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Can I scream yet?

#41

I'd like to take a couple minutes to thank everyone for their kind words, helpfulness, and encouragement. I'm very grateful that this community is so welcoming, accepting and dare I say... loving. Right now I will admit to being scared seven ways sideways about what is going on in my body. More because getting any information out of my doctors is like trying to pry a nut away from a squirrel.

When the culture results came back, nobody bothered to call me and let me know about them I had to call them and demand answers (SkyLakes has a patient resource that lets you see test results etc as they are released). It's frustrating because while I sit here and stress, they don't think even a little information is worth giving to me unless I start screaming at them. I had to threaten them with calling the CDC just to get them off their butts to do tests to see if the lesion in my lungs was active TB or not.

I'm def going to chew my doctors new rear ends on this subject and let them know that ignoring a patient and not giving them even the courtesy of a call to say "we still don't know what is going on but we are working towards finding out" is the least they can do rather than leave their patient to worry and stress w/o any information at all.

You guys have been incredibly supporting and friendly through this with me. I am very glad I found this forum when I did. Thanks for letting me rant, reveal my fears and helping me with information on NBE. Lotus.... your posts still make my head swim but I am starting to gain a clue... sorta... almost... crap, it got away again....

~Elain
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#42

http://youtu.be/CyvSmhrlJwE

http://youtu.be/hX49Q1A8_PE

http://youtu.be/BJA3d5cP41Y

http://youtu.be/DgbdNNfotwM

http://youtu.be/lGwkt1CWhhw

http://youtu.be/sKhzbcpI_ro

http://youtu.be/km2cqQNFtEs
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#43

Iv'e noticed a disturbing number of doctors currently seem to have a completely toxic bedside manner, no idea why.
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#44

http://youtu.be/XdLyMhNdcSc

http://youtu.be/8JF7TcPsmvI

http://youtu.be/VCnulshlVdQ

http://youtu.be/_TptKbxQJr4
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#45

*Update*

basic Cultures and Cytology from my Bronchoscopy came back good. No malignant cells detected hanging around freely in my lungs, no bad bacteria or fungals in my lungs that these tests were designed to detect (they were not designed to test for TB bacteria). I am still waiting for the acid-fast test to come back and the DNA test to come back. If either of those show TB bacteria.. then I am probably an active TB case, if they don't, then I am probably a latent case. So... everything there is apparently still up in the air. My doctor did say he saw no normal signs of an active TB infection though, so that is hopeful.

The initial check for malignancy is just free cells (shedding). I am probably going to have to have a needle biopsy as well. The lesion/tumor is likely NOT malignant if I am reading the results correctly. That leaves benign as the likely possibility or a TB cavitation which could be active or latent. Still waiting for those tests to come back.

If things are what I think they are from reading the test results.... then I have likely dodged a bullet as long as the TB infection isn't one of the drug resistant or extreme drug resistant strains. If it's either of those... things get hinky fast as the antibiotics they use to treat those play havoc with the liver and can perm damage it.

So.. so far... things seem encouraging.

I also had a heart stress test and radioactive iso scans today. Initial images indicate my heart is in good condition. No overt signs of damage. I'll probably have those test results back by Friday before I know for sure though. The tech said from his experience, my heart looked to be in pretty decent shape for a 50 yr old that has had 3 previous heart attacks.

Color me... generally relieved at this point.

~Elain
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#46

(28-01-2015, 02:18 AM)ElainMoria Wrote:  *Update*

basic Cultures and Cytology from my Bronchoscopy came back good. No malignant cells detected hanging around freely in my lungs, no bad bacteria or fungals in my lungs that these tests were designed to detect (they were not designed to test for TB bacteria). I am still waiting for the acid-fast test to come back and the DNA test to come back. If either of those show TB bacteria.. then I am probably an active TB case, if they don't, then I am probably a latent case. So... everything there is apparently still up in the air. My doctor did say he saw no normal signs of an active TB infection though, so that is hopeful.

The initial check for malignancy is just free cells (shedding). I am probably going to have to have a needle biopsy as well. The lesion/tumor is likely NOT malignant if I am reading the results correctly. That leaves benign as the likely possibility or a TB cavitation which could be active or latent. Still waiting for those tests to come back.

If things are what I think they are from reading the test results.... then I have likely dodged a bullet as long as the TB infection isn't one of the drug resistant or extreme drug resistant strains. If it's either of those... things get hinky fast as the antibiotics they use to treat those play havoc with the liver and can perm damage it.

So.. so far... things seem encouraging.

I also had a heart stress test and radioactive iso scans today. Initial images indicate my heart is in good condition. No overt signs of damage. I'll probably have those test results back by Friday before I know for sure though. The tech said from his experience, my heart looked to be in pretty decent shape for a 50 yr old that has had 3 previous heart attacks.

Color me... generally relieved at this point.

~Elain

Praying for your good health . God bless .
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#47

Well, thought i'd share one of the three Cytology reports with all of you. All three say basically the same thing with minor variations for the type of specimen collected.

~Elain

--------------------------------------------------------------------------------------------
RUN DATE: 01/27/15 Sky Lakes Laboratory **LIVE** PAGE 1
RUN TIME: 1409 Specimen Inquiry
RUN USER: redacted
--------------------------------------------------------------------------------------------
PATIENT: Elain Moria ACCT #: redacted LOC: SDC U #: redacted
AGE/SX: 50/M ROOM: REG: 01/22/15
REG DR: Panossian,David H DOB: 10/04/64 BED: DIS:
STATUS: DEP SDC TLOC:
--------------------------------------------------------------------------------------------

SPEC #: 15:CY000017 RECD: 01/22/15-1601 STATUS: SOUT REQ #: redacted
COLL: 01/22/15-1021 SUBM DR: Panossian,David H

ENTERED: 01/22/15-1601 SP TYPE: CYTOLOGY OTHR DR: Yost,Jason
ORDERED: 88305, 88312, 88112

ADEQUACY OF SPECIMEN

Satisfactory for evaluation.

GENERAL CATEGORIZATION

Negative for malignant cells.

GROSS DESCRIPTION

Specimen Label: Patient's name and "Bronchial Wash Right Upper Lobe"
Fluid volume (mL): 37 mL
Description of specimen: red mucoid fluid

PREPARATION STAIN # OF SLIDES
Thin Prep PAP 1
Smears PAP 2
Cell block H&E 1
GMS 1


MICROSCOPIC DIAGNOSIS

Right upper lobe, bronchial wash:
Negative for malignant cells.
Benign bronchial respiratory epithelial cells, lymphocytes, and
bronchial alveolar macrophages.
Negative for fungal organisms with GMS stain.

MAM:eb // D&T: 01/27/15-TU //1

SOURCE OF SPECIMEN

BRONCHIAL WASH RIGHT UPPER LOBE
--------------------------------------------------------------------------------------------

Signed Electronically Signed MONTES,MIGUEL A. MD 01/27/15 1408

--------------------------------------------------------------------------------------------


** END OF REPORT **
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#48

*Update* My Pulmonolgist Is confident that I do not have an active TB case only a Latent one so I have been started on Isoniazid 300mg 1x daily for 9 months to eliminate the TB bacteria from my body. Other drugs may be added to that when the other test results get back if it is then determined from them that I am actually an active case but as of this time they have still not come back. I will also be having a PET Scan scheduled soon to get a finer look at the lesion/cavitation/tumor in my lung.

I also get to be made into a pincushion again so the vampires can get their pint out of me for yet more tests. *sighs*

Have I mentioned Hospitals and Doctors offices terrify me? I mean.. literal gut wrenching sustained terror every time I have to walk into one for whatever reason. No amount of counseling has ever helped there either. *shudders*

Other information... Sinus thingy is a polyp, no big deal, to be dealt with at an as yet unscheduled later date.

My supplements order should arrive by Wednesday at the latest, probably closer to Tuesday most likely. I'll be pouring a lot of needed vitamins and minerals into my body that my previous diet was sadly lacking and *dances happily* I'll have my BO and Prog-Cream to start using as well. So with any luck... my currently still flat boobies... will start showing some form and shape over the next few months *dances more*.

I am scared about the possibility that this thing in my lungs may yet still be malignant... but I am much more encouraged now that some of the more horrible possibilities have been, if not eliminated, at least reduced to a level that I can wrap my head around emotionally.

*hugs*

~Elain
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#49

http://youtu.be/_dhlp8jSiiU
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#50

(31-01-2015, 04:12 AM)ElainMoria Wrote:  *Update* My Pulmonolgist Is confident that I do not have an active TB case only a Latent one so I have been started on Isoniazid 300mg 1x daily for 9 months to eliminate the TB bacteria from my body. Other drugs may be added to that when the other test results get back if it is then determined from them that I am actually an active case but as of this time they have still not come back. I will also be having a PET Scan scheduled soon to get a finer look at the lesion/cavitation/tumor in my lung.

I also get to be made into a pincushion again so the vampires can get their pint out of me for yet more tests. *sighs*

Have I mentioned Hospitals and Doctors offices terrify me? I mean.. literal gut wrenching sustained terror every time I have to walk into one for whatever reason. No amount of counseling has ever helped there either. *shudders*

Other information... Sinus thingy is a polyp, no big deal, to be dealt with at an as yet unscheduled later date.

My supplements order should arrive by Wednesday at the latest, probably closer to Tuesday most likely. I'll be pouring a lot of needed vitamins and minerals into my body that my previous diet was sadly lacking and *dances happily* I'll have my BO and Prog-Cream to start using as well. So with any luck... my currently still flat boobies... will start showing some form and shape over the next few months *dances more*.

I am scared about the possibility that this thing in my lungs may yet still be malignant... but I am much more encouraged now that some of the more horrible possibilities have been, if not eliminated, at least reduced to a level that I can wrap my head around emotionally.

*hugs*

~Elain

Glad to hear some good news
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