Discussions By Condition: Repiratory conditions

DIP Rare Pneumonia and 7 blood clots hit lungs

Posted In: Repiratory conditions 0 Replies
  • Posted By: nkr3686
  • May 27, 2013
  • 07:25 PM

I am new to the forum and maybe someone can support/answer questions for me? (might already know)?
My husband was diagnossed almost 4 yrs ago with 4 rare disorders...(2 which cause his body to create blood clots in his major organs) they do not come up thru his legs like normal they just form in his organs...7 hit his lungs already and 1 hit his brain-with a small bleed as well.
My husband also has (2 rare pneumonias-one which is DIP-the other one I can never remember the name of it). all of these combined have cause him to have a lot of issues with his body etc. He has been on and off of oxygen but off oxygen the last yr and half. His adrenal glands no longer work (blead out) Kidneys and liver have shut down but are now working again..(had to have had some effect tho...
He has his INR level checked every week and adjusted every week...Not like a normal person on Warfin...completely different.
He no longer lets me go to the doctors with him and is in more pain then I have seen in a very long time.
The reason I am writting is because I found out he is smoking again after 3 yrs. and his cough is so bad...with blood clots that hit his lungs those part of the lungs die off I know that...and his oxygen exchange is bad and with the DIP...what will happen to him?

Is he just cutting his life shorter because he is done? My husband is only 49yrs old and has one heck of a battle and I am just trying to figure out what we are up against since he is not talking any longer.

If someone could help me that would greatly be appreciated. Still love him and worry.

Thank you

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