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.


  1. I can so empathize with the remembered trauma of past hospitalizations. Hubs will sometimes look at me and burst into tears, and we hold each other tight, and try to soothe that memory as best we can. It's totally applicable for you and the mister to consider therapy to come to terms with what was, and what you thought might be. Life is tenuous, and fleeting, and oh so frail, but therein lies the most amazing and potent experiences you will ever know. Huzzah for six months! Is he entirely unplugged, no assistive devices other than the occasional checkup? Any signs of anything wonky, or are there green lights all across the board aside from that goofy digestive issue? Much love to you both, love love love.

    1. So lovely to hear from you! We hold each other close, that is for sure! James had his port removed a few weeks ago. It was an intense experience to be back in a hospital, but it is also wonderful to be moving forward! James has a bronchoscopy in a week, along with other follow-up testing (bloodowork, PFTs, etc.). We don't anticipate any concerns. Thanks for your love, love, love! We are sending some right back at you!