early days post-transplant

In those early ICU days, I would describe waking up with complete anxiety in the mornings. There was an intense need to look upon James. I could not ease this incredible emotion without being able to hold his hand. I crave that same need for nearness these days. I shake in anticipation in the waiting room. I am easily brought to tears. The difference is that I am not finding a lot of comfort in his presence. I am desperate for him to be awake and arousable, but at the same time, it is heart-wrenching to watch James thrash and scream in severe pain. I can accept a level of helplessness. (It has become a familiar emotion). That being said, I experience a depth of pain in response to James' discomfort. This is a consequence of love and connection.

The last few days have been ripe with challenges and complications, but also moments of great success and accomplishment. We have gone from one end of the emotional spectrum to the other. There is no post-transplant euphoria. We are deep in the trenches of post-transplant realities, and it an entirely different set of uncertainties. It is impossible to predict or project into the future. We continue to live a single day at a time (and in truth, from one hour to the next). The days each bring movement in many different directions. We will have to find comfort in a general trend forward.

There have been some scares (for all of us), but I would rather share the uplifting news. (The rest is all part of post-transplant complications and all within the realm of expectations for a re-transplant recovery process. I have a need to focus on the positive). James did chest physiotherapy, and with some encouragement, James nodded enthusaistically at the suggestion of sitting on the edge of the bed. He was willing to make an attempt despite the pain and discomfort. Then, James took it a step further. That was pun-intended. James was able to stand up and take a few steps. It was absolutely remarkable. I cried in pure joy and pride. I didn't get a photo of him on his feet. (I was trying to find Kleenex). I do have a wide grin from the side of the bed:

That's all for now. 

love. love. love.

moving forward and backward

There is an intensity to this level of exhaustion. I am vulnerable to my own emotions. I am waiting for that sense of relief, but I still feel the weight of uncertainties. I need to find a place of peace and calm. I want to be able to rest with the knowledge that James is moving forward, but I continue to feel the weight of the unknown. I watch my love in incredible amount of pain, and I feel that familiar helplessness.

I have to reconcile the intellectual with the emotional. I know that James' recovery will be completely different that his first transplant. I recognize that it is a long and slow process. I am aware of all the various factors that could influence his short-term and long-term recovery process. I know that there will be complications, and I can prepare myself for the inevitable.

My emotions are beyond my control. Yet, I am not flooded with fears and anxieties, but rather, I am hesitant. I am afraid to let go of control. (Of course, I have no control). I suppose I need to know that James is still present. It is a strange feeling of almost desperation. He has rarely been awake enough to communicate. I long to see those blue eyes and sweet smile. It comes with a wave of overwhelming emotion, and I find myself in joyful tears. It is James. James is all I need. 

We continue to have difficulties with pain management, and the subsequent impact on James' need for sedation, and on the function of his respiratory system. There have been some improvements to his blood gases, but I know that variability is within the realm of expectations for this stage. 

James will slowly be weaned from the ventilator in balance with these changes. It is very positive that James has been able to tolerate pressure support settings on the ventilator for short periods of time (rather than a more invasive pressure control). That being said, James may require pressure control with increases to his carbon dioxide levels or other negative changes to his blood gases. This could be a response to high levels of sedation and analgesia, or James' own anxieties in relation to pain and movement. It is all part of the process.

Physiotherapy worked with James in his bed on range of motion exercises. He was limited due to intense pain, and the movement of sputum and mucus in his lungs. The secretions have been very thick, and James does not have the strength to cough (to support proper suctioning and clearance). A decision was made that James would have a bronchoscopy to clear secretions from his lungs, and to get a sputum sample. We have been informed that James' donor lungs have returned a positive sample for a Staph bacteria. Another antibiotic will be added to his regime to fight the infection.

We will continue to move forward. We will continue to move backward. This is all part of the process. We can expect challenges ahead. We can also expect celebrations. I have complete faith and trust in James' medical team. We feel the love of the entire ICU. Everyone is invested in helping James through the best recovery that is possible at this stage.

I find some reassurance in James' smile. I can hold his hands for hours waiting for him to open those eyes. I am then able to close my own eyes in hope of some form of rest.

Fancy Shmancy Stockings and Chest Tube Drainage

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.

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?

be an organ donor

There have been a lot of emotions in the last few days. Toronto has been doing a record number of lung transplants, and James and I have seen many friends from the Transplant Gym breathe easy for the first time in years (without the support of oxygen). There is an incredible amount of joy for them. We remember that feeling. We remember that glow. We also know of the fear that comes with complications. It is hard to find words of comfort. These friends have become part of a very special community, or rather, a family of tightly knit lives. We understand the experience at a level that is beyond description. We don't need words. We lean on each other. We celebrate with each other. We mourn with each other. We feel for each other at a very deep level. There is no competition. We want each and everyone of our loved ones to get the right set of lungs, at the right time, even with the knowledge that about fifty percent will not survive the wait. That later part is harder to talk about. We need to believe otherwise, but there are always reminders of the reality of living so close to death.

This week, a friend of mine, a "Cyster Wife", said good-bye to her fiance. It was her birthday, and had been exactly a year to the date of his proposal. He, like James, had Cystic Fibrosis, and was at 12% lung function awaiting a second double-lung transplant. The CF Wives come together during these times. We pray for the family of loved ones lost. We send love (and love and more love) in their direction. We feel the pain as though it was our own and grieve alongside them. We hold our loved ones closer and closer. We all deserve to breathe easy. Cystic Fibrosis is a cruel disease.

The lack of available organs for transplant is another part of this story. Please visit the links of the right to register online in Ontario and British Columbia. Talk to your friends and family about your wishes. We need to open the dialogue. It could be you. It could be someone you love.

Edit: Good news. Another friend got his call. It will be a few more hours to find out whether the lungs are a viable match. 

According to the Trillium Gift of Life Network, James is one of 83 people currently waiting for a lung transplant in Toronto, Ontario. There have been 104 lung transplants to date in 2012. We really are at the international centre for lung transplants. My hope is that James can become one of those statistics. These are hopeful numbers.

re-defining normal

A few days ago, James and I had a full day without any hospital appointments. Weekends aside, it is rare for James and I have to time together that doesn't revolve around the hospitals (and post-hospital fatigue). We decided to take the risk of going out to the museum with hopes of avoiding crowds by visiting in the middle of the day. We constantly wash our hands and take all the necessary precautions to avoid potential infection, but it is also important for James and I to feel as though we have a quality of life together. I pushed James in his wheelchair through the crowded streets of downtown Toronto. This is an experience of its own kind. He also insisted on trying to walk to give me a break (with the back of the wheelchair as support), but found it exceptionally difficult. It is painful to watch James struggle to breathe. We took long breaks, but even still, it was impossible for him to take more than a couple steps. I felt the tears stream down my face with the cold as an excuse. I knew that James was trying to me, and that too, is a different form of hurt. We are both trying to protect each other. We both worry about each other. James, even at his weakest, is still trying to take care of me. I know I say this with a bias, but I truly admire the part of him that cares so very deeply for others, including myself, of course. 

We both loved the museum exhibition. We felt a reassurance that some degree of normalcy can still exist within our lives. We are always re-defining our "normal". I am trying to focus on the positive, but it is a conscious effort on my part. It does not always come naturally to me. There are days that I feel the weight of my exhaustion building into a seemingly insurmountable fatigue, but I continue to move forward. It is a strange feeling to watch the world continue to move around you, and to feel separate; that is, to be moving at a very different pace. My world is on hold. Our world is on hold. We are slowed to living within each and every moment, and rarely, beyond that present. I am grateful for the perspective, but I still struggle to make sense of the speed of the world around me. We are in a state of constant crisis, but there is a stillness that I struggle to define. It is an isolating feeling to no longer relate to the world at large. 

I love to be able to share this little space in the company of James. It has been more than a couple weeks since James' last hospitalization. There is a lot of be said about nearness. I am grateful to be able to help him to take care of himself. I am grateful to be part of his journey; a journey that now belongs to both of us. James is still very sick, and I feel as though I only really allow myself to grasp that reality on a certain cognitive level. I don't allow myself the emotional freedom recognize the severity of James' condition. A few weeks ago, I felt as though I would never find a sense of hope again. Now, I am only imagining a future together. I have been able to shift from simple acceptance to a place of hopeful resolve. It is more than wanting to believe that James' transplant will come in time. James' transplant needs to come in time. It will come in time. I refuse to imagine a future without him (at least not at this point).

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.

television show

James and I were filmed for a television show in September to help raise awareness about the need for organ donation and to help finance James' double lung transplant. The difference in James is startling to me. The filming was only a few weeks ago, but Jamie was able to walk at a fast pace, and to some degree, a long distance, without a lot of support. It is wonderful to hear the passion in his voice. The optimism and hope was ever present in those first few weeks. I would love to see some of that colour return to his face, along with those round (and o so pinchable) cheeks. 

The first video clip is unlisted here.  

Here is another clip from the segment:

 

hospital update

James has a bowel obstruction. This is very common for individuals with Cystic Fibrosis. He has been having gastrointestinal symptoms (to a lesser degree) for a few weeks, but James and I didn't consider a blockage. This was often thought to be the cause of James' pre-transplant nausea and vomiting episodes, but it was never determined to be a definite cause. The transplant team attributed his symptoms to his immunosuppressants. They had  made recommendations for a medication change to a coated version of one of his immunosuppressants, and a follow up with the St. Michael's Cystic Fibrosis Gastrointestinal Clinic. We have been the in the process of seeking coverage for the medication change, and making those appointments.

James had a really good day yesterday. He was able to eat small amounts throughout the day, and visit with a really good friend. She brightened both of our days, and was exceptionally helpful with setting up the new apartment. James and I feel very grateful for her friendship. She affirmed and validated a lot of my feelings. She reminded me that there is no shame in feelings of helplessness and hopelessness. It is hard to navigate the system as James' sole support and advocate, and I often feel alone in the process. There is comfort and security in knowing that I am never alone despite those late night feelings of loneliness. I am getting better at asking for help, and allowing others to help. Our time together was a reminder that James and I surrounded by a generous support system of loving and caring friends and family members. We are very fortunate.

James was feeling very optimistic about being discharged today. We ate breakfast together this morning, and James was feeling strong enough to shower, dress, and go downstairs for a coffee. Unfortunately, James' symptoms returned shortly after lunch. He was given some Gravol, and is closing his eyes in hopes of sleep. We are still waiting to see the doctor, but James no longer feels confident that he is ready to go home. 

We hope that James will still be able to start his pre-transplant assessment as an inpatient. We are scheduled for full days of tests and appointments on Monday, Tuesday, and Wednesday. We do not want to prolong the process, and of course, James and I are both anxious to be officially listed for transplant. His lung function is relatively steady, but it is not certain that it is stable. We will have to wait a few more days to differentiate between normal variation and a continued pattern of decline. We hope for the latter and focus on everything that is within our control. James and I always manage to enjoy being together. We find laughter and joy in the worst of circumstances. It is not difficult to give each other reasons to keep smiling. We are constantly reminding each other of the strength that comes from our ever-enduring love. (I woke this morning to a loving e-mail from James in gratitude for our relationship). There is nothing that James and I can't do together.

amy and jon

The Grid has very generously posted an update online to help raise awareness about the importance of organ donation, and to help James and I with our fundraiser to finance living expenses in Toronto. We are very grateful. The update reads as follows:

"My name is Adena, and I married James, the love of my life, on July 2, 2012. We were delighted to share the story of our first date in Dating Diaries with the psuedonyms ‘Jon’ and ‘Amy.’ James’ lung function started to decline rapidly the day after our wedding. He was diagnosed with bronchiolitis obliterans, a form of chronic rejection. He is down to 20 per cent lung function and struggling to breathe again. We had to leave our home in Victoria and return to Toronto to wait for a second double-lung transplant. We are leaning on each other for strength and love during this difficult time. We are seeking help to raise awareness about organ donation and to finance our living expenses in Toronto. More information can also be found on our blog and Facebook page."

James and I received our extensive list of pre-transplant assessment tests and appointments for next week. We will essentially be at the hospital all day on Monday, Tuesday, and Wednesday. We are relieved to be moving forward on getting James listed for a second double-lung transplant. We had our first appointment today. We left feeling very positive about the prospect of being put on the waiting list. James is an excellent candidate for transplant.

That being said, the last few days have been exceptionally difficult. James' lung function has continued to decline. It has been decreasing steadily on a daily basis since Friday. He is down to 0.83 litres (or about 20%). We are very scared. James feels constant exhaustion and fatigue. He sleeps a large portion of the day. He continues to struggle for breath on exertion. It is also becoming harder to recover from these episodes of breathlessness without feeling completely depleted (and defeated). James is doing exceptionally well with exercise and weight gain despite these difficulties. We will be purchasing a finger oximeter to measure his oxygen saturation and monitor his levels. It is difficult to accept that there are no treatment options left or available.

We are holding out for hope that James will receive donor lungs. The average wait in Toronto is 6 months, but there is a lot of variability in that statistic. We are focusing on everything that is within our control. We take it one day at a time. James and I are thriving in our relationship. We are only growing stronger and strong together. We are grateful for the importance of perspective. We truly have lives that are filled with fun and laughter. We sing together. We dance together. We find joy in shared moments of wonder and beauty in this world. We are glowing in the love of being together. 

We want to thank all our friends and family. We are surrounded by love and support. We have raised more than 50% of our fundraising goal. This will amount to almost 6 months rent in downtown Toronto. We are overwhelmed with generosity in all forms.

We are sending you all love, love, and more love.

pre-transplant assessment

James' case was discussed on Thursday for pre-transplant evaluation. He will start the assessment process during the week of October 15, 2012. This clinic is booked solid, but James and I will make ourselves available for all appointments, including last-minute cancellations. This does not guarantee that James will be listed for transplant, but it is a positive step forward. He remains a good candidate for transplant, but it is possible that James is stable enough to remain "inactive" on the list. That is, James would go through the process of assessment and evaluation, but he would not be actively waiting on the transplant list. This would ensure that all the necessary tests and information are in place for the point at which James' lung function declines further (or the risk of decline is deemed serious enough to require an active position on the transplant list).

We are both feeling a range of emotions. There is relief in knowing that James will be evaluated for transplant, but there is also a lot of sadness and fear that is compounded by the emotions of his first double-lung transplant. It is a lot to process, but James and I are ready to do this together. We just need to keep focused on living:

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.

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.

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.

one day to the next

[this was written last night, after arriving home from the hospital, forcing myself to eat dinner, and making an earnest attempt at relaxation].

o, this exhaustion is unbelievable. It is the type of fatigue that is not resolved through sleep, but hopefully, slowly over time, through a conscious effort at self-care, I will be able to move through my days with the ability to complete sentences and step without stumbling.

tomorrow, I will focus on housing. we have made phone call after phone call after phone call. no vacancies and expenses beyond imaginable for individuals with disabilities (and that is not to mention those barriers to employment and income). we found an apartment close to the hospital that is beyond our budget, but reasonable for the downtown core, and will offer a short-term lease. we have been advised to wait on signing a lease, because all potential funding would be dependent on James' listing as a pre-transplant patient, but at the same time, we will not find anything in the downtown cores within our range that is not listed on the bed bug registry as a cockroach hotel. James will need to be officially listed for transplant to receive any financial supports. we are still in a period of complete uncertainties, but this may not be a decision that can we can linger on. we do not want to put it on hold for too long, and end up without any housing upon James' hospital discharge.

although James has not started the assessment process for transplant, we have been told repeatedly that he seems to be a good candidate. the fear is that James may actually not be sick enough to meet the requirements. this is absolutely impossible to comprehend with a lung function of 25%, significant difficulties breathing on exertion, and an almost daily decline in weight. unfortunately, or rather, fortunately, his body is not showing distress in other areas. James has worked incredibly hard in the last 15 months (and longer) to build a strong and healthy body that is now compensating for the rapid decrease in lung function. this may become a barrier to being listed, at least, for now. I'm afraid that we will have to wait for him to deteriorate further.

for now, James is on his third miserable thymoglobulin treatment with improvements in tolerance and more appropriate medications available to treat the side effects of destroying James' delicate immune system. (we requested these in advance of the first treatment, but of course, the order was never made, and James was made to shake and shiver in the middle of the night while waiting for a doctor on-call to order basic pain medication and anti-emetics).

there has been no change in James' lung function for the last week. this is positive in that it is not a decline, and could indicate a level of stability, but at the same time, it doesn't speak to the possible hope of increase from the anti-lymphocyte globulin. but, James has incredible strength, and continues to be willing to make any and all efforts towards possible recovery of lung function. he has the enduring hope of an eternal optimist. to say that his strength is admirable would be a complete understatement.

with shorter days, light is fading earlier, and it is time to focus on rest and restoration. I am going to take pleasure in reading for pleasure. this is not something I was able to do in the last seven years as an undergraduate. good night, and more updates to follow.

another return to blogging

I often return to blogging after months or years of absence with a comment of observation that I only tend to resort to writing as a method of coping when I am struggling - and I am struggling, but not with depression. This is not a depression. This is a profound and overwhelming grief, or rather, anticipatory grief, at the rapid deterioration of my husband's health (and the difficulty of finding hope in a desperate attempt to focus on living). I deeply resonate with Dr. Kay Redfield Jamison's distinction and description of the differences between the experiences of grief and depression in "Nothing Was The Same." I am at a loss of words for this incredible pain, but I know that it is different than the lure of depression.

I also have a need to document these moments. I need to know that this was real. I have a deep fear that I will look back at these few short years, and I will not have memories. I am afraid that these years will be lost in a lifetime. I am afraid that I will lose James (and with him, all the love and joy and happiness that defined our relationship and that I have known). 

My former blogs have been mostly private, but I have decided to import blogs relating to James' journey with Cystic Fibrosis and Transplant (and our journey together in the last few years). We have also launched a fundraising website. The brief details of James' decline and status are written in the "Updates" section. (We have also linked to a facebook page in hopes of taking advantage of the social media network). 

That's all for now. I will make an attempt to write more in the coming days. Here are some photos from the magical night that was our wedding (because we are still glowing from that evening, and it is important to draw on those moments of happiness and joy for strength and hope from within the darkness):

acute rejection

It is early, but I'm awake to stare at this blinding screen, because I didn't sleep well. In other words, I could no longer stare at the ceiling (and prevent my mind was wandering). so, I made a cup of coffee, poured a simple breakfast of cereal and goat's milk, and decided to type a few lines before heading to work. 

(sidebar: I really should write about work more often. I am working with some very interesting children. It can be very challenging, but I am learning a lot from these experiences).

It seems that it is only during difficult times that I find myself with a need to write. My pile of adolescent journals should speak to that (and dark poetry written on scrap paper strewn throughout). 

The truth is that James and I are in pre-marital bliss. We are both glowing with joy at thoughts of sharing our lives together. We talk about the future with optimism and hope. We will be grandparents together. We will hike the West Coast Trail. We try to believe that survival is all about attitude. We tell ourselves that James will be the exception. 

The problem? We are not immune (pun-intended) to the realities of Cystic Fibrosis and post-transplant complications. James has had an exceptional year with (relatively) minor difficulties, and the most incredible gains in all areas of his life. We live our lives with gratitude for each and every day, but that doesn't change our resolve: James will not be a statistic. 

We weren't prepared to hear those words on the answering machine: James has rejection. It is acute rejection. It is only level one. (What does that mean?). It often is not treated, because it resolves on its own.

We don't know a lot more. The rejection showed up at his 1 year post-transplant bronchoscopy. We were not informed. It wasn't a concern. Then, James' spirometer readings started to decline steadily. It started with a 5% drop at his recent pulmonary function test (PFT). This progressed to several mornings with a 10% decrease in lung function. Yesterday, James had a 30% decrease. He went to get batteries in hopes that it was a malfunction of the machine. It wasn't. 

We called the transplant team and waited. I was scared, but I was (and am) trying not to panic. Acute rejection is treatable. It was caught early. Toronto is the best place to be. I am telling myself this over and over again. The doctors do not seem to be concerned. That must be a good sign.

The message systems allows for communication with the transplant team. We leave messages. We receive messages. We don't get to talk. We have to trust the team.

The wait for the phone to ring was reminiscent of James' 9 months with that pre-transplant pager. I remember the anxiety. I remember the uncertainty. Would the call come in time? It didn't matter the length of the wait. It always feels too long. It always feels urgent. The difference? We were waiting for good news. James would be getting his lungs. Now? We are waiting for information and a plan.

We are still waiting. The doctor was unavailable yesterday. James needs to go for more tests, but it is not safe for him to be at the hospital. Fridays are clinic days for individuals with burkholderia cepacia. It is a scary bug. It is highly communicable. It can have devastating (and often life-threatening) consequences. 

We might need to wait for Monday. We are good at waiting. James waited 10 months to qualify for transplant. We waited 9 months together with a pager on his belt. We were done waiting post-transplant. James was ready to live. We were ready to live together.

We know that we can get through anything together. Our first year together was a testament to that fact. We will do our best to enjoy the weekend, and stay distracted. We are so grateful to be able to participate in CF Canada's Great Strides on Sunday. We both met our fundraising goals. It will be great to give back to the community.

That is all for now. I have to go to work, find distraction, and focus on the positive.

a transplant journey in parts

almost a year ago, I started to write a journal entry about James' transplant journey. I worked on it for several weeks, but I never completed it. we will soon celebrate James' 1 year post-transplant lung-aversary. it is an incredible milestone. I would love to be able to finish his story, or at least, the story from the point at which I met James, and it become our story. here are the bits and pieces from many (many) months ago:

"it has been a while since the last update. time seems to disappear (and is easily replaced with the stress of every day life)."

"and so, where to begin? as always, there are no words, and I've never been very articulate (or, rather, I never feel very articulate). this entry has come together in pieces over the last few days, as I have been sitting by James' hospital bedside, watching him sleep, in complete awe of his strength and courage, and the wonders of medical science. it has only been a few days since his double-lung transplant, but, with much determination, he has been up and walking around (without oxygen) . . . ! he is still sleeping most of the day, but with each smile, and kiss, and, hours of hand-holding, I am beyond confident that he will continue to recover."

"I find myself in tears at random moments during the day. our wonderful dreams for a future together have suddenly become a real possibility."

"I think that the best way to describe this experience is as an 'emotional rollercoaster' of ongoing intensity. there is the guilt of leaving him at night, and the helplessness in his moments of pain an discomfort. there are the small complications that can manage to feel life-threatening. but, mostly, there is absolute joy and pride in each accomplishment and improvement."

 
"once again, I continue to write (with the eventual intention of posting online), and it is nearly impossible to find the words to even begin to describe this experience. it has now been nine days since James' surgery."

"I have made many attempts over the last few weeks to write this journal entry, but, yet, it remains seemingly possible to find the words to describe this experience. I thought I would start from the beginning, or well, the beginning for myself:

James and I met through an online dating site in June 2010. the connection between was us almost immediate. we blew bubbles on the grass outside of a cindi lauper concert. we read poetry out loud to one another under a tree in the park. we spent hours and hours (and hours) at used bookstores across the city. 

James had been in Toronto since November 2009 in hopes of qualifying for a double-lung transplant. I understand that those early months were a constant struggle, with several hospitalizations, and a lot of uncertainty about the future. I imagine it would have been difficult to continue to find hope.  

we were both attempting to live our lives one day at a time, and with gratitude for each and every moment together, we made a conscious effort not to take anything for granted, and truly appreciate the time we had together. we were living in the moment, for the moment, from one moment to the next. there was no certainty about the future.

James was eventually listed for transplant at the end of August 2010. His call came almost 9 months later on May 12, 2011."

it is extraordinarily difficult to look back at the photos from James' transplant. at the time, I don't think I really allowed myself to see the extent of his illness. I suppose it is all about survival.

Eva

Today, I am remembering Eva Markvoort.

Eva passed away on March 27, 2010. Eva's birthday was on March 31st. She would have been 26 years old. 

Eva was source of strength and inspiration for James.

Please visit: http://www.65redroses.com

 

Thank you, Eva.