nausea

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

ICU ramblings

I wish I could describe the heaviness of these emotions. There are no longer days without tears. It is impossible to ignore the realities of our circumstance. James and I are living with the constant knowledge that these could be his last days. We witness the daily reminders all around in the ICU. There are empty beds and mourning families. There are alarming machines followed with a rush of movement around the unit. There are emergency codes over the loud speakers. We feel the changes of mood on the unit. It can become dark and sullen. These incidents remain strongest in our memories. We hold each other closer and whisper words of comfort and reassurance. We make a conscious effort to re-frame our thinking and shift our emotions. We need to cope. We need to survive. We need to focus on being alive.

Yesterday, James had his first "good" day of the week. What does that mean in the ICU? It means minimal pain and discomfort. It means being able to advocate for himself. It means having a voice and feeling heard. James was able to move from bed into a chair, and remain there for a large portion of the day. He was able to do physiotherapy with the pedal bicycle and arm weights. He was able to distract himself from the overwhelming stimulus of the environment, and focus on reading and computer games. He had moments of genuine smiles and laughter. He had moments of independence and autonomy. We were together in calm. We were together in love. We were together.

pain

Tuesday and Wednesdays were hard days for James (and subsequently, for myself). He was in an excruciating amount of pain. His shoulder was very bruised and swollen from the ECMO replacement. Pain management became a serious issue. We were both advocating to the best of our abilities, but there were difficulties in finding the right balance. Pain medication can decrease respiratory rate, and James' respiratory rate was already low as a result of the sedation from Sunday and Monday. There was concern that the medication would cause James to stop breathing on his own, and James would require ventilation again. That being said, James and I both felt as though pain management should take precedence as a quality of life issue. It was a tough few days (to say the least). It took a while to feel heard, but with the help of Palliative Care, James' pain is finally under control.

James' pain has also vastly improved with a reduction in swelling and bruising. He is able to participate in physiotherapy again, and is largely back to his regular routine. There is no sense of normalcy in the ICU, but James and I have managed to structure our days in a way that allows the time to pass at a reasonable pace.

The wait remains exceptionally difficult. James and I continue to struggle with heavy emotions. That is a different type of pain all together. There is no solution in pill form. I no longer feel a complete urgency for transplant, because of the magnitude of fear for post-transplant complications. James is stable and functioning with some level of independence on a day to day basis. This will all change with surgery. We are coping with the unknown. We have to remain in present time. It is all to overwhelming and intense. It is all too painful.

passage of time

James was admitted to Toronto General Hospital four months ago on Christmas Day. He has been in the ICU for almost three of those months, and on ECMO for more than two months. It is his seventh admission since arriving in Toronto on August 31, 2012. We haven't had more than a few days without an in-patient hospitalization, or an outpatient hospital appointment. This has been the case for the majority of the last year. We live in the hospital. Our lives revolve around the hospital. We never imagined that this would happen. It has been devastating.

It has become harder with the passage of time. We live with an increasing sadness and fear for the future. We do not lose sight of the goal of transplant (and everything that it represents). We are grateful beyond words for James' organ donor and for organ donation. In a couple of weeks, James and I will celebrate his two year post-transplant "lungiversary". This would not be possible without the generous and courageous act of organ donation. We truly feel as though it is essential to celebrate each and every day that James is alive. This is especially the case as James awaits a second life-saving organ transplant.

The passage of time is always changing (along with our perceptions of the speed and movement of time). The longs days in the ICU can be seemingly endless. We are in a constant state of waiting. That being said, I cannot imagine a different speed of time. Time has become a precious measure of the space that James and I share together. These moments together have come to represent everything in the world to us. These moments are all that James and I have together. There are no certainties. There is only the present.

crisis

We are becoming experts on handling crisis (after crisis). Everything can change in an instant. Everything does change in an instant.

Yesterday, James' tracheostomy site was changed as part of routine maintenance. James was given sedation for the procedure. I watched his oxygen saturation levels decline and his breathing slow down. It was very frightening to watch James stop breathing, and I became faint. He was placed back on a ventilator for a couple of hours to support his breathing. I was taken to a quiet room, and woke a few hours later as James was coming out of sedation. He was very scared to wake to the force of the ventilator breathing for him. I held his hand with that familiar feeling of helplessness. James was soon alert enough to breathe on his own and return to oxygen support on the tracheostomy mask. The team was exceptional. I am grateful for the level of expertise and incredible care.

Tonight, I held James' hand once again for reassurance and calm. (James also held my hand in return of that same reassurance and calm). The phone rang late in the evening, and I learned that James' ECMO circuit was in failure. The circuit would require replacement. The primary functions of James' ECMO circuit are to remove carbon dioxide from the blood and for oxygenation of the blood. The blood circulates through the circuit based on a prescribed rate of flow. There was no longer a functioning flow. James was in danger of life-threatening complications.

I was allowed to remain in James' room for the procedure. James would remain awake with minimal sedation. There were two attempts to replace the circuit. These attempts were unsuccessful. There was a fury of action in and around the room. It was possible that James would require a return to the OR. This was the definition of crisis. We both felt an intense fear with the presence of tension in the room. I was trembling by James' side. We were fighting against time.

At this point, I have been made to leave James' room. James has lost a lot of blood and will require blood transfusions. The entire cannulation will require replacement. James will be put to sleep, and back on a ventilator to support his breathing again. I now sit alone in the ICU waiting room and wait for the phone to ring again. I can feel my heart pounding in my chest. I don't imagine that sleep will come easily tonight.

The wait for transplant continues to be a painful process. We have both become vulnerable in many respects. We go through the motions of the day with hope and optimism for a different future, but it doesn't prevent the realities of our circumstance. James has end-stage lung disease. He will not survive without a transplant. We are very aware that his stability has become relative to the moment. We cannot take a single of those moments for granted.

Edit: My apologies for my lack of articulation tonight. The ECMO cannulation replacement was successful. James is very pale. He will require further transfusions. I am wide awake with these realities of waiting for transplant, but also grateful for exceptional care.

agony and dread

We have no other words. It has been a long day of agony and dread. We are with heavy hearts. We feel deeply for the loss of another precious life. We feel as though death surrounds us. We continue to tread forward. We will not allow pain to replace love and laughter. We have each other to lean on. We are together. We have each other.

a day in the life

ECMO clot

We made it through the rest of Saturday without further issues. The bleeding at James' suture site has subsided, but not without a cost. We have been very fortunate that James' ECMO circuit has been clear from clots. This is rare for a patient on ECMO for this length of time. A clot has now formed as a result of those few hours without Heparin (blood thinner) to allow the sutures to heal. The clot will require close monitoring for growth and movement, but it should not impact the flow or function of the circuit. James is now back on Heparin with the hope is that the clot will slowly dissolve with time.

Clots are very common at this stage, but it is difficult not to feel concern. Reassurance doesn't soothe the intensity of our emotions. We make an attempt to let go of worries that are beyond our control, but fear is a constant shadow. It is hard to accept this level of helplessness.

James has been relatively stable. This seems to increase the magnitude for concern, or at least, our perception of the magnitude for concern, with each change in health status. I am able to recognIze on a rational level that circuit clots are not a major issue, but it is hard to reconcile that with the level of fear that I experience at an emotional level. Everything feels unpredictable, and to some extent, there are no certainties. We witness the realities of the ICU on a daily basis. It forces us to be painfully honest about our time together. It makes it harder to smile and laugh, but also makes smiling and laughter that much more important. It is a strange, almost paradoxical, experience. Our lives are on hold indefinitely, but everything can change in an instant.

I cannot end this blog post without a remembrance and acknowledgement of another death in the transplant community. My heart aches for this warm and loving family. We have witnessed too many deaths on the transplant list. This gentle and sweet man had become too ill for transplant. The wait was too long. He did not make it. No one should die waiting for transplant. Please, check your donor status, and talk to your family and friends.

morning chaos

I arrived to complete chaos this morning at the hospital. Last night, James had to get three new sutures to secure his ECMO. I held his hands throughout the procedure. He was comfortable and calm. We wished each other the sweetest of sweet dreams, and I went home without cause for concern. When I greeted James in the morning, I learned that James had been bleeding all night. (He is on a continuous Heparin drip to prevent clots from forming in the ECMO circuit. This prevented the suture site from healing). James was covered in soaked sheets, gauze, and bandages. He was nauseous again, and hugging a basin. (He now gets a standing dose of anti-emetics after four continuous mornings of nausea and vomiting). There was a surgical team in the room in attempt to stop the bleeding, and James' hemoglobin had declined to the point of requiring a blood transfusion. The ICU and Transplant doctors were also doing rounds on James. It was a lot of people in a scene of controlled confusion. I found my way past the closed curtains, and held James' hand. Everything has since settled, and James is fast asleep in the sweetest of sweet dreams (I hope).

realities of transplant

We are deeply saddened by the passing of another member of our transplant family. We share a story with this young woman. She had Cystic Fibrosis and developed chronic rejection following a double lung transplant. She received a second transplant a couple of weeks ago after waiting for re-transplant on ECMO in the ICU for six weeks. We send condolences, and love, love, love, to her family and friends.

These are the realities of transplant. These are the realities of re-transplant. We avoid these discussions. We make our best attempt to focus on the positive. It doesn't change these realities. The median survival for re-transplant is two years. A median is the common measure rather than an average, because of a high percentage of deaths in the immediate post-transplant period. There is a very high risk of complications. This is especially the case for an individual in James' position (in the ICU on ECMO for the long-term).

It is impossible to completely optimize an individual for transplant in the ICU. James' prognosis becomes worse with time. I cannot deny these realities. What does that mean for now? It means that every single moment together is precious. We cannot take a moment for granted. How do we make the most of our time together in the ICU? It is really really difficult.

Toronto Maple Leafs

James Reimer of the Toronto Maple Leafs has lifted James' spirits with a signed jersey! Thank you to Sarah and Keith, CBC, James Reimer, and Toronto Maple Leafs, for making this happen! We need to find a way to raise organ donation awareness!

Love, love, love!

atrium adventure!

We are still here and still waiting for transplant.

I have come to hate Monday mornings (along with the rest of the world). Weekends are structured at our own pace. We have some degree of quiet and calm. We might even get thirty minutes without interruption. I complain about the slow process of constant waiting (and waiting), but I have come to enjoy the slow pace. It represents more time together. On Mondays, it starts all over again with the addition of a constant stream of people in and out of the room. It can become chaos. Everyone arrives at the same time demanding attention. There are groups of up to twenty people on rounds in discussion about James. I join the team in discussion, but often, with tears running down my face.

Mondays also represent another weekend without a transplant. I wake every morning with thoughts of the possibility of transplant for the day. I go to sleep every night with thought of the possibility of transplant for the night. It doesn't happen. It hasn't happened. It has been eight weeks of "soon" (while the days increase in length and hope starts to fade). As a friend said, "It will never be soon enough." Will we wait another week? It doesn't have to be a weekend. Weekends are just more probable. When? It is impossible to know.

In the afternoon, James did his treadmill routine followed by an excursion to the hospital atrium! This was a first for an MSICU patient on Extracorporeal Life Support (ECMO). It took several weeks of encouragement to build up to this adventure. There was a team of eight individuals to manage the equipment. James was finally able to leave his room. We bathed in the warmth of the sun for a good fifteen minutes. We feel very fortunate to be in the exceptional care of a team of dedicated professionals. James' spirits were lifted by the simple pleasure of sunshine and open space.

weekends

I write to the background noise of beeping machines and high flow oxygen. We are feeling rather grey on this dreary and rainy morning. We get our hopes up for the weekends. There seem to be a lot more transplants on the weekend. We don't want to set ourselves up for disappointment, but there also needs to be a hope that seems possible, or real, at this point. I am not holding my breath, but I still sleep awaiting a phone call. It doesn't come. It doesn't come fast or soon enough. How long can we continue to go on? As long as necessary, I suppose, but it definitely does not get easier. The difficulty seems to increase with the knowledge that each day in the ICU comes with a higher risk of complications for both pre and post transplant. I can't ignore that reality. Otherwise, I would have to lie to myself. We could be here for several more months.

How is James? James is coping with incredible grace. He still has moments of complete fear, and waves of anxiety that leave him breathless. His kidney function is improving again (after some concern a few days ago). He has developed severe pain in his back, knees, and hips. Palliative Care is helping to manage his pain.

We continue to receive support from friends and family, and generosity and kindness from strangers. The transplant community at Toronto General Hospital is also an exceptional group of individuals. We feel very grateful to be so very loved.

why not James?

Re-transplants have a very high mortality and morbidity rate. These transplants would not be done without a hope for success (and previous positive outcomes), but there is a precarious risks versus benefits balance. It is more complex than finding a perfect match of blood type and size. James truly needs a perfect set of lungs. The surgeons will not accept a set of lungs that have any damage or exposure to infections for James, because James is already immunosuppressed and at high risk of bleeding (from scar tissue and ECMO). This further narrows the already limited donor pool to search for an appropriate match.

There is also a serious shortage of available organs for donation. We need to open the dialogue. We need to bring these issues into the public consciousness. Please talk to your family and friends. James and I are among 1,500 Ontarians awaiting a life-saving transplant. One person dies every three days awaiting transplant. We have seen many deaths in the last few months. No one should die waiting for an organ donation.

update

We made it through the long weekend without significant issues or changes. James remains as stable as possible. The long days in the ICU have become weeks and months. We are painfully aware of the passage of time (and the increasing risk of complications). We are forced to have end of life conversations of a different nature. James may not survive transplant. This is not the reality we chose to focus on, but it cannot ignore it either. 

There have been several transplants in the last week (including several lungs over the long weekend). We celebrate with our transplant "family" these incredible successes. We also feel the sadness of our wait.

James' days continue to be structured by physiotherapy. He is still able to do between five to seven minutes on the treadmill. He is improving in strength and endurance. He can now stand up with minimal assistance, and remain standing for a few minutes with support. He sits in a chair for four to five hours, and will dedicate time in the afternoons to more physiotherapy with arm and leg weights. I am incredibly proud of his commitment to his health. It is really impressive at this delicate stage. 

We have to really push ourselves to remain positive and focus on gratitude. This is a lot harder in practice, and is becoming harder as the wait continues to wear on our spirits. We need to believe transplant will be soon (without defining "soon"). 

What are we grateful for? 

We are grateful for access to universal health care. 
We are grateful for advances in medical science.
We are grateful that James is alive and awake. 
We are grateful that James can communicate.
We are grateful that James and I can laugh together.
We are grateful that James and I can smile together.
We are grateful for evening cuddles in James' hospital bed.
We are grateful for organ donation.
We are grateful for hope.