Re: OLB

[Guest guest]

My doctor suggested that those of us with IPF and low FVC and DLCO scores are at risk for experiencing complications after an open lung biopsy. Not much too gain from it when your dx is IPF, so, I didn't have one.

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Thu, January 7, 2010 7:28:05 PMSubject: Re: Re:lots of stomach problems

The reason for me saying i would never do it again (open lung biopsy)is because i was not sick at all before it . I had no symptoms at all i felt fine.Now I'm always sick.I told my doctor i would have never done it knowing it would make me fill this way.I know my doctor said we needed to know what was going on with my lungs.I didn't know anything was wrong with me .I was having problems with my neck and needed to have some surgery.Before i could have that done had to have chest x-ray.That's when this all started.All I'm saying is i was working doing my thing didn't know i was even sick i got sick after the biopsy.Maybe i was on the edge of getting sick i don't know .Everybodys in a different situation we all have to make decisions good or bad .And really if i had to do it all over again would i .Probably would don't like how i fill but oh well its done.I wish everyone the best. This was just my experience.

Tina

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Thu, January 7, 2010 12:35:56 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

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