hi everyone,
I just wanted to give an update to my situation since I was able to see my new pulmonologist today. My old one is retiring in May so it worked out well for me to transition and also get a second opinion.
The new doctor sat down and went over all of my scans and tests in detail. He agreed with the diagnosis of Congenital Lobar Emphysema. He said he was 99.9% sure this is what I have and that I was born this way. The only reason he isn’t 100% sure is because he can’t open and look at my lung directly which is the only way to be certain. He said this is not a cyst, it’s better described as a Bullae and my entire right lower lobe is effected and rendered basically useless. Which he said explains my low ratio of 70 because this entire lobe is so inefficient at emptying air.
So, it appears I have an extremely rare diagnosis. I guess this is why I wanted the second opinion, because this does seem to be so rare. Most times it is caught before a child reaches 6 months old. Technically, it would fall under COPD because it does cause an obstruction in my breathing but it’s not likely to be progressive. He said it is likely this will never really impact me but if it does, we will perform a lobectomy.
He also said that my drug use is very unlikely to have anything to do with this. He said maybe it’s possible that it contributed to making it worse but that’s also extremely unlikely. I have probably always had this abnormal piece of lung.
I just wanted to update everyone on that. I’m going to accept that this is what I have, two doctors appear to be in agreement that this is congenital. We will do another CT scan in the fall and if all is well, we don’t have to do scans anymore but we will continue to do spirometry. He also wants to check my nodule again at that time to make sure it’s stable.
Thanks again everyone for all of your help and support through this. You have a wonderful community here and I’m so glad it exists. Thanks Doctor Dave for helping me out and clarifying information in my moments of worry!
I will update again when I have another scan.
Have a great spring and summer season everyone!! I’m so ready for the cold weather to end.
:)