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digmeme
@digmeme

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Joined: Mar 26, 2016

MAC - Get a second opinion!

Posted by @digmeme, Jun 29, 2016

I was diagnosed by a pulmonologist in January of this year with MAC. I have written before about the 3 meds most of you are on that have this……I suffered and suffered with ALL of them….nausea, chills, leg cramps, night sweats and sometimes in bed 20 hours with 5 layers of clothing and 7 blankets over me!
About a month ago I went to see an Infectious Disease specialist and he took me off ALL meds, did a CAT scan…..AND today I got the results! Only one nodule in my lung and will not need to be checked for 12-18 months and I will not have to take ANY meds…..NONE! Folks, this is the power of lots of prayers and Him guiding me to a great doctor.!!!!! Thank you Lord! I also use “Thieves” essential oil from bulk apothecary.com in a $20 Walmart diffuser every night! I have felt better this past month than I have in a year! DO NOT SUFFER……get a second opinion!

REPLY

YAY and DOUBLE YAY!!!  SO delighted for you.  Finding the right doctor is half the battle.  I suffered some of the same side effects of the medicine you experienced.  I tried twice.  Told that doctor I could not tolerate them.  Happy for those who can, but when you read of many who have taken them for 12 to 18 months, and still not a negative culture after all that time….not for me.  Again, Congratulations and keep up the good health.Jan/GA

How long did you take the meds for Mac infection before nodules decreased?

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

@donnavm I can hear the deep concern in your words. We’re here and we’re listening. I’m also tagging @katemn and @Paula_MAC2007 here so that they are aware of your husband’s story. They each have a lot of experience navigating the health care system and MAC.

You can also read many other stories or post a message here: https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

If you would like to get a second opinion from Mayo Clinic experts, please call the number at the location most convenient for you. See this webpage: http://mayocl.in/1mtmR63

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.

Donna, my heart so goes out to you. I have been my husband advocate for 16 years so I SO know your journey .. it is SO scary .. lonely and frightening. I have been there walking right with you .. I understand. I just wish I could take you in my arms and hold you just for a moment and take away some of those cares. I know just how tough it is. You are a soldier in this battle .. but a battle it is .. and you CAN’T give up .. only you can do it .. no one else. I know you have little strength left .. but he has even less. Just put one foot in front of the other and hold on to each other .. AND follow what Colleen has told you to do. But most important .. take a moment to find some serenity in this craziness .. remember you “can’t pour from an empty cup” .. if you don’t take care of YOURSELF .. you will have Zero to take care of him. As my husband and I say .. “Our kids love us .. our grandkids love us .. but at 3 in the morning .. it just you and me Babe!”. Just love each other .. none of us know what tomorrow will bring (my husband is Stage 4 cancer) .. so each of us must savor each moment .. each day that we DO have .. Live in the moment .. NOT tomorrow or the next day! Sending you a Big Hug! Katherine

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.

Liked by jms7

Donna, Here are a couple of ways to find your way back to this discussion on your smart phone.

Option 1: Bookmark this page https://connect.mayoclinic.org/discussion/get-a-second-opinion/
Option 2: Save the next email notice you get in your inbox, then you can click the VIEW & REPLY any time to get you here.
Option 3: Follow this path from the Connect home page: connect.mayoclinic.org > Click Join a Discussion Group > Click Lung Health > Click “MAC – Get a second opinion!”

I hope one of these 3 options works for you. Please let me know which is easiest for you.

@donnavm

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.

Jump to this post

Donna, you are NOT alone!! We are ALL on this Forum here with you on your tough journey. Trust me .. it is true. Do what Colleen has said below .. she is one smart lady. If all else fails just google “MAI/MAC Mayo Clinic” .. it will lead you to our Forum. It is as simple as that .. that I how I found Mayo Clinic in 2011.

I agree about setting up rules .. too frequently my husband “doesn’t want to worry me”! Just today he showed me TWO infected toes .. and he has DIABETES!! I could have hit him! How many times have I talked to him about Diabetes and amputations!! These men! You just keep after George! WE are their “first line of defense”! Of course you DO need your rest .. THAT is part of “filling your cup” .. but you need to keep ahead of the curve with his health so keep to the rules! Sending you a hug! Katherine

@colleenyoung

Donna, Here are a couple of ways to find your way back to this discussion on your smart phone.

Option 1: Bookmark this page https://connect.mayoclinic.org/discussion/get-a-second-opinion/
Option 2: Save the next email notice you get in your inbox, then you can click the VIEW & REPLY any time to get you here.
Option 3: Follow this path from the Connect home page: connect.mayoclinic.org > Click Join a Discussion Group > Click Lung Health > Click “MAC – Get a second opinion!”

I hope one of these 3 options works for you. Please let me know which is easiest for you.

Jump to this post

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??

@colleenyoung

Donna, Here are a couple of ways to find your way back to this discussion on your smart phone.

Option 1: Bookmark this page https://connect.mayoclinic.org/discussion/get-a-second-opinion/
Option 2: Save the next email notice you get in your inbox, then you can click the VIEW & REPLY any time to get you here.
Option 3: Follow this path from the Connect home page: connect.mayoclinic.org > Click Join a Discussion Group > Click Lung Health > Click “MAC – Get a second opinion!”

I hope one of these 3 options works for you. Please let me know which is easiest for you.

Jump to this post

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!

@colleenyoung

Donna, Here are a couple of ways to find your way back to this discussion on your smart phone.

Option 1: Bookmark this page https://connect.mayoclinic.org/discussion/get-a-second-opinion/
Option 2: Save the next email notice you get in your inbox, then you can click the VIEW & REPLY any time to get you here.
Option 3: Follow this path from the Connect home page: connect.mayoclinic.org > Click Join a Discussion Group > Click Lung Health > Click “MAC – Get a second opinion!”

I hope one of these 3 options works for you. Please let me know which is easiest for you.

Jump to this post

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.

@donnavm

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?

Jump to this post

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

To reply to a message, simply
1. Click the “REPLY” button.
2. Type your message.
3. Click POST REPLY.

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.

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