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.

updates from the never-ending hospital stay

Today, James was the centre of attention to an audience of ten doctors. He certainly makes for an interesting case study in both Cystic Fibrosis and lung transplant. We learned that James may be in the hospital for a few more weeks. He is still holding out for hope that it could be only a week (or less, of course). The goal is to determine James' energy needs for weight gain through TPN. It could take a few weeks to slowly continue to increase the calories to that level and to transition from 24 hour feeds to 12 hour (overnight) feeds. There is some disappointment at the thought of remaining in hospital even a minute longer, but James is prepared to do everything necessary to optimize his health for transplant. This may also allow time for the hospital to contact the Ministry of Health in British Columbia to request funding for TPN at home. 

For now, James' lung health appears to be relatively stable and holding steady at 12%. He is maintaining his weight in the same range with some normal variation in both directions. He had a rough morning with the return of a short-lived bout of nausea and vomiting, but James has gotten comfortable hugging a basin with the knowledge that the discomfort is a temporary condition. Once the medications start to work, he is ready for his routine tea-sipping and cookies.

I packed up my bedside cot at the realization that it is not feasible for me to sleep at the hospital with James for weeks. We will both have to learn to sleep in the absence of one another. I know Ophelia will definitely not protest either the return of my company or the spare room in bed. She loves to sleep on a pillow by my head (and wake me in the night with kisses and kneading). 

I am feeling very grateful for my extended transplant "family" here at the hospital. I've always considered myself to be rather shy, and socially awkward, to some extent, but I have been embraced by a wonderful group of caring individuals. There is an immediate connection with a sense of reciprocal understanding that can only arise from shared circumstance and firsthand experiences. We come from a range of different backgrounds, but that doesn't seem to prevent the building of bonds. There is no reason to ever feel alone; spare those late night encounters with an irrational loneliness, that is. 

We are coping exactly as would be expected given the circumstances. (That is my standard response these days). Our exhaustion remains. There are days that perpetual fatigue can weigh heavily on our moods, but James and I rarely remain low for any length of time. We seem to balance each other out, and lift each other up during moments of need. There has always been a lot more laughter than tears between us. That being said, I think that teary nights allow for the intimacy of shared emotions. The hard moments serve as a reminder of our love and gratitude for an ever-present shoulder to cry on. Those difficult nights reinforce our promise to always be there for each other. We get each other through it all. We will continue to get each other through it all.

hospital and waiting for transplant

James is still in the hospital, but he looks a lot better, doesn't he? He feels ready for discharge (and has had his mind set on discharge since early this week), but it seems as though a few more nights won't make a significant difference after such an extended admission. I also scored myself a hospital grade cot to keep him company at night. We both felt a sense of calm waking up next to each other this morning. Nearness brings comfort and security.

We keep ourselves busy on the computer, linking between articles and forums, watching ridiculous videos, and more serious online documentaries. We draw together (on occasion) and read out loud to each other before bed. We listen to our favourite podcasts and allow ourselves to drift into a restless sleep (preparing ourselves for the next interruption).  

It is hard to believe that we have only been on the transplant list for two months (and in Toronto for four months). The wait seems unbearably long, and to some extent, a lot longer than during James' first transplant process. Perhaps, it is the on-going need to re-frame our thoughts and feelings with the constant changes in James' health status. James is a lot more fragile. We also no longer have an illusion of transplant as a cure. We recognize on a very deep level that transplant is the exchange of one set of problems with another. We are prepared to go through the process again, and it is worth every day that James is still alive and breathing. We simultaneously work towards a future together and focus on making it through each and every day with as much optimism as possible. Some days are a lot harder than others, but James and I share a determination to get through this together. We long for that post-transplant glow; it is that feeling that anything in the world is possible. We hold out for hope that we will be on the other side again.

James here

Adena: Let's blog together.

James: I guess.

Adena: Where should we start? How are you feeling?

J: I'm feeling like I have been in here forever. I'm ready to go home and sleep in my own bed. I also miss the cat. I'm sick of having IVs and being attached to a machine. I just want to go home and rest. Hospital is somehow not restful.

A: Hospitals are definitely not conducive with the aspects of healing that require rest. The speakers come on in every room at least every hour, nurses shine flashlights in your face on a regular basis, and the early hours of the morning are, according to James, torture. This is apparently the ideal time for lab work, vital signs, and general poking and prodding.

J: I'm just a lump here. I am in a zombie-like mental state. I just want to go home and start over.

A: There appears to be a theme. We are really hoping that James will be discharged in the next day or so. His nausea and vomiting have settled for now, but there seems to be a delay, because of the need to secure funding for James' TPN, or in the least, formulate a nutrition plan for the short-term. This is the part of the blog that I return to James and he reiterates his desire to be back home.

J: That's about it.

A: Did I mention that the apartment is freezing cold? Our thermostat is broken. Several units in the building are without heat. We were given small space heaters, but the fuse keeps blowing with use. Instead, Ophelia and I burrow together under layers of blankets, and wish for another warm body in bed with us. (Cue James and "I want to go home").

J: I want to go home.       

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. 

six months anniversary!

I am forever grateful that I was able to marry the love of my life. It has been a difficult few months, but in many ways, it has also been the best months of my life, because I have James to hold my hand. I am grateful for every single day that James and I are able to open our eyes in the morning, and find each other by our sides. I am grateful for every shared moment of laughter and tears. I am grateful for each and every breath that allows for more of these moments together. I am grateful for the depth of my emotions, and the comforts and securities of this o so special love. I am grateful for James.

It is important to find reasons to celebrate (and with James, it is not hard to find those reasons):

 

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.

holidays in the hospital

As many of you know from "James' Quest For Lungs" on Facebook, James spent a large portion of the holidays in the hospital. James' resilience remains as remarkable as always, along with a positive attitude to compliment his enduring (and seemingly infinite) optimism. He is always moving forward with complete acceptance of the recent past and readiness for the distant future. He finds the light in the hardest of moments and warms my heart with these sweet reminders. 

James and I spent a wonderful Christmas Eve with my father's family that was reminiscent of James' childhood memories. He relished in the joy of being surrounded by the comfort and warmth of family, and the constant demands of canine and feline affections. Unfortunately, James awoke Christmas coughing green and hugging a basin. We opened presents and stockings between ice packs, back rubs, and a competing pile of Kleenex to wrapping paper. He slept for a while on the couch to be near the family, but by the afternoon, James was feeling miserable. The on-call medical team gave recommendations to head towards the emergency department back in Toronto for a highly probable admission on Christmas day. 

In all honesty, I was disheartened. I have the previous experiences to know that lung disease does not take a holiday, but I continue to hold out for hope of a different future. James was promptly admitted onto the transplant floor and given the luxury of a private room for those on isolation precautions. A few days later, James was discharged from the hospital, and back at home to snuggle in bed with me. It was then that James turns to me, and with all the reassurance in the world, remarks, "You know, I really did have a nice Christmas." That, right there, is James. He can always find the light (and without the need for conscious effort). 

The following day, James was re-admitted through the ER by ambulance. It had taken almost thirty minutes and the kindness of strangers to get James home from the hospital in his wheelchair a few days earlier, because of escalating snowbanks and uncleared sidewalks. We couldn't venture across the street to the ER alone without a personal shovel or wheelchair snowplow. We wouldn't have made it very far, and James needed some immediate attention. The paramedics were exceptional. We truly appreciate the generosity of simple kindness.

James was given a quiet and dark room to find some comfort and sleep. We were pleased to learn that his lungs remain clear from infection and fluids. The gastrointestinal concerns are similar to the past: a form of pseudo-blockage that is common in Cystic Fibrosis. James has had previous repeat episodes that seem to accompany his low lung function and weight status. This is an unpleasant, but familiar path. We will be able to wade through together.

That's all for now. I will continue to update. Thank you to everyone for your prayers and warm thoughts. We feel so grateful and humbled by all of your love. (Our wall of love continues to grow back at home. You can message us here or on Facebook for our address to contribute). Please continue to share our story to help spread the word about the importance of organ and tissue donation.

reflections of year and other ramblings

First, I have not written a health related update in the last few days, because I don't really feel that I have a lot to write about. James and I are cautiously optimistic about his new found stability even though there remain day-to-day challenges and limitations. We make a concerted effort to celebrate the small achievements improvement in James' health status. James is truly doing exceptionally well given the circumstances. He is impressing everyone at the Transplant Gym. He is able to walk longer and further distances, both on the treadmill in the Transplant Gym, and around the apartment, with less breaks and a faster recovery from shortness of breath. As always, James is pushing himself in all regards. He averages 3,000 calories almost every single day, and with that, James has been able to maintain his weight between hospitalizations. Can you feel my pride? James is humble about these daily feats, but I always remind him that I'm aware of the heroic efforts behind the smile.

Last year, James went home to Victoria for Christmas. He was able to spent the day on Salt Spring Island on his family farm with his family and beloved pets. We longed for each other, but there was comfort in the knowledge that James was healthy enough to be home. We were able prepare gifts for our families together, and skype during gift giving to share the joy between families. He was 7 months post-transplant and feeling happier and healthier than ever before. He had passed his 6 month post-transplant assessment with flying colours. James had no complications. His spirometer readings were still increasing on a regular basis. Nothing seemed insurmountable. We were elated (to say the least). James could breathe, and it was easier than in all his memories. It was remarkable to watch James' recovery from his double-lung transplant. I still remember the complete joy on James' face after running across the street for the first time in a decade. I still have that sense of awe for his continuous strength. (It is the same awe that I feel as I watch him struggle to breathe again, but continue to move forward in great strides). 

We will always been indebted with gratitude for James' donor and donor family. We thought a lot about them during that first Christmas and holiday season. (We still think about them daily, and thank them for the gift of another day). We could not console the grief of these anonymous strangers, but last year, James and I worked on a very special letter to them. We wanted to find the right words to express our love and gratitude. We wanted to acknowledge the courageous act of organ donation during a time of mourning and grief. We wished to ease that pain with the knowledge that James' life was saved, and his was given a quality of life not known to him since childhood. How do you thank someone for that gift? 

James would spend the holiday season with his family, and return to Toronto for his 9 month post-transplant assessment. It was a devastating time for my own family. My Bubie's health was deteriorating, with more frequent hospitalizations, and less treatment options available. Over the holiday break from school and work, I spent almost every single day in the hospital with my Bubie. We painted her finger and toe nails. We read the daily newspaper together. We drew together. We shared favourite memories. We talked and talked and talked. We always did. My Bubie was still filled with a love of life, and determined to find laughter and joy in every moment. I remember these days with a fondness, because they represent a true spirit for simply being in the moment (and loving each and every one of those moments). That was my Bubie. 

James came back to Toronto early to say good-bye to my Bubie. I will always be grateful that James was able to be there to hold my hand. We were still embracing James' new life. This was a small reminder of the reasons to keep focused on living (with laughter and joy, of course). The pain and grief is still very real. In some sense, I think it is compounded within the context of our current circumstances. I give myself permission to feel grief in all its forms, but I also have to make a conscious effort to remember the positive. There still exists a depth of happiness. The sadness does not negate that happiness, but rather, I believe it makes it possible, because of the dichotomous nature of the emotional spectrum. 

The next few months are a blur (to some extent). My siblings and I all traveled to Israel to celebrate my grandfather's ninetieth birthday. All of my cousins were together for the first time ever. It was wonderful to be surrounded by family, and to celebrate my grandfather's birthday together with shared memories (both new and old). James and I were also starting to plan for our wedding to be in July. James' health and stability were reason to move forward with our dreams for the future. I somehow managed to complete my semester (and degree), and I gave my notice at work to prepare for the move to Victoria with James.

James and I celebrated his 1 year post-transplant anniversary in honor and memory of his donor and donor family. James' lung function had a slight decline after his assessment. We learned that Grade 1 Acute Rejection was found on James' bronchoscopy. Grade 1 Acute Rejection is mild and rarely requires treatment, because it resolves on its own. The decline in lung function was thought to be the result of the bronchoscopy and was also expected to recover within time. Unfortunately, James' lung function didn't recover, and treatment was complicated by the emergence of the Shingles virus (two weeks before the wedding, that is). We had a perfect year with few to no complications, and in truth, James and I felt no real reason for concern (nor did the Transplant Team indicate otherwise).

Our wedding was absolutely magical. It was truly the most incredible evening of my life. I didn't know it was possible to feel the level an depth of happiness and joy. The following morning, James' lung function took a drastic decline. The rest of the year from there is documented in this blog. Everything can change in a moment. 

This past year was filled with lessons about life and living. It is important to acknowledge that James and I lit a lot of memories candles for members of our CF and Transplant "family" (including one this morning, for Richard, and for his wife, Paula, always in our hearts and minds). I suppose that this past year was a celebration of life; both lives lived and lives lost.

happy holidays!

sick

I've been fighting a viral respiratory infection for the last week or so. It is nearly impossible to take care of James, while also managing to take care of myself, and prevent the spread of infection. I have been constantly wiping down all of the doorknobs and surfaces of the apartment, and washing my hands with the frequency of a compulsion. James has been making all efforts to help around the house within the limitations of his disease. My tolerance for being sick has its own limitations. I'm ready to return to my previous level of exhaustion and fatigue. I suppose it really is all about perspective.

We have had a few days without appointments, because I have not been well enough to take James to the Transplant Gym. Cooking, dishes, and laundry aside, I have been sleeping, sleeping, and sleeping. Unfortunately, I'm not feeling a lot better, and James has to return to the hospital for appointments. We head out early in the morning for James' weekly lab work and I will have to find the energy again this afternoon to head back to the hospital again for physiotherapy. I won't be able to stay in the Transplant Gym, because of my infection, but I will find a corner to sleep, set my alarm, and return to pick him up within an hour and a half.

I'm disappointed that I also won't be well enough to go to work tomorrow. I've been working as a behavioural therapist with a child with Autism Spectrum Disorders on Saturdays. It is a welcome break for both James and myself. James spends some time with a friend, and escapes into his computer for a few hours. For myself, I've always been incredibly independent, and the isolation of the transplant world has also mean a sense of identity loss. Our world has become smaller and smaller. Despite our best efforts, it can feel as though our lives revolve around Cystic Fibrosis and waiting (and waiting and waiting) for re-transplant. My Saturdays are an opportunity to re-engage with the part of myself that has drive and passion for working with children with special needs and disabilities. I'm working with a sweet child with a high dependency for a rigid routine and I feel guilty that my absence will also impact the child's day.

On a side note, our wall of love from family and friends has grown and grown to include a second wall. We are so grateful:

 

love love love