It was a hard few months in the transplant and CF communities, but I suppose that is often the case with the passage of time, and in the cold and dark months. We enter the new year with relative health, but with heavy hearts for many of our dear friends. We have formed wonderful and invaluable friendships, but it is hard to witness the progression of the disease and the deterioration of health, especially, post-transplant after a period of renewed health. Transplant provides temporary hope, but it is not a cure. We know firsthand the exchange of one set of problems for another.
In December, James and I were reminded of his own vulnerability, and anxiously awaited the results of an emergency bronchoscopy. He had a consistent decrease in lung function that was large enough to be of concern, but for now, James is clear from infection and rejection, and those numbers appear to be returning to his baseline. James is stable.
We are beyond fortunate. We are beyond grateful. Time is more precious than ever before.
Thanks for the update. I remember reading about your family on the something awful forums and am gratified that your family is doing so well. Congratulations on the baby!
ReplyDeleteHi. Your old friend Sarah Wychandler, now married to my nephew, David turned me onto your blog. I had a double lung transplant 15 years ago. I am writing a memoir about it and you can follow my blog Jodibernholtz@blogspot.com. I am so pleased that you two have a baby and that James was able to recover some of his lung function. That is rare. Once your PFTs plummet one can almost never get them back up. And your comment about trading one set of problems for another, so true! When my docs told me that I chose not to listen but 15 years on anti-rejections meds have produced their own set of problems. Keep writing and read my blog too!
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ReplyDeleteo, yes, indeed. Thank you for checking in. We tend to update on FB these days (James' Quest For Lungs), but even then, it is rare. We are chasing a toddler all over the place. We are focused on living, and it is the very best. James celebrated his 34th birthday a few days ago, and will be five years post-retransplant in May. All the best.
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