Yesterday marked my 16 year "Lungaversary". Both of my kids (who are away at school/work) messaged me and said some really nice things. My son wrote, "I think it's incredible and I really want you to know how much I love and appreciate you". My daughter wrote, "I'm so proud of you every day". I had my transplant when they were very young, my son was 7 and my daughter was 4. Their messages yesterday reminded me of how far we have all come and that they are now mature adults.
Although sixteen years is a long time it's kind of anti-climactic because I am still on oxygen. A couple of days ago I had my yearly assessment. This involves blood work, a chest x-ray, a 6-minute walk test and breathing tests all followed up with a clinic visit with the doctor. Even though each patient is assigned to a doctor doesn't mean that is the doctor you'll see when you come in for an appointment. I haven't seen my assigned doctor in over 2 years. But I did see the doctor who read my CT Scan back in October and did a bronchial wash due to the fungus that is growing on my lungs. A bronchial wash involves swallowing a device that basically washes out your lungs ("like a car wash", my husband says). My low lung function made the procedure risky and is what landed me in the hospital for over two weeks back in October. When he went over my results he pointed out that my lung function is still very low and even when the fungus has been resolved I have chronic rejection. Most patients have some chronic rejection but mine is getting worse. I asked him if even though when the fungus goes away will I still need oxygen. He said he didn't know. I am exercising like crazy which is the only thing that I can do, I have no control over the rejection. Is this going to be the new normal for me?
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