When no means yes

Erin's biopsy on Tuesday went smoothly. The doctor said her lungs looked healthy and despite suctioning a fair amount of mucus out with the bronchoscopy there was little inflammation. The size of the biopsy was larger and thus took 48 hrs instead of 24 to get the much anticipated results. Hearing the words ‘No rejection’ was well worth the wait!

Despite being able to do the procedure laparoscopically (three 1cm incisions and a chest tube versus a 3 inch incision and tube) Erin was in a significant amount of pain. They had warned us this might be more difficult than the transplant surgery because they cut through a lot more nerves and they were pretty accurate. Each day gets a little better, which is good because Homecoming is in a week!

And yet…..

A few hours after the ‘no rejection’ announcement Erin’s non-surgical transplant doctor shared his thoughts, and they weren't pretty. He believes Erin has BOS (bronchiolitis obliterans syndrome) which basically means she presents all of the symptoms indicative of chronic rejection without the biopsy diagnosis. Before this diagnosis can be official we need to rule out that her drop in lung function was not caused by an infection. As a result, instead of being discharged today, we will be extending our hospital stay by at least a week. They will administer 3 different IV antibiotics and repeat her lung function. If her lung function can improve from the 54% it was on Monday to at least 60% we can return to life as it was closely monitoring her lung function. If it is below 60%, they will treat her almost as if her biopsy came back positive for rejection and begin a process called photopheresis (more on that later). For now, we are focusing all of our energy on getting her lung function above 60%.

Comments

  • Doris

    Thinking of you and keeping you and family in my prayers. Doris

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