MAC - Get a second opinion!

Hello @donnavm,
Coughing up blood is a symptom of something -- may not be serious or can be very serious. I was thought to have pneumonia several times with asthma thrown in during the 2-3 years period prior to the correct NTM (MAC) diagnosis. My symptoms were finally pursued when I began coughing up blood which over a week got worse. With a diagnosis of MAC and coughing up blood, it's odd someone didn't start your husband on therapy. He obviously is ill, and having symptoms. Your husband has an appointment with a pulmonologist on Aug 3rd -- can you call the doc today and let him know what's going on? He should make the decision about treatment and not the on-call doc. Keep us posted!

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?

@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!

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.

Hi @donnavm,
I can imagine how stressed you must be. The website can be confusing when you're stressed. I'm so glad that your replies went through on Connect. Your other messages were posted successfully here https://connect.mayoclinic.org/discussion/get-a-second-opinion/?pg=1#post-228703

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I’m sorry to hear about your husband. I’m sure this has taken a toll on you both, especially when fear can control us more than we want it to. Sometimes what can add to the fear is not knowing. So it may be beneficial to go back to the doctor, just so you can at the least get some relief of having the situation readdressed. For that much blood loss I think it’s worth another visit. I’m also tagging @suzieapples, @ehliny, @melissa23, and @suttonmac2009 who have all written in other MAC discussions about coughing up blood.

You need to get some legal paperwork done to give yourself power of<br>attorney over health decisions and get him admitted for help asap.....he is<br>not making wise choices to lose that much blood. Best wishes....do what you<br>can and know that we all make choices....sadly they affect others too.<br>Hugs...<br>

Donna, tell him to calm down. I feel for both of you. He needs to see different Dr. or go to another hospital. Get a second opinion. I know its scary when Dr. tells him he has MAC but you have to educate yourself about this. Read all the information that everyone post early on this forum. I remember the first time I was diagnosed MAC I was so scared and didn't believed the Dr. I went out of town to find a pulmonary Dr. to get a second opinion. I'm on my five weeks taking the meds now.  I'm doing alright with the help of God and all the support of everyone on this Mayo forum. I will pray for both of you and please try to make him look at the bright side of this. He needs medical attention and don't let MAC take over his life.  God Bless you both!

Donna, I just got back into town. Is there a 2nd hospital you can go to?? It is obvious the one you went to is not going to help you.

BUT YOU MUST GET YOURSELF TOGETHER!!

I have been down this road myself as my husband's advocate for MANY years with MANY health issues. I can tell you .. NO doctor is going to take a hysterical woman seriously! Now I don't mean to be harsh .. BUT having been there .. done that .. if YOU don't advocate EFFECTIVELY for your husband .. NO ONE ELSE WILL!! GET YOURSELF TOGETHER .. however you need to. If faith helps you .. get to a church and pray .. call your Pastor and ask for help with this issue. If you have a good friend or family member who can be a strong advocate .. get someone to help you with this. BUT daily 6-7 cups of blood loss for 29 days .. if a 2nd hospital will not admit your husband .. AND make sure they KNOW THIS INFORMATION .. it would be malpractice for them NOT to admit your husband for at least minimal treatment of IV fluids etc. He NEEDS to be in a hospital .. that kind of blood loss cannot be sustained.

I am so sorry Donna .. keep us posted .. this is a very tough journey you are on. Sending you a hug. Katherine

Donna, we have not heard from you in a while. How are you? How is your husband? I have been thinking about you and sending you Lots of Positive Energy .. and a Big Hug! Katherine

How long were you on the 3 meds?