exhaustion

James has been pushing himself to the point of complete exhaustion. He has been falling asleep earlier in the evening, and often, the afternoon, and sleeping in to late in the morning (and almost afternoon). Yesterday, James was only awake for four hours (and could barely keep his eyes open). We were not able to do a spontaneous breathing trial, because of James' exhaustion. There has been a trend of progressive fatigue throughout the ventilation weaning process. It takes an enormous amount of energy for him to breathe independent of the machine.

The team has made a decision to slow down the aggressive weaning process. James will return to pressure control settings overnight. The machine will breathe for him in his sleep. This will allow him to conserve energy in his sleep, and achieve some well-earned and well-deserved sleep. James will be able to build strength and endurance through participation in physiotherapy. As always, it is all about balance. We continue to move forward, but at a different pace. It is essential to listen to your body.

James has been meeting all of his goals for moving forward. It is all very promising and hopeful. It is with absolute joy that I share James' accomplishments. James is no longer on TPN. This was a major leap of faith for James. He is getting all of his nutritional needs met through nasogastric feeds (despite a long standing history of nausea and vomiting episodes in association with feeds). This eliminates the risk of sepsis from TPN. It also starts the process of redeveloping the function of his digestive system. (James has not had anything by mouth in almost six months). James is also weaning down on his narcotics (with slow and careful pain management). This will help improve the function of his digestive system, and allow for weaning from his extensive bowel routine.

James' participation in physiotherapy is also impressive. He walks the entire unit every morning, and in the afternoon, James independently takes on exercise. He stands every hour to stretch and do exercises from the treadmill room routine. He is able to stand without support and remain standing for several minutes. He also does arm weights and leg weights. He is even considering the pedal bicycle for the afternoons. That is motivation and determination at its best. He is doing his best, and I am so proud of him.

morning calm

I continue to update, but in truth, there is not a lot to write. We are in a space of relative stability with some sense of calm. James is doing as well as possible given the circumstances. We recognize the gravity of the situation: James is being kept alive by machines. Everything can change in a second. We can never truly allow ourselves to rest or relax.

Nevertheless, I have moments of incredible gratitude. James is still here. He can laugh with me. He can communicate. He endures with motivation and strength. We have reasons for hope.

Nights remain very difficult for James with intense fears of death. He is afraid to close his eyes and never open them again. All the reassurance in the world does not seem to help. These are valid fears.

I arrive early in the morning to provide some comfort for both of us. I am always on the verge of tears in the mornings. I have an intense need to be with James (with the knowledge of his long and difficult nights, and my own longings). I look upon him, and feel an immediate reprieve from my own sense of panic. James curls up with his blanket, and allows himself to finally rest with some ease. I hold his hand in his sleep, or knit silently beside his bed.

We are together again in gratitude for one another. It seems that nearness is often enough to calm our beings. This must be part of the definition of love.

sleep (and waiting on news)

James is napping peacefully beside me. He closed his eyes more than five hours ago, but I know that he will certainly sleep still throughout the night (and struggle to wake in the morning). Our time feels too precious to sleep all day, but I know that James needs to listen to his body. Of course, I also need to translate this into remembering the importance of my own self-care.

This is a level of exhaustion that is impossible to describe. It is more than a physical fatigue. My body feels heavy with overwhelming emotions. There are times that the weight is replaced by numbness, and I get a reprieve from the intensity of these emotions. My eyes fight to remain open during the long days. I often nap with James during the afternoons, but I'm awake throughout the night. James' breathing is shallow and almost silent. I have moments of panic, and wake to reach over and feel his cheek or chest. His sleep is deep enough to forget these wakings by morning. In the morning, James and I curl into each other to steal a few more moments before starting another day of uncertainties.

We did not hear back from the Transplant Team, but I suspect James will receive a phone call tomorrow. Once a decision has been made regarding James' qualification for re-transplant, James will have another series of pre-transplant appointments. We will be assigned a pager (and celebrate "beeper" day). James will continue with physiotherapy at the Transplant Gym at least three times a week to build strength and muscle to support his post-transplant recovery period. The waiting will come with its own challenges, but I know that James and I will be able to wade through these waters together. We waited 19 months for his first set of healthy lungs. We can do it again. 

back at the gym

We are back at the transplant gym at least one day each week for some additional support with exercise. We are relieved that James' oxygen saturation levels have not declined with his recent decrease in lung function (and despite an increase in James' sense of breathlessness). He was able to complete the majority of his exercise routine (with a reduction in intensity). We are both exhausted. James also feels very weak. Naps have become standard in the afternoon, but the fatigue remains. For myself, I believe it is the emotional stress. On the other hand, James is coping with both the physical and emotional stress. We came across the following image and found ourselves in laughter:

 

It definitely resonates with his current state. It is clear that his body is working hard, and of course, James is always pushing himself in all respects. He has this incredible strength to fight for the best possible quality of life. I wish I could emulate his seemingly eternal optimism. In the least, I wish I could have a similar level of acceptance for the uncertainties and lack of predictability our every day lives.

That's all for now. It is time for that afternoon nap. It is at least one consistent aspect of our lives.

imagining a future

First, I feel to need to mention that sleep is incredible. It seems to that sleep, in addition to exercise (as I wrote about in a previous post), is also essential to obtaining any sense of normalcy in my life, that is, in terms of my ability to cope and function on a day to day basis. It is wonderful to finally be able to sleep again. James has been discharged from the hospital, and I suppose that all I needed was the comfort and security of knowing James is safe (and sound asleep) beside me.

I have been working really hard to re-frame my thinking, and I suppose, to some extent, to challenge the intensity of this grief, or in the least, to make more sense of it. I mean, I understand that that some degree of anticipatory grief is within reasonable expectation. James and I are navigating through a very scary time in our lives. We cannot avoid end-of-life discussions and decision-making. It is impossible to completely negate these fears (without knowingly lying to ourselves). Rather, James and I make all attempts to speak with a language of hope and optimism. I try to dissuade my feelings of grief with a focus on gratitude for each and every day I still get to hold James in my arms. James is still alive. I also allow myself time to grieve, because I believe in honoring a need to truly feel the true extent of my emotions. That being said, I need to be cautious about my tendency to become overwhelmed with emotions, and the depression that seeks to engage with any or all opportunities of vulnerability and fragility. 

I think that I am also grieving for a fundamental change in our relationship. This involves the ability to imagine a future together (as the title of this post alludes to). This is hard to explain, and I'm not certain whether I will be able to accurately articulate or express it, but I will make an attempt. I also believe that it is not something that is lost. It is a change that James and I can control. We just need to find a way to re-claim it within our current realities. We need to allow ourselves time and permission to grieve for the future from our dreams, but at the same time, there is need to create a different dream for ourselves. We may still be processing all this rapid change, but James and I should not limit the ways in which we imagine a future together.

Let me explain further. When I met James, I really had no ability to imagine a future for myself. I truly could not conceive of a future without the throes of depression. I didn't know that this level of love and happiness was possible. On the other hand, James was oxygen-dependent and struggling to gain enough weight to qualify for a double-lung transplant. James depended on the dreams of a future for survival, but it was difficult to remain positive with recurrent hospitalizations (and not to mention, the loneliness of being a in a foreign city). We both struggled to find hope. James and I did something incredible for one another: We imagined a future of our dreams together. We created dreams based on a hope for a shared future. We gave each other reasons to live. (I think it is important to make a distinction here. We gave each other reasons to live. This is different than being each others reason to live). We gave each other reasons to keep fighting. Thus, I truly feel as though imagining a future together is a fundamental aspect of our relationship.

This photo was the first of us taken together, a few months after James and I met, and already imagining the possibilities:

Here we are again in our first photo together post-transplant with endless possibilities for our hopes and dreams to become realities:

Our wedding was a testament to the possibility of these dreams. It truly was a celebration of life. The future of our dreams never felt more possible. It was only two short months ago, but James and I have spent few days since outside of hospitals. We went immediately from entering the next phase in our lives (and the beginning of our lives together) to a devastating crisis of potential death. I do not believe that we were naive, but there was certainly an illusion of health, or in the least, a sense of stability. James had an incredible year post-transplant with few to no complications. We were not prepared for his rapid deterioration.  

We both agree: We feel simultaneously very old and very young. We have had a lifetime of experiences in our two years together. 

That is also another important part of all this to place in context. In many ways, I think James and I were still recovering from the trauma of his first transplant (and the following year of long-distance relationship). I had emerged from the severity of my depression in our first year together (and the ECT that left permanent blanks in my memory), but the recent death of my Bubie left me feeling fragile (and vulnerable to another episode of depression). There was a lot of transition and change (to say the least). We were still putting the pieces of our lives back together. 

Now, James and I must create new dreams for ourselves, for each other, and most importantly, together. Some of these dreams may be the same as those from the past. We can find a balance between living one day at a time (and from one moment to the next), and creating a world for our future together. We don't need to let go of them all. It is the hope for something different that makes imagining a future together possible. We need that hope to the same extent that James and I need to focus on gratitude for every shared moment.

long nights

James had an overnight pass last night. It was a well-needed reprieve from the hospital (and the hospital is among the worse places to be with a non-functioning immune system). We have no structure or routine (or space of our own), but there is something to be said for the freedom to move at your own pace.

Tonight, I had to leave him in the hospital again. It is the hardest in the evening. I feel his absence the strongest. We will both have long nights. James will be awoken each hour to have his vital signs taken. His IV medications will be complete in the middle of the night. He will wake to the beeping of a machine, search for the call bell in the dark, and wait for a nurse to disconnect him. There will be continuous movement in the hallways and bright lights at all hours. James will listen to his body. He will be able to fall back asleep with ease after each disturbance.

I will have the company of Ophelia by my feet, but I will still feel the loneliness of a dark and empty apartment. She will remain close with each and every change of position and will not stray with my diminishing hopes of sleep. Insomnia has a tendency to feed into cycles of further insomnia. I will get into bed with the fear that I will be awake to hear the evening traffic slow to silence, and still be wide eyed with the rise of the sun. The bright lights will eventually seep in through the curtains, and I will welcome the streetcars and sirens as a signal to the end of this nighttime torment. I will start another day with forever darkening circles under my eyes. I know that I will eventually fall asleep. How long can I go without rest? Perhaps, I will sleep tonight. Regards, I will try (and Ophelia is already warming the bed).