Re: Re:lots of stomach problems

[Guest guest]

Patti,I had a VATS. They took to pieces of tissues to look at and if I had to do it again I would not. I know from other discussions that some had no problems and that they would do it again if they had too but when you end up with the complications that I had I am very sorry that I didn't get a second opinion about the surgery. I had a CT prior to the biopsy so maybe someone else couldn't of seen something that the pulmonogist didn't.To: Breathe-Support Sent: Thu, January 7, 2010 1:18:36 PMSubject: Re: Re:lots of stomach problems

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

[Guest guest]

Bruce,I have been told that some doctors don't even want to do biopsies anymore on the lungs. Why is that? and who did I hear that from? The nurse that is head of pulmonary rehab here told me that. Even one center of excellence doesn't recommend them. Why would the dx of UIP differ from taking meds? How do you know that something wouldn't work? I know that this discussion was just going on but how do you know something won't work. I have a hard time just excepting that nothing can be done to help those of us who have UIP.To: Breathe-Support Sent: Thu, January 7, 2010 1:35:56 PMSubject: Re:lots of stomach problems

Patti

People 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

>

[Guest guest]

,

My doctor at U of Chicago said they don't do the open lung biopsy anymore but they do the VATS biopsy....... maybe that is the confusion.

Patti Indianapolis IPF 2007

[Guest guest]

mary

i told you that some doctors don't want to do biopsies anymore because of the advances in technological diagnosing and the risks involved with biopsies

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re:lots of stomach problemsTo: Breathe-Support Date: Friday, January 8, 2010, 9:04 AM

Bruce,I have been told that some doctors don't even want to do biopsies anymore on the lungs. Why is that? and who did I hear that from? The nurse that is head of pulmonary rehab here told me that. Even one center of excellence doesn't recommend them. Why would the dx of UIP differ from taking meds? How do you know that something wouldn't work? I know that this discussion was just going on but how do you know something won't work. I have a hard time just excepting that nothing can be done to help those of us who have UIP.

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>

[Guest guest]

i should have said that "i am the one who told you......"

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Re:lots of stomach problemsTo: Breathe-Support Date: Friday, January 8, 2010, 9:40 AM

mary

i told you that some doctors don't want to do biopsies anymore because of the advances in technological diagnosing and the risks involved with biopsies

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: Terry Oettinger <iltopaint (AT) yahoo (DOT) com>Subject: Re: Re:lots of stomach problemsTo: Breathe-Support@ yahoogroups. comDate: Friday, January 8, 2010, 9:04 AM

Bruce,I have been told that some doctors don't even want to do biopsies anymore on the lungs. Why is that? and who did I hear that from? The nurse that is head of pulmonary rehab here told me that. Even one center of excellence doesn't recommend them. Why would the dx of UIP differ from taking meds? How do you know that something wouldn't work? I know that this discussion was just going on but how do you know something won't work. I have a hard time just excepting that nothing can be done to help those of us who have UIP.

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>

[Guest guest]

the prednisone in the cocktail was only 10 mgs

fortunately it worked for me

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re:lots of stomach problemsTo: Breathe-Support Date: Friday, January 8, 2010, 11:43 AM

There has been some small amount of data of use collected on biopsiesbut unfortunately not a lot of study I can find regarding complications.What I have read along the lines of what you mention is that many arenot recommending them for those over a certain age and for those beyonda certain point. Previously some people weren't getting them, then theircondition would start worsening rapidly and they'd rush in and do thebiopsy. Now, they recognize more that this is the wrong circumstancesfor one. I had mine when I was still physically strong even though mydisease was moderately progressed. But I had the strength and the timeto recover. Where the few studies I've seen to contraindicated biopsiesis on patients who are already into acute respiratory problems.I would have an argument with anyone or any doctor saying everyoneshould get a biopsy or saying no one should. It should be based on

allthe circumstances including physical condition, any meds previouslytried, clarity of the HRCT's in terms of likelihood they aredefinitive, and ultimately personal choice. It is a very complexdecision to be made and not one for which there is a universal answer.The use of the information to be gained is a primary issue. If oneintends to follow the same treatment regardless, then I see it as makingless sense. The accuracy of specific diagnosis (form of ILD) from CT'sis approximately 60% (determining that you have an ILD is 96%+) and frombiopsies is approximately 96%.Dr. Raghu, who mentions in her response, is one who believes intrying Imuran, Prednisone, and NAC regardless and letting that determinethe disease. Basically, that approach says that you take a high dosageof prednisone and if you show no response to it (progress while under itover 90 days) then you probably have UIP. If you

respond then youprobably have another form which it is effective on.UIP with no underlying connective tissue disease and no appreciableinflammation is not considered a condition for which meds are effective.Prednisone and others are effective on the other forms of ILD but not inthis circumstance. Now many doctors do offer the option or evenencourage taking them anyway. But even those doctors recognize that theyaren't considered effective. What those doctors do state is that perhapsthe diagnosis will be wrong and there is nothing else to offer so letstry anyway.There are also many other ILD's and other lung conditionsthat different meds are appropriate for.Based on my diagnosis I chose not to take prednisone. This was apersonal decision based on diagnosis, based on other conditions, basedon the side effects of prednisone, and based on my personal situation.Unlike you, I don't have a

problem accepting nothing can be done. Ifthats the reality, then so be it. I can accept the disease and theconsequences. However, the doctors do continue to be puzzled by otherthings related to my diseases and the questions as to whether or not Ihave a connective tissue disease. So, for that, I do continue to getmonitored, get labs, and see more doctors. If something different isdiscovered then I will proceed with new choices at that point.Someone else pointed out the problem with knowing whether any med isworking or not and that is stability. Some remain stable regardless. Ifyou have a condition which the med makes you feel better on and you seeimprovement, then you likely know the med is working. However, if youremain stable you don't know. Thats why we have clinical trials and whynow we're having the first clinical trials on imuran, prednisone, andnac for IPF, to see if they provide any help on

UIP. Certainly, no morethan I've progressed the past 2 years you would jump to the conclusionthe meds were working, if I was on any.> >> > Tina, and ,> >> > I was wondering what kind of biopsy you all had that you have beenhaving such problems.... .was it the VATS biopsy or the open lung? Thedoctor at U of Chicago said we will discuss that when I return inFeb......I think I am getting worried again.> >> > Patti Indianapolis IPF 2007> >>