James' white cell counts have been low for a couple months. Several of his medications are being held in hopes of recovering these levels. He will also be given Neupogen shots for the next couple of days to help regenerate some of his immune function. These have resulted in excruciating muscle pain, but James always knows to manage his pain before it is beyond his control. 

On a more positive note, James, in his incredible determination, has been able to gain back a couple pounds of all the weight lost from his recent gastrointesinal episodes. He is eating a near three thousand calories every day, and truly pushing himself, despite a lack of appetite and low energy. We are both feeling very proud of his weight gain. We hope this upward trend will continue.

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.