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Old 01-03-2012, 08:36 PM   #1
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Booped out

iS THERE ANYONE OUT THERE WHO HAS BEEN DIAGNOSED WITH BOOP? I AM GOING THROUGH MY THIRD EPISODE OF IT AND I FEEL HORRIBLE. MOST DOCTORS DO NOT KNOW WHAT IT IS, I SPENT A DAY IN THE ER WITH A NURSE ( WHO IN HER DEFENSE WAS TRYING VERY HARD) KEPT PATTING MY BACK TO GET ME TO COUGH SOMETHING OUT OF MY LUNGS THAT WAS NOT THERE. IE... INFLAMMATION!!!!! THE STEROIDS ARE STARTING THEIR SIDE EFFECTS AND I AM ALONE IN A HOUSE WITH A VERY NEEDY DOG. I AM SO SICK OF THIS DISEASE I HAVE HAD IT FOR 10 YEARS NOW. IF YOUR OUT THERE I SURE COULLD USE A FRIEND.
VIRGINIA GIRL 1

 
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oxyphile (01-05-2012)
Old 01-03-2012, 10:58 PM   #2
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Re: Booped out

Hiya. Im no expert on this, but have they give you immunosuppressants? They are often used when steriods have a negative effect and more so when their is no direct link to whats causing it?
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Old 01-04-2012, 09:58 AM   #3
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Re: Booped out

The first time it took the 38 days and the american CDC to figure out what it was and after a lung biopsy they said steroids even with the side effects would keep me alive so dance with the devil to live. This time I am in another state and doctors are pulling up the internet looking up BOOP and finding mostly "Betty Boop" they are asking me what was given prior. This is my third go round with it, first time severe almost deadly second time mild and this one is steadily building. I just called Doctor I live 45 minutes from town can not hardly walk let alone drive so hoping for home health to come here. I will discuss immunosuppresants if I get a doctor on the phone Thank for the info

Last edited by virginia girl 1; 01-04-2012 at 09:59 AM.

 
Old 01-04-2012, 10:11 AM   #4
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Re: Booped out

Hey NP

Fingers crossed he can help you. This condition can be cured in over 65% of people. 35% of people get reoccurances, but indeed its not a common condition, but its very simular to many.

Indeed, i think you need to push for them. In the UK when steriods have negative effects then these are what they use to replace them..

Hope all goes well, let us know the outcome VG

Take care
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Old 01-05-2012, 09:49 AM   #5
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Re: Booped out

Virginia, you've got a friend here, hon! I, too, have interstitial lung disease and it took too long to nail it down - meaning I was too far along to have a biopsy (doc thinks I wouldn't have survived it). - because I was a smoker, unfortunately, the first diagnoses by other doctors was COPD until my new doc did a pulmonary function test, and lo and behold, the result was restrictive rather than obstructive...and my test results had also done a nosedive from the year before, so...we changed gears and started treating me for pulmonary fibrosis. They figure the flavor I have is NSIP - though my doc at first thought it was BOOP, but it's not acting right - so he's finally conceding that it must be NSIP, which unfortunately for me, has a very low survival percentage (70% 5 years, 30-40% after 5 years (5 years are up in 2013). BTW, I can't say BOOP without thinking of Betty Boop <G>

I know where you're coming from...mine's steady degenerating - getting worse all the time without remission. BTW, are they absolutely sure it's BOOP now? I've heard that pulmonary fibrosis can sometimes change its stripes - i.e., look like one thing but be something else as the disease progresses. Might not be a bad idea to get a 2nd opinion from a teaching hospital in your area. I know all about fatigue, weakness myself. After my 1st bout of cellulitis (about the 55th hospitalization since 2004), I was so weak I couldn't hardly move. Another couple bouts, and I conceded to going to a rehab, and I'm getting SOME of my energy back, but not much. My daughter is a l ifesaver (in more than one way - she did CPR when I stopped breathing back in March of 2011 from a flare that was totally 'out of the blue' - felt like going to church. Daughter drove there pulled into the parking lot and was getting my ramp out of the van when I said "call 911 I can't breathe' - and stopped breathing (my pastor's wife calls me Lazarus now) - she did CPR until the paramedics got there) and cooks for me and cleans the house - I also have a homemaker. You might want to look into what the state has to help you if you get state assistance? Do you get Medicare??

Hang in there...it's not easy, but you'll make it! I've had 60 hopsitalizations, two intubations and 3-4 ICU stays, so...if *I* can do it, you can too

 
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