another day in the ICU

We are sick and tired of being sick and tired. We talk a lot about quality of life in the ICU. That is, a lack of quality of life. We are as positive as possible. We make the most out of our situation, but it doesn't seem to be enough to really lift our spirits. We still laugh every day, and I have managed to sneak into his bed for a cuddle here and there, but at the end of the day, I still have to go home, and James and I are left alone with our fears. It never gets easier to leave him. We are afraid to never see each other again, and it is not an unfounded fear. Guilt doesn't change the circumstance, and I need to be able to sleep at home, but I still feel nauseous each night. We really ache for each other in the dark of the night. It is harder to reassure ourselves without another calming voice or a hand to hold. The night seems to take advantage of our vulnerabilities.

In the evenings, James and I play games on the iPad. We watch shows on the computer. We avoid sleep and ignore the heaviness in our eyes. We stretch our time together as long as possible. At shift change, James and I can barely stay awake, and it is time to wish each other the sweetest of sweet dreams. We hesitate to steal a few more moments together. It would make leaving impossible. I am grateful for friends and family members to meet me outside this sterile environment, and get me through the final hours of the day. I crawl into bed looking forward to sleep, but my thoughts are always on James, alone in the hospital, with a long night ahead.

In terms of health, James is stable on life support awaiting transplant. We recognize that being "stable" in the ICU on ECMO holds a different meaning, but I think it is important to acknowledge. There is some level of comfort in the knowledge that James is doing as well as possible given the circumstances. Small achievements and improvements are grandiose on this scale. James no longer relies on the ventilator to breathe for him, and with that, James is given a a few hours each day to be able to speak. It is wonderful to hear his voice after a long month in the ICU. He also continues to make progress in physiotherapy on the treadmill, and with his weight exercises. This will help optimize his health for transplant, and contribute to the best possible outcome for post-transplant recovery.

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?

home with an update

James was discharged from the hospital on Monday evening. He was absolutely ready to be back in his own bed and the little space we have made into our home. We were very concerned about his blood oxygen saturation levels, but James' lung function appears to be recovering from the aspiration episode. We thought that James had become oxygen-dependent, but his blood oxygen levels have been slowly increasing to within a healthier range, and above the level that would indicate the need for supplementary oxygen support. James' shortness of breath continues to be severe in terms of the need for longer recovery periods and an ever-growing definition of exertion. These experiences are compounded by the fear and anxiety that are associated with the sensations of breathlessness. We are hopeful for that his shortness of breath and breathing difficulties will also continue to improve from the aspiration alongside his healing lungs. 

James' determination to work through the discomfort and pain of dyspnea continues to be remarkable. He is increasing in both strength and endurance at the Transplant Gym. He is now able to engage in cardiovascular activities for ten minutes without the need for a break and can complete twenty minutes on both the treadmill and stationary bicycle. He has also been able to increase his arm weights by a couple of pounds. These are more than noteworthy improvements. A few weeks ago, James was limited to only two to three minutes of cardiovascular activities between breaks and twenty minutes on either of the machines (rather than twenty minutes on both). James had even been exercising with the absence of weights for a few weeks. These improvements have been irrespective of James' frequent hospitalizations and recent aspiration episode. 

As for myself, I am coping within the realm of expectations for the given circumstances. There is a lot of grief and sadness to process. I give myself permission to experience the full extent of these emotions, but I also make a conscious effort to focus on positive experiences and moments of gratitude. My love for James does not ever seem to wane, but rather, I feel an ever-growing depth and intensity of love for him. James is a source of continuous strength and hope for the future. I would love to emulate his constant state of optimism. That is not to suggest that James does not also have moments of grief and sadness, but James always seems to have a positive resolve. He knows the importance of attitude for survival. There is not another option for James. James will have another double-lung transplant. Our dreams will become possible again. That is the only focus for the moment, and for the future. We will get through this. We have no choice.

update of sorts

It has been a while since I have written a more serious update, but first, I want to acknowledge the incredible and overwhelming generosity of our loved ones, dear online friends, and perfect strangers. "Toonies for Transplant" was a wonderful success. We will forever be grateful for your contributions to our lung fund during this difficult time. We can truly take a deep breath. Our fundraising goal has been met! (The fundraising page has been re-formatted. Our media has been lost. We are hoping to get it back in a few days).

James appears to be stable at 12% lung function, but it is difficult to ascertain a level of stability that also allows for the unpredictable nature of the disease. We recognize that everything can change in a single moment. We are always alert to the possibility of decline. It is a relative stability that doesn't allow for complete rest and relaxation. We remain aware, in both fear and gratitude, making the most out of each and every moment (all within the limitations of the disease). Laughter has never been more important.

James is doing exceptionally well at the Transplant Gym. He is building strength and endurance. James accepts the limitations on his independence. He is learning to slow down and listen to his body (with its ever-changing capabilities). He is able to exercise for five to seven minutes before a sense of complete breathlessness forces him to rest. This no longer incites a form of panic or anxiety within him. James has come to expect these moments, and focuses on breathing through them. He accepts a lower level of intensity for exercise and allows for these breaks to rest. I am so proud of his determination. This is a recurrent theme in my posts: James as the epitome of strength and courage. I feel an incredible gratitude for being part of his life.

I return to another recurrent theme in my posts: That is, a level of physical and emotional exhaustion that is beyond description, and the limitations of language for the expression of these experiences. There is a heaviness that seems to have long settled into my body. It has become a constant weight that slows my thoughts and movements to an impossible pace. I am made still by the force of this exhaustion. The adrenaline of on-going crisis is a temporary illusion. I find it difficult to regenerate energy.

It takes a conscious effort to face the fatigue with self-care. I seek the comfort and nourishment of foods. I exercise to escape my mind and build my own strength. I sleep, and I sleep, and I sleep. I also build energy through attitude. It involves a letting go, or rather, an acceptance for everything that is beyond my control. I must embrace the moment for survival and in mindful appreciation.

My love for James is my best defense against exhaustion and fatigue. It is our best defense. We are both very sensitive to one another. We have the ability to lift spirits (and of course, the alternative, bring each other down). The later is rare. We both feel positive for the most part. We have each other, don't we? That alone makes every single moment worth it.

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.

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.

esophageal PH study results

This is a difficult post to write. I'm feeling very emotional. James and I received some disappointing test results. We are both feeling a lot of anger and frustration, but I can't afford the energy to hold onto negative emotions. This will be another process of acceptance and letting go.

In Victoria, James had an esophageal PH study to determine the level of acid in his esophagus. This was a miserable experience for James. He was required to wear an electric sensor and have a tube down his nose for a twenty-four hour period of monitoring. Microaspirations are a known cause of bronchiolitis obliterans. This is a form of gastroesophageal acid reflux from the stomach into the lungs that causes inflammation and tissue damage. It is very common in individuals with Cystic Fibrosis. It is preventable and treatable through a combination of laproscopic surgery and medication to reduce acid levels in the digestive system. 

The study was recommended following James' drastic reduction in lung function with no known cause. We have since learned that the study is standard for many pre-transplant patients with Cystic Fibrosis at some transplant centres. This is a proactive strategy to detect and treat microaspirations prior to transplant to prevent post-transplant bronchiolitis obliterans.

James was required to stop taking his gastrointestinal medications in the days prior to the esophageal PH study. At that time, James was in the hospital recovering from sinus surgery for a nasal obstruction and nasal polyps. (This is also very common for individuals with Cystic Fibrosis). His lung function started to decrease in the days following his surgery. We both suspected that this was correlated with the discontinuation of his gastrointestinal medications, but it was also possible that it was a delayed response form the anesthesia.

We waited several weeks for the results. We inquired almost daily during James' inpatient hospitalization. We finally decided to get in touch with James' transplant co-ordinator form British Columbia. She informed us that the results had been faxed to Toronto several weeks ago. James' results were abnormal. James has high level of acid in his esophagus. 

We are waiting for more details. We need more information. We hope that the damage is not permanent. We cannot increase James' medications that reduce acid, because of a dangerous interaction with his prophylactic antibiotics. We will inquire about a repeat test without the discontinuation of James' gastrointestinal medications. We will also inquire about the laproscopic surgery to prevent further microaspirations, but James' may not be a candidate for anesthesia, because of the dangers associated with a decrease in lung function.

That is all for now. The only other news is that James will no longer be attending the transplant gym. He will have to wait for a further decline in lung function or for his official listing on the transplant waiting list. We knew this was possible. The gym has limited space. The priority is for individuals on the transplant list or immediately post-transplant. We will continue to do physiotherapy independent of the transplant gym.

no longer homeless!

James and I have good news to share. We signed a lease for October 15th. It is a 6-month lease (and month-to-month afterwards). We officially have a home in Toronto. It is directly across from the hospital. It has a single bedroom, a lot of closet space, and a bright view of downtown Toronto. We will also have access to an exercise room for James' physiotherapy and of course, for my sanity, to some extent.

We are meeting more (and more) wonderful people at the transplant gym. There is a very positive energy of hope and optimism in the room. We continue to enjoy sharing stories amongst individuals pre-transplant and post-transplant. The level of support and encouragement is incredible. There are no words to describe the courage in that room. I will often feel a wave of sadness watching someone struggle for breath, but there is always laughter in the background to bring me back into the present.

James pushes himself very hard at the gym, and tends to collapse into exhaustion back at home. He is sleeping more and more these days. I wake often during the night to check on him. His breathing has become very shallow and almost silent at night. It scares me and I will reach out to feel his skin for warmth. It is a significant contrast to the last year of gasping for air and loud snoring from a complete sinus obstruction. 

James and I want to share our gratitude. It is important to keep our focus on positive.

We are grateful for each other. We are grateful for each and every day together. We are grateful for friends, family, and community. We are grateful for hope and optimism. We are grateful for access to health care, and a team of genuinely caring experts and specialists. We are grateful for deep sleep, and of course, good food. We are grateful for feline friends and late night cuddles (both from each other and Ophelia). We are grateful for gratitude itself. It is an excellent reminder to appreciate the present moment.

These photos are from our temporary home. We are looking forward to moving into a more permanent living situation. It will be lovely to have more than a mattress on the floor, but of course, all you need is love, love, love.

transplant gym

It is strange to be back at the transplant gym. We hear a lot of stories. We share our stories. There is a lot of community-building and a transplant "family" is formed. There are even a few people from James' pre-transplant days. Most of them are recent transplants. (James was at the transplant gym for 3 months post-transplant, and it has been 16 months since his first double-lung transplant. These individuals would have been on the waiting list for longer than a year).

James at the Gym in June 2011 (1 month post-transplant)

There are very few young adults in the gym. The vast majority of elderly seniors awaiting lung transplant. (The stories of COPD and emphysema are painful to hear. Many of these individuals are only a few years younger that my Bubie would have been, but I do not believe she would have been a candidate for lung transplant. She also had advanced lung cancer that resulted in the removal of a third of her lungs a few years prior to her death).

Today, James and I met another young man with Cystic Fibrosis (from across the room). We were not able to talk with him, because the risk of cross-contamination and shared infection is high among individuals with CF. We are required to remain on separate sides of the room. The transplant gym makes all efforts to create separate schedules for individuals with CF. 

It was clear that this young man is pre-transplant. His cough was reminiscent of James' pre-transplant days. There were hours and hours spent coughing up phlegm and sputum in the morning (and throughout the rest of the day). James had to exercise with a garbage beside him. We do not miss these days. It was hard for both of us to hear, but at the same time, I have a hard time remembering James' constant cough. This is the definition of being blinded by love. The same can be said for James' malnourishment. He was 90lbs (and all bones). Now, I cannot look at photographs from our first year together without feeling nauseous. He was dying (and close to death in those last few months). I don't think I really let myself feel or know the extent of his illness. We just focused on a single day at a time. We are doing that again, but I cannot lie to myself. I cannot deny the gravity of our circumstances. We have been here before, and it is all too familiar.

rosh hashanah

Last night, James and I celebrated Rosh Hashanah (Jewish New Year) with my family. It was a small crowd around the table. The absence of loved ones lost in the last year was strongly felt by all of us. We shared stories and watched videos, but there is still a lot of pain and grief. I held James close, and I asked for a lot of photos to be taken. I have always hidden behind the camera, but these days, I want to document every moment I have together with Jame in shared love and happiness.

He is looking good for someone in lung failure.

We also went to the transplant gym in the morning. James worked really hard, and then, fell asleep in complete exhaustion for most of the afternoon. I'm so proud of him. That never seems to change. He is working at about the same level as he was pre-transplant, but with a significant difference: He is not on oxygen. We looked around the room. There were a lot of people in dire need for lungs. We shared similar thoughts: James is not sick enough for transplant (despite his decline in lung function to 25%). This should come with some reassurance, but it is devastating to imagine that James may have to deteriorate a lot further before being considered a candidate for another double-lung transplant. 

We are feeling very lost. It is not safe to return to Victoria, but James is not ready for transplant. His body is compensating for the decline. We are playing a waiting game. We have no certainties for the coming days, weeks, or months. We can no longer conceptualize a form of stability for James' health. (Can stability exist at 25% lung function?). We really have no choice. We have to take it one day at a time.

exercise

Exercise is amazing. Did I mention that I love exercise? Thirty minutes of weights in the gym, and I am significantly more stable (mentally, that is). I start to feel human again, or rather, I feel something that I would assume to be in the human-like range. What does it mean to feel human? Perhaps, I simply mean that I feel more alive, or in the least, more able to function. Perhaps, I might need to experience a certain amount of sleep on a regular basis before I can be expect to be able to engage in a philosophical discussion with any degree of insight or intellect.

It is early evening, and I have returned home to make dinner (and of course, I went to the gym. Did I mention that I love exercise?). James is back at the hospital in a benadryl-induced sleep. He is eager to complete his last treatment and be given his discharge papers. The muscle jerks and spasms that were reminiscent of James’ past dystonic reactions to various anti-emetics have started earlier in the treatment process, after the administration of benadryl, but before the thymoglobulin. We are starting to suspect that it may be an allergic-type reaction to the benadryl, or even a psychosomatic response in anticipation of the anti-lymphocyte globulin. Regardless, James’ best defense is to close his eyes, and hope for an extended period of uninterrupted sleep to get through the process. He is insanely tough (and very tolerant of the constant checking of vitals, and the disruptive environment that invariably is the hospital).

James’ lung function appears to be stable at 25%. This is good news to the extent that it does not represent further decline. It could be weeks before the potential effects of this treatment are known. In the past, James and I have been cautiously optimistic (within reason). This is different. We know the efficacy of this treatment is rare. Our understanding is that individuals with acute cellular rejection tend to have a positive response. That being said, James does not present as acute cellular rejection. His rapid decline is more suggestive of bronchiolitis obliterans. This was the diagnosis given a few weeks ago. It is a diagnosis of exclusion for deterioration with no known cause. We are willing to make all efforts to recover lung function, but it is not clear whether this is possible. The damage may already be permanent. This is impossible to know at this stage.

James is struggling for breath with any or all exertion, including slight inclines, fast pace walking, climbing stairs, and even light stretching. Nevertheless, James’ oxygen saturation remains within the normal range. This is a good sign. He does not require oxygen support. On the other hand, it seems as though James’ heart is compensating for his low lung function. In the past, James had to work exceptionally hard to increase his heart rate to an aerobic range. This is no longer the case. James’ heart pounds from a couple of stairs or even several minutes of stretching. This is followed by throbbing headaches, extreme shakiness and fatigue, and a sense of weakness and complete breathlessness.

James is learning to take it slow (or at least, slow down), but he does not want to lose the benefit and hard work of the last 16 months since his transplant (and longer). He has been able to build incredible strength and endurance. We enjoyed hiking, swimming, and bicycling. We were lifting weights several times a week.

Here he is in the Gulf Islands Driftwood in February 2012:

and another from only a few months ago:

We have been asking the hospital for guidance over the last couple weeks of James’ admission. We made several requests to be seen by the transplant physiotherapist. We continued to inquire on a daily basis to each different doctor and nurse. We were finally able to meet with the physiotherapist this afternoon. She was wonderful and completely sympathetic to our situation. She understood the importance of maintaining James’ exercise regime (both for his physical health and as an appetite stimulant) and went to the transplant gym to advocate for us.

The transplant gym is reserved for patients actively awaiting transplant or up to three months post-transplant. The schedule can be difficult to arrange, because of the need to separate individuals with Cystic Fibrosis with burkholderia cepacia (and other dangerous and infectious bacteria). We have been given permission to return to the transplant gym (even though James is not on the transplant list). We are so grateful for the help of the physiotherapist in advocating for us, and for the kindness of the transplant gym in accommodating our needs.

James and I seem to grow stronger together in crisis (rather than apart). James tells me, “I love you more and more each day.” I do not hesitate to share the sentiment. The feeling is mutual. We do have our moments of tension, but James and I are able to attribute these to high dose steroids (on his part) and lack of sleep (on my part). We are forgiving of each other’s imperfections, and continue to hold each other closer at night. We are all too aware of the fragility of life. We cannot afford to take a single moment for granted. We have to focus on the love between us, and the joy and happiness that we bring to each other’s lives.