Same Journey, Different Path

Thank you to everyone who continues to keep up with me through my blog and email. I am sorry I cannot always respond personally to each email but I do try to.

For the past 18-months or so my chronic myeloid leukemia journey has been more about a journey post stem-cell transplant, which seemed logical enough. I have been doing pretty well overall and have remained in remission since I fully engrafted with my donor's blood shortly after the transplant.

Most of you know I have had a few ups and downs over the past six months or more with fatigue, some dizzy spells, feeling winded after light exertion like walking stairs, etc. I was especially feeling poorly a couple of months ago when it appeared I had picked up some sort of local bug here in Colorado Springs. Well I have been feeling poorly again so my wife brought me into the emergency room last Saturday because I was having difficulties breathing. The ER team placed me on IV and oxygen and began several tests, such as chest x-ray with contrast, CT scan of sinuses, and a high definition chest CT scan. I was admitted into Memorial Hospital that night for observation and more tests the following days.

So the bottom line is I have bronchiolitis obliterans (BO) which I have gotten from graft-versus host-disease of the lungs. Bronchiolitis is inflammation of the bronchioles and obliterans means the inflammation is at least partially obliterating the airways. One form of this is also known as popcorn worker's lungs, which is life-threatening and apparently irreversible.

They have already been talking about a multiple lung transplant and have been in consultation with the organ transplant specialists in Seattle. The doctors at the Hutch said they concur with the assessment of BO but want to wait to see how I do on various additional lung medications (steroids) before returning to talks about lung transplants. I am back home now, on full-time oxygen and taking loads of new medications, inhalers and respiratory lung treatments.

Well nobody promised me a flawless journey without a fair share of bumps along the way. Through this blog, I hope I can continue to inspire patients and caregivers to continue with your CML therapies and treatments with positive outlooks towards success. And of course I will use this blog as a venue for myself to learn the medical and technical aspects of lung GVHD and to share what I learn.