Re: Re: really overwhelmed

[Guest guest]

Has anyone had the biopsy? Was is painful? Side effects? How long is the recovery and. Do you have to be hospitalized? Is it done surgically or through the throat? I really am the type that has to know all the details. I have had a pft with moderate lung defect, and the cat scan with contrast that actually diagnosed the PF. There is such a huge difference in the different types especially the way each will respond to therapy and life expectancy.I have 6 children ranging from a 1st grade girl to my oldest daughter leaving for college. Although my husband knows, I cannot even think of letting my kids know that their mother might die. It is like tourture not knowing what type I have and how it will effect me. I am going on with life as usual but every time I loose my breath or cough. It hits me like a truck. I called ny columbian presb. Hospital n made an appt with dr kaner. Has anyone heard of him? He cannot see me til 7-29-09. How important is it to get early diag. treatment? I know I am all over the place but this is how my brain emotions are. Running.Your imput is really appreciated.Thanks, dianeStaten island, ny, 43 IPF 6/09Sent on the Now Network™ from my Sprint® BlackBerryFrom: "darlenebarry1954" Date: Thu, 02 Jul 2009 16:12:23 -0000To: <Breathe-Support >Subject: Re: It has been awhile Beth, I appreciate your response. When I see my doctor on the 6th I will take the supplements with me so he can see first hand what I'm taking. It is definitely my top goal to get as healthy as I can. Thank you for seeing about introducing me to your friend. As I said, the bronchoscopy result was inconclusive for langerhans but I guess that inconclusive means maybe yes maybe no. I really thought that the treatment for pulmonary fibrosis was the same. I guess I really have a lot more research to do. I guess that what ever is causing the fibrosis is what needs to be treated. I realize that there must be good cause sometimes for biopsy but honestly I think I'm really just scared of doing something or scared of not doing something or just plain scared. I couldn't afford the time away from work, but perhaps by having a biopsy I could be doing the right thing. I'm just not sure of how to make the right decision. Anyway, thanks again for everything. Darlene > > 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 > > > > >________________________________ > > 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 >

[Guest guest]



Hi Diane- I have had both the lung biopsy thru the broncs and a VATS which is cutting into the lung and taking larger pieces of lung and looking at the lung with a camera. The brochoscope biopsy didn't hurt at all but was useless in my case. The VATS was terrible. I had a lot of pain initially and had problems with my lungs and ended up in ICU for about 4 days. When I came home the recovery was very hard on me and at the time I said I would never have done it if I had known that this would happen. In the end, I am glad I had the VATS since they got useful info and ruled things out. Some people have no trouble at all with the VATS and in my case I did. It is usually a in one morning and out the next morning procedure but in rare cases problems result. Talk to the surgeon and ask him all that could go wrong. But if you are looking for answers a biopsy is the only way you will get them. Joyce Rudy AZ birds 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>

[Guest guest]

Diane,

First of all I'm very happy you are going to see Dr.Kaner at Columbia Pres. I've never met him but I've heard of him and he's quite well thought of.

I totally understand your anxiety. Get a notebook and start writing questions down. Make a list to take with you when you see Dr. Kaner. It's only 4 weeks away. Can someone go with you to the appointment. When I saw a specialist for the first time 3 years ago, my sister came with me. She took notes and asked questions that I wouldn't have thought of. It helped afterwards because I was still in such a state that I don't know how much I would have remembered.

Try not to panic (easier said than done I know). I'm 49, (almost 50) and I was diagnosed with fibrotic NSIP 3 years ago. At the time of my diagnosis I had lost 60% of my lung function and I was sure I was going to die within a year or two. However 3 years later here I am. I've stayed absolutely stable since diagnosis.

Obviously we can't say what your prognosis is but you're here today and you're likely to be here tomorrow. Figuring out what is going on, putting a name on it and deciding what (if any) treatment you want to pursue will help you feel more in control of what's happening.

In the meantime I'm glad you found us. I hope that we can be of help to you.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thursday, July 2, 2009 12:50:00 PMSubject: Re: Re: really overwhelmed

Has anyone had the biopsy? Was is painful? Side effects? How long is the recovery and. Do you have to be hospitalized? Is it done surgically or through the throat? I really am the type that has to know all the details. I have had a pft with moderate lung defect, and the cat scan with contrast that actually diagnosed the PF. There is such a huge difference in the different types especially the way each will respond to therapy and life expectancy.I have 6 children ranging from a 1st grade girl to my oldest daughter leaving for college. Although my husband knows, I cannot even think of letting my kids know that their mother might die. It is like tourture not knowing what type I have and how it will effect me. I am going on with life as usual but every time I loose my breath or cough. It hits me like a truck. I called ny columbian presb. Hospital n made an appt with dr kaner. Has anyone heard of him? He cannot see me til 7-29-09. How important is it

to get early diag. treatment? I know I am all over the place but this is how my brain emotions are. Running.Your imput is really appreciated.Thanks, dianeStaten island, ny, 43 IPF 6/09

Sent on the Now Network™ from my Sprint® BlackBerry

From: "darlenebarry1954" Date: Thu, 02 Jul 2009 16:12:23 -0000To: <Breathe-Support@ yahoogroups. com>Subject: Re: It has been awhile

Beth,I appreciate your response. When I see my doctor on the 6th I will take the supplements with me so he can see first hand what I'm taking. It is definitely my top goal to get as healthy as I can. Thank you for seeing about introducing me to your friend. As I said, the bronchoscopy result was inconclusive for langerhans but I guess that inconclusive means maybe yes maybe no. I really thought that the treatment for pulmonary fibrosis was the same. I guess I really have a lot more research to do. I guess that what ever is causing the fibrosis is what needs to be treated. I realize that there must be good cause sometimes for biopsy but honestly I think I'm really just scared of doing something or scared of not doing something or just plain scared. I couldn't afford the time away from work, but perhaps by having a biopsy I could be doing the right thing. I'm just not sure of how to make the right decision.Anyway, thanks again

for everything.Darlene>> 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@ yahoogroups. com> 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>

[Guest guest]

I had both internal (through the throat) and externally (on the left side) was sadated both times as out patient procedure. very little discomfort but had a little blood for 1-2 days after.

ken o.

To: Breathe-Support Sent: Thursday, July 2, 2009 9:50:00 AMSubject: Re: Re: really overwhelmed

Has anyone had the biopsy? Was is painful? Side effects? How long is the recovery and.. Do you have to be hospitalized? Is it done surgically or through the throat? I really am the type that has to know all the details. I have had a pft with moderate lung defect, and the cat scan with contrast that actually diagnosed the PF. There is such a huge difference in the different types especially the way each will respond to therapy and life expectancy.I have 6 children ranging from a 1st grade girl to my oldest daughter leaving for college. Although my husband knows, I cannot even think of letting my kids know that their mother might die. It is like tourture not knowing what type I have and how it will effect me. I am going on with life as usual but every time I loose my breath or cough. It hits me like a truck. I called ny columbian presb. Hospital n made an appt with dr kaner. Has anyone heard of him? He cannot see me til 7-29-09. How important is it

to get early diag. treatment? I know I am all over the place but this is how my brain emotions are. Running.Your imput is really appreciated.Thanks, dianeStaten island, ny, 43 IPF 6/09

Sent on the Now Network™ from my Sprint® BlackBerry

From: "darlenebarry1954" Date: Thu, 02 Jul 2009 16:12:23 -0000To: <Breathe-Support@ yahoogroups. com>Subject: Re: It has been awhile

Beth,I appreciate your response. When I see my doctor on the 6th I will take the supplements with me so he can see first hand what I'm taking. It is definitely my top goal to get as healthy as I can. Thank you for seeing about introducing me to your friend. As I said, the bronchoscopy result was inconclusive for langerhans but I guess that inconclusive means maybe yes maybe no. I really thought that the treatment for pulmonary fibrosis was the same. I guess I really have a lot more research to do. I guess that what ever is causing the fibrosis is what needs to be treated. I realize that there must be good cause sometimes for biopsy but honestly I think I'm really just scared of doing something or scared of not doing something or just plain scared. I couldn't afford the time away from work, but perhaps by having a biopsy I could be doing the right thing. I'm just not sure of how to make the right decision.Anyway, thanks again

for everything.Darlene>> 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@ yahoogroups. com> 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>