nausea again

These are the days to dread. It has been a miserable and long weekend. James' nausea and vomiting returned on Friday night. He has been hugging a basin for three days. I am completely helpless. I watch him tremble and wretch for hours at a time. We have no known cause. We have no solution. It could last for days. It could last for weeks. We are completely helpless. I am too exhausted to write more. I will try to update tomorrow.

heroics

Heroics. That is the word for all this. James is a hero. He is making enormous strides. He keeps pushing forward. His courage is unbelievable. I tried to express my deep admiration, and I found myself in tears. Words are completely inadequate here. I am so proud to be his wife.

James has been walking the entire unit in the mornings, followed by independent arm weights, leg weights, and standing stretches in the afternoon. He has a very strong sense of motivation, along with a very real determination and drive that makes an incredible difference. (We all already know this about James. His pre-transplant days were a testament to it).

James' improvements are evident on all levels with a promise of future health and benefit. The most essential (and remarkable) change has been in James' respiratory system. His hard work has made for steady weaning from the ventilator. This can often be a very long process with a lot of back and forth movement between the various stages. James has been on minimal support for the last twenty four hours (and for twelve hours on previous days). This afternoon, James will make an attempt at a spontaneous breathing trial. That is, James will breath completely independent on the machine (with oxygen support). It will be a short trial of a couple of minutes followed by longer trials in the coming days. It is all part of the process.

Another major area of change has been with James' gastrointestinal system. James has a long-standing history of nausea and vomiting episodes as a result of severe dysmotility, delayed gastric emptying, and pseudo-blockages. He has not been able to tolerate entereal feeds (or anything by mouth) for the last six months. He has received his nutrition directly into his veins through Total Parenteral Nutrition (TPN), in addition to trickle feeds to preserve the function of his digestive system. Unfortunately, TPN has been known to cause infections and sepsis over the long-term. A major hurdle for James will be developing a tolerance for feeds. James will not be able to eat or drink with his tracheostomy, but at some point, James will need to slowly re-introduce liquids and solids. He will also need to regain strength in his swallowing muscles. This will be a major goal for eventual discharge from the hospital.

We can expect a difficult and slow process, but James is braving the very early steps of weaning from the TPN, and increasing his nasogastric feeds. He follows a strict bowel routine to encourage digestive motility and prevent bowel blockages. Nevertheless, James continues to face daily nausea and vomiting episodes. He is pushing through the discomfort with incremental changes to his digestive routine. This is a remarkable feat.

I wish I could convey the magnitude of these steps forward. We are right on track with forward motion (right out of the ICU). We move with cautious optimism and a weary knowledge of potential challenges. James can also be hesitant at the speed of this pace, but I sense confidence and readiness in his movement. Everything feels possible all over again.

nausea

James is having another nausea and vomiting episode. Zofran and Gravol give him a couple hours of reprieve through sleep, but James wakes every hour to vomit and wretch. He reaches out with shaky hands. He is covered in sweat (and salt). We are both exhausted and worn out. It is hard enough to be in the ICU for months. This just feels cruel. I am completely helpless.

six weeks

The major challenge right now is remaining positive. James has been vomiting for three days with the increases to his feeds. The last episode of nausea and vomiting took almost two weeks to get under control. The cause of these episodes has never been known, but it is thought to be a pseudo-blockage in combination with severe delayed gastric emptying, and in relation to low lung function. James cannot handle any amount of volume in his digestive system. This was the reason for starting Total Parenteral Nutrition (TPN) a couple of months ago. TPN provides nutrition directly into James' bloodstream. The other feeds will be held for now, and most likely, re-started at a decreased rate.

James also had a very painful and uncomfortable bronchoscopy last week. The team took cultures from his lungs and have been able to confirm that James has another Pseudomonas infection. This provides an explanation for an increase in shortness of breath and thick secretions. James feels as though he is drowning in mucus. For the last few weeks, James has also been able to speak with a finger occlusion to his tracheostomy site. It has been wonderful to finally hear his voice again. Unfortunately, James is also finding it difficult to speak. He fears that the Bronchiolitis Obliterans will diminish his lung capacity, and he will either "drown in mucus" or "run out of air to breathe". These are very real fears, and I find it difficult to console, because I share the same fears. I know that James is as stable as possible, and I truly believe that the ECMO will keep him alive for transplant, but I suppose reason cannot always overcome emotion (especially in combination with stress and exhaustion).

We are finding it more and more difficult to find optimism for the future. James has now been in the hospital for three months (with six of those weeks in the ICU on life support). The ache and longing for home has become stronger with the changing of seasons. We had a dream of being back home in Victoria to nest together for the Spring in our lovely home. We only had six weeks together last summer before returning to Toronto for re-transplant. It was a very different six weeks than these last in the ICU.

We dream of our days together in the garden, and around the home with our feline friends. I would wake early in the mornings to weed before the sun (with the help and hinderance of our cats, of course). We would sip tea together in the courtyard, and James would share with me the beauty of Victoria. We would go to the beach between doctors appointments, and for late night hikes and bicycle rides after long days at the hospital. We didn't take a single day for granted, and truly made the most out of each and every day. I am grateful for the perspective, and James and I still value our time together more than anything else in the world. 

We felt as though those were the best and worst six weeks of our lives. We were truly living our best lives, but James' lung function was taking a sharp decline. We didn't believe that James had a lot of time left. We laughed and cried more than ever before. We never imagined that all this was possible. We had a very different dream.

We have now been back in Toronto for seven months. Our love and connection have grown in trial and strength, but the last six weeks have been wearing on our spirits. James has been living on the edge of death. He is being kept alive by machines with little to no quality of life. It is harder to laugh. It is harder to dream. It is harder to imagine something different. We have been each other's hope for the last few years. We have been each other's hope for the last few weeks. We desperately need a hope to hold onto, but it is not enough to love one another. 

We need a transplant. James needs a transplant.

and the nausea continues

We are on day five of nausea and vomiting. I wish there was more to write about, (or at least, more positives). There is some discouragement and disappointment, but James and I both know that it will pass, despite all the discomforts and misery. Every day is still another accomplishment; a day closer to transplant. We have to stay focused on that goal. We will get there. We have to get there.

These nausea and vomiting episodes slow the pace of time in the hospital. Respite comes in the form of sleep. James sleeps on and off throughout the day, between discarded basins, and cold washcloths. I sit and knit, and listen to James' laboured breath, and watch for the rise and fall of his chest. There is a peacefulness to these moments. 

I love to hold James' hands in my own, and comfort him with back rubs. I wish there was more that I could do to ease his pain and discomfort. I know that my presence brings him a sense of security, but that doesn't seem to be enough. I remind him often that he is surrounded by love. We are grateful for all the prayers. We will get through this. We have to get through this.

long days in hospital

It was a rough day, but I still feel as though James is genuinely doing a lot better, or in the least, making improvements almost every day. The nausea and vomiting comes in waves. We truly have no choice but to function one day at a time, or rather from one hour to the next. A very positive morning can be followed by a miserable afternoon, and nauseous morning can be followed by a lovely afternoon. 

Today, James woke with another nausea and vomiting episode, and with hopes that it would subside by the afternoon. Unfortunately, a second wave arrived in time for physiotherapy, and James spent the rest of the afternoon curled up in a ball and hugging a basin (with his wife by his side to rub his back and cuddle him). 

A lot of the frustrations comes with the uncertainties, and of course, a lack of known cause for these episodes. It seems to correlate with James' low lung function, and often follows several days of (relatively) good eating. It is possible that his body simply cannot handle digestion at this point. It requires more energy than is available, because the majority of James' energy requirements go towards breathing. He has no appetite and no interest in food or eating. He motivates himself to eat out of necessity, but the difficulties remain.

We ended the day on a positive note with an escape from his bedroom to the hospital lobby. We played a game of Settlers of Catan, shared a few laughs, and were able to create our own space together (in separation from the disease). I can't even begin to express the value of these moments. Our time is more previous than ever before (and that includes all the difficult moments too).  

morning nausea

It is Sunday morning, and I am watching James try to sleep away the nausea. He is making an attempt to fall asleep to the background noise of snoring on one side, and blaring television and concerning cough across the room. These are the wonders and joys of a ward room. 

Nausea always bring disappointment, but it doesn't negate the accomplishments of the previous days. It was a wonderful week of small improvements. These gains are essential in the face of possible deterioration. The fear is always there; lung disease is notoriously progressive. Even the smallest of movements towards improvements in health status warrant recognition and celebration. James has been able to eat solid foods for the last few days, take several walks each day (without oxygen), and has been gradually gaining weight. These accomplishments lift our spirits. James' misery at a long-term hospitalization has been replaced with a sense of hope for a second transplant. 

We have now surpassed James' post-transplant hospitalization in length. It has been over a month in the hospital. The complications in securing funding for James' Total Parenteral Nutrition (TPN) feedings remain. There are a lot of politics (and that is without the additional factor of being an out-of-province patient). The Transplant Team and TPN Team have been very clear that it is not safe to discharge James without a solid nutritional plan. This would need to include feedings (in some form) to supplement James' minimal intake. James' gastrointestinal difficulties are further complicated by the previous failure of a g-tube, and Cystic Fibrosis-related pancreatic insufficiency (leading to malabsorption and impaired motility). These are the realities of Cystic Fibrosis and end-stage lung disease. We are fortunate and grateful that James' lung status remain stable at 12%. 

In the time it has taken me to write these paragraphs, James has been able to fall asleep (despite the musical of bodily sounds from his roommates). I will allow him to rest without the pressure of medications and exercise. Updates to follow, but for now, love, love, and more love.

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.

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.

and a second entry from the wife

Jamie and I are both recovering from the complete lack of sleep of the last few days. We are relieved the be past the point of severe pain and nausea, but James will not be able to be discharged from the hospital without an assessment of his supplemental oxygen requirements. His lung function appears to have deteriorated to the point of impacting his blood saturation levels. We were prepared for this next stage in the progression of the disease, but that doesn't necessarily ease the emotional and mental transition. James has been on supplemental oxygen throughout this hospital admission for low levels of blood oxygen saturation (and decreases with exertion and during sleep). James appears to have become oxygen-dependent again. We feel a sadness, to some extent, but not beyond expectation given the circumstances. We don't imagine that this change will have a significant impact on James' quality of life on a daily basis. Some of our best collections of memories are from James' pre-transplant oxygen-dependent days. That's all for now. I am conserving my energies for the next few days. We promise to continue to update. As always, James and I are sending love, love, and more love.

hospital and book of love

I have just arrived home from the hospital. James was admitted to the hospital again for anti-emetic treatment and hydration following another nausea and vomiting episode (and dehydration from several days of minimal food and drink, because of on-going low level nausea and lack of appetite).

He toughed it out at home for as long as possible (always with that same strength and courage). He fills me with wonder and awe. We held hands and cuddled together in his hospital bed for most of the evening, but I left him to sleep (and in hopes of also finding some sleep for myself). It is always hard to leave him in the hospital. It is even harder to return home to an empty bed.

On an aside, James had a good friend, Eva Markvoort. Eva was a strong voice in the Cystic Fibrosis community, and an advocate for organ donation. The film, "65_RedRoses", is a documentary about Eva's valiant struggle to survive during the transplant process. She had exuberant passion and strength during the most difficult of times. Eva had a "wall of love" from all around the world:

James and I are growing our own "book of love" with letters, cards, and postcards from loved ones and friends. It is a wonderful way to lift our spirits.