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.
 

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

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!

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?"

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.

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!

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. 

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. 

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

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.

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.

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.