My name is Donna and I’m scared to death about what’s going on with my husband of 35 yrs. he’s 65 now, has severe copd and starting just 2 months ago began coughing up blood. He is on 24/7 home oxygen and when coughing began he couldn’t breathe. Got ambulance and he was put in ICU. They did X-ray, blood tests etc and he ended up there for 4 days mostly getting IV antibiotics, platelets etc. he’s on plavix and aspirin for heart stents so blood doesn’t clot fast. He developed lower leg edema as well. He didn’t have any of above symptoms until he was put on spironolactone for edema. He takes a lot of heart meds with no problems but that spirolatone gave him EVERY side effect basically lusted from coughing blood to sore breasts. He stopped that drug April 13, but a few side effects remain. All docs from pulmo to ER to cardio say drug couldn’t have started any of it. Maybe not. Who knows, husband knows his body well.
Forward to 3 weeks later and he had some blood every couple days but nothing much. Then on June 13, another blowout but this time his days were 55!’ He couldn’t breathe and they had to vent him. He came through that, but while in hospital that time, the pulmo on call who is part of group our pulmo doc works in saw husband. He was curt and not good with people. Frightened people. He forced husband into signing a ” Polst” form for DNR. Then sent home. Husband knows I research everything a lot ( 20 years surgical vet nurse) plus in 2007 pulmo a couldn’t find what was wrong and it was ME searching for hours and days to suggest maybe an empyema? Yes, it was that and surgery was done.
Now, treatment for MAC we are reading as hubby has nodules on CT scan plus bacterium non-TB we’ve been told.
Had primary do a TB skin test today to be certain!
The pulmo who discharged hubby this last time said hubby wouldn’t do well on MAC treatment, not a good candidate. Can’t get direct answers why not??
Last 3 nights he’s had coughing blood but I’ve gotten to whete I give him his Xanax, keep checking BP and he takes nitro pill if pain and I crank up his O2 until it all calms down. He’s never been afraid of anything in life, he’s had freaky things happen like arm amputation at only 26, first heart attack at 45, and has 13 stents in arteries.
I must find way to help him. I took that darned ” Polst” form back to hospital and all his doctors offices with HUGE voided written and signed on it and NOBODY can find in his records, not even hospital that took form from him!
I think MAC is doing this but what to do when doctor says treatment wouldn’t be good on him??
I’m sorry so long but I’m so scared. My hubby scared. Pulmo group has 9 docs. Our regular one has no openings until aug3, and primary is testing for anemia due to nightly blood loss.
Please help me with ideas? Grateful to find this site! Maybe all my prayers are getting through.
P.S. He is my world! I cannot lose