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Posted 6/8/2011 6:34 PM (GMT 0)
Willie and I will be leaving soon for his appointment with the lung guy, to get his results from the bronchoscopy.

I spoke to the nurse for his med. onc the other day and she seemed very hesitant, said they couldn't see Willie again until after we speak to the lung guy.

This is probably the second time, during this whole ordeal, when I've been worried, very worried.

I was fine til the morning, not so much now.

Please cross all your fingers and toes that this was an aspiration pneumonitis and not more cancer in his lung.

Thankyou.

Mary
Posted 6/8/2011 6:37 PM (GMT 0)
will be waiting patiently for some good news,hoping for the best
Posted 6/8/2011 6:49 PM (GMT 0)
Hope all turns out well. Fingers and toes (esp. my toes, which tend to grow that way) are crossed for you.
Posted 6/8/2011 6:52 PM (GMT 0)
Everything crossed for him, waiting to hear good news
Posted 6/8/2011 7:09 PM (GMT 0)
Expecting better news :-)
Posted 6/8/2011 7:38 PM (GMT 0)
Mary,
\ <---- Look at my name. I'd be honored to carry your worry burden for a while. Relax and take a nap. My treat.

Jeff
Posted 6/8/2011 10:01 PM (GMT 0)
Mary, I can identify totally, although my situation right now is better than Willie's. As Worried Guy says, look at my name.

So, along with Worried Guy, I'd be honored to fret, fuss, and be frantic with fear on your behalf for awhile.

And, along with the others, I'll be watching for news.

Sheldon AKA Sleepless
Posted 6/8/2011 10:16 PM (GMT 0)
Dear Mary,

Knowing only too well what it is like to be in such a situation, please know that I am crossing fingers and toes for you and sending lots of good energy your way.
Posted 6/8/2011 10:32 PM (GMT 0)
Anxiously awaiting your report

Mel

Posted 6/8/2011 11:53 PM (GMT 0)
Holding my breath and sending positive thoughts your way.

Cajun Jeff
Posted 6/8/2011 11:57 PM (GMT 0)
Of course you're worried Mary. We all get a bit toey when we are awaiting any sort of a result. When we are in this mood we have our radar on for any litlle inflection or nuance in what somebody says looking for something being hidden. I have everything crossed for you both. Good luck and good news.
Bill
Posted 6/10/2011 1:45 PM (GMT 0)
Ok, Mary, I see ya posted recently, so how did it go with his visit?
Posted 6/12/2011 1:57 AM (GMT 0)
Thankyou everyone.

Willie has a bacterial infection in his lung.

It's an Opportunistic Infection, related to TB but not TB.

The lung guy was too low key for my liking, talked about how bacteria are everywhere, esp. in showerheads and on skin.

He didn't say a word about treating it, acted like it should be water off a ducks' back.

On Friday, my GP stated that he thought that might be it but he "doesn't treat that, leave it up to the specialists"!!!!!

Soooo, I've been googling and reading about MAI.

Seems that a lot of AIDS patients get it but get treated.

Cancer patients also get it, may have been in Willies' gut and responsible for his terrible illness and weight loss last December/January but was missed.

I'm going to call the lung guy on Monday, for a 'clarification' and see just why they're not treating my beautiful man.

I just know that if I were to show up at the hospital with a bacterial infection in my lung, they'd be treating me!!

My emotions are all over the map right now, rightly or wrongly so I won't post anymore til I have more information.

Stay well everyone.

Mary
Posted 6/12/2011 1:57 AM (GMT 0)
deleted duplicate post

Post Edited (Willie B) : 6/11/2011 8:00:58 PM (GMT-6)

Posted 6/12/2011 1:57 AM (GMT 0)
deleted duplicate post

Post Edited (Willie B) : 6/11/2011 8:03:25 PM (GMT-6)

Posted 6/12/2011 1:57 AM (GMT 0)
deleted several duplicate posts.

Post Edited (Willie B) : 6/11/2011 8:08:00 PM (GMT-6)

Posted 6/12/2011 1:57 AM (GMT 0)
deleted duplicate post.

Think my computer must be as put out as I am....... sad

Post Edited (Willie B) : 6/11/2011 8:05:58 PM (GMT-6)

Posted 6/12/2011 3:02 AM (GMT 0)
Mary:

This is very upsetting. Aren't they giving him antibiotics?

This is great that they know what it is and it isn't the PC, but I thought bacterial lung infections are always treated.

If I may ask, does he have symptoms like a high fever and severe coughing? I assume he has fatigue just from his overall situation. (Maybe if he doesn't have symptoms then they don't treat it -- just grasping at straws here!!).

Willie has made a nice comeback and they should not be dropping the ball here.

Is it possible to call the doctor on Sunday (we have a doctor's exchange that gets a message to the doctor). This sounds at the very least like a communications problem!

Please keep us informed.

Mel

 

Posted 6/13/2011 11:38 PM (GMT 0)
Mary here,

I am really upset with how things are not transpiring.

Lung guy passed Willie back to med. onc. who has now passed Willie onto yet another doctor who cannot see him for a month!!!! (Infectious Disease guy)

No, no, no.

I phoned my GP and told him to order some antibiotics or risk me holding up a drugstore for antibiotics tonight!

After a convoluted and long-ish phone call, he's ordered one of the three drugs needed to treat this disease.

He's going to call and fax the Infectious Disease guy tomorrow and see about the efficacy and need for the other two drugs.

Will know more tomorrow but at least Willie has *one* antibiotic for lung problems to cover him for 24 hours.

As I told my GP, it cannot hurt him and may help delay this process.

Poor Willie is being handed around like a cheese platter and I'm furious.

Yes Mel, I believe he should have been on antibiotics for the last few weeks, if not since his bronch.

Stay well eveyone, not every doc is a good doc.
Posted 6/14/2011 12:43 AM (GMT 0)
Mary,

Stay strong for Willie. You are doing the right tbing.

Do you pack heat too ?

Some men are so blessed to have a wonderful woman beside them. I know I am.

Goodlife
Posted 6/14/2011 1:01 AM (GMT 0)
Sometimes the hesitancy by some docs in prescribing drugs while another specialist is in the picture can be understandable. Different medicos giving different things can cause problems, especially if communication breaks down. Quite some years ago my dear old dad went into hospital to have some cataracts removed. After discharge he developed a lung infection (probably from being under the anesthetic), so was prescribed antibiotics and some other drugs to dry up the mucus. Over the next month he slowly became quite slow and confused (he was always pretty much on the ball) and no medico picked up on it. While visiting my sister for a few days he forgot to take that medication with him. Low and behold the problem disappeared in two days and he was back to his old self. Needless to say he dumped all his medication in the bin. Perhaps your GP was being a little too cautious in this case though ------ it would not have hurt to ring the specialist and check that it was OK to give him the antibiotics.
Bill
Posted 6/14/2011 2:45 AM (GMT 0)
Mary, this is all very distressing. I can't imagine what it must be like for you.

Willie is a lucky guy to have you going to bat for him.

Thanks for letting us know what's going on, although it is all very upsetting.

Sheldon AKA Sleepless
Posted 6/14/2011 3:31 PM (GMT 0)
Willie is so lucky to have someone like you Mary. Stay strong, cause I think you are doing great for your man!
Posted 6/15/2011 8:20 PM (GMT 0)
Update: I was quite impressed after a conversation with Lung guy today.

He called in response to my request for 'clarification' and it turns out that Mel deserves a gold star. ;)

Lung guy says we all have bacteria surrounding us, that Willies' problem was aspiration way back in Dec/Jan and that the cavity came from that episode. The MAI set up shop sometime later but is not making Willie sick at present.
Even if he was sick, they'd be very careful about giving him the *required* antibiotics for MAI, as they can shut down the liver and kidneys and must be taken for at least a year. Lung guy has treated about a dozen people (during 14 yrs of practice) and roughly half have eradicated the MAI and it comes back about 50% of the time.

So, after all that risk, only 25% of people with MAI ever get over it completely and it's not a threat to Willie at the moment.

The lung cavities may increase, time will tell but again, he's not showing any signs/symptoms of being ill from them.

Apparently, his Med Onc is wanting another opinion about the use of the antibiotics before continuing chemo. and that's not uncommon, says Lung guy. IMO it's unnecessary but I can not schedule/order the chemo myself, can I. lol

I discussed with Lung guy, that Willie has had ALL of his chemo while also having MAI, nothing but good came of it.....he said that's a valid point and to point it out to the Med. Onc. IF Willie is comfortable going without the antibiotics.

***BTW, the use of the antibiotics is NOT based on scientific evidence but on consensus of a number of North American doctors. Interesting that Lung guy pointed that out to me......as most docs are not always that forthcoming with that kind of information, in my recent experience.***

Willie was just impressed that Lung guy took the time to call in the middle of the morning, to explain all of this in such detail. Of course, he's pleased that they're thinking of his future liver function also. As Willie says, it's great that they're thinking of his future, period!

Willie is walking nearly 2 miles a day now, mostly to/around the local mall. Yesterday we took the dogs to the park and he took them for a long walk while I read my book and enjoyed the beautiful weather.

Stay well everyone, it's the only way to go.

Mary
Posted 6/15/2011 9:49 PM (GMT 0)
 

Mary

I'm very impressed with your strength in dealing with all that you have dealt with.

Stay strong Mary and tell Willie that a lot of people are pulling for him.

Deidre

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