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Posts (7)

Jul 17, 2016 · MAC - Get a second opinion! in MAC & Bronchiectasis

I’m so confused. I find my posts and answers but can’t find how to respond to answers.
Tonight’s big problem, it has been 30 days home from hospital trip #2.
Everyday George is coughing up way over 4 cups of blood, like 50 ounces. We made system of nitro, Xanax, BP reading, sat checks, crank air up. Husband afraid if he goes to hospital he won’t go home and it’s because on call pulmo scared him and told him yes he has mac but body won’t handle treatment.
How much blood can he lose? He’s losing that much every single day now for 29 days. He says ” hospital tomorrow” then changes mind out of fear. I’m wrecked. He’s scared I’m frantic! I don’t know how to respond to your answer posts. I’m doing something wrong. Please help?

Jul 17, 2016 · MAC - Get a second opinion! in MAC & Bronchiectasis

I wrote long reply not sure where it went since site confuses me right now. He’s bleeding nearly 6 or more CUPS daily blood with clots and foam and totally fresh blood. He’s scared to go to hospital cuz on call doc treated him so badly.

Jul 17, 2016 · MAC - Get a second opinion! in MAC & Bronchiectasis

@katemn
I’m having hard time learning how to do this. Hubby coughing approx 6 cups of blood every day. BP spikes and we use nitro, Xanax, crank O2 up to 8 liters. It’s clots and foamy blood. On call doc last hospital stay scared George by saying yes he has MAC but body can’t handle treatment but he forced a ” Polst” form to release him to go home. We voided Polst the next day!!
How much blood can he lose? These amounts are daily for 29 days now at home. Once it calms down in few hours he promised hospital daily but too scared. I’m a wreck. He must need platelets and IV fluids right? Antibiotics? Help!

Jul 12, 2016 · MAC - Get a second opinion! in MAC & Bronchiectasis

Thank you so very, very much. I’m not tech savvy so I need help sometimes.
I did bookmark which brought me here. I’ve never used bookmark feature before now.
Having really bad days with hubby’s blood. He has ” spells” of coughing it up and we have routine to control it putting hospital off if able.
Today bad. George got up at 3 to use bathroom and started the cough/blood. Only stopped an hour ago so cough/bleed for 7 he’s!!
We have pulmo appt with his regular guy but aug 3!
I need to know why on call pulmo at hospital said the MAC treAtment wasn’t a good choice for George!
He has several nodules, they did TB test, negative. He has the bacterium that MAC is. How I distant should we be to get treatment for MAC started??
I’m freaking out!
Please advice??

Jul 7, 2016 · MAC - Get a second opinion! in MAC & Bronchiectasis

Thank you Kathetine:
I have questions to ask but firstly, I’m using my cell and I opened my safari browser and ” somehow” found you!
I don’t know how to save this place and pages to find again to keep up.
I’m not very smart on smart phone.
Long night for hubby. Btw, his name is George. I went to bed at midnight once I knew he was ok, numbers were good and he was relaxed.
By 1 am, he started coughing blood and didn’t wake me up. He kept track of the blood, the BP, his O2 sat levels etc until 6 AM this morning when he finally came to bed! He had to use nitro tabs last night too. I told him he PROMISED to get me up if any events started but he said I was so exhausted lately he wanted me to sleep.
I did but I’m putting old rules back in place starting tonight. We go to bed together! That way I can watch him.
Anyway, I do NOT want to lose this place or thread. Any ideas?
Thanks for answers. First time in a long time I don’t feel so aloe.

Jul 6, 2016 · MAC - Get a second opinion! in MAC & Bronchiectasis

Thank you Coleen.
We are in California. I will check links. I’m truly shaking through all of this. I have panic disorder so it’s tough.
I’m so grateful I found this place to talk.

Jul 6, 2016 · MAC - Get a second opinion! in MAC & Bronchiectasis

Hello
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.
Donna
P.S. He is my world! I cannot lose