Guest guest Posted July 2, 2009 Report Share Posted July 2, 2009 Thank you MamaSher for your response. I am coming around to accepting this, at least on most days. I must admit that some days I wish that it was all behind me though, you know like a big project that I have to push through until it's done and then I can finally relax. That plan of action has always worked for me before, but I'm pretty sure that I need a different plan this time. I really don't like the idea of a biopsy. Mostly because I don't want to go back to the hospital. I don't usually do well in the hospital. I usually end up in ICU. This last time I skipped ICU, but while I was there they did a heart catherization and the device they use to close with malfunctioned. I was left on the table, to listen to them as they called the manufacture of the device to figure out what to do to fix the problem. Not a good feeling! I also understand that the biopsy is pretty invasive and that there are assiocated risks that go with it. Right now I am working but my husband and sister (who lives with us) are not. I'm the one who is paying all the necessary bills, I can't afford the time away from the job. I used all of my annual sick time and vacation for this year just finding out that I have IPF. After saying that I know for sure that I have medical insurance until the end of the year. My employer pays for that. If they decide to drop that benefit, I would not be able to afford my own insurance. If I'm going to have to have a biopsy the smart thing to do would be to have it right away. Too much to think about right now. I will post again after I see the doctor on the 6th. Darlene > > Hi Darlene.... goodness, we have all the time you need to 'get used to this'. > I apologize to you for not remembering you. Unless a person posts frequently I tend to mix them up with someone else or forget their particulars altogether. > My memory is certainly giving me fits, so you be patient with me too, ok? lol. > > Over the years you've had a lot to deal with. > > I am one who accepts this damned disease with a 'the way it is' attitude. Many here have had bios and many of those who did don't have definitive answers either. Those who do get answers seem to go on the typical prednisone which is apparently the only treatment for SOME strains of PF. > Since I was dx over 3 yrs ago I've just bumped along. Rejecting bio and prednisone. I've been fairly stable so must have a strain that progresses very slowly. > I had a real hard time for about 6-9 months after finding the board. I over reacted, had denial, just a hard time accepting my mortality. But not so now. Right now I'm doing 'ok' and when I get worse I'll worry then... > Weight gain is something soooo many of us women fight...It's worse with prednisone. The guys don't talk about wt gain much. > > I'll be watching for your results after July 6th. > MamaSher; 70, IPF 3-06, OR. > Nasturtiums > Don't fret about tomorrow, God is already there! > > 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...
Guest guest Posted July 2, 2009 Report Share Posted July 2, 2009 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2009 Report Share Posted July 2, 2009 Darlene... I'm imagining the pressure you must feel being the primary pay check. Especially dealing with our disease. Think carefully about the bio and get all the info you can and decide WHY you want to have it...that's what Bruce says. For me, just knowing what strain I have wouldn't necessarily guarantee a treatment plan...not much seems to be used beyond prednisone anyway and I do not want to take it. You will know what to do. I'm not trying to influence you to my way of thinking just influence you to think carefully about it... It's hard to know what to do isn't it... MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! 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...
Guest guest Posted July 2, 2009 Report Share Posted July 2, 2009 Sher, Just be cautious when equating all forms of pulmonary fibrosis. You are correct that many of us have types that don't have much in the way of treatment options. So what you say is true for some but not all of us. I know you were speaking about yourself but I just want to be really clear that we're not all the same and what's right for one person is not right for everyone. Darlene has said that she may indeed have Langerhans. That is what Cloninger has and has had successful treatment (and no predinisone!) She's no longer on O2 and is living a pretty normal life. Darlene, please pursue concrete diagnosis. I don't have any idea if that means biopsy. Much can be seen on a high resolution ct scan. Maybe that will be enough. But a specialist is essential. I hate to think of you going along, suffering when there may be treatment that could really help you! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, July 2, 2009 12:55:32 PMSubject: Re: Re: It has been awhile Darlene... I'm imagining the pressure you must feel being the primary pay check. Especially dealing with our disease. Think carefully about the bio and get all the info you can and decide WHY you want to have it...that's what Bruce says. For me, just knowing what strain I have wouldn't necessarily guarantee a treatment plan...not much seems to be used beyond prednisone anyway and I do not want to take it. You will know what to do. I'm not trying to influence you to my way of thinking just influence you to think carefully about it... It's hard to know what to do isn't it... MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! 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...
Guest guest Posted July 2, 2009 Report Share Posted July 2, 2009 Beth, I have had at least 3 ct scans since late April. Two of those they injected me with contrast dye. What is the difference between a regular ct scan and high resolution ct? I really don't know if this is langerhans or not, but I do know that I had eosinophilic granuloma (same thing affecting the bones). My doctors where quite interested in that fact, but since that was thirty years ago I don't have any of my medical facts or information about that. I don't think that the doctors would start treating for that without proof that it is the same thing. > >> > >> Hi Darlene.... goodness, we have all the time you need to 'get used to this'. > >> I apologize to you for not remembering you. Unless a person posts frequently I tend to mix them up with someone else or forget their particulars altogether. > >> My memory is certainly giving me fits, so you be patient with me too, ok? lol. > >> > >> Over the years you've had a lot to deal with. > >> > >> I am one who accepts this damned disease with a 'the way it is' attitude. Many here have had bios and many of those who did don't have definitive answers either. Those who do get answers seem to go on the typical prednisone which is apparently the only treatment for SOME strains of PF. > >> Since I was dx over 3 yrs ago I've just bumped along. Rejecting bio and prednisone. I've been fairly stable so must have a strain that progresses very slowly. > >> I had a real hard time for about 6-9 months after finding the board. I over reacted, had denial, just a hard time accepting my mortality. But not so now. Right now I'm doing 'ok' and when I get worse I'll worry then... > >> Weight gain is something soooo many of us women fight...It's worse with prednisone. The guys don't talk about wt gain much. > >> > >> I'll be watching for your results after July 6th. > >> MamaSher; 70, IPF 3-06, OR. > >> Nasturtiums > >> Don't fret about tomorrow, God is already there! > >> > >> 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...
Guest guest Posted July 2, 2009 Report Share Posted July 2, 2009 Darlene, Just want to make sure you understand why I'm being such a pain about this.I don't mean to be obnoxious but I'm a nurse and I just can't let this go by without speaking up. Eosinophilic granuloma is a form of Langerhans cell histocytosis. If you had EG as a younger person it is not surprising to see it show up later in your lungs. It's unlikely that your lung problems are an unrelated coincidence. And no of course the doctors wouldn't treat the Langerhans without some type of proof. But sometimes a specialist will look at the 'big picture' differently than another doctor. We shouldn't have to chase down a diagnosis on our own but the reality is sometimes that's what's necessary. There is a world of difference between a regular ct scan, even with dye injected and a high resolution ct scan. Some doctors have found that an HRCT scan can make a biopsy unnecessary in some cases. The 'slices' of picture or scan are much thinner and there is much much more detail visible. Again Darlene I'm sorry if I'm harping on this. It's just that I want you to be able to get an accurate diagnosis and whatever treatment will help you. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, July 2, 2009 1:56:30 PMSubject: Re: It has been awhile Beth,I have had at least 3 ct scans since late April. Two of those they injected me with contrast dye. What is the difference between a regular ct scan and high resolution ct? I really don't know if this is langerhans or not, but I do know that I had eosinophilic granuloma (same thing affecting the bones). My doctors where quite interested in that fact, but since that was thirty years ago I don't have any of my medical facts or information about that. I don't think that the doctors would start treating for that without proof that it is the same thing.> >>> >> Hi Darlene.... goodness, we have all the time you need to 'get used to this'.> >> I apologize to you for not remembering you. Unless a person posts frequently I tend to mix them up with someone else or forget their particulars altogether. > >> My memory is certainly giving me fits, so you be patient with me too, ok? lol.> >> > >> Over the years you've had a lot to deal with. > >> > >> I am one who accepts this damned disease with a 'the way it is' attitude. Many here have had bios and many of those who did don't have definitive answers either. Those who do get answers seem to go on the typical prednisone which is apparently the only treatment for SOME strains of PF.> >> Since I was dx over 3 yrs ago I've just bumped along. Rejecting bio and prednisone. I've been fairly stable so must have a strain that progresses very slowly.> >> I had a real hard time for about 6-9 months after finding the board. I over reacted, had denial, just a hard time accepting my mortality. But not so now. Right now I'm doing 'ok' and when I get worse I'll worry then...> >> Weight gain is something soooo many of us women fight...It's worse with prednisone. The guys don't talk about wt gain much.> >> > >> I'll be watching for your results after July 6th.> >> MamaSher; 70, IPF 3-06, OR. > >> Nasturtiums> >> Don't fret about tomorrow, God is already there!> >> > >> 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...
Guest guest Posted July 2, 2009 Report Share Posted July 2, 2009 Darlene/ Beth I'm going a step further than Beth on this. I know many are ok with Interstitial Lung Disease or Pulmonary Fibrosis as their diagnosis, but I could never have been. Darlene may have a treatable condition. I talk to all the time and it hurts thinking of what she had to go through so young but I rejoice that she got treatment and is doing well. There are over 200 forms of interstitial lung diseases already identified. Beth is alive because hers was treated and she's got potential for a long life because both her disease and the underlying cause have been determined. Joyce Rudy was able to remove the agent which was toxic to her and causing her fibrosis. I made treatment choices based on what I learned. Get to a center with experts. Don't accept a diagnosis from a primary or from a pulmonologist who has rarely if ever seen pulmonary fibrosis. Don't accept a diagnosis from a chest xray or PFT's. Don't leave yourself to wonder what if. I have a form generally not considered treatable but still the information has helped as I haven't pursued courses of low possibility. But I made an informed decision on treatment. If I didn't know I'd be wondering could it be NSIP, should I be on Imuran and Prednisone. If I hadn't been to rheumatologists I'd be wondering, do I have Lupus or was it caused by Polymyositis and should I be getting them treated. Now, if at some point the diagnosis changes, I'll change my course. But we have many members who've lived and managed one of these diseases a long time. There are so many different variations, different causes, different associated conditions. If you haven't had all the blood tests for connective tissue diseases, then you haven't fully been diagnosed. I also emphasize this more the younger you are. I'm not saying those of us old don't deserve to live much longer. But, I'm saying the treatable forms are much more common in younger. Also, I'm saying the treatment courses are more likely to be appropriate and a choice younger persons might make. IPF is less common in younger so often one will find a cause such as exposure to chemicals or medications or an underlying autoimmune disease or a type such as NSIP. The vast majority of pulmonologists in this country are not qualified to diagnose and treat Interstitial Lung Diseases. They may be great to coordinate with the medical center or provide immediate care. But, they haven't seen as much and they don't have access to as much information on a daily basis. Get to a Center of Excellence or equivalent. Pulmonary Hypertension is another disease to add to the group and say most doctors are not qualified to treat. The Pulmonary Hypertension Association has a list of doctors on their web site. I live in a town of 300,000 and a county of 750,000 but there is no doctor qualified to treat PH and that statement is not mine but one that more than one of my doctors has made. Fortunately there are experts in Dallas if I ever need one. I'm not being critical of doctors in these statements as it's a specialized area. I am critical however of those who don't refer you to those who are knowledgeable in the area. I know wouldn't be alive today if she hadn't ultimately gotten to the right doctor and received the correct diagnosis. Had it been left at Pulmonary Fibrosis, she never would have known. I'm thankful she got the help. I'm thankful for others who have had extended lives or comfort in their lives through thorough diagnosis. > > >> > > >> Hi Darlene.... goodness, we have all the time you need to 'get used to this'. > > >> I apologize to you for not remembering you. Unless a person posts frequently I tend to mix them up with someone else or forget their particulars altogether. > > >> My memory is certainly giving me fits, so you be patient with me too, ok? lol. > > >> > > >> Over the years you've had a lot to deal with. > > >> > > >> I am one who accepts this damned disease with a 'the way it is' attitude. Many here have had bios and many of those who did don't have definitive answers either. Those who do get answers seem to go on the typical prednisone which is apparently the only treatment for SOME strains of PF. > > >> Since I was dx over 3 yrs ago I've just bumped along. Rejecting bio and prednisone. I've been fairly stable so must have a strain that progresses very slowly. > > >> I had a real hard time for about 6-9 months after finding the board. I over reacted, had denial, just a hard time accepting my mortality. But not so now. Right now I'm doing 'ok' and when I get worse I'll worry then... > > >> Weight gain is something soooo many of us women fight...It's worse with prednisone. The guys don't talk about wt gain much. > > >> > > >> I'll be watching for your results after July 6th. > > >> MamaSher; 70, IPF 3-06, OR. > > >> Nasturtiums > > >> Don't fret about tomorrow, God is already there! > > >> > > >> 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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