So some of you know my story.  It short i got the swine flu at 8 months pregnant and it devveloped into pnemonia, and accute respitory distress symdrome ARDS  and i was in a coma for over a month.  I should not have survived.  But, that to many peoples prayers Myself and the baby pulled through.

But, today I got some disterbing news when I went my new puminologist.

So here is my update-

Do not know where to start....1st off I good stuff guess- I love my new doc, and he thinks some of my issues could be due to bad reflux which is fixable, and he thinks pulinary rehab could help too,

Now, ugh stuff- I have tons of tests scheduled-another Pulmonary function test, swallow study, an extensive CT scan, and he wants the cardiologist to do a cardiac catheter (minor heart surgery). And if my reflux does not get better he wants to do a brochiotomy (tube down my throat). He saw narrowing of my trachea which he thinks could be a hernia requiring surgery to fix. And lastly and most disturbing was he talked about my long term prognosis which is something my old doc would not talk about. He said with how my lungs are now having restrictive airway disease. He told me what I already knew-that I have permanent scaring/damage and it will not get better regardless of any therapy.

And he wants to send me to Boston in a few months to have a relationship with the docs there as a consult basis because I will end up needing them as my lung function deteriorates over the next 20 year. He was very honest in saying that my lungs were already at a 75-80 yr old functioning level. So, do the math-20 years =95-100 yrs. So here is the thing I am struggling with. With those lung ages he says he can almost guarantee I will need a lung transplant in 20 yrs which is why he wants Boston involved. He actually said they will probably put my name on the transplant list now because it can take 20 years. So, that was and still is hard to come to terms with.

So, a lot to take in. Overall it was good cus I finally have a proactive pulminologist taking me and my issues serious. But, I wish their was some magic pill to take this all away. Anyway, it will all be okay, I just got to process it all!

  Thank for taking the time to read this.

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Aug. 3, 2010 at 5:09 AM

Prayers and hugs that everything works out ok you have a doctor to help you now so things should go smoother.

Hows the little one doing?

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Aug. 3, 2010 at 11:14 AM

hope all goes well prayers and hugs for you and your familyhugs

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Sep. 6, 2010 at 3:47 PM

Best wishes and hang tough.

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