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Bronchoscopy

A

anonymous

New member
I had many bronc's after my TX without meds. She will be fine. The meds will keep her from pain and she will not recall the process. The only issue is that they will spray a disgusting solution down her throat and put some xylocane via Q tip into her nose. She will ask many questions post Bronc, and not recall the answers.

She may cough some blood up later that day, do not be concerned and the staff should tell you what to look for.

I will have another bronc next month. Many post TX have them on a regular basis to look for rejection or infections.

CF 55 TX cepacia
 
A

anonymous

New member
I had many bronc's after my TX without meds. She will be fine. The meds will keep her from pain and she will not recall the process. The only issue is that they will spray a disgusting solution down her throat and put some xylocane via Q tip into her nose. She will ask many questions post Bronc, and not recall the answers.

She may cough some blood up later that day, do not be concerned and the staff should tell you what to look for.

I will have another bronc next month. Many post TX have them on a regular basis to look for rejection or infections.

CF 55 TX cepacia
 
A

anonymous

New member
Thanks so much to everyone that has replied. I feel a little more at ease. She is still running temps today and her blood cultures have come back negative as well as her sinus cultures. Don't know what this bug is but it is causing some major damage and has everyone baffled. On top of that the infectious disease doc told us today that if her bronch cultures don't show anything then it is just an unidentifiable virus and we will never have an answer or know how to treat anything other than the symptoms. So frustrating..............


Connie
 
A

anonymous

New member
Thanks so much to everyone that has replied. I feel a little more at ease. She is still running temps today and her blood cultures have come back negative as well as her sinus cultures. Don't know what this bug is but it is causing some major damage and has everyone baffled. On top of that the infectious disease doc told us today that if her bronch cultures don't show anything then it is just an unidentifiable virus and we will never have an answer or know how to treat anything other than the symptoms. So frustrating..............


Connie
 
T

Tom

New member
Just for some more off the topic information... Sorry..

I participate in another group and two of the posters are above 60. The woman is, I think, 69 and the man is 74. The woman has two severe mutations - DF508 and a stop mutation.

They are both inspirational to the group. Just goes to show that CF is so variable.

Topic can continue now. Thanks.

Tom
 
T

Tom

New member
Just for some more off the topic information... Sorry..

I participate in another group and two of the posters are above 60. The woman is, I think, 69 and the man is 74. The woman has two severe mutations - DF508 and a stop mutation.

They are both inspirational to the group. Just goes to show that CF is so variable.

Topic can continue now. Thanks.

Tom
 
B

Brad

New member
Sean, I am not sure what to say, We were just lucky I guess, My Brother is 58 w cf
and my little Sister is 42 with CF also,

We had all the normal problems one has with Cf, My Dad was a tuff Guy so I
guess he made us tuff also,,,,

I have been close to checking out twice, but then It's like in the rocky movie
I see my Dad, tellin me, Get Up. I didn't hear no Bell,,,,,,,

Above all just don't ever give up, no matter how much You want to and beleive
I wanted to a couple of times.....
Or maybe I am just to Hard Headed to beleive the stats.....
One more thing, I met a man a while back , he has Cf and he is 78, I guess he is 79 now
 
B

Brad

New member
Sean, I am not sure what to say, We were just lucky I guess, My Brother is 58 w cf
and my little Sister is 42 with CF also,

We had all the normal problems one has with Cf, My Dad was a tuff Guy so I
guess he made us tuff also,,,,

I have been close to checking out twice, but then It's like in the rocky movie
I see my Dad, tellin me, Get Up. I didn't hear no Bell,,,,,,,

Above all just don't ever give up, no matter how much You want to and beleive
I wanted to a couple of times.....
Or maybe I am just to Hard Headed to beleive the stats.....
One more thing, I met a man a while back , he has Cf and he is 78, I guess he is 79 now
 
A

anonymous

New member
Connie:

Is your doc. a CF pulmonologist or a pulmonologist that see's few CF's? If one hospital can't come up with an answer, consider talking to other CF centers or docs. A quick drop in FEV-1 is serious, someone may well have an answer. I have seen CF docs since 1957 and some are quantum times above others.

Fungal infections can take up to 2 months to culture in the lab. and ask the infection control group about these potential issues.

CF 55 TX cepacia
 
A

anonymous

New member
Connie:

Is your doc. a CF pulmonologist or a pulmonologist that see's few CF's? If one hospital can't come up with an answer, consider talking to other CF centers or docs. A quick drop in FEV-1 is serious, someone may well have an answer. I have seen CF docs since 1957 and some are quantum times above others.

Fungal infections can take up to 2 months to culture in the lab. and ask the infection control group about these potential issues.

CF 55 TX cepacia
 
A

anonymous

New member
My daughter's pulmonologist is also a CF specialist. He already called in another CF pulmonologist from another state that saw her over this past weekend. Her CF doc brought this up without our asking. He has taken care of our daughter since she was a baby and is as upset as we are. She has also been seen by 3 different infectious disease specialists. They have completed her cultures at this hospital and came up with nothing so 2 more sets of cultures have been completed and sent out to labs in other states. These have not come back yet, but they are trying to cover all bases. They even tested her for uncommon things to this area because we went to Cancun over Christmas. So far everything has come back negative.

Connie
 
A

anonymous

New member
My daughter's pulmonologist is also a CF specialist. He already called in another CF pulmonologist from another state that saw her over this past weekend. Her CF doc brought this up without our asking. He has taken care of our daughter since she was a baby and is as upset as we are. She has also been seen by 3 different infectious disease specialists. They have completed her cultures at this hospital and came up with nothing so 2 more sets of cultures have been completed and sent out to labs in other states. These have not come back yet, but they are trying to cover all bases. They even tested her for uncommon things to this area because we went to Cancun over Christmas. So far everything has come back negative.

Connie
 
A

anonymous

New member
Are the fungal cultures back? Also since you were in Cancun, perhaps see if they have a parisitologist on staff. Hope all is well.

CF 55 TX cepacia
 
A

anonymous

New member
Are the fungal cultures back? Also since you were in Cancun, perhaps see if they have a parisitologist on staff. Hope all is well.

CF 55 TX cepacia
 
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