Bronchoscopy

[Guest guest]

Hi Everyone:

Thanx so much to everyone who took their precious time to answer my

initial posting. I realize now, I was starting to wear down, and

even lose my faith, as it were. If not for all your genuine caring

responses, and most important input of information, I'm sure I would

be a babling idiot by now!!

Today I went to see a Respirologist and Internist. As with all the

other specialists I've sent to since Jan. the news today was no

different!! Robyn everything has turned our negative, and your chest

sounds clear as a bell today!! However the Respirologist didn't have

the PFT results back, so he couldn't talk to me about them......(this

was the reason for my appt. with him today!!) However, he sent down

to the lab for blood work, and he's going to do a Bronchoscopy on me,

in the hospital, this Friday. I came home, & read 's message

(#47898) and now I'm concerned to read that bronchoscopy is NOT

recommended. Should I be worried about this Friday? I'm to see

another Dr. this Thurs.(who 1st suggested RP as a diagnosis), & my

family Dr. Thursday afternoon. I'll also ask him if he feels I

should go ahead with the Bronchoscopy on Friday. I did ask this Dr.

today if he was aware of, or knew anything about RP & he said: " I do

actually " , but I didn't think to ask if any of his pts. have RP!

Also, I was wondering if ANYONE in this group, lives in CANADA, let

alone ONTARIO. I live about 45 north of the citly of TORONTO.

I'm not too sure how to go about finding a Dr. who is " learned-

about " , (let alone treats patients) with RP.

Once again, thanx so much, may God Bless & Keep you all.

Fondly,

Robyn

[Guest guest]

Robyn,

>>>now I'm concerned to read that bronchoscopy is NOT <<<

This is only my opinion, but I had 4 bronchoscopies last year and one is

scheduled for this April. I do have a lot of pulmonary involvement so going in

to look is the only real way my doctors and I know how floppy or not my airways

are and if I have any inflammation. There are two types of bronchoscopies:

rigid and flexible. Both are done out-patient at a hospital with an amnesia-type

drug that makes you very sleepy and unable to remember the procedure plus

lidocaine gel squirted down your throat. It takes about 15-20 minutes. Tissue

and/or mucosal biopsies can be taken at this time if needed. Other than a raw

and sore throat for 3-4 hours after, I've only had one instance where the

bronchcoscopy irritated my airways and caused me to start coughing and I just

couldn't stop. I put off going to my pulmonologist for far too long and endured

4 days of coughing that eventually resulted in respiratory distress and put me

in the hospital for 9 days. I've learned my lesson and now just drive over to

my doctor's office and say " HELP " . Usually increased Prednisone and super cough

medicine can calm down that little muscle that causes you to cough

involuntarily.

Let us know the results of your PFT. I hope it's good. After several PFTs that

kept getting worse, I finally had one 2 weeks ago and showed some significant

improvement. I was thrilled.

I wish you good luck in finding a doctor who knows or is willing to learn about

RP if that is your diagnosis. I also have Wegener's Granulomatosis, but the

treatment plan for this is the same as RP. I've been on Cytoxan and Prednisone

plus Bactrim for 11 months and other than being tired, things are getting

better. Life is good again!

Take care,

(Kansas City)

Bronchoscopy

Re: Hi Everyone:

Re: Thanx so much to everyone who took their precious time to answer my

Re: initial posting. I realize now, I was starting to wear down, and

Re: even lose my faith, as it were. If not for all your genuine caring

Re: responses, and most important input of information, I'm sure I would

Re: be a babling idiot by now!!

Re: Today I went to see a Respirologist and Internist. As with all the

Re: other specialists I've sent to since Jan. the news today was no

Re: different!! Robyn everything has turned our negative, and your chest

Re: sounds clear as a bell today!! However the Respirologist didn't have

Re: the PFT results back, so he couldn't talk to me about them......(this

Re: was the reason for my appt. with him today!!) However, he sent down

Re: to the lab for blood work, and he's going to do a Bronchoscopy on me,

Re: in the hospital, this Friday. I came home, & read 's message

Re: (#47898) and now I'm concerned to read that bronchoscopy is NOT

Re: recommended. Should I be worried about this Friday? I'm to see

Re: another Dr. this Thurs.(who 1st suggested RP as a diagnosis), & my

Re: family Dr. Thursday afternoon. I'll also ask him if he feels I

Re: should go ahead with the Bronchoscopy on Friday. I did ask this Dr.

Re: today if he was aware of, or knew anything about RP & he said: " I do

Re: actually " , but I didn't think to ask if any of his pts. have RP!

Re: Also, I was wondering if ANYONE in this group, lives in CANADA, let

Re: alone ONTARIO. I live about 45 north of the citly of TORONTO.

Re: I'm not too sure how to go about finding a Dr. who is " learned-

Re: about " , (let alone treats patients) with RP.

Re: Once again, thanx so much, may God Bless & Keep you all.

Re: Fondly,

Re: Robyn

Re:

Re:

Re: DISCLAIMER!!

Re: WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED

HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING

ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE

NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT

FOR MANY OF US. THANK YOU

Re:

Re: