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Post by toni on Jun 16, 2009 10:40:01 GMT -5
I received a call this morning from the Transplant Coordinator. Before a decision can be made on whether or not I am a candidate for transplant, they want to repeat the CT Scan of my lungs.
The scan they did in May showed a nodule. The repeat CT will be booked for August, three months after the first.
She said the nodule could be as a result of coming off of an infection or coming into one. Or it could be pre-cancerous. They wait three months to see if there are changes.
She also said these were quite common in emphysema patients.
This wait will be much harder...
Toni
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Post by aero63 on Jun 16, 2009 11:18:24 GMT -5
Oh Toni,
So sorry to hear this news. I wish the best for you. Yes, it seems like an incredibly long wait to hear the news about something like that.
Good luck.
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Post by Blossom/Jackie W. on Jun 16, 2009 11:39:46 GMT -5
Toni.... Before you get down in the dumps or hyper or anything like that.......... She told you the truth!
I've had many CT's in the past couple of years. I don't ever like hearing the word "nodule" when I see or read it on my own BUT; I do know that they can even "be there", "remain" there .... unchanged. It can be the nature of our disease/
Standard proceedure is to wait the 3 months and repeat. Even if they are still there; they may very well be "unchanged"
O.K?
I know you're nervous, I know you might be down, I know you might be feeling somewhat disappointed..... Try not to be. I'm not the only one here that'll tell you/confirm what you've been told. A number of folks here have had the same situation occur more than once. Nodules can be just that.... nodules.
Love & Hugs J
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Post by Colleen-Pa on Jun 16, 2009 13:59:52 GMT -5
Toni, I had the same thing happen, I had 2 of them but they were both small, one was 7mm and the other 4mm. The 4mm went away and the 7 is still there and the same, no change in 3 years.
Jackie is right, many of us have been there.
I know its not easy but try not to sweat it. I was also told that smokers are much more prone to these things also besides having emphysema and that they were more common than you think.
Sending prayers to you that it all goes well and you'll soon be listed. I'm with you in spirit!!
Aero, if they are small, they tend not to do anything drastic because 99% of the time they are nothing to worry about. I had to wait 6 months, was a long wait but nothing to worry about in the end!
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Post by toni on Jun 16, 2009 14:20:40 GMT -5
Thank you all.
Jackie, you know me too well! I was literally in tears after the call and I still haven't told my daughter or my Mom.
Having come off a huge infection last month, it does make sense, according to what she told me so that's what I'm going with!
What I don't understand, is why it didn't show up on my chest xrays? I had about four or five this past five months. Maybe it was too small?
Toni
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Post by wendyco on Jun 16, 2009 14:57:21 GMT -5
toni I have had so many things show up on Cat scans etc that I have learned not to get too upset....heck the last one they even did a pet scan on it and it was gone then.....try not to worry and try not to wonder too much the how's/why's/what's...sometimes it's just the way it is, no reason.........I know easier said than done but try to work on it........enjoy your summer
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Post by shelley on Jun 16, 2009 15:01:15 GMT -5
heya toni, not to worry, everyone's right, they've been finding those things in mine since i was first diagnosed 18 years ago, now at tgh they know it's just scar tissue from old infections; standard procedure is to scan every 2-3 months for 1 year and then every 2 years after that, no prob, you didn't come this far with this disease without picking up a couple of scars here and there....it's hard though and it's frightening; try to hold on, have a nice glass of wine or whatever your preference and enjoy today...it's going to be a fabulous sunset here into toronto land...i'll be thinking of you and sending warm thoughts your way
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Post by toni on Jun 16, 2009 16:17:57 GMT -5
Thank you all! It's so comforting to have you by my side.
And yes Shelley, that glass of wine sounds just fine!
Toni
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Post by susanny on Jun 16, 2009 22:38:53 GMT -5
Toni, I could feel your frustration in having to wait longer, and worry. You sound much better this evening. I'm glad all the posts helped you and hope you can get some sleep tonight. It sounds like you probably don't have anything to worry about... but I'll bet you will anyway. I'll keep you in my prayers for a relaxing wait and perfect outcome.
Sue
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Post by muffin on Jun 18, 2009 2:17:45 GMT -5
Toni, my heart goes out to you as that waiting is so hard when you have to try and push back any of the thoughts that come with something like that. I do know, I have had them on one scan and none on the next so it can be many things. Think positive, it can be hard but you are a woman of courage and you can do it. That time I hope flies by for you!! Hugs
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