Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 MB,I'd like to reply to this that whether I was happy with the outcome is not the issue for me. After I had the biopsy I went home thinking that healing was on its way and was just dealing with the dx which was hard on me but low and be hold I ended up with a lung collapse 2 weeks later that landed me in the hospital for 12 days. The doctors said that they believe that is came from the biopsy. I was in the hospital again last week with air pockets in my lung and had to stay there for 24 hours. Before the biopsy I had no problems but breathing difficulties. To: Breathe-Support Sent: Thu, January 7, 2010 4:41:13 PMSubject: The biopsy question Bruce just gave a really good overview of how the feelings run regarding biopsy. It's a very subjective decision and everyone has to sort through the options and decide what's best for them. I had my biopsy in June of 06. Started out to be a VATS ended up being an OLB because I had major issues with anesthesia and problems with intubation that no one expected. I spent several days in ICU but once I was home and my stiches were out I've had no further problems from the biopsy. Honestly I think those that regret the biopsy the most are those that went through it and don't feel they gained any useful information. As difficult as my experience was, I would do it again without hesitation. I learned that I had fibrotic nsip, not uip/ipf. That changed my prognosis significantly and provided information on what treatment might help. It's different for everyone, there is no right or wrong answer. Discuss with your doctor, read all the information ane then decide what will work for you. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Thu, January 7, 2010 1:35:56 PMSubject: Re:lots of stomach problems PattiPeople have many different experiences with VATS. Some have absolutely no problems. Some have extensive problems. In the middle are those who spend three or four days in the hospital, go home, do fine, but do have some residual pain for a period of time. The problem is some doctors make it seem like nothing. I think thats because as Thoracic surgery goes its a relatively simple procedure. If you compare it to open heart surgery it is minor. But, it is a very invasive procedure. When they go in and start taking pieces of my organs it's a significant surgery to me. And for many it does have some residual pain.As to measuring any worsening in PFT's as a result, thats really hard to do. First, there is obviously some short term impact because of any pain one might be experiencing. Second, over any period of longer time, who is to know what otherwise might have been experienced. So, I encourage people to read all sides. But the key to me is understanding why you're doing it and what you're going to do with the information gathered. I knew that for me. In my case if I had UIP/IPF then I wasn't going to take meds. If I had NSIP then I would have taken some. So, as a result of knowing exactly what I wanted to find out and how I'd use the information, I consider mine worthwhile. Now, was it easy and simple? No. I had various issues, some that only I would have incurred related to anesthesia. Others typical, related to the site pain. But, I am glad I had the VATS. The doctors needed that information to feel any certainty on what I have. I have used that information to guide my treatment choices. I did come to this forum and read before I had mine. There were several at that time vocal in opposing them, some who had had one and some who hadn't. But there were others who had them and recommended them. I sorted through it all to figure out what was right for me. Right now the forum has just seen several who say they wish they hadn't. But let me assure you that the mood of reactions toward it comes and goes and during another period of time you might see a predominance of those who are glad they had it or thought there was nothing to it. The truth lies in all the responses and somewhere between the views to both extremes. >> Tina, and ,> > I was wondering what kind of biopsy you all had that you have been having such problems.... .was it the VATS biopsy or the open lung? The doctor at U of Chicago said we will discuss that when I return in Feb......I think I am getting worried again.> > Patti Indianapolis IPF 2007> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 That is the pits!! I'm hoping that things start getting better. I am thankful (knock on wood) that I haven't had those problems. I do know that things are not the same though. I don't know if you understand that there are times during the day that I feel that my lungs are really heavy. Thats the only way I can explain it, so I turn up the o2 and it goes away for awhile. I guess we just need to keep on keeping on. Gascoigne SD, 50 yrs old, Renaud's 2008, IPF 7/2009To: Breathe-Support@...Sent: Fri, January 8, 2010 10:19:24 AMSubject: Re: The biopsy question MB,I'd like to reply to this that whether I was happy with the outcome is not the issue for me. After I had the biopsy I went home thinking that healing was on its way and was just dealing with the dx which was hard on me but low and be hold I ended up with a lung collapse 2 weeks later that landed me in the hospital for 12 days. The doctors said that they believe that is came from the biopsy. I was in the hospital again last week with air pockets in my lung and had to stay there for 24 hours. Before the biopsy I had no problems but breathing difficulties. From: Beth <mbmurtha (AT) yahoo (DOT) . com>To: Breathe-Support@ yahoogroups. comSent: Thu, January 7, 2010 4:41:13 PMSubject: The biopsy question Bruce just gave a really good overview of how the feelings run regarding biopsy. It's a very subjective decision and everyone has to sort through the options and decide what's best for them. I had my biopsy in June of 06. Started out to be a VATS ended up being an OLB because I had major issues with anesthesia and problems with intubation that no one expected. I spent several days in ICU but once I was home and my stiches were out I've had no further problems from the biopsy. Honestly I think those that regret the biopsy the most are those that went through it and don't feel they gained any useful information. As difficult as my experience was, I would do it again without hesitation. I learned that I had fibrotic nsip, not uip/ipf. That changed my prognosis significantly and provided information on what treatment might help. It's different for everyone, there is no right or wrong answer. Discuss with your doctor, read all the information ane then decide what will work for you.. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Thu, January 7, 2010 1:35:56 PMSubject: Re:lots of stomach problems PattiPeople have many different experiences with VATS. Some have absolutely no problems. Some have extensive problems. In the middle are those who spend three or four days in the hospital, go home, do fine, but do have some residual pain for a period of time. The problem is some doctors make it seem like nothing. I think thats because as Thoracic surgery goes its a relatively simple procedure. If you compare it to open heart surgery it is minor. But, it is a very invasive procedure. When they go in and start taking pieces of my organs it's a significant surgery to me. And for many it does have some residual pain.As to measuring any worsening in PFT's as a result, thats really hard to do. First, there is obviously some short term impact because of any pain one might be experiencing. Second, over any period of longer time, who is to know what otherwise might have been experienced. So, I encourage people to read all sides. But the key to me is understanding why you're doing it and what you're going to do with the information gathered. I knew that for me. In my case if I had UIP/IPF then I wasn't going to take meds. If I had NSIP then I would have taken some. So, as a result of knowing exactly what I wanted to find out and how I'd use the information, I consider mine worthwhile. Now, was it easy and simple? No. I had various issues, some that only I would have incurred related to anesthesia. Others typical, related to the site pain. But, I am glad I had the VATS. The doctors needed that information to feel any certainty on what I have. I have used that information to guide my treatment choices. I did come to this forum and read before I had mine. There were several at that time vocal in opposing them, some who had had one and some who hadn't. But there were others who had them and recommended them. I sorted through it all to figure out what was right for me. Right now the forum has just seen several who say they wish they hadn't. But let me assure you that the mood of reactions toward it comes and goes and during another period of time you might see a predominance of those who are glad they had it or thought there was nothing to it. The truth lies in all the responses and somewhere between the views to both extremes. >> Tina, and ,> > I was wondering what kind of biopsy you all had that you have been having such problems.... .was it the VATS biopsy or the open lung? The doctor at U of Chicago said we will discuss that when I return in Feb......I think I am getting worried again.> > Patti Indianapolis IPF 2007> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 , I apologize if I hurt your feelings or offended you in some way. All I meant was that in my experience here on the board over the last 3 and a half years it seems like those that regret the biopsy the most are those who didn't gain any useful information. I stand by that. It's just an observation. Others I'm sure have regretted having the biopsy for many reasons and having complications like lung collapse would certainly make me think twice about my decision. If something like that had happened to me my feelings might be very different. Ongoing problems like yours would be a nightmare to try to cope with and I'm sorry you have all this on your plate in addition to to the pulmonary fibrosis. Lung biopsy whether VATS or OLB is invasive surgery. It is not to be taken lightly and there are experts who now feel it is unnecessary for many. Everyone has to make their own decision and do what's best for them. I had mine, got through it and would do the same thing again in the same situation. You feel differently because you are in a completely different circumstance. I respect that and would never tell you not to feel the way you do. In fact I would probably feel the same in your shoes. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Fri, January 8, 2010 11:19:24 AMSubject: Re: The biopsy question MB,I'd like to reply to this that whether I was happy with the outcome is not the issue for me. After I had the biopsy I went home thinking that healing was on its way and was just dealing with the dx which was hard on me but low and be hold I ended up with a lung collapse 2 weeks later that landed me in the hospital for 12 days. The doctors said that they believe that is came from the biopsy. I was in the hospital again last week with air pockets in my lung and had to stay there for 24 hours. Before the biopsy I had no problems but breathing difficulties. From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, January 7, 2010 4:41:13 PMSubject: The biopsy question Bruce just gave a really good overview of how the feelings run regarding biopsy. It's a very subjective decision and everyone has to sort through the options and decide what's best for them. I had my biopsy in June of 06. Started out to be a VATS ended up being an OLB because I had major issues with anesthesia and problems with intubation that no one expected. I spent several days in ICU but once I was home and my stiches were out I've had no further problems from the biopsy. Honestly I think those that regret the biopsy the most are those that went through it and don't feel they gained any useful information. As difficult as my experience was, I would do it again without hesitation. I learned that I had fibrotic nsip, not uip/ipf. That changed my prognosis significantly and provided information on what treatment might help. It's different for everyone, there is no right or wrong answer. Discuss with your doctor, read all the information ane then decide what will work for you. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Thu, January 7, 2010 1:35:56 PMSubject: Re:lots of stomach problems PattiPeople have many different experiences with VATS. Some have absolutely no problems. Some have extensive problems. In the middle are those who spend three or four days in the hospital, go home, do fine, but do have some residual pain for a period of time. The problem is some doctors make it seem like nothing. I think thats because as Thoracic surgery goes its a relatively simple procedure. If you compare it to open heart surgery it is minor. But, it is a very invasive procedure. When they go in and start taking pieces of my organs it's a significant surgery to me. And for many it does have some residual pain.As to measuring any worsening in PFT's as a result, thats really hard to do. First, there is obviously some short term impact because of any pain one might be experiencing. Second, over any period of longer time, who is to know what otherwise might have been experienced. So, I encourage people to read all sides. But the key to me is understanding why you're doing it and what you're going to do with the information gathered. I knew that for me. In my case if I had UIP/IPF then I wasn't going to take meds. If I had NSIP then I would have taken some. So, as a result of knowing exactly what I wanted to find out and how I'd use the information, I consider mine worthwhile. Now, was it easy and simple? No. I had various issues, some that only I would have incurred related to anesthesia. Others typical, related to the site pain. But, I am glad I had the VATS. The doctors needed that information to feel any certainty on what I have. I have used that information to guide my treatment choices. I did come to this forum and read before I had mine. There were several at that time vocal in opposing them, some who had had one and some who hadn't. But there were others who had them and recommended them. I sorted through it all to figure out what was right for me. Right now the forum has just seen several who say they wish they hadn't. But let me assure you that the mood of reactions toward it comes and goes and during another period of time you might see a predominance of those who are glad they had it or thought there was nothing to it. The truth lies in all the responses and somewhere between the views to both extremes. >> Tina, and ,> > I was wondering what kind of biopsy you all had that you have been having such problems.... .was it the VATS biopsy or the open lung? The doctor at U of Chicago said we will discuss that when I return in Feb......I think I am getting worried again.> > Patti Indianapolis IPF 2007> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 Beth, thanks for the note. I didn't in any way feel offended I guess I just feel bad about the whole biopsy situation. I did not have any bad reactions to the surgery in general. As a matter of fact I came out of it very quickly and laid in recovery for a long time just waiting for a room. in ICU. The nurses were even attentive. I guess it's what happened afterward that makes sad not offended. And yes, everyone one has to make their own decision on this topic. I wasn't informed very well what was going to happened either.Thanks again. To: Breathe-Support Sent: Fri, January 8, 2010 5:22:30 PMSubject: Re: The biopsy question , I apologize if I hurt your feelings or offended you in some way. All I meant was that in my experience here on the board over the last 3 and a half years it seems like those that regret the biopsy the most are those who didn't gain any useful information. I stand by that. It's just an observation. Others I'm sure have regretted having the biopsy for many reasons and having complications like lung collapse would certainly make me think twice about my decision. If something like that had happened to me my feelings might be very different. Ongoing problems like yours would be a nightmare to try to cope with and I'm sorry you have all this on your plate in addition to to the pulmonary fibrosis. Lung biopsy whether VATS or OLB is invasive surgery. It is not to be taken lightly and there are experts who now feel it is unnecessary for many. Everyone has to make their own decision and do what's best for them. I had mine, got through it and would do the same thing again in the same situation. You feel differently because you are in a completely different circumstance. I respect that and would never tell you not to feel the way you do. In fact I would probably feel the same in your shoes. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Fri, January 8, 2010 11:19:24 AMSubject: Re: The biopsy question MB,I'd like to reply to this that whether I was happy with the outcome is not the issue for me. After I had the biopsy I went home thinking that healing was on its way and was just dealing with the dx which was hard on me but low and be hold I ended up with a lung collapse 2 weeks later that landed me in the hospital for 12 days. The doctors said that they believe that is came from the biopsy. I was in the hospital again last week with air pockets in my lung and had to stay there for 24 hours. Before the biopsy I had no problems but breathing difficulties. From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thu, January 7, 2010 4:41:13 PMSubject: The biopsy question Bruce just gave a really good overview of how the feelings run regarding biopsy. It's a very subjective decision and everyone has to sort through the options and decide what's best for them. I had my biopsy in June of 06. Started out to be a VATS ended up being an OLB because I had major issues with anesthesia and problems with intubation that no one expected. I spent several days in ICU but once I was home and my stiches were out I've had no further problems from the biopsy. Honestly I think those that regret the biopsy the most are those that went through it and don't feel they gained any useful information. As difficult as my experience was, I would do it again without hesitation. I learned that I had fibrotic nsip, not uip/ipf. That changed my prognosis significantly and provided information on what treatment might help. It's different for everyone, there is no right or wrong answer. Discuss with your doctor, read all the information ane then decide what will work for you. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Thu, January 7, 2010 1:35:56 PMSubject: Re:lots of stomach problems PattiPeople have many different experiences with VATS. Some have absolutely no problems. Some have extensive problems.. In the middle are those who spend three or four days in the hospital, go home, do fine, but do have some residual pain for a period of time. The problem is some doctors make it seem like nothing. I think thats because as Thoracic surgery goes its a relatively simple procedure. If you compare it to open heart surgery it is minor. But, it is a very invasive procedure. When they go in and start taking pieces of my organs it's a significant surgery to me. And for many it does have some residual pain.As to measuring any worsening in PFT's as a result, thats really hard to do. First, there is obviously some short term impact because of any pain one might be experiencing. Second, over any period of longer time, who is to know what otherwise might have been experienced. So, I encourage people to read all sides. But the key to me is understanding why you're doing it and what you're going to do with the information gathered. I knew that for me. In my case if I had UIP/IPF then I wasn't going to take meds. If I had NSIP then I would have taken some. So, as a result of knowing exactly what I wanted to find out and how I'd use the information, I consider mine worthwhile. Now, was it easy and simple? No. I had various issues, some that only I would have incurred related to anesthesia. Others typical, related to the site pain. But, I am glad I had the VATS. The doctors needed that information to feel any certainty on what I have. I have used that information to guide my treatment choices. I did come to this forum and read before I had mine. There were several at that time vocal in opposing them, some who had had one and some who hadn't. But there were others who had them and recommended them. I sorted through it all to figure out what was right for me. Right now the forum has just seen several who say they wish they hadn't. But let me assure you that the mood of reactions toward it comes and goes and during another period of time you might see a predominance of those who are glad they had it or thought there was nothing to it. The truth lies in all the responses and somewhere between the views to both extremes. >> Tina, and ,> > I was wondering what kind of biopsy you all had that you have been having such problems..... .was it the VATS biopsy or the open lung? The doctor at U of Chicago said we will discuss that when I return in Feb......I think I am getting worried again.> > Patti Indianapolis IPF 2007> Quote Link to comment Share on other sites More sharing options...
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