I posted here a while ago about suspected brinchiolitis obliterans. A few of you replied, I haven't gotten around to responding yet but just wanted to say thank you for your support and I will reply individually.
After I posted I suppose I had a mini meltdown/breakdown of sorts. I've been treated the past 8 years from bronchiectasis and asthma. I knew things were getting worse but had no idea how bad they had gotten plus I just had my first baby. So to get news that they think it's that horrible disease...well it all got to me, hence I'm only back now. I decided to stop googling and reading too much info on it and gave myself a break.
My respiratory consultant was pushing for an open lung biopsy but after seeing how upset I was, said we could try 6 weeks of intensive therapy. So we did that and I repeated my PFTs. (The last ones had a FVC1 of 48%). I went back to him last week and I'm up to 63%. The first increase in 6 years. He cannot believe it or explain it. I've been dropping FVC1 at a rate of almost 5% a year. So surgery is off the table for the moment although he still believes I have the disease.
Well what a fantastic result. I missed your earlier posts. I was probably having a bit of a bad spell. Glad to hear that you have dropped Google and come back here for information. At least here you will get the true story and if it is something that is different for different folks you will find people here giving you both sides.
I am breathing ok just now thanks. It is just this constant rain that is causing problems with my other health issues.
I am sorry but I cannot help on the bronchiolitis problem.
I do have Bronchiectasis and Emphasema so I can sympathise with your problems with both of those. Did your consultant say what was thought to be the cause of your Bronchiectasis?
The rain plays havoc with my lungs, I'm like a human barometer, can always tell when it's going to rain!! I think I need to move somewhere hot!
Gosh sorry to hear you have both- it must be a struggle. My consultant isn't sure now that I have bronchiectasis! But no they never explained it. From my own reading I'm presuming it's either because I had measles and whooping cough as a child and the damage was done then or from gastric reflux. How about you? Did you ever get a reason why?
I was seriously ill with Whooping Cough as a young child. Strange thing was that nothing was picked up in all the medicals that I had through my adult life. Then out of the blue a chest x ray suddenly revealed both COPD & Bronchiectasis. I never had reflux until recent years.
So glad for you. Predictions about such a very rare condition are really difficult or impossible. My husband is a mathematician with a very good understanding of statistics. He is appalled at the way doctors use these numbers. Mainly he would take issue with the sample sizes. ie With so few patient outcomes to look at it is not sensible to make a realistic prognosis.
As I said before you have youth on your side. And a history of coping well with lung disease.
A new baby has probably improved your lungs what with all that extra activity, excercise really is the best remedy for us. I wish you and your new little family well, keep moving and don't read too much about your condition, we are all different and what you read may not apply to you. I had three children whilst taking medication for my condition, they are all fit and well (bit of asthma, but well controlled) and have good jobs. Joy x
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