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.

week of clinics (and back in hospital)

I wrote the following post last night with the intention of a positive conclusion to the week, but I will have to include a retraction of sorts. I have written extensively about the recognition that everything can change in an instant, and of course, it does. James was admitted to Toronto General early in the morning following a long and sleepless night together. I will update more about the admission in the days to come. Nonetheless, it is important to acknowledge the optimism and accomplishments of the previous days: 

It has been a week of clinic appointments. This translates into long days of waiting, waiting, and more waiting (and a couple of tests and appointments in between). We feel fortunate to have be seen within three to four hours of our scheduled appointments. We have come to expect these extended delays (without acknowledgments of the waits or apologies from the team). We have left the building in the past through dark and empty halls. We are always grateful to head home before the receptionists have locked the doors and closed the lights for the evening. 

We were scheduled to be at St. Michael's on Tuesday and Friday, and at Toronto General on Wednesday. James was also to be at Toronto General for others tests and physiotherapy (Transplant Gym) on Wednesday, Thursday, and Friday. It would be an understatement to suggest that our lives have revolved around the hospital this last week. 

Nevertheless, James continues to be stable (in the relative sense of the term). We are relieved that James has no signs of infection. (His chest x-ray remains clear. He has no fever or sputum). On the other hand, James' white cell counts have been low for a couple months. Several of his medications are being held in hopes of recovering these levels. He will also be given Neupogen shots for the next couple of days to help regenerate some of his immune function. These have resulted in excruciating muscle pain, but James always knows to manage his pain before it is beyond his control. 

On a more positive note, James, in his incredible determination, has been able to gain back a couple pounds of all the weight lost from his recent gastrointesinal episodes. He is eating a near three thousand calories every day, and truly pushing himself, despite a lack of appetite and low energy. We are both feeling very proud of his weight gain. We hope this upward trend will continue.

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:

 

Jamie is still declining in lung function on an almost daily basis. He sleeps a lot and is finding it harder to eat. We are surrounding ourselves with loved ones, and filling our days with laughter and joy. We take strength from those around us, and find comfort in the presence of one another. 

We will be in touch with the Transplant Team on Monday. We will also know by the end of the week whether Jamie is going to be listed for re-transplant. I am also hoping for a sense of James' prognosis, but I know that bronchiolitis obliterans is exceptionally variable and unpredictable for each individual. 

We continue to live from one moment to the next. We don't take a minute together for granted. I am filled with a lot of gratitude for James. He has changed my life in ways that I never imagined possible. We are not done fighting for each other.

short update before bed

We have good news and difficult news. The hard news is that James' FEV1 is down to 0.66 litres, or about 15% lung function. That being said, James and I are determined to keep fighting. The good news is that James' re-transplant assessment discussion has been moved forward to next Thursday (rather than in two to three weeks). This is because of his rapid decline and deterioration of quality of life. We are relieved that James' case is being made a priority for the Transplant Team. We are hopeful that James will qualify for re-transplant. The next phase would be waiting for an appropriate donor and a return to physiotherapy at the Transplant Gym. There is nothing that James and I can't do together. We just need to take it one day at a time.

James and I will be able to get a walker from a local charity-based organization on Monday. James will be able to use a walker on loan from Toronto General Hospital Transplant Gym for the weekend. We have also been able to locate a wheelchair with the help and generosity of a wonderful friend. An appointment has been booked to start the application process and interview for Wheel Trans. Wheel Trans is an accessible and direct local transportation system for individuals requiring mobility assistance. Unfortunately, Toronto does not have a very accessible public transportation system. Wheel Trans would allow James and I to travel throughout Toronto without the barriers of inaccessible streetcars and subway stations.

That's all for now. I'm heading to sleep. I will sleep well with gratitude for all of you. Thank you.

love. love. love.

assessment day three

We are done. We got through the last part. It was definitely the easiest of the pre-transplant assessment days (even with compounding of exhaustion from the previous days). We didn't have a lot of waiting between appointments. We returned home with time for me to go grocery shopping and pick up more household items. James is resting in bed. He perfectly content with a warm cup of tea (mostly cream and sugar with a small amount of tea), and video games on his computer.

James' recent decline has now made basic tasks impossible. He can no longer walk without physical support. The five minute walk to the hospital was extended to more than twenty minutes, with long breaks, and a significant struggle for breath. James can only walk five or ten steps without taking a break from feelings of breathlessness. He describes a pounding in his chest. It is hard to stand for any length of time. All movement is difficult, including showering, dressing, and household chores. There are many times throughout the day that James tell me, "I can't breathe," and all I can do is hold him close. We wait for his breathing and heart rate to settle to a comfortable rate. We try again together. I sense that James is becoming less confident in his own mobility. That concern then contributes to his feelings of breathlessness, and becomes a limitation in itself. James' quality of life is diminishing at a rate that doesn't allow a lot of time to process the changes. It has all been so rapid.

We borrowed a walker from the Transplant Gym for the walk home (and for the next few weeks). We will need to purchase some form of mobility assistance device. A simple transport wheelchair with be the least expensive of options. This was the recommendation from a financial standpoint, but James would prefer a walker. This would keep James relatively active (within limits, of course). We were aware of the possibility of this progression, but that doesn't make it any easier to come to terms with it all.

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.

assessment day one

We had an early start to day with the beginning of James' pre-transplant assessment. The first test was early in the morning at the Cardiac Radiology Lab. I could barely manage to stay awake in the waiting room. I closed my eyes to music for the first hour, and paced the halls for the remaining forty-five minutes. James emerged from the test with the same feeling of exhaustion and restlessness, but there was also a sense of relief to be moving forward with the pre-transplant process. We are closer and closer to our goal of being officially listed for transplant. We went directly to the lab for James' blood tests and ECG. We were amazed at the collection of fifteen vials. James was drained (literally), and ready for breakfast and medications. This, of course, is a positive sign towards to the direction of being discharged from the hospital.

I left him with the necessities (that is, a warm cup of tea with loads of cream and sugar, and access to the internet) and ventured across the street to collapse at home for a few hours. I'm learning to give myself permission to leave James at the hospital for the purpose of self-care. Sleep doesn't come easily with James in the hospital, and I need to listen to my body. I will not be a able to take care of James without also taking care of myself. I need an official prescription for rest and afternoon naps.

James will have more tests in the afternoon. The Pulmonary Lung Function Lab will do a series of lung function tests. We will both be interested in the results. It is very difficult to make sense of James' decrease in lung function without a simultaneous decrease in blood oxygen saturation. James' lung function is lower than pre-transplant, and James feels a strong sense of breathlessness with even slight exertion, but he still does not require oxygen. This is positive, but also perplexing, to some extent. These tests will be followed immediately by an appointment for a Bone Mineral Density Scan. At that point, I am certain James will be almost walking in his sleep.

It is a long day of being poked and prodded. It doesn't help to have to return to a hospital room rather than his own bed at home (with Ophelia curled up with us). These are exactly the days that require the warmth and comfort of loved ones. We will have to re-define intimacy to include shared hospital beds (without the tangling of cords, isolation precautions, and background of beeping machines).

James is fortunate to have been moved to a private room. We can close the door, curl up on his bed, and bring each other to laughter and tears without the fear of being disruptive to others. James has been known to belt out Meatloaf lyrics in the hospital (without the knowledge of a team of doctors outside his door). In the weeks post-transplant, I believe this impromptu karaoke was both an attempt at courtship towards myself, and a declaration of being ready for discharge. These are the moments that demonstrate James' strength (despite the difficulties ahead). There are always moments of pure delight at being alive. He is the epitome of living life to its fullest.

(On a side note, I am reminded of my Bubie. She has only been gone 8 months. She loved life to the very end. She found joy in all possible forms. We painted her toenails in the hospital, drew pictures together on paper plates, and shared afternoon tea. There was almost always laughter in the room). 

James has a deep level of acceptance for our circumstances. We will go through another long day of testing tomorrow, and again on Wednesday, and I know that James will still be smiling at the end of the day, and well into his dreams. He has taught me to do the same (or at least, I try my best). I hope that spirit never fades.

I'll be heading back to the hospital soon to share a dinner with my love. Here we are on Skype in the late afternoon:

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.

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.

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):