Re: Getting better - What do I have?

[Guest guest]

Mike,

Happy to translate although what you thought you heard the first time was correct. The biopsy showed that you have fibrotic nsip (that's the "fibrosing variant nonspecific interstitial pneumonia"). That's also what I have. It is most commonly seen in those with an underlying auto-immune/connective tissue disease, though not always. There is another possiblity that it was caused by hypersensitivity pneumonitis which in plain english is an extraordinarily severe allergic reaction to something in your environment. The most common causes are pet birds, mold etc.

I'm certain that you had an entire battery of bloodwork done which would have given Dr. Noble some information about what was going on with you. If it were me I would call or email and ask to go over what they found.

An auto-immune/connective tissue disease can be difficult to narrow down and diagnose. It may be that they've not been able to find precisely which disease, if any, you have.

Start making a list of questions. Even if you wait till December for your next appointment you want to walk in there with a list of questions so that you don't walk out feeling as though you don't understand what's wrong with you.

Are you still in Durham?

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Mon, October 19, 2009 7:37:50 AMSubject: Getting better - What do I have?

Hi,I had my biopsy the beginning of August at Duke. Dr Noble is my Doctor. I would have sworn that he said that from the biopsy it appeared I did not have IPF but it probably was an autoimmune lung disease. Since the biopsy I was on on oxygen. Though I didn't need it while sitting or sleeping.I'm on all of our favorite drug prednisolone 20 mg plus Cellcept 3g.About a week and a half ago I started getting better to the point where I no longer need oxygen. I'm not saying that I'm 100% better, if I walk at a slightly lower than normal pace I can get maybe 50 yards before I have to rest for a few minutes, my levels then will go down to around 88. The only problem is that at times I forget that I'm not normal and walk along at a brisk pace and my levels quickly plummet to 85-6 or lower.Before I started getting better I didn't bother thinking much about the diagnosis. Doctor Noble said to return in December, if I was getting

better I would be there for just a few days, if worse starting the procedures for getting me on the lung transplant path. (I live in Finland)So now that I am getting better I'm wondering about the diagnosis. So here is what Dr Noble put on paper about the biopsy:The pattern was not the typical features of usual interstitial pneumonia. The pattern was more consistent with the fibrosing variant nonspecific interstitial pneumonia, which can be seen in the setting of a connective tissue disease or chronic hypersensitivity pneumonia.Can someone translate that into plain English?Thanks,Mike Dulin