Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Hi Patty, I did not have the "biopsy" but did have the bronchoscope. ( I call it a mini biopsy) The HRCT showed the IPF plainly enough. BUT as to biopsy... ask your Dr. how your treatment would change if you have it. It is very invasive for a name of your PF. Since there is not a treatment for IPF why put yourself through the pain and danger of infection if your x rays and HRCT shows what it is.. Some just HAVE to know what kind they have so are willing to go through all the testing and surgery.. I am not that much convinced it helps so I will just watch and see how others do. Be sure you understand all your Dr. says about it.Give it a lot of thought and pray about it.. you will wind up doing whats best for you. Love & PrayersPeggy, IPF 2004 Hi everyone, Just wondering how many of you have had a lung biopsy. They asked me at U of Chicago and I said yes but all I had done was a bronchoscope where they took out some tissue through that. I never had an actual surgery and after reading all the posts the past two weeks I realize that perhaps what I had done was not really considered a lung biopsy. Did most of you have the surgery? Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 , what was your Diagnosis ? ILD covers all lung diseases. Love & PrayersPeggy, IPF 2004 I had lung bippsy on Nov 9, 09. The first couple of days were challenging bc of chest tube but after that I feel ok. I have read horror stories on lung biopsy but personally it was great bc i was able to get accurate diagnosis. Bronchioscopy came back inconclusive. E Tejeda ILD Nov 09 36 / SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Patti, I had an open lung biopsy in June of 2006. I think you will find that most here who have had a biopsy have had either a VATS (video assisted thoracic surgery) or an open lung biopsy. The VATS is generally considered somewhat easier to recover from since the incisions are smaller but both are invasive surgery where they remove small pieces of lung tissue. The transbronchial biopsy (which I'm assuming is what you had done) is definitely considered a biopsy but I've been told that it's extremely difficult to get the type and quantity tissue sample that is needed to accurately diagnose and differntiate the different types of pulmonary fibrosis during this type of biopsy. What did they tell you at Univesity of Chicago? I'm wondering if they've seen the results of your transbronchial and what they thought. If they accept them and agree with the diagnosis I would not worry about it. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Mon, December 14, 2009 10:38:55 AMSubject: lung biopsy Hi everyone,Just wondering how many of you have had a lung biopsy. They asked me at U of Chicago and I said yes but all I had done was a bronchoscope where they took out some tissue through that. I never had an actual surgery and after reading all the posts the past two weeks I realize that perhaps what I had done was not really considered a lung biopsy. Did most of you have the surgery?Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 No, the docs at some hospitals prefer to use technology over invasive procedures. you have to look at all of the pros and cons before having the biopsy Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: lung biopsyTo: Breathe-Support Date: Monday, December 14, 2009, 10:38 AM Hi everyone,Just wondering how many of you have had a lung biopsy. They asked me at U of Chicago and I said yes but all I had done was a bronchoscope where they took out some tissue through that. I never had an actual surgery and after reading all the posts the past two weeks I realize that perhaps what I had done was not really considered a lung biopsy. Did most of you have the surgery?Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Peggy that is a great answer i really like the way you said what you said since that is how i feel too besides my pulmonary co authored a paper on dangers of biopsies Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: lung biopsyTo: Breathe-Support Date: Monday, December 14, 2009, 10:58 AM Hi Patty, I did not have the "biopsy" but did have the bronchoscope. ( I call it a mini biopsy) The HRCT showed the IPF plainly enough. BUT as to biopsy... ask your Dr. how your treatment would change if you have it. It is very invasive for a name of your PF. Since there is not a treatment for IPF why put yourself through the pain and danger of infection if your x rays and HRCT shows what it is.. Some just HAVE to know what kind they have so are willing to go through all the testing and surgery.. I am not that much convinced it helps so I will just watch and see how others do. Be sure you understand all your Dr. says about it. Give it a lot of thought and pray about it.. you will wind up doing whats best for you. Love & Prayers Peggy, IPF 2004 Hi everyone,Just wondering how many of you have had a lung biopsy. They asked me at U of Chicago and I said yes but all I had done was a bronchoscope where they took out some tissue through that. I never had an actual surgery and after reading all the posts the past two weeks I realize that perhaps what I had done was not really considered a lung biopsy. Did most of you have the surgery?Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Beth, I had the bronchoscope done here with my local doctor in 2007. I took the results to U of Chicago last week so I guess I will know Wednesday if they were able to use those results. When the nurse asked me last week if I had a biopsy done I just said yes, but I didn't realize there were several different kinds. As always....thank you for the info. Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Hi Emma, I had a VATS biopsy on Oct. 23, 09. The operation went very well. I got out the next morning but stayed home from work for a week. There was an annoying problem with a " bruised nerve " as the doctor said. It made my right front side feel like it had a bad scape on it when my shirt touched it but if I pressed on that area I had no pain at all. That has since mostly subsided. My lung capacity has been down since the biopsy but my Pulmo doc said it should come back. It has returned to about 80% of what it was at this point. I'm hoping to get the rest back also. The biopsy confirmed what the Ct scan had already shown: UIP/IPF. I did it to get into a trial, but haven't been successful yet. Would I personally do it again, I'm not sure, but probably because the dx is now firm. Terre, IPF, 6-08, FL > > > I had lung bippsy on Nov 9, 09. The first couple of days were challenging bc of chest tube but after that I feel ok. I have read horror stories on lung biopsy but personally it was great bc i was able to get accurate diagnosis. Bronchioscopy came back inconclusive. > > > > E Tejeda > > ILD Nov 09 > > 36 / SC > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 I had the biopsy and almost died. I strongly urge you not to do it. I am currently being evaluated for a transplant and my pulmo-dude there says that once fibrosis is confirmed through scan and bronch, there is no good reason to have it. Seriously, I was in the hosp. for 2 months, had another surgury to try to seal the leak from the biopsy surgury, had 5 collapsed lungs and 5 chest tubes. Fibrotic lungs do not tolerate surgery well. They dont heal or seal correctly. When I went in, I only needed oxygen for exertion. Now I need 6 liters resting and 12+ liters walking around. It is as if I was time traveled past my early progression to what the doctor says is extremely poor condition. I am lucky that I am young and healthy enough to get the transplant. Otherwise, I feel like they stole the last year or two of functionality from me. Please think twice before letting them do it. > > > > Subject: lung biopsy > To: Breathe-Support > Date: Monday, December 14, 2009, 10:38 AM > > >  > > > > Hi everyone, > Just wondering how many of you have had a lung biopsy. They asked me at U of Chicago and I said yes but all I had done was a bronchoscope where they took out some tissue through that. I never had an actual surgery and after reading all the posts the past two weeks I realize that perhaps what I had done was not really considered a lung biopsy. Did most of you have the surgery? > > Patti > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 sneighbors just curious -- where are you or what hospital do you go to Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: lung biopsyTo: Breathe-Support Date: Monday, December 14, 2009, 6:03 PM I had the biopsy and almost died. I strongly urge you not to do it. I am currently being evaluated for a transplant and my pulmo-dude there says that once fibrosis is confirmed through scan and bronch, there is no good reason to have it. Seriously, I was in the hosp. for 2 months, had another surgury to try to seal the leak from the biopsy surgury, had 5 collapsed lungs and 5 chest tubes. Fibrotic lungs do not tolerate surgery well. They dont heal or seal correctly. When I went in, I only needed oxygen for exertion. Now I need 6 liters resting and 12+ liters walking around. It is as if I was time traveled past my early progression to what the doctor says is extremely poor condition. I am lucky that I am young and healthy enough to get the transplant. Otherwise, I feel like they stole the last year or two of functionality from me. Please think twice before letting them do it.> > > > Subject: lung biopsy> To: Breathe-Support@ yahoogroups. com> Date: Monday, December 14, 2009, 10:38 AM> > > Â > > > > Hi everyone,> Just wondering how many of you have had a lung biopsy. They asked me at U of Chicago and I said yes but all I had done was a bronchoscope where they took out some tissue through that. I never had an actual surgery and after reading all the posts the past two weeks I realize that perhaps what I had done was not really considered a lung biopsy. Did most of you have the surgery?> > Patti> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Hi Patti, I had an HRCT in June 2009 that revealed severe fibrosis and a bronchoscopy biopsy with lavage in July 2009 that did not reveal anything specific. My brother also had IPF in 2005 and did have a surgical lung biopsy which did not reveal anything other than IPF. He was in the hospital 4 days after the surgery, on the 2nd day of returning home he died of respiratory failure. So, both my doctors felt it was not necessary for me to have the surgical lung biopsy. Because of my family history their diagnosis is Familial IPF. If they had suggested the surgery I would have most likely said, no. C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! To: Breathe-Support Sent: Mon, December 14, 2009 7:58:20 AMSubject: Re: lung biopsy Hi Patty, I did not have the "biopsy" but did have the bronchoscope. ( I call it a mini biopsy) The HRCT showed the IPF plainly enough. BUT as to biopsy... ask your Dr. how your treatment would change if you have it. It is very invasive for a name of your PF. Since there is not a treatment for IPF why put yourself through the pain and danger of infection if your x rays and HRCT shows what it is.. Some just HAVE to know what kind they have so are willing to go through all the testing and surgery.. I am not that much convinced it helps so I will just watch and see how others do. Be sure you understand all your Dr. says about it. Give it a lot of thought and pray about it.. you will wind up doing whats best for you. Love & Prayers Peggy, IPF 2004 Hi everyone,Just wondering how many of you have had a lung biopsy. They asked me at U of Chicago and I said yes but all I had done was a bronchoscope where they took out some tissue through that. I never had an actual surgery and after reading all the posts the past two weeks I realize that perhaps what I had done was not really considered a lung biopsy. Did most of you have the surgery?Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 I thank everyone for all your comments concerning a surgical biopsy. It appears that the general consensus is that it often does not give any more information than the bronchoscope and perhaps not worth the risk. If they suggest this I certainly will voice my concerns. .......that is just terrible about your brother....I am so sorry. Patti....IPF....2007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Patti, I should add that my brother did not live a healthy lifestyle and had no health insurance. The free public health clinic he went to for about a year kept telling him he had asthma and giving him inhalers. Finally, they realized he needed oxygen and gave him a referral to the UWMC pulmonary clinic. At that time he came to live with me, but by the time my brother was evaluated at the UWMC he was at the end stage of IPF. According to the biopsy results his left lung was 3/4 full of fibrosis and his right lung 4/4. I still miss him. He was my baby brother and only 43 years old. He probably wouldn't have lived much longer but I do believe he wasn't healthy enough for that surgery. C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! To: Breathe-Support Sent: Mon, December 14, 2009 7:47:07 PMSubject: Re: lung biopsy I thank everyone for all your comments concerning a surgical biopsy. It appears that the general consensus is that it often does not give any more information than the bronchoscope and perhaps not worth the risk. If they suggest this I certainly will voice my concerns. .......that is just terrible about your brother....I am so sorry. Patti....IPF. ....2007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Patti Please don't jump to the conclusion that is a general concensus. It's a feeling help by many here but others of us did have a biopsy and did it for specific purposes and are glad we did. It depends on many factors. One of the primary factors is will you choose different treatment options based on it. I knew going in that it would perhaps dictate my treatment choice. I was confirmed firmly to have UIP and therefore have not chosen to take Imuran and Prednisone. Were I to have been found to have had NSIP I might have made a different decision. Some believe in taking them regardless so for those persons it doesn't help decide meds. While HRCT's are very accurate as far as determining whether you have an Interstitial Lung Disease they are far less accurate in deciding specificially which one. Broncho sometimes provide enough information to feel confident but often do not. I did have difficulties with my biopsy and would do it again but I'm very careful to express that its only a choice based on my specific situation and other personal choices. It is by no means automatic or one I'd recommend to everyone. Just don't jump to the conclusion based on those who post here as to any concensus. Also, some clinical trials do require a biopsy so that can be a factor, although most trials to not. You are doing the right thing in thinking about it and asking questions of your doctors as well. The final decision is yours, not your doctor's and not the forum's. As to any concensus, I don't think the medical experts have one either. I know some who always recommend the biopsy and others who rarely recommend it. > > I thank everyone for all your comments concerning a surgical biopsy. It appears that the general consensus is that it often does not give any more information than the bronchoscope and perhaps not worth the risk. If they suggest this I certainly will voice my concerns. > > .......that is just terrible about your brother....I am so sorry. > > > Patti....IPF....2007 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2009 Report Share Posted December 14, 2009 Patti Very good point she made is your condition, both in terms of the Fibrosis and other diseases you might have. For those in early stages and generally healthy the biopsy is much less taxing to their systems. Furthermore, they still have much time to look at treatment options. A biopsy at the state 's brother had reached seems on the surface quite risky versus any benefit to be gained. Doctors and surgeons seem to classify it as a minor surgery but I think of it as the invasive procedure it really is. While it might be simple for a surgeon, for the patient it can range from easy to very difficult. > > Patti, > I should add that my brother did not live a healthy lifestyle and had no health insurance. The free public health clinic he went to for about a year kept telling him he had asthma and giving him inhalers. Finally, they realized he needed oxygen and gave him a referral to the UWMC pulmonary clinic. At that time he came to live with me, but by the time my brother was evaluated at the UWMC he was at the end stage of IPF. According to the biopsy results his left lung was 3/4 full of fibrosis and his right lung 4/4. I still miss him. He was my baby brother and only 43 years old. He probably wouldn't have lived much longer but I do believe he wasn't healthy enough for that surgery. > > C_53_Familial IPF_5/09, Washington > HOPE doesn't disappoint! > > > > > > ________________________________ > From: Patti Bruckman napa73@... > To: Breathe-Support > Sent: Mon, December 14, 2009 7:47:07 PM > Subject: Re: lung biopsy > >  > I thank everyone for all your comments concerning a surgical biopsy. It appears that the general consensus is that it often does not give any more information than the bronchoscope and perhaps not worth the risk. If they suggest this I certainly will voice my concerns. >  >  .......that is just terrible about your brother....I am so sorry. >  >  > Patti....IPF. ...2007 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2009 Report Share Posted December 15, 2009 Patti, I would not call it a general consensus by any means. There is a wide variety of experiences and opinions here and very little in the way of agreement or consensus. That's what makes this decision so very difficult. I had an open lung biopsy in June of 2006. The surgery itself was uneventful. My reaction to the pre-op sedation and the anesthesia was anything but. I recovered fairly easily from the biopsy and once the stiches were out I've never had so much as a twinge. If I had it to do over again, I would because I gained useful information. It's not just a matter of obsessively having to know what the label is. It's learning and understanding what I have in order to know what my options are. Perhaps if the biopsy just said UIP I would feel differently, I'll never know. But because I was diagnosed with NSIP we knew that prednisone was a reasonable option for me and proceeded accordingly. My biopsy results still have bearing on my treatment all this time later. If I had not had the biopsy and was treated as though I had IPF/UIP I probably wouldn't be here since the steroids halted the progression and eventually stablized me. So I have no regrets. I would not however tell anyone to do the same thing. You have to weigh the pros and cons for yourself. Take into consideration things like your current condition and stability, how certain is your current diagnosis, your surgeons experience, your anethesiologists experience with pf patients....all these things factor in to a solid decision. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Mon, December 14, 2009 10:47:07 PMSubject: Re: lung biopsy I thank everyone for all your comments concerning a surgical biopsy. It appears that the general consensus is that it often does not give any more information than the bronchoscope and perhaps not worth the risk. If they suggest this I certainly will voice my concerns. .......that is just terrible about your brother....I am so sorry. Patti....IPF. ...2007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2009 Report Share Posted December 15, 2009 Patti, Let me secon what Bruce just said. From my reading posts on the subject over the past two years here, I would say that it would be much more accurate to say that opinions are pretty evenly split. I am one of those who did have the biopsy - I had a VATS the day after Christmas, in 2007. As far as I am concerned, it was the right thing to do AND I would do it again, in the same circumstances. I tolerated mine very well...spent just one night in the hospital and went home the next day, in the middle of a snow storm, naturally!!! I have not suffered any ill effects from the surgery and had no problems afterward. In my case, the biopsy was a key factor in getting me listed for transplant. I have been active on the transplant list since Oct. 19th of this year. Steve aka...Knip IPF 9/07 VATS 12/07 Transplant Listed 10/19/09 58 Plymouth, NH > > > > I thank everyone for all your comments concerning a surgical biopsy. > It appears that the general consensus is that it often does not give any > more information than the bronchoscope and perhaps not worth the risk. > If they suggest this I certainly will voice my concerns. > > > > .......that is just terrible about your brother....I am so sorry. > > > > > > Patti....IPF....2007 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2009 Report Share Posted December 15, 2009 I use my oxygen, monitor my saturations, do everything possible to avoid any complications or other sicknesses, take care of my other conditions and continue to try to figure more of them out, stand prepared to get immediate treatment if I get sick in any way, and live life to the fullest I can. I also stand prepared to change all decisions if the information changes. For instance, if a connective tissue disease were to fully manifest itself, I would take meds for it. > > > > I thank everyone for all your comments concerning a surgical biopsy. > It appears that the general consensus is that it often does not give any > more information than the bronchoscope and perhaps not worth the risk. > If they suggest this I certainly will voice my concerns. > > > > .......that is just terrible about your brother....I am so sorry. > > > > > > Patti....IPF. ...2007 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2009 Report Share Posted December 15, 2009 Beth,How come every time I read a post about IPF/UIP it is so frightening. I feel like I'm just waiting until the day I die. I know that I am suppose to fight this feeling but I don't see anything positive coming out of this. To: Breathe-Support Sent: Tue, December 15, 2009 10:48:10 AMSubject: Re: lung biopsy Patti, I would not call it a general consensus by any means. There is a wide variety of experiences and opinions here and very little in the way of agreement or consensus. That's what makes this decision so very difficult. I had an open lung biopsy in June of 2006. The surgery itself was uneventful. My reaction to the pre-op sedation and the anesthesia was anything but. I recovered fairly easily from the biopsy and once the stiches were out I've never had so much as a twinge. If I had it to do over again, I would because I gained useful information. It's not just a matter of obsessively having to know what the label is. It's learning and understanding what I have in order to know what my options are. Perhaps if the biopsy just said UIP I would feel differently, I'll never know. But because I was diagnosed with NSIP we knew that prednisone was a reasonable option for me and proceeded accordingly. My biopsy results still have bearing on my treatment all this time later. If I had not had the biopsy and was treated as though I had IPF/UIP I probably wouldn't be here since the steroids halted the progression and eventually stablized me. So I have no regrets. I would not however tell anyone to do the same thing. You have to weigh the pros and cons for yourself. Take into consideration things like your current condition and stability, how certain is your current diagnosis, your surgeons experience, your anethesiologists experience with pf patients..... all these things factor in to a solid decision. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Patti Bruckman <napa73 (AT) comcast (DOT) . net>To: Breathe-Support@ yahoogroups. comSent: Mon, December 14, 2009 10:47:07 PMSubject: Re: lung biopsy I thank everyone for all your comments concerning a surgical biopsy. It appears that the general consensus is that it often does not give any more information than the bronchoscope and perhaps not worth the risk. If they suggest this I certainly will voice my concerns. .......that is just terrible about your brother....I am so sorry. Patti....IPF. ...2007 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2009 Report Share Posted December 15, 2009 Beth and Bruce, Thank you for your informative replies. It appears that a lung biopsy is a very unique situation for each individual patient. I will surely ask questions and weigh the pros and cons before I agree to anything. Patti---IPF 2007---Indianapolis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2009 Report Share Posted December 15, 2009 Positive: You're alive. You can enjoy life with UIP/IPF. It can be the best years you've had if you make it so. You don't have Alzheimer's. You don't have cancer. You don't have ALS. You weren't just in an accident and laying paralyzed in a hospital bed being kept alive by artificial means. If what you want is to be told you're going to live forever and be healthy its not there. In fact the prognosis isn't good. But you are alive and life can be whatever you make it for as long as you have it. Death is a moment in time. It happens on its own and doesn't require a lot of time or effort or work ahead of time. Life is every moment until that one and each can be treasured. Most also believe that what comes after death is good. That's subject to individual belief. But today is about living. I have UIP/IPF and I'm making this the best time of my life. It's natural you are struggling with it. I strongly suggest counseling if dealing with the disease is overwhelming you. You aren't suppose to fight anything. But ultimately there is radical acceptance and then making the most of it. What have you really learned? That you'll ultimately die sometime? You knew that. That it may be sooner than you hoped? Wasn't that always possible? That it may be from UIP/IPF? It may not and as causes of death go this certainly is not one of the worst ones. Whether transplant is something you might pursue, I don't know. It's hard but I am thankful for what I do have. I do feel lucky when I see many others. Visit some forums of diseases where every day is filled with pain beyond our imagination. I've done so when other possible conditions have been mentioned. I think of Brett Bowser and what he and his family would have given for a diagnosis of just IPF/UIP. I know I'm more focused on living and on making the most of life than I ever was before. I know I strengthened relationships with family and visited those I hadn't seen for so long. In fact, I'll be making another trip in January or February and see them in the process (and you, Beth). I've done things since diagnosis that without this disease I would have put off forever, one year at a time. I always said " next year " but now I live each year as if it's my last. I wish I'd always lived this way. I know my personal odds because I'm too much a person seeking information and who has laid them out to help make some decisions in life. I've calculated odds of making it to various dates but I know I don't have a stamp on my derriere with an expiration date. My glass is 97% empty if I choose to look at it that way. Instead, I'm going to look at the 3% still in the glass and think of it as the finest champagne ever poured and savor it one sip at a time. And instead of thinking as a normal glass, I'm picturing a glass that is about a mile tall and so the amount still in it is still quite a bit to savor. This is just how I'm personally approached life with UIP/IPF. I'm not trying to minimize it but taking this kind of attitude is how I do live with it, how I do find the positive. I even laugh about my mortality and joke about the harsh realities with those closest to me because while I can't beat the disease physically, I can beat it mentally and emotionally and I intend to. Does it win some days? Oh yes it wins battles. But I'm winning the war. I can control that part. I control how I spend each day and how much pleasure I derive from it. I do have the world's best counselor and I lean on her and will do so when I need to. Some don't need one but I do. She's more valuable to me than my pulmonologist, rheumatologist, nephrologist, neurologist, pulmonary hypertension specialist, cardiologist, gastroenterologist, primary, opthalmologist, ontorologist, and dermatologist all combined. Life is good. It will end. But today it is good. And tomorrow it will be. I'll deal with Friday later. > > Beth, > How come every time I read a post about IPF/UIP it is so frightening. I feel like I'm just waiting until the day I die. I know that I am suppose to fight this feeling but I don't see anything positive coming out of this. > > > > > > ________________________________ > From: Beth mbmurtha@... > To: Breathe-Support > Sent: Tue, December 15, 2009 10:48:10 AM > Subject: Re: lung biopsy > > > Patti, > I would not call it a general consensus by any means. There is a wide variety of experiences and opinions here and very little in the way of agreement or consensus. That's what makes this decision so very difficult. > I had an open lung biopsy in June of 2006. The surgery itself was uneventful. My reaction to the pre-op sedation and the anesthesia was anything but. I recovered fairly easily from the biopsy and once the stiches were out I've never had so much as a twinge. If I had it to do over again, I would because I gained useful information. It's not just a matter of obsessively having to know what the label is. It's learning and understanding what I have in order to know what my options are. Perhaps if the biopsy just said UIP I would feel differently, I'll never know. But because I was diagnosed with NSIP we knew that prednisone was a reasonable option for me and proceeded accordingly. My biopsy results still have bearing on my treatment all this time later. If I had not had the biopsy and was treated as though I had IPF/UIP I probably wouldn't be here since the steroids halted the progression and eventually stablized me. So I have no regrets. > > I would not however tell anyone to do the same thing. You have to weigh the pros and cons for yourself. Take into consideration things like your current condition and stability, how certain is your current diagnosis, your surgeons experience, your anethesiologists experience with pf patients.... all these things factor in to a solid decision. > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > ________________________________ > From: Patti Bruckman napa73 (AT) comcast (DOT) net> > To: Breathe-Support@ yahoogroups. com > Sent: Mon, December 14, 2009 10:47:07 PM > Subject: Re: lung biopsy > > > I thank everyone for all your comments concerning a surgical biopsy. It appears that the general consensus is that it often does not give any more information than the bronchoscope and perhaps not worth the risk. If they suggest this I certainly will voice my concerns. > > .......that is just terrible about your brother....I am so sorry. > > > Patti....IPF. ...2007 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2009 Report Share Posted December 15, 2009 Bruce, well worded philosophy… Bob Dopher From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Bruce Sent: Tuesday, December 15, 2009 3:45 PM To: Breathe-Support Subject: Re: lung biopsy Positive: You're alive. You can enjoy life with UIP/IPF. It can be the best years you've had if you make it so. You don't have Alzheimer's. You don't have cancer. You don't have ALS. You weren't just in an accident and laying paralyzed in a hospital bed being kept alive by artificial means. If what you want is to be told you're going to live forever and be healthy its not there. In fact the prognosis isn't good. But you are alive and life can be whatever you make it for as long as you have it. Death is a moment in time. It happens on its own and doesn't require a lot of time or effort or work ahead of time. Life is every moment until that one and each can be treasured. Most also believe that what comes after death is good. That's subject to individual belief. But today is about living. I have UIP/IPF and I'm making this the best time of my life. It's natural you are struggling with it. I strongly suggest counseling if dealing with the disease is overwhelming you. You aren't suppose to fight anything. But ultimately there is radical acceptance and then making the most of it. What have you really learned? That you'll ultimately die sometime? You knew that. That it may be sooner than you hoped? Wasn't that always possible? That it may be from UIP/IPF? It may not and as causes of death go this certainly is not one of the worst ones. Whether transplant is something you might pursue, I don't know. It's hard but I am thankful for what I do have. I do feel lucky when I see many others. Visit some forums of diseases where every day is filled with pain beyond our imagination. I've done so when other possible conditions have been mentioned. I think of Brett Bowser and what he and his family would have given for a diagnosis of just IPF/UIP. I know I'm more focused on living and on making the most of life than I ever was before. I know I strengthened relationships with family and visited those I hadn't seen for so long. In fact, I'll be making another trip in January or February and see them in the process (and you, Beth). I've done things since diagnosis that without this disease I would have put off forever, one year at a time. I always said " next year " but now I live each year as if it's my last. I wish I'd always lived this way. I know my personal odds because I'm too much a person seeking information and who has laid them out to help make some decisions in life. I've calculated odds of making it to various dates but I know I don't have a stamp on my derriere with an expiration date. My glass is 97% empty if I choose to look at it that way. Instead, I'm going to look at the 3% still in the glass and think of it as the finest champagne ever poured and savor it one sip at a time. And instead of thinking as a normal glass, I'm picturing a glass that is about a mile tall and so the amount still in it is still quite a bit to savor. This is just how I'm personally approached life with UIP/IPF. I'm not trying to minimize it but taking this kind of attitude is how I do live with it, how I do find the positive. I even laugh about my mortality and joke about the harsh realities with those closest to me because while I can't beat the disease physically, I can beat it mentally and emotionally and I intend to. Does it win some days? Oh yes it wins battles. But I'm winning the war. I can control that part. I control how I spend each day and how much pleasure I derive from it. I do have the world's best counselor and I lean on her and will do so when I need to. Some don't need one but I do. She's more valuable to me than my pulmonologist, rheumatologist, nephrologist, neurologist, pulmonary hypertension specialist, cardiologist, gastroenterologist, primary, opthalmologist, ontorologist, and dermatologist all combined. Life is good. It will end. But today it is good. And tomorrow it will be. I'll deal with Friday later. > > Beth, > How come every time I read a post about IPF/UIP it is so frightening. I feel like I'm just waiting until the day I die. I know that I am suppose to fight this feeling but I don't see anything positive coming out of this. > > > > > > ________________________________ > From: Beth mbmurtha@... > To: Breathe-Support > Sent: Tue, December 15, 2009 10:48:10 AM > Subject: Re: lung biopsy > > > Patti, > I would not call it a general consensus by any means. There is a wide variety of experiences and opinions here and very little in the way of agreement or consensus. That's what makes this decision so very difficult. > I had an open lung biopsy in June of 2006. The surgery itself was uneventful. My reaction to the pre-op sedation and the anesthesia was anything but. I recovered fairly easily from the biopsy and once the stiches were out I've never had so much as a twinge. If I had it to do over again, I would because I gained useful information. It's not just a matter of obsessively having to know what the label is. It's learning and understanding what I have in order to know what my options are. Perhaps if the biopsy just said UIP I would feel differently, I'll never know. But because I was diagnosed with NSIP we knew that prednisone was a reasonable option for me and proceeded accordingly. My biopsy results still have bearing on my treatment all this time later. If I had not had the biopsy and was treated as though I had IPF/UIP I probably wouldn't be here since the steroids halted the progression and eventually stablized me. So I have no regrets. > > I would not however tell anyone to do the same thing. You have to weigh the pros and cons for yourself. Take into consideration things like your current condition and stability, how certain is your current diagnosis, your surgeons experience, your anethesiologists experience with pf patients.... all these things factor in to a solid decision. > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > ________________________________ > From: Patti Bruckman napa73 (AT) comcast (DOT) net> > To: Breathe-Support@ yahoogroups. com > Sent: Mon, December 14, 2009 10:47:07 PM > Subject: Re: lung biopsy > > > I thank everyone for all your comments concerning a surgical biopsy. It appears that the general consensus is that it often does not give any more information than the bronchoscope and perhaps not worth the risk. If they suggest this I certainly will voice my concerns. > > .......that is just terrible about your brother....I am so sorry. > > > Patti....IPF. ...2007 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2009 Report Share Posted December 15, 2009 Bruce, This was so well written and meaningful. Thanks for sharing these thoughts. Bettye Kline dx 06/09 To: Breathe-Support Sent: Tue, December 15, 2009 2:45:22 PMSubject: Re: lung biopsy Positive: You're alive. You can enjoy life with UIP/IPF. It can be thebest years you've had if you make it so. You don't have Alzheimer's. Youdon't have cancer. You don't have ALS. You weren't just in an accidentand laying paralyzed in a hospital bed being kept alive by artificialmeans.If what you want is to be told you're going to live forever and behealthy its not there. In fact the prognosis isn't good. But you arealive and life can be whatever you make it for as long as you have it.Death is a moment in time. It happens on its own and doesn't require alot of time or effort or work ahead of time. Life is every moment untilthat one and each can be treasured. Most also believe that what comesafter death is good. That's subject to individual belief.But today is about living. I have UIP/IPF and I'm making this the besttime of my life. It's natural you are struggling with it. I stronglysuggest counseling if dealing with the disease is overwhelming you. Youaren't suppose to fight anything. But ultimately there is radicalacceptance and then making the most of it.What have you really learned? That you'll ultimately die sometime? Youknew that. That it may be sooner than you hoped? Wasn't that alwayspossible? That it may be from UIP/IPF? It may not and as causes of deathgo this certainly is not one of the worst ones.Whether transplant is something you might pursue, I don't know.It's hard but I am thankful for what I do have. I do feel lucky when Isee many others. Visit some forums of diseases where every day is filledwith pain beyond our imagination. I've done so when other possibleconditions have been mentioned. I think of Brett Bowser and what he andhis family would have given for a diagnosis of just IPF/UIP.I know I'm more focused on living and on making the most of life than Iever was before. I know I strengthened relationships with family andvisited those I hadn't seen for so long. In fact, I'll be making anothertrip in January or February and see them in the process (and you, Beth). I've done things since diagnosis that without this disease Iwould have put off forever, one year at a time. I always said "nextyear" but now I live each year as if it's my last. I wish I'd alwayslived this way.I know my personal odds because I'm too much a person seekinginformation and who has laid them out to help make some decisions inlife. I've calculated odds of making it to various dates but I know Idon't have a stamp on my derriere with an expiration date.My glass is 97% empty if I choose to look at it that way. Instead, I'mgoing to look at the 3% still in the glass and think of it as the finestchampagne ever poured and savor it one sip at a time. And instead ofthinking as a normal glass, I'm picturing a glass that is about a miletall and so the amount still in it is still quite a bit to savor.This is just how I'm personally approached life with UIP/IPF. I'm nottrying to minimize it but taking this kind of attitude is how I do livewith it, how I do find the positive. I even laugh about my mortality andjoke about the harsh realities with those closest to me because while Ican't beat the disease physically, I can beat it mentally andemotionally and I intend to. Does it win some days? Oh yes it winsbattles. But I'm winning the war. I can control that part. I control howI spend each day and how much pleasure I derive from it. I do have theworld's best counselor and I lean on her and will do so when I need to.Some don't need one but I do. She's more valuable to me than mypulmonologist, rheumatologist, nephrologist, neurologist, pulmonaryhypertension specialist, cardiologist, gastroenterologist, primary,opthalmologist, ontorologist, and dermatologist all combined.Life is good. It will end. But today it is good. And tomorrow it willbe. I'll deal with Friday later.>> Beth,> How come every time I read a post about IPF/UIP it is so frightening. I feel like I'm just waiting until the day I die. I know that I amsuppose to fight this feeling but I don't see anything positive comingout of this.> >>>>> ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Tue, December 15, 2009 10:48:10 AM> Subject: Re: lung biopsy>>> Patti,> I would not call it a general consensus by any means. There is a widevariety of experiences and opinions here and very little in the way ofagreement or consensus. That's what makes this decision so verydifficult.> I had an open lung biopsy in June of 2006. The surgery itself wasuneventful. My reaction to the pre-op sedation and the anesthesia wasanything but. I recovered fairly easily from the biopsy and once thestiches were out I've never had so much as a twinge. If I had it to doover again, I would because I gained useful information. It's not just amatter of obsessively having to know what the label is. It's learningand understanding what I have in order to know what my options are.Perhaps if the biopsy just said UIP I would feel differently, I'll neverknow. But because I was diagnosed with NSIP we knew that prednisone wasa reasonable option for me and proceeded accordingly. My biopsy resultsstill have bearing on my treatment all this time later. If I had not hadthe biopsy and was treated as though I had IPF/UIP I probably wouldn'tbe here since the steroids halted the progression and eventuallystablized me. So I have no regrets.>> I would not however tell anyone to do the same thing. You have toweigh the pros and cons for yourself. Take into consideration thingslike your current condition and stability, how certain is your currentdiagnosis, your surgeons experience, your anethesiologists experiencewith pf patients.... all these things factor in to a solid decision.>> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>>>>>>> ____________ _________ _________ __> From: Patti Bruckman napa73 (AT) comcast (DOT) net>> To: Breathe-Support@ yahoogroups. com> Sent: Mon, December 14, 2009 10:47:07 PM> Subject: Re: lung biopsy>>> I thank everyone for all your comments concerning a surgical biopsy. It appears that the general consensus is that it often does not give anymore information than the bronchoscope and perhaps not worth the risk. If they suggest this I certainly will voice my concerns.>> .......that is just terrible about your brother....I am so sorry.>>> Patti....IPF. ...2007> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2009 Report Share Posted December 15, 2009 Bruce, I am so awed by what you wrote and how you wrote it. I am trying to live the same way though not always successful every day. If I am honest, I would need to say that I believe this is so much harder for my husband Jim than it is for me. I put everything in order for whenever it is needed (which would have been a good thing to do regardless) and since then, have been doing myh best to live each day to the fullest with my friends, family and my faith, thnk you so much...what you put here meant a great deal to me. Kathy......Fl PF.......4/07 Wtg for the TX call > > > > Beth, > > How come every time I read a post about IPF/UIP it is so frightening. > I feel like I'm just waiting until the day I die. I know that I am > suppose to fight this feeling but I don't see anything positive coming > out of this. > > > > > > > > > > > > ________________________________ > > From: Beth mbmurtha@ > > To: Breathe-Support > > Sent: Tue, December 15, 2009 10:48:10 AM > > Subject: Re: lung biopsy > > > > > > Patti, > > I would not call it a general consensus by any means. There is a wide > variety of experiences and opinions here and very little in the way of > agreement or consensus. That's what makes this decision so very > difficult. > > I had an open lung biopsy in June of 2006. The surgery itself was > uneventful. My reaction to the pre-op sedation and the anesthesia was > anything but. I recovered fairly easily from the biopsy and once the > stiches were out I've never had so much as a twinge. If I had it to do > over again, I would because I gained useful information. It's not just a > matter of obsessively having to know what the label is. It's learning > and understanding what I have in order to know what my options are. > Perhaps if the biopsy just said UIP I would feel differently, I'll never > know. But because I was diagnosed with NSIP we knew that prednisone was > a reasonable option for me and proceeded accordingly. My biopsy results > still have bearing on my treatment all this time later. If I had not had > the biopsy and was treated as though I had IPF/UIP I probably wouldn't > be here since the steroids halted the progression and eventually > stablized me. So I have no regrets. > > > > I would not however tell anyone to do the same thing. You have to > weigh the pros and cons for yourself. Take into consideration things > like your current condition and stability, how certain is your current > diagnosis, your surgeons experience, your anethesiologists experience > with pf patients.... all these things factor in to a solid decision. > > > > Beth > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > > > > > > > > ________________________________ > > From: Patti Bruckman napa73 (AT) comcast (DOT) net> > > To: Breathe-Support@ yahoogroups. com > > Sent: Mon, December 14, 2009 10:47:07 PM > > Subject: Re: lung biopsy > > > > > > I thank everyone for all your comments concerning a surgical biopsy. > It appears that the general consensus is that it often does not give any > more information than the bronchoscope and perhaps not worth the risk. > If they suggest this I certainly will voice my concerns. > > > > .......that is just terrible about your brother....I am so sorry. > > > > > > Patti....IPF. ...2007 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2009 Report Share Posted December 15, 2009 Kathy I think its more difficult for the spouse or caregiver. I think we can ease that by being open and discussing all, by talking about whats ahead and planning best we can, and by making our thoughts and desires clear so that they can know if they have to help carry them out they're doing what we'd like. At the same time those are things that we always should have discussed and should discuss both ways. Something could happen to them first and roles reverse. I do believe if the spouse knows we're comfortable with the realities they can be more so. Sometimes we fear because we believe the other is living in fear. If we can just somehow convey to each other that we're ok. Ok doesn't mean we're denying the facts, doesn't mean we're thrilled about them. Means simply " it is what it is so let's both accept it and make the most of it. " > > > > > > Beth, > > > How come every time I read a post about IPF/UIP it is so frightening. > > I feel like I'm just waiting until the day I die. I know that I am > > suppose to fight this feeling but I don't see anything positive coming > > out of this. > > > > > > > > > > > > > > > > > > ________________________________ > > > From: Beth mbmurtha@ > > > To: Breathe-Support > > > Sent: Tue, December 15, 2009 10:48:10 AM > > > Subject: Re: lung biopsy > > > > > > > > > Patti, > > > I would not call it a general consensus by any means. There is a wide > > variety of experiences and opinions here and very little in the way of > > agreement or consensus. That's what makes this decision so very > > difficult. > > > I had an open lung biopsy in June of 2006. The surgery itself was > > uneventful. My reaction to the pre-op sedation and the anesthesia was > > anything but. I recovered fairly easily from the biopsy and once the > > stiches were out I've never had so much as a twinge. If I had it to do > > over again, I would because I gained useful information. It's not just a > > matter of obsessively having to know what the label is. It's learning > > and understanding what I have in order to know what my options are. > > Perhaps if the biopsy just said UIP I would feel differently, I'll never > > know. But because I was diagnosed with NSIP we knew that prednisone was > > a reasonable option for me and proceeded accordingly. My biopsy results > > still have bearing on my treatment all this time later. If I had not had > > the biopsy and was treated as though I had IPF/UIP I probably wouldn't > > be here since the steroids halted the progression and eventually > > stablized me. So I have no regrets. > > > > > > I would not however tell anyone to do the same thing. You have to > > weigh the pros and cons for yourself. Take into consideration things > > like your current condition and stability, how certain is your current > > diagnosis, your surgeons experience, your anethesiologists experience > > with pf patients.... all these things factor in to a solid decision. > > > > > > Beth > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > > > > > > > > > > > > > > > ________________________________ > > > From: Patti Bruckman napa73 (AT) comcast (DOT) net> > > > To: Breathe-Support@ yahoogroups. com > > > Sent: Mon, December 14, 2009 10:47:07 PM > > > Subject: Re: lung biopsy > > > > > > > > > I thank everyone for all your comments concerning a surgical biopsy. > > It appears that the general consensus is that it often does not give any > > more information than the bronchoscope and perhaps not worth the risk. > > If they suggest this I certainly will voice my concerns. > > > > > > .......that is just terrible about your brother....I am so sorry. > > > > > > > > > Patti....IPF. ...2007 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2009 Report Share Posted December 15, 2009 Bruce,Very well said, very eloquently said. You can either laugh or cry. Most days I choose to laugh(damn the cough). Yes it does have its winning times, but betcha I'll win more than it. I AM more than IPF.Kathy IPF/cough that won't go awaySubject: Re: lung biopsyTo: Breathe-Support Date: Tuesday, December 15, 2009, 12:45 PM Positive: You're alive. You can enjoy life with UIP/IPF. It can be the best years you've had if you make it so. You don't have Alzheimer's. You don't have cancer. You don't have ALS. You weren't just in an accident and laying paralyzed in a hospital bed being kept alive by artificial means. If what you want is to be told you're going to live forever and be healthy its not there. In fact the prognosis isn't good. But you are alive and life can be whatever you make it for as long as you have it. Death is a moment in time. It happens on its own and doesn't require a lot of time or effort or work ahead of time. Life is every moment until that one and each can be treasured. Most also believe that what comes after death is good. That's subject to individual belief. But today is about living. I have UIP/IPF and I'm making this the best time of my life. It's natural you are struggling with it. I strongly suggest counseling if dealing with the disease is overwhelming you. You aren't suppose to fight anything. But ultimately there is radical acceptance and then making the most of it. What have you really learned? That you'll ultimately die sometime? You knew that. That it may be sooner than you hoped? Wasn't that always possible? That it may be from UIP/IPF? It may not and as causes of death go this certainly is not one of the worst ones. Whether transplant is something you might pursue, I don't know. It's hard but I am thankful for what I do have. I do feel lucky when I see many others. Visit some forums of diseases where every day is filled with pain beyond our imagination. I've done so when other possible conditions have been mentioned. I think of Brett Bowser and what he and his family would have given for a diagnosis of just IPF/UIP. I know I'm more focused on living and on making the most of life than I ever was before. I know I strengthened relationships with family and visited those I hadn't seen for so long. In fact, I'll be making another trip in January or February and see them in the process (and you, Beth). I've done things since diagnosis that without this disease I would have put off forever, one year at a time. I always said "next year" but now I live each year as if it's my last. I wish I'd always lived this way. I know my personal odds because I'm too much a person seeking information and who has laid them out to help make some decisions in life. I've calculated odds of making it to various dates but I know I don't have a stamp on my derriere with an expiration date. My glass is 97% empty if I choose to look at it that way. Instead, I'm going to look at the 3% still in the glass and think of it as the finest champagne ever poured and savor it one sip at a time. And instead of thinking as a normal glass, I'm picturing a glass that is about a mile tall and so the amount still in it is still quite a bit to savor. This is just how I'm personally approached life with UIP/IPF. I'm not trying to minimize it but taking this kind of attitude is how I do live with it, how I do find the positive. I even laugh about my mortality and joke about the harsh realities with those closest to me because while I can't beat the disease physically, I can beat it mentally and emotionally and I intend to. Does it win some days? Oh yes it wins battles. But I'm winning the war. I can control that part. I control how I spend each day and how much pleasure I derive from it. I do have the world's best counselor and I lean on her and will do so when I need to. Some don't need one but I do. She's more valuable to me than my pulmonologist, rheumatologist, nephrologist, neurologist, pulmonary hypertension specialist, cardiologist, gastroenterologist, primary, opthalmologist, ontorologist, and dermatologist all combined. Life is good. It will end. But today it is good. And tomorrow it will be. I'll deal with Friday later. > > Beth, > How come every time I read a post about IPF/UIP it is so frightening. I feel like I'm just waiting until the day I die. I know that I am suppose to fight this feeling but I don't see anything positive coming out of this. > > > > > > ____________ _________ _________ __ > From: Beth mbmurtha@... > To: Breathe-Support@ yahoogroups. com > Sent: Tue, December 15, 2009 10:48:10 AM > Subject: Re: lung biopsy > > > Patti, > I would not call it a general consensus by any means. There is a wide variety of experiences and opinions here and very little in the way of agreement or consensus. That's what makes this decision so very difficult. > I had an open lung biopsy in June of 2006. The surgery itself was uneventful. My reaction to the pre-op sedation and the anesthesia was anything but. I recovered fairly easily from the biopsy and once the stiches were out I've never had so much as a twinge. If I had it to do over again, I would because I gained useful information. It's not just a matter of obsessively having to know what the label is. It's learning and understanding what I have in order to know what my options are. Perhaps if the biopsy just said UIP I would feel differently, I'll never know. But because I was diagnosed with NSIP we knew that prednisone was a reasonable option for me and proceeded accordingly. My biopsy results still have bearing on my treatment all this time later. If I had not had the biopsy and was treated as though I had IPF/UIP I probably wouldn't be here since the steroids halted the progression and eventually stablized me. So I have no regrets. > > I would not however tell anyone to do the same thing. You have to weigh the pros and cons for yourself. Take into consideration things like your current condition and stability, how certain is your current diagnosis, your surgeons experience, your anethesiologists experience with pf patients.... all these things factor in to a solid decision. > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > > > ____________ _________ _________ __ > From: Patti Bruckman napa73 (AT) comcast (DOT) net> > To: Breathe-Support@ yahoogroups. com > Sent: Mon, December 14, 2009 10:47:07 PM > Subject: Re: lung biopsy > > > I thank everyone for all your comments concerning a surgical biopsy. It appears that the general consensus is that it often does not give any more information than the bronchoscope and perhaps not worth the risk. If they suggest this I certainly will voice my concerns. > > .......that is just terrible about your brother....I am so sorry. > > > Patti....IPF. ...2007 > Quote Link to comment Share on other sites More sharing options...
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