Guest guest Posted July 2, 2009 Report Share Posted July 2, 2009 Diane I think you will find Columbia Presbyterian to be incredible and they'll walk you through so much of the information you need. Great place to be going. I imagine they will suggest a VATS and you can read lots about them here. They are invasive. They are not fun. You can be like Joyce Rudy who recently swore when she had it that had she known she never would have but who will now tell you she's glad she did. You have to decide, but the value is as you mentioned, the ability to make an accurate specific diagnosis. The doctors will do their own evaluation but if they do recommend a VATS I would say at your young age one is generally very appropriate. > > > > Hi Darlene, > > I'm glad you have dropped back in to us. It sounds like you've been acclimating to this life changing diagnosis and getting on with your life. Congratulations. Pulmonary rehab, exercise, eating as healthily as you can are all important and extremely helpful. > > As far as the supplements go...without knowing what you're on it's impossible to express an opinion. I would also be very cautious about supplements and would consult my physician before taking much more than a multi vitamin. I take several supplements prescribed for me by a nutritionist who works closely with my pulmonologist. They are specifically to help lower the overall level of inflammation in my body. Because our bodies are out of balance and not as healthy as we would like, it takes some expertise to know what if anything we need above and beyond eating a healthy diet. I'd just be careful but that's just my opinion. > > We have a former member of this group who has Langerhans and eosinophilic granuloma. She has been treated with a lot of success and to the best of my knowledge is no longer even using oxygen. She found highly specialized treatment for this at a university children's hospital because Langerhans is much more common in the pediatric population.  I will ask her if she'd be willing to exchange email addresses with you. She's much more knowledgeable about Langerhans than any of us are. > > Please don't make the mistake of thinking that all pulmonary fibrosis is the same. That's just not the case at all. Something like what you may have has treatment that is different from what most of the rest of us have ever done. > > I realize that biopsy is controversial and is not without pain and complications. Mine was difficult. But if I had it to do over again, I would. I know for sure now precisely what I have. Being able to put a name to it, made the doctors at Duke more aggressive in search for an underlying auto-immune condition. That condition has been found and is being treated. > > All any of us can offer you is an opinion and our own experience. Ultimately you have to decide what to do. I would encourage you to seek out more opinions on your diagnosis and specialists who are familiar with it. > > Please continue to ask any questions you have and know that you are in our thoughts and prayers. > >  > > Beth > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > > > >________________________________ > > From: darlenebarry1954 darlenebarry1954@ > > To: Breathe-Support > > Sent: Wednesday, July 1, 2009 9:51:31 AM > > Subject: It has been awhile > > > > > > > > > > > > Hello everyone, > > It has been a little while since my last post. I read your posts everyday while I'm at work. I'm still having a bit of trouble accepting that I am indeed ill. I've never been sick so trying to wrap my head around the seriousness of this disease is difficult for me to say the least. But I think that with each passing day I come to believe that at least for today, I am fine and life goes on. In the beginning it was about all that I could think about and now, I'm realizing that sick or not I still have things to do, places to be and have people to enjoy. > > > > The only thing that is wrong with me currently is that I get short of breath and tire easily. I am taking O2, @ 2LPM and although I get tired of toting it around, it enables me to be quite active. I just completed a month of pulmonary rehab, and have the go ahead to start working out on my own at the gym. I feel better when I'm active, and I'd like to remain that way. Not to mention that I have gained about 25 pounds in the last two months! I already needed to lose some weight before all this started and now it is very important that I figure out how to go about losing it now. > > > > I started taking some vitamin and mineral supplements a couple of weeks ago, does anyone know if these are beneficial? I'm scheduled to see my doctor July 6th to go over the results of another CT scan and PFT tests. I guess he will be comparing these to the ones from a month ago. He still hasn't given up on the possibility of doing a lung biopsy. If they do a biopsy, are they actually looking for something else to treat besides the symptoms that I have? From the research that I've done, it seems like it almost doesn't matter what is causing the fibrosis, the treatment plan is the same. I am currently taking 10mg of prednisone a day, along with prilosec and zantac. That is all, can I expect this to be increased or more medications to be added? > > > > I don't remember if I included this in my introduction but about 30 years ago I was diagnosed with a condition called eosinophilic granuloma, basically my immune system was attacking the bones in my body. Eventually, I ventured into a " remission " and haven't thought about it for years. Now I find out that this condition can also cause problems in the lungs. There it is called langerhans histocytosis. The doctor did a bronchoscopy and said that the results where inconclusive for that. Has anyone heard of this before? > > > > I appreciate all of you and hope that you will be patient with me while I get used to this. > > > > Darlene > > > Quote Link to comment Share on other sites More sharing options...
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