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Message |
Haley
Member
Username: Oysters1
Post Number: 2
Registered: 04-2012
| | Posted on Thursday, April 19, 2012 - 06:32 am: | 
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Has anyone had experience with an open or VATS lung biopsy post-transplant? I have had 2 trans-bronch and 1 needle biopsy within a 6 weeks span and they SOMEHOW were not able to obtain samples from a sizeable nodule (3cm).
The concern now is nobody really has any idea what it could be (sputum, blood, surrounding lung tissue all come back clean, nothing is abnormal lab wise), and that they continue to grow. Meanwhile I've been on IV abx, anti-fungals, and a steroid pulse.
The only possibility that hasn't been explored at this point is PTLD because we'd only get a diagnosis from a biopsy. I was an EBV-mismatch however so it is a possibility.
Do I risk an open biopsy for the sake of a definitive diagnosis? I'm terrified and think the risks of a biopsy at this point are higher than anything that the nodules could be.
I would appreciate anyone's feedback! Thanks. |
ajs
Forum Leader
Username: Ajs
Post Number: 739
Registered: 03-2008
| | Posted on Thursday, April 19, 2012 - 11:22 am: |
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Haley,
Since you were a EBV mismatch, PTLD is certainly a possibility. But does that not have any other markers than the actual nodules? I was in a similar situation before transplant, where Hopkins wanted to do an open/VATS to confirm my diagnosis. Halfway thru the meeting with the surgeon and the list of possible complications, I said you can stop right there. I knew whatever I had didn't have to have a name for what was ultimately to come. Duke agreed, and told me to move there asap. Good luck, it's a bit of a quandary to be in.
Double-Lung transplant at Duke on 10/27/08
Pulmonary Fibrosis with traction bronchiectasis
http://healthierlungs.com
Live each day as if you were living forever, and live each moment as if it were your last.
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