Wednesday, December 25, 2013

merry christmas!

I cannot believe that the year is coming to an end, and James and I have a world of possibilities ahead for a future together. We experience the world through a lens of gratitude. We are always acutely aware of the alternative. We are not without our own difficulties, but James and I have the advantage of perspective. We can always re-frame our situation and circumstance. James is alive. We are together. There is nothing else that compares or holds the same value. Every day is a good day.

It has been a hard month in our Cystic Fibrosis and Transplant families. James and I are thinking about all of our dears friends. We know the ache of those awaiting transplant, away from loved ones, and without a certain future. We feel for those recovering from transplant, healing on all different levels, and facing the realities of post-transplant complications. We are deeply saddened by the passing of some exceptional individuals. We know that the absence of loved ones becomes increasingly palpable during the holidays. We remember the anniversaries of those lost in past years. We fight to reconcile our grief with the spirit of the season.

We are sending our love to each and every one of you. 

We wish you a joyful holiday season. 

We hope that you are surrounded by the comfort and warmth of your family and friends. 

love. love. love.

(James has been unable to complete his 6 months post-transplant assessment. We will update again in January. James continues to heal).

Friday, November 29, 2013

six months!

We made it. James is 6 months post-transplant (re-transplant). Our hopes for a future together are starting to feel possible again. We have grown together, in strength and courage, and those lingering fears are starting to fade into the background of our daily lives. 

The second transplant has been different on so many levels, and in many respects, a lot harder. We still wear the scars of James' long ICU hospitalization. James is still recovering from the physical aspects. He has overcome the major challenges of re-learning the basics, from being able to independently sit and stand, to walking short distances, and finally, being able to engage in intense pulmonary rehabilitation. James loves working out at Royal Jubilee Hospital in Victoria. He continues to challenge himself to push beyond the mental limitations of years of breathlessness.

James' nutritional status has also seen vast improvements. We no longer sit down to meals with fears of nausea, vomiting, and other gastrointestinal distress. James still copes with rare episodes, but these pale in comparison to James' past, lasting only a few hours, and without substantial weight loss, or interference with James' medication regime. He continues to aim for 3,500 calories every day in hopes of weight gain. We would both feel a lot more comfortable with a "buffer" for possible illness and weight loss.

We will need a lot more time to heal from the mental and emotional scars of the ICU. We both find it very difficult to think back to those months. It is almost impossible to discuss those months, or even to look at the photographs, without experiencing significant distress. For myself, I continue to live with some degree of grief, or rather, anticipatory grief. It is an ever-present reminder of James' morbidity, and although I work to remain positive, it also speaks to James' mortality. I am haunted by these memories in the form of nightmares and anxieties, along with physical and emotional fatigue. These realities do not disappear at discharge.

All the being said, James and I are absolutely in love with the "normalcies" of every day life. We feel a constant sense of gratitude and awe in the sharing of small joys. There is no comparison to any past that doesn't reinforce these incredible emotions. James is alive. James is alive. James is alive. Each and every single day warrants celebration. 

How is all this possible? Organ donation.

We love our extensive (and extended) Cystic Fibrosis and Transplant families. We want to be the voice of hope. 

Organ donation saves life.
 

Sunday, November 24, 2013

photo dump!

James is almost 6 months post-transplant. This is a major milestone in the world of re-transplant. We promise a detailed update in honour of this achievement in the coming week. Here are some photos from the last month at home (in no particular order):
feeding the harbour seals
James' first hay ride!
bundled up in our crochet scarves from my cousin in Israel
beautiful clear day on top of Mount Tolmie
riding bikes at The Inside Ride for Coast to Coast Against Childhood Cancer in honour of Tamara (We love you, T!)
looking forward to Halloween
hiking along Mystic Vale at UVic
Vincent Van Gogh and Frida Kahlo for Halloween

Thursday, October 17, 2013

home sweet home

I am out of excuses. I can no longer avoid an update. I suppose I am developing my procrastination skills in preparation for graduate school. In truth, I rarely turn on my computer, and I do not feel an immediate or cathartic need to write. Then again, I think it is important to document our process and journey through the worlds of Cystic Fibrosis and transplant. These memories are a precious reminder of the precarious nature of our lives. It is through this perspective that James and I are able to let go of sources of stress, and focus on the happiness of, well, being alive (and being alive together). There was a period of time that I wasn't certain I would ever be able to feel a form of happiness again. We are so relieved to be back into the normalcy of our daily lives.

I did not realize that I have yet to post from home. (My sincere apologies). James and I are back in Victoria. We have been home for several weeks. We are taking is slow, taking deep breaths, and taking it all in. We are filled with complete gratitude for each and every day together, along with our loving and supportive community of friends and family, and of course, James' organ donor, whom without, none of this would be possible. 

We spend a lot of time in nature (as the weather allows), and a lot of time enjoying the freedoms and luxuries of leisure time. We do a lot of cooking and baking together, and are slowly working our way through the collection of cookbooks at the local library. We are still in the mist of nesting in our little home. There is a lot of cleaning, renovation, and organization to be done, all in time, and without pressure. We are also developing a taste for thrift shopping; a habit that cannot be supported on a disability assistance. I will be returning to work on a casual basis with much excitement and enthusiasm. 

My graduate degree has been deferred for September 2014, and I cannot begin in January without re-application. I still hope to connect with my graduate supervisor in the next few weeks, and start to build that relationship. James is also looking at the possibility of non-degree credit courses through correspondence or online courses at the University of Victoria.

Speaking of James, I continue to feel wonder and awe for his courage and strength, and of course, his incredible drive and passion for life. James' recovery has been nothing short of miraculous. I have no other words. Aside from the day-to-day realities of Cystic Fibrosis, and of transplant immunosuppression, James is almost as healthy as after his initial transplant. He has re-gained his independence, and through pulmonary rehabilitation, James is continuously building strength and endurance. We spend very little time in hospitals, and at doctor's appointments, and I don't suspect that will change in the near future. We feel very blessed.

Here are an insane number of photographs from the last few weeks at home:

o, and an article from the Times Colonst on October 14, 2013!

Tuesday, September 10, 2013

photos!

We made it through the dread of three months-post transplant assessments. Most of the results are back without indication of rejection or infection. We have been given permission to book a flight home. We are absolutely thrilled. We have been in Toronto for over a year. We are very ready to return home to our little nest. It still seems surreal on some level. 
James has a love fest at my father's house.
James' final test for his three months post-transplant assessment. He's never been happier to have a bronchoscopy.
We celebrated Rosh Hashanah with my family. It was a very different holiday compared with last year. There were still some tears, but it was wonderful to be celebrating in health.
"Can we go home yet?"

Friday, August 23, 2013

living in the moment

I don't write very often any more. I suspect that trend with continue. I often start a post without a central theme or idea, but rather, a simple desire to write and record. I am left with random sentences, disconnected thoughts, and miserable attempts to articulate a range of emotions at various ends of the emotional spectrum. In truth, I suppose that there is a lot less to write about, and that, in itself, is very positive. 

We are settling back into some form of normalcy. It is our pleasure to adopt a monotonous rhythm to define our daily lives. We don't need the thrill of living on the edge of survival to motivate ourselves to feel alive. We accept an ebb and flow that allows for change and circumstance beyond predictions. We embrace the uncertainties of the future (and reserve our expectations for the immediate future). 

That is, James and I live in the present. I love being able to live in the moment, and from one moment to the next. That was not always the case. We were forced to live from one moment to the next. It was a means of survival during those long pre-transplant months. Now? It is a conscious choice, or rather, a shift in perspective. It is among the most important lessons of our experience. It is a form of freedom to be able to accept that which is beyond our control. 

We still have fears and anxieties, but James and I do not allow them to define our lives. We reserve our energies. We take advantage of the present. We appreciate these moments with incredible depth, because, well, James and I live with the foreboding knowledge and awareness that this could have been different. We could have had a very different outcome.

How can I explain this level of gratitude? Our lives will never be the same. We experience everything in relation to the alternative. Survival was never a guarantee. 

James might be nauseous, but James has to be alive to be nauseous. 

James might be short of breath, but James has to be alive to be short of breath. 

We accept it all over the alternative. We are forever grateful for another chance at life. We want all these possible and precious moments. There will never be enough of them.

Tuesday, August 13, 2013

packing

I packed four boxes this afternoon to ship our belongings back home to British Columbia. There will definitely be another three to four boxes to pack. We have managed to accumulate a lot in this last year. We had twenty-four hours to pack and get on a flight to Toronto. We arrived with a single suitcase, large backpack, and a miserable feline (with few thoughts for household necessities, or winter preparations). Our comforts from home were shipped in the following months, along with a lot of thoughtful gifts of support and encouragement from family and friends in different parts of the world. We managed to create a reasonable home environment in Toronto, but James was rarely outside the confines of Toronto General Hospital, (spare a few weeks here or there).

I am proud to report that I am leaving with a single box of books. That has been a serious act of self-control. Of course, I was rarely able to focus enough to read during those long months, and I am starting to embrace the convenience of e-books. On the other hand, I cannot make the same claim for my accumulation of knitting projects. We are thoroughly prepared for a rare winter storm on the West Coast. The rest of these boxes are complete with miscellaneous art supplies, board and card games, and gifts from the last year of holidays and celebrations. 

A large majority of household items and furniture will return to the street. Toronto has been very generous with curbside furniture in reasonable condition. Spread the world in the transplant community: James and I have a lot of household basics to spare and share. We bought everything from garbage cans, to a broom and mop, baking utensils, and a cutlery drawer organizer. We discovered the need for a can opener after a long day at the hospital. A corkscew was also a necessity for survival. We would love to find these items a home rather than send them to a landfill.

This is the first major step in preparation (and acknowledgement) of our move. I feel the excitement starting to build, but I also feel very disconnected and almost mechanical in preparation for our move. We are still in shock. There is a lot of disbelief. We are only beginning to surface from the painful experiences of this last year in Toronto. We want to be able to completely embrace James' health, but I am waiting for the fear to subside. 

We move with cautious optimism for the future. James has only been well for a relatively short period of time in comparison to the last year of living on the edge of survival. We are confident that James will continue to heal, but it is exceptionally hard to let go of the past. I suppose that James and I also need to pack away these memories. They should only serve as precious reminders of the precarious nature of our lives. This is an essential perspective to continue to live with gratitude for each and every moment together.

I cannot end this post without a word to James' health. There have been few changes. James' immune status is a lot better in regards to the dangers of low white cell counts. We are also seeing improvements in James' blood glucose levels with on-going Diabetes Education at the CF Clinic. He is a lot more stable with the addition of a second type of insulin. His physiotherapy regime includes regular increases to frequency, duration, and intensity of exercise. His lung status remains the same with a slight increase in capacity for exhalation. 

The largest concern is James' nutritional status and weight loss. He continues to face daily episodes of nausea and vomiting, and has to force every bite due to a complete lack of appetite. This should not come at a surprise. James has long-standing gastrointestinal issues. He also has to re-learn the use of his digestive system after nearly seven months on Total Parenteral Nutrition (a nutrition delivery system directly into his veins). He has been doing well the last few days with high calories smoothies and milkshakes. It seems to be a lot easier to manage liquids.

Finally, a word from James: 

Hi everybody, 
Thank you so much for all your support. I can't wait to be back in Victoria and to see all my friends again.
Love, love, love!

Tuesday, August 6, 2013

home in the distant future?

I confess. I still have not taken photographs, but the intention is still there. We are busy. We are busy living. We are simply loving all our time and enjoying the sweet moments together in our shared space. A few hours at the hospital here or there do not ruin the day. We read together in the park and peruse bookstores, go for evening walks (with the incentive of ice cream on a summer night), cuddle up with movies (and our latest discovery of pure deliciousness: popcorn drizzled with chocolate), attend to our very demanding feline, and are re-discovering a love for cooking and meals together. (It shouldn't be a surprise that I am the one gaining all the weight that falls from James without a constant stream of calories). 

What else is there to share? The Transplant Team is pleased with James' progress (and there is no reason to argue). James remains a celebrity at the hospital. We love being able to share in his health with his dedicated team(s). We meet ICU nurses in the elevators, perfusionists by Starbucks, and doctors in the hallways. Everyone glows with happiness for a real success. There are always a lot of hugs and smiles, and even some wet eyes. We have come a long way from our seven months in hospital. It is a relief to be able to leave the hospital with James by my side. 

Other news? James continues to excel in the Treadmill Room. He has doubled his time on the treadmill and stationary bicycle, and increased all of his weights. We continue to navigate through an insane schedule of tests and appointments. James and I are still holding out for hope that his lung function will improve with time, but that is not to suggest disappointment or discouragement. We are on the right track and moving in the right direction. The same can be said about all aspects of his health.

Did I mention the best news of all? We have been given permission to head back home to British Columbia after James' 3-month post-transplant assessments. That's right. James can complete his mandatory physiotherapy back in Victoria. We are going home in about a month. Can you imagine? It is completely surreal. I don't think I can even begin to process the last year in Toronto. It is still a shock. I am still in shock (with some ICU-induced PTSD for the sake of being pathological). When will it feel real? Will it take an airplane ticket (and a miserable feline under my seat)? What about sleeping in our own bed? How with Dorothy, Xanadu, and Bombay react? (I am certain it will be with feline indifference). We are thrilled, to say the least. 

Thank you for coming along for the ride. Love, love, love. 

Tuesday, July 30, 2013

good news for a change

I have been neglecting the blog. I am completely out of the habit of writing. I have been composing in my head for the last week, but I haven't been able to get myself to start. I suppose it is wonderful. I no longer need a source of daily catharsis. We are insanely busy with hospital(s) for appointments, tests, physiotherapy, and so forth. We are loving on each other in between, and regaining a sense of normalcy and routine. It is so wonderful to share a space together again. 

This will be a brief version of an update, but I will definitely make an effort to get some photographs on here in the next few days. 

James is at physiotherapy three times a week. He continues to build strength and endurance. His determination is as strong as ever. He no longer requires a walking aid to get back and forth from the hospital. We only use the wheelchair for long distances. I continue to watch in complete awe. The changes are nothing short of remarkable.

We also have weekly Transplant Clinic. These are long days at the hospital with a succession of tests, and a lot of waiting around (and that is an understatement). There are no major concerns with James' health. His lung function is at 40%, and should improve with time to completely heal. There are also some pockets of fluid in his lungs that are indicative of months in bed. We expect this will also improve during the recovery process.

James doesn't have an official diagnosis of Diabetes, but it is a very common post-transplant complication (and for individuals with Cystic Fibrosis). We have been going to Diabetes Clinic for education. James is getting comfortable with managing his blood glucose, carbohydrate counting, and administering insulin. We are still hopeful that his blood glucose will decrease with a reduction in his steroids.

We are also being followed by the Cystic Fibrosis Clinic, G.I. Clinic (for Cystic Fibrosis), and by Palliative Care to manage James' medication withdrawal. Our calender is very full, to say the least. We are thrilled. You have to be alive to go to appointments. 

We are lighter in our steps. We are laughing a lot more. It is getting easier by the day. We are moving forward. We still function a single day at a time. We have gratitude for a lifetime. 

Sunday, July 21, 2013

home, alas

A: James is home. He came home on Friday night. It has been a long seven months in hospital.

J: I still can't believe I made it.

A: It is absolutely surreal. I wake in the night to look at him. It is amazing to have him home, beside me, and alive. James is alive.

J: I am just happy to be home and sleeping in my own bed.

A: We anticipate challenges ahead of us, but these will pale in comparison to the last few months. James is still very weak, and becomes short of breath on exertion. He has lost a lot of weight in these last few weeks. Nevertheless, it has been amazing to witness James' daily progress. Only a few months ago, James couldn't put on a pair of socks, or move from sitting to standing without needing five minutes to recover. I love watching him move around the apartment without the constraints of oxygen tubing. This is freedom at its best.

J: I am really looking forward to physiotherapy and getting back in the habit of exercising 3 times a week.

A: We will still be at the hospital every day of the week. It will be exhausting, but I am looking forward to the transition back to some form of normalcy. I feel lost amongst the changes, but these are changes that deserve embrace.

J: I love being home.  I don't know what else to say, I am just super happy with how things are going.

A: It is truly unbelievable.

J: Thank you to everyone, including my donor, for all your love and support!

A + J: Love, love, love

Tuesday, July 16, 2013

discharge from hospital

We have wonderful words to write. Home is no longer an abstract concept of the distant future. James may be home by the end of the week.

There has been a slowing down, and with that, an awareness of a different form of exhaustion. It makes it difficult to write. We are both very emotional with the acknowledgement of memories of the last year in hospitals. It is impossible to process the grief of these last few months. There has been a significant trauma. We will both need time to heal, but in that, James and I look forward to be able to look back on these aches.

The challenge remains to regain weight in the face of on-going nausea and vomiting. James is no stranger to lack of appetite. The threat of force feeding always looms in the background with each gentle encouragement of "one more bite." This is all within the realm and realities of Cystic Fibrosis. These difficulties pale in comparison to the last six months. That perspective allows James to push through the discomforts. 

We held onto hope. It was always on the horizon.

Thursday, July 11, 2013

good-bye ICU

James is out of the ICU. We are back on the Transplant Unit. (We skipped the ACU Stepdown Unit). It has been an emotional ride, to say the least. 

What is our next goal? Home. 

We will write more in the coming days. Good night, for now. 

love, love, love.

Tuesday, July 9, 2013

progress

James is moving mountains again. He is determined to thrive. It was a difficult week with the re-emergence of James' nausea. We have some intermediate resolve with a return to feedings and a bowel routine. We can expect further episodes of gastrointestinal distres, but James will not allow it to impede his recovery process. Here are some highlights from the last few days:

James is no longer on the ventilator during the day and night.

James is "corked" at his tracheostomy site, and breathing on his own (without oxygen support).

James is walking several times a day.

James is walking short distances without a walker.

James is wearing clothes again, and has been able to shower again.

Best of all? James is being discharged from the ICU! We are being transferred to the Transplant Acute Care Unit (Stepdown) on Wednesday.

Sunday, July 7, 2013

An Update From James

Dear supporters, James here updating from the hospital. Things have improved dramatically since the last update. I am no longer nauseated, nor am I suffering from dystonia. I am back up to my goal rate of tube feeds, so my nutrition is much better. I am receiving medication through my nasal tube. Adena and I have made trips out of the hospital room with the help of our nurses. My tracheotomy is corked, and I am off the ventilator. I am only on 0.5 litres of oxygen through nasal prongs. I am optimistic and I am looking forward to the coming week. It looks like I am going to be moved to the step down unit where I hope to make further strides towards getting out of the hospital. I am able talk and get dressed without running out of breath. I am wearing real clothes instead of a hospital gown. I am feeling very emotional these days, and although my memory is very spotty, a lot of moments are coming back to me from the previous year is hospital. I am filled with love for my wife and family, and everyone who has helped me to get to this point. Thank you all for reading, and I will keep updating in the future. xoxo, James.

Wednesday, July 3, 2013

dystonia

It has been difficult to write. I suppose there has been an element of discouragement. There is a sadness that weighs heavily on my shoulders. I want to be able to seek catharsis through writing, but I am reluctant to write without being able to focus on the positive.

The return of James' nausea and vomiting has been very difficult. Everything was put on hold again. James started to move backwards in several regards. He is back on an IV infusion of pain medication. He has not able to get out of bed throughout the episode to participate in physiotherapy. There has also been discussion about TPN following five days without nutrition. This should not detract from his astounding progress, but the nausea and vomiting easily lend themselves to a feeling of endlessness. We desperately want to continue to move forward. We desperately want to be home together.

Yesterday, James and I had hoped to be able to celebrate our first anniversary, but James was still miserable with nausea. There were a lot of difficult and conflicting emotions. We look back on the last year together with gratitude for one another and complete amazement at James' drive to survive. We share a lot of wonderful memories, but also a lot of pain and hurt. There is a lot of trauma in the transplant process. We have lived with ever-constant fears. We continue to live with a shadow of uncertainties. It makes our time all that more precious. It is an important perspective. We cannot take a moment together for granted. Everything can change in an instant, and it does.

Today, James' nausea was seemingly on the path towards resolve, but it was a frightening afternoon. James had a dystonic reaction to a last resort anti-emetic treatment. He has had dystonic episodes in the past to several different anti-emetics, but it was thought that James would be safe with very small doses. It was a mistake. It will never happen again. James' entire body started to shake with incredible muscle spasms and rigid jerks. He arched his back in bed, and started to distort into uncomfortable and repetitive positions. His jaw trembled and threatened dislocation. He had no control over these movements. He pleaded for help over and over again. He squeezed my hand with horrible strength. It took nearly an hour and several doses of Benzatropine and Benadryl to settle.

James also had a tracheotomy change in the late afternoon. This has become a rather routine procedure, but is fraught with its own discomforts and anxieties. James requires high doses of sedation that tend interfere with breathing, and lead to mechanical ventilation again. Nevertheless, James' new tracheotomy should allow for speech. He will also be able to have a swallow assessment. He might be able to eat and drink for the first time in several months. That will be a great reward for all of James' exceptional hard work.

We are completely exhausted (to say the least). Exhaustion takes precedence over writing, and I am going to attempt sleep again. My migraines have returned with full force. I have not had relief for nearly ten days. Sleep is not a guarantee, but it does provide some temporary respite.

Monday, July 1, 2013

nausea again

These are the days to dread. It has been a miserable and long weekend. James' nausea and vomiting returned on Friday night. He has been hugging a basin for three days. I am completely helpless. I watch him tremble and wretch for hours at a time. We have no known cause. We have no solution. It could last for days. It could last for weeks. We are completely helpless. I am too exhausted to write more. I will try to update tomorrow.

Friday, June 28, 2013

one month post-transplant

We have come a long way in the last month: 

James is no longer on ECMO.

James in only on the ventilator at night. He uses a tracheostomy mask at 30% oxygen for twelve hours during the day.

James is no longer on TPN. He is being fed completely through NG feeds without nausea or vomiting.

James is no longer fighting infections.

James' major organ systems are all functioning within normal ranges.

James no longer has serious fluid overload.

James' various tubes and catheters have all been removed, (and James should be free from an IV pole by the end of the day).

James is awake, alert, and oriented. He can communicate with the team, and advocate for himself. We can laugh and smile, and find joy in our time together. 

James can move between his bed and the chair with minimal support. He has become a lot more confident in his own strength and endurance.

James has been able to leave the ICU twice. He was outside for the first time in six months, and had a lovely afternoon in the atrium.

James and I can imagine a future together again. We have a sense of hope.

Why be an organ donor? Organ donation saves lives. We are so very grateful for another chance at life. There are not enough words of gratitude. We are forever indebted by the generosity and courage of an anonymous stranger.

Thursday, June 27, 2013

update

I am trying to process a lot of difficult and conflicting emotions. James continues to move forward, but at a pace that lends itself to discouragement. I am acutely aware of the challenges ahead, and the length of time it will take to get there. The progress is remarkable in consideration of the last six months, but it is starting to feel endless again. We still have a long way to go. Movement is slowing down a lot. It can feel as though our lives are on hold again. The walls are no longer closing in on us, but James need the benefits of time. We are going to have to remain still for a while.

Where are we? James is able to remain off the ventilator (and on a tracheostomy mask at 30% oxygen) for ten hours during the day. We will increase to twelve hours on Friday. At that point, James will be given the weekend to rest. He still requires ventilation on high pressure control for physiotherapy and at night. James is not able to breathe on his own during deep sleep. There could be a number of reasons for this, including James' medication regime. The team is hesitant to push forward, because James' success during the days is dependent on his ability to sleep through the night. He needs to feel strong during the day to be able to participate physiotherapy. This is essential for progress in all regards. 

In terms of physiotherapy, James is walking further some days, and feeling stronger all the time. He is now able to get out of bed with minimal support. He can also stand independent of support. These are strenuous movements, and James finds himself short of breath. Nevertheless, James is gaining back his autonomy on several different levels. This all makes a significant difference in terms of James quality of life in the ICU. 

We had another scare on Wednesday followed by a miserable procedure. James had cultures done on his central line. The results came back positive for a pathogen. James was asymptomatic for sepsis, but the line would have to be removed as soon as possible to prevent the spread of infection.

There were three unsuccessful attempts at the insertion of a new central line. James cried in excruciating pain throughout the procedure. I held his hand, and whispered words of reassurance and encouragement. James hates needles after a childhood of pokes and prods. This was absolute torture for him. James finally agreed to a PICC line insertion in his arm. He was given time to rest followed by another procedure of painful anticipation. This was successful, and James' infected line was removed late in the evening. We both went to sleep in a state of complete exhaustion. 

We have to find a way to remain positive. We have to remind ourselves that James will continue to improve. We will eventually have lives separate from illness and hospitals. We have to hold still, and hold each other close. We will get through all of this.

Wednesday, June 26, 2013

The last few days have been largely uneventful. James is meeting all his daily goals. We are moving in slow motion. I will try to update further in the morning. Love, love, love.

Sunday, June 23, 2013

path to ventilator liberation

We are still treading lightly, and to some extent, awaiting the next setback, but James is determined to stride forward. We continue to move at a slow and steady pace. James has daily goals, and manages to meet them all without difficulties. He feels stronger with each passing day, and there is evidence to support his gains.

We are on the path to ventilator liberation. James' oxygen requirements are down to 30%. He spends an increasing amount of time on a tracheostomy mask each day. Yesterday, James spent a total of four hours off the ventilator, and will aim for six hours today. He doesn't feel short of breath during these trials, but it does impact his level of fatigue. He is learning to breathe all over again. It takes a lot of energy. 

James has also been requiring less oxygen and ventilation support for physiotherapy. He will soon take on walking without the ventilator. These small gains are major on the path to recovery.

Friday, June 21, 2013

moments in time

We finally have a routine to structure our days. We have re-established a sense of normalcy, or at least, the normalcy that has become our lives in the hospital. We are settled at a reasonable and productive pace of moving towards a healthy recovery from James' re-transplant.

We have no point of reference for comparison. We have been told that James is the first re-transplant patient to survive on ECMO for three months as a bridge to transplant. Each of these factors alone would come with expectations of a long and complicated recovery process.

I wish I had more of a sense of the future possibilities. I wish I had more of a sense of James' prognosis. I know the statistics, but James and I have always been outliers. We want to believe that this transplant will be different. We want to defy chance.

James is doing everything within his abilities to move forward. He is pushing himself to the point of exhaustion. He is doing everything right (and everything possible). He has been achieving all of his goals for weaning from mechanical ventilation. The ICU team has created a regimen for daily incremental increases to the length of time on low levels of pressure support. We even have a sticker chart for motivation.
The days can be long, but we find hope in the small changes that indicate progress on a daily basis. We are so grateful to be on the other side of transplant. That is enough to continue to propel forward movement. We are both in good spirits. There are regular frustrations and moments of discouragement, but dreams of a future together are enough to lift the weight. We still have fears and anxieties, but again, James and I are able shift our focus, and find that same sense of hope that was essential for pre-transplant survival.

We have learned out of necessity to live in the moment. We have the knowledge and experience to understand that everything can change in an instant. We dabble in those post-transplant euphoric feelings of joy and relief with acceptance for the moment, and a letting go of anything beyond the moment. Does that make sense? We have no alternative. We only have the moment.

Wednesday, June 19, 2013

patience

Slowing down is hard without feeling some level of discouragement. These long-term hospitalizations tend to wear down our patience. James and I are ready to move beyond the stage of perpetual waiting (for, well, everything). Our lives have been on hold for almost a year now. We are ready for change. We are desperate to start out lives together.

Time will always be precious for us. We have no illusions of health. We have no real sense of James' long-term prognosis. (The median survival for re-transplant is two years). We no longer believe that we will be the exception. We are driven to live with complete joy and happiness, and of course, in the absence of pain. We have learned acceptance of that which is beyond our control. We will never be completely free from fears. These fears act as a reminder to live within the moment. I am grateful for that perspective.

Our challenge right now is weaning from the ventilator. We are trying to determine a balance in moving forward without leading to backwards movement from aggressive change. We have to remind ourselves that James is still in the early stages of recovery. We have to embrace the passage of time, and learn to allow ourselves to slow down. We have to account for time in the healing process. We don't want to work against ourselves. We are fortunate to have hope and optimism on our side.

The pace is not as important as the direction of movement. James continues to move forward. That will have to be enough for now.

Tuesday, June 18, 2013

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.

Monday, June 17, 2013

heroics

Heroics. That is the word for all this. James is a hero. He is making enormous strides. He keeps pushing forward. His courage is unbelievable. I tried to express my deep admiration, and I found myself in tears. Words are completely inadequate here. I am so proud to be his wife.

James has been walking the entire unit in the mornings, followed by independent arm weights, leg weights, and standing stretches in the afternoon. He has a very strong sense of motivation, along with a very real determination and drive that makes an incredible difference. (We all already know this about James. His pre-transplant days were a testament to it).

James' improvements are evident on all levels with a promise of future health and benefit. The most essential (and remarkable) change has been in James' respiratory system. His hard work has made for steady weaning from the ventilator. This can often be a very long process with a lot of back and forth movement between the various stages. James has been on minimal support for the last twenty four hours (and for twelve hours on previous days). This afternoon, James will make an attempt at a spontaneous breathing trial. That is, James will breath completely independent on the machine (with oxygen support). It will be a short trial of a couple of minutes followed by longer trials in the coming days. It is all part of the process.

Another major area of change has been with James' gastrointestinal system. James has a long-standing history of nausea and vomiting episodes as a result of severe dysmotility, delayed gastric emptying, and pseudo-blockages. He has not been able to tolerate entereal feeds (or anything by mouth) for the last six months. He has received his nutrition directly into his veins through Total Parenteral Nutrition (TPN), in addition to trickle feeds to preserve the function of his digestive system. Unfortunately, TPN has been known to cause infections and sepsis over the long-term. A major hurdle for James will be developing a tolerance for feeds. James will not be able to eat or drink with his tracheostomy, but at some point, James will need to slowly re-introduce liquids and solids. He will also need to regain strength in his swallowing muscles. This will be a major goal for eventual discharge from the hospital.

We can expect a difficult and slow process, but James is braving the very early steps of weaning from the TPN, and increasing his nasogastric feeds. He follows a strict bowel routine to encourage digestive motility and prevent bowel blockages. Nevertheless, James continues to face daily nausea and vomiting episodes. He is pushing through the discomfort with incremental changes to his digestive routine. This is a remarkable feat.

I wish I could convey the magnitude of these steps forward. We are right on track with forward motion (right out of the ICU). We move with cautious optimism and a weary knowledge of potential challenges. James can also be hesitant at the speed of this pace, but I sense confidence and readiness in his movement. Everything feels possible all over again.

Sunday, June 16, 2013

shifting expectations

The worry has been a constant in our lives. It is hard to let go. We have learned to anticipate the worst. We have come to expect challenges and setbacks. We are always bracing ourselves for a long and rough road. We prepare for patience and endurance. We scale our expectations to avoid disappointment.

Nevertheless, James' progress continue to astound and amaze. It is absolutely beyond belief. It borders on the miraculous. We are waiting for the trend to slow to a plateau or more gradual pace. It is almost as though James and I are afraid to accept this excitement and joy. It doesn't seem real on some level.

Of course, James and I hope to be the exception. We always did, and I suppose, I still desire that same sense of optimism. The difficulties lie in knowledge of post-transplant realities. This is even more the case with re-transplant. We really do exchange one set of problems for a another, but then again, it is a completely different magnitude.

The ability to breathe is a gift without word for expression of gratitude. James is still on life support, but I know that James will breathe independently again. This is a realization of enormous hope. We need to learn to antipcate the best.

outside!

James went outside for the first time in nearly six months! We are so grateful for a very loving and dedicated ICU team. We will never be able to thank them enough! James was beaming with sunshine! o, the joy! We both glowed for hours and hours! Did I mention that James has been walking and participating in physiotherapy? He walked 20 metres on Thursday, 40 metres on Friday, and 120 metres on Saturday! I am bursting with excitement and future possibilities!

Thursday, June 13, 2013

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.

hope

I feel truly hopeful. It really is an incredible feeling to experience a very real hope (without the sense that you are lying to yourself on some level). James has a long journey ahead and several challenges to overcome, but it all seems possible in the foreseeable future. The load feels lighter for the first time in a long while. It could be another six months, but James and I will be nesting again in our lovely home on the West Coast. (I will try to update more later).

Wednesday, June 12, 2013

moving forward

We are moving forward at slow and steady pace. We will continue to experience a range of bumps and bruises, but these are all within the realms of expectations for this stage.

James wakes every couple of hours. He is alert and responsive with some disorientation. He doesn't always remember my presence. There is some confusion of circumstance. He isn't always able to place himself in time or space. This can lead to a restlessness, and lends itself to fears and anxieties. His sleep is also haunted by vivid dreams and nightmares. These border the edge of hallucination and delirium. All of this is completely appropriate to the level of sedation and analgesia in his system.

James has had some improvements to his respiratory status that allow for gradual weaning from mechanical ventilation. He seems to be stable enough to tolerate varying levels of support depending on a number of different factors. These factors dictate the level of aggression in the weaning process. His hemodynamics and oxygen requirements are also variable and dependent on James' level of alertness. The process is seemingly complex and dynamic, but James is trending in the right direction. This morning, James was able to tolerate an hour and forty-five minutes on minimal support. This is a noteworthy achievement for rehabilitation. It was a challenge for James, but as always, James demonstrates motivation and perseverance. 

We had have further achievement in the last few days. This includes the removal of three chest drainage tubes. The remaining two tubes continue to drain at a minimal rate, but James is right on track with an appropriate post-transplant recovery interval in this regard. James is also able to participate in physiotherapy again. The progress here is also slow and difficult, but James' continues to impress with his incredible drive. He was able to sit without support at the edge of his bed for ten minutes, followed by a steady stand, and some high steps on the spot. We look forward to further improvements in strength and endurance.

Some remaining concerns include fluid overload, kidney and liver function, and gastrointestinal blockages, but again, James' body has shown a lot of resilience, and is starting to recovery independent of intensive or aggressive intervention. We can breathe a bit more easily these days.

Tuesday, June 11, 2013

photos!



sigh of relief

My cautious optimism wasn't without warrant. It seems as though James' delirium returned overnight. The subsequent anxiety had a negative impact on his hemodynamics, and James was placed back on sedation, along with an increase to his ventilator settings. His fluid balance is also back in the positive with an increase in edema and swelling. This is the dance of transplant recovery; a precarious balance of movement backwards and forwards, and an in-between settling space for hope and gratitude.

James has shown great potential for improvement. Movement forward is within the range of possibilities. We will continue to face complications, but I am certain that these days of renewed hope will soon start to out number those of anxieties and fears. Yesterday, I experienced my first sigh of relief since James' second double lung transplant. I am holding my breath again, but I am looking forward to the next letting go.

some sunshine

James seems to have turned a corner! I write with cautious optimism, but also the enthusiasm of a renewed sense of hope. James is finally moving in the right direction. His resilience and drive have never been more evident (and I know I write that a lot, but James continues to amaze me).

James' respiratory status has improved significantly, along with his kidney function, fluid balance, and gastrointestinal status. A decision was made that James was finally stable enough to wean from all the sedation. He was calm and alert through the process, and was able to tolerate the wean without delirium or hallucinations. Subsequently, James was also able to come down on his ventilator settings. It will take some time for James to be able to breathe on his own, but I am already beaming with pride. 

Yesterday, James tolerated twenty-five minutes on pressure support without negative impact to his hemodynamics. His oxygen requirements have also improved with a need for fifty to sixty percent oxygenation. It is also important to also consider the role of muscle deterioration, including the muscles that are necessary to allow for breathing. James will have limited trials on pressure support to allow these muscles to rebuild in strength and endurance. These are all essential baby steps along this journey. We are headed towards James' independent breathing!

Do you want some more sunshine? James was also able to participate in physiotherapy yesterday! He dangled on the edge of his bed, and made two separate attempts at standing. How is that for heroics? This is very impressive for James' current health status. We were all beyond pleased.