leaps and bounds

James' progress has been absolutely astonishing over the last few days. It is impossible to describe all the minute details, but I will do my best to convey these leaps and bounds. (We are moving mountains here). 

James is awake and alert enough to be able to communicate again. He is able to advocate for himself and become an active participant in his own care. He is re-developing a sense of autonomy and independence in his self-care. He is further re-gaining a sense of normalcy through the establishment of a structure and routine to his days. It really is an exceptional change. It represents movement forward on several different levels. 

James has shown improvements (along with great strength and resilience) in all areas of concern. He is no longer on sedation, and is staring another slow wean from long-standing analgesia. His respiratory status is back on track with post-transplant recovery expectations. He is tolerating lower levels of mechanical ventilation support for longer periods of time with each consecutive day. His kidneys and liver function are starting to show positive signs of recovery from early indications of potential failure. His fluid balance has been trending towards the negative, and relieving pressure on his lungs from fluid overload. His gastrointestinal distress remains, but without the same level of concern. The list goes on. The message is the same: We are trending in the right direction in all regards. 

The news gets even better. (There is always more sunshine). James achieved a major milestone this afternoon. James walked this afternoon. He walked a marathon after two weeks with minimal physiotherapy and movement. It was incredible. He nearly passed out from the short distance, and earned a well-deserved afternoon nap, but James still had motivation and energy for arm weights, and five hours in a chair. There are not enough words for "remarkable" here. Instead, I will leave you with love, love, and more 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

post-transplant day one and two

I have been short of words for weeks. There has been an intense desperation with the weight of a looming depression. We were holding onto a shadow of hope. It seems impossible to articulate these overwhelming emotions. James is completely exceeding all expectation for re-transplant, and long-term ECMO patients. James has a chance. We have a chance. We will experience joy and happiness again. 

James came out of the OR at around 10:30am, and I was able to first look upon him at 2:30pm.  We were told that the surgery was within the realm of expectations for a re-transplant. James had a lot of bleeding during the surgery. There was a lot of scar tissue from the first double lung transplant, and James was on Heparin (an anti-coagulant) to maintain the flow of the ECMO circuit. He required twelve units of blood, and has had several more transfusions to maintain his hemoglobin levels. 

We were told that James would most likely remain on ECMO for twenty-four to forty-eight hours to allow his lungs to rest. The sedation was also expected to last for at least several days. James had made it through the hardest part of his quest for lungs. We would have a long road to recovery ahead. 

James' strength, determination, and drive have never been more evident. James was awake within hours, and mouthing "I love you" and "What happened?" This was not the only incredible feat and indication of progress. The ECMO circuit was removed at 7:00pm! There have been a constant of team members in and out of the room to send James best wishes, and affirm that James is doing even better than expectations. 

This morning, James was already looking better (and a lot less swollen). He has been removed from pressure control on the ventilator, and is on pressure support. He is being supported with 40% to 50% oxygen. (We had been on 60% to 100% for the last three months, in addition to 100% oxygenation from the ECMO circuit). He is very responsive to my voice and external stimulation, and of course, full of wide-eyed smiles. My world stops to experience James' gaze.

James was taken off sedation early in the morning, but within the hour, James was thrashing around and screaming in excruciating pain. The sedation was started again, but James has developed a high tolerance in the last few months. He wakes every few hours in a lot of pain. The team is working on getting him a PCA for personal pain management control.

I am feeling a range of emotions. It all seems very surreal. I am filled with an incredible hope for our future. I have not felt this level of joy in a long time. We feel very embraced by our families, friends, and communities. We are surrounded by love, light, and support. I read every comment, and I truly appreciate all the blessings.

dear organ donor

Dear Organ Donor and Organ Donor Family, 

There are not enough words to articulate our gratitude. How can I thank you for saving my husband's life? We will always be grateful for your generous and courageous decision during a time of incredible grief. We think about you each and every single day. You will forever be close to our hearts. We honor your memory in our every day life. We do not take a moment for granted. We live life to its fullest. 

We first wrote to you last year in February 2012. It was my husband's 28th birthday. It was a celebration of life. We would not have been able to celebrate without you. There was no other gift in the world better than to be able to celebrate another year together. We lit a candle for you, and your loved ones. We made a promise to honor you forever and always. 

My husband will be celebrating his 29th birthday in the coming weeks. We have not lost track of the preciousness of your gift, and your brave decision that allowed our future and dreams to become a reality. 

We are not allowed to share personal information with you, but I want to share the meaning behind your gift. My husband was diagnosed with a fatal lung disease at birth. There was no cure. Every single breath was a struggle. My husband was oxygen dependent for the two years before his transplant, and a double lung transplant was necessary for him to survive.

In the last year, I was able to marry the love of my life. It was a magical evening that was made possible by you. My husband was active for the first time in nearly a decade. We went bicycling, swimming, hiking, and even psuedo-camping on the family farm. We set up home together and made memories with friends and family. Our lives are filled with love and laughter. 

We are eternally grateful. We have not forgotten about you. Thank you for your gift. Thank you for the best year of our lives. We feel a deep love for you. We feel a special connection with you. 

May there be comfort and solace in the knowledge that you have saved my husband's life, and given him a quality of life not known to him. 

We love you. 

Thank you. 

Wife of Double Lung Recipient

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.

a year and a half lungiversary

Our lives are always beyond prediction.

On November 9, 2009, James moved from Victoria, British Columbia, to Toronto, Ontario in hopes of qualifying for a live-saving double-lung transplant. He was oxygen-dependent and struggling to maintain his weight about 90lbs.

James and I met in Toronto in June 2010. We formed an immediate and deep connection. It took James 10-months to qualify for transplant. He waited another 9 months on the transplant list. On May 12, 2011, James proposed before heading into the surgery that would save his life, and allow our dreams to become a possibility. In James' words, "I came for lungs, and I found love." 

Tomorrow, it will be James' 18-month post-transplant "lungiversary." It would have been impossible to imagine that James would be on this journey again within a few short years, but James and I do not regret a single day together. 

We will celebrate and honor the memory of James' donor, and that very generous and courageous decision save the lives of others during a time of incredible grief and sadness. We are so grateful for the gift of another year and a half together. We wrote a letter to James' donor family with overwhelming gratitude for an incredible year of health and happiness. As always, there were not enough words to express our gratitude.  

James' life was not only extended. He was given a quality of life that was reminiscent of childhood. We went biking, swimming, hiking, and camping. We filled our lives with laughter. (We still insist on dancing and singing on a regular basis). Our wedding was a magical evening in a celebration of life. There may be fear and sadness to be waiting for another life-saving transplant, but that does not negate the happiness and joy of best year and a half of our lives.

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:

 

assessment day two

We made it through the second day of assessment with a lot of tears. These appointments were mostly interviews and information-sharing about the realities of re-transplant. Re-transplants are rare for a number of reasons. The risks often outweigh the benefits for a large percentage of possible candidates. The statistics and survival rates are less than reassuring (and that is a significant understatement). There are always exceptions. James and I need to believe that he will be one of those exceptions. It is the only way to cope and get through the days.

It will be at least two to three weeks before a decision is made about James' acceptance or rejection for re-transplant. The third possible outcome is that James may qualify for a second double lung transplant, but it may be deemed too early for re-transplant. It is a team decision, but James and I have been told consistently in the last few weeks that he is a good candidate for re-transplant. The hope is that he will qualify for transplant, and be able to survive long enough for an appropriate match to be found. The highest and most acute risks will be during the surgery and in the immediate post-transplant recovery period. We can expect a lot more complications and a longer hospital admission. 

All that being said, James and I have no reason to believe that he won't make it. (We truly can't let ourselves think otherwise). He has enough strength for both of us, along with a positive attitude and a hopeful resolve. We will get through the decision-making process, wait as long as necessary for an appropriate match to be found, and James will survive a successful second double-lung transplant. We will be given the incredible gift of more time together. The limitations on that time may weigh heavily on my mind (and in my heart), but I am grateful for each day I still get to hold his hand and hear his voice. James is here right now. We need that to be our focus.

Please register to be an organ donor. There is a significant lack of available organs in Canada. A very small percentage of individuals die in a way that will allow for organ donation. I believe it is less than 1% of potential organ donors are eligible for organ donation at the time of death. Of that small percentage, every single organ donor can save up to 8 lives. Organ donors can also improve the lives of up to a seventy-five more individuals through bone, muscle and tissue donation. The first step is to talk to your family and friends. Open the dialogue. Registration is easy at http://beadonor.ca (Ontario) and https://transplant.bc.ca (British Columbia).

According to The Gift of 8 Movement, Toronto's registration rate is 13%. Thornhill and Vaughan are also lacking at 9%. There is also some great information available on the Trillium Gift of Life Network and the RecycleMe.Org.