In shock after MAC diagnosis

Posted by sylvermoon8 @sylvermoon8, Sat, Aug 17 1:12pm

I was being followed for a lung problem for 2 years and finally was to have my last CT in June. But it showed pneumonia. I had had a bad cough a month before, they thought I had pneumonia but chest X-rays indicated no, so I wasn’t treated. So after the CT I had 7 days of an antibiotic. 6 weeks later my next CT showed it had gotten a bit worse and now they mentioned something called MAI. That was last Monday. Tuesday I am getting a bronchoscope and biopsy. I am scared. Especially now that I have read so much about this. I don’t have symptoms except maybe if I talk fast I feel like I had to stop and breath. I don’t know what I am in for. Gosh I am scared just about getting the bronchoscope. My doctor said I could have gotten this from gardening, I did a lot…have been doing it for years. This year we had a new mulch supplier…… I could use a pep talk, if anyone has that for this!!

Hi ,I am Karen Harrell and I went from doctor to doctor trying to find out why I could not breath and they all asked if I was a smoker ,which is no ,no drinking ,no smoking meth nothing .well at 44 I need a lung replacement of both,and if not I have 15months to live. Because of BOOP AND COP. I had this for 2 years and it scared my lungs to where they are hard. This has hit me so hard I could just cuss,but I'm not giving up. I want you to BELIEVE god has something for us. I don't feel my fight is over,I want to live and scared to death.

Liked by Brenda R.

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@kp5450121 Hi Karen, I read your post about BOOP & COP. I had to look that up as I had never heard of either. I can understand you being scared and very upset with this diagnosis. You seem to have a strong makeup and be full of fight… I hope your strength and trust in God can pull you through and give comfort. Are you on a list for a transplant? Do they give you an idea of a timeframe for that? I am wishing you the very best. Please let us all know how you are progressing and please know that we are all here to support you. Please try to stay strong and positive. Kate

Liked by vetnyregr

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Alleycatkate
I got 15 months til heart failure or new set of lungs and no. THE GREAT MAYO SENT A LETTER IN MAIL DENIED. I gonna fight to get my lung transplant even if I go somewhere else. I was hit real fast with this and did not process it but its so darn hard to breath and I am on very high oxygen,I miss alot

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@kp5450121

Alleycatkate
I got 15 months til heart failure or new set of lungs and no. THE GREAT MAYO SENT A LETTER IN MAIL DENIED. I gonna fight to get my lung transplant even if I go somewhere else. I was hit real fast with this and did not process it but its so darn hard to breath and I am on very high oxygen,I miss alot

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🙏🏻💕

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@kp5450121

Alleycatkate
I got 15 months til heart failure or new set of lungs and no. THE GREAT MAYO SENT A LETTER IN MAIL DENIED. I gonna fight to get my lung transplant even if I go somewhere else. I was hit real fast with this and did not process it but its so darn hard to breath and I am on very high oxygen,I miss alot

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@kp5450121 Oh Boy!! Sorry to hear this. You are on a MAC/Brochicstatis site so I do not know if folks here are familiar with your issue. I am hoping someone here may be and will jump in with some thoughts. Also what other hospitals have you tried? Is your insurance limiting you or was it just MAYO? @windwalker …any thoughts?

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No ,I am going to anywhere I can cause I refuse to dye in 15 months due to heart failure cause of my lungs. I am going to re appeal to mayo. Work on trying to live ,just talking my lips turn blue.This is very hard to take in but my lungs are not better from the scarring and fibroise. Its a lot to take in and know there is not a lot you can do and at 43 your just getting to those best times of life to slow down and be thankful in life. When I was 15 ,I wished I could be grown 21 and live it up and your always going and don't take time to see the real good things. So DR. LEE said I was the first case of BOOP for mayo clinic, so only God knows what lies ahead for future

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@kp5450121

No ,I am going to anywhere I can cause I refuse to dye in 15 months due to heart failure cause of my lungs. I am going to re appeal to mayo. Work on trying to live ,just talking my lips turn blue.This is very hard to take in but my lungs are not better from the scarring and fibroise. Its a lot to take in and know there is not a lot you can do and at 43 your just getting to those best times of life to slow down and be thankful in life. When I was 15 ,I wished I could be grown 21 and live it up and your always going and don't take time to see the real good things. So DR. LEE said I was the first case of BOOP for mayo clinic, so only God knows what lies ahead for future

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@kp5450121 Have you checked National Jewish Health in Denver? It appears they treat Bronchiolitis obliterans. Looks like you should be on corticosteroids and immunosuppressive therapies….then transplant. I hope you are getting some sort of treatment now. You might try contacting them…if they will not take you maybe they can direct you somewhere else. They are tops in lung care. Also…please use the @alleycatkate when responding so I will see your response.

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Hey I am Jewish too so thank you

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I have bronchiectasis for 12 years, and lived normal life. About 1 year Cat Scan and broncoscopia tested + for MAC. 1 pulmonologist from a renowned hospital in New York does not want prescribes medication, which may cause me more harm than good. I am planning a 2nd opinion soon. Where? I think I should be treated for the disease now , and don’t wait to get very ill and begin treatment.

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Hi sylvermound, You mentioned that your doc said you might have gotten the MAI from gardening, and our mulch is one of the best places to get mold from. Also digging in the soil can release different toxins from bird droppings, that can cause hystoplasmosis that can scar the lungs and cause a fungal infection. I love to garden, but sometimes do wear the surgical type ear loop mask and try to do it in the late day or evening hours. Best wishes with your bronchoscopy.

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@baz10

Hi sylvermound, You mentioned that your doc said you might have gotten the MAI from gardening, and our mulch is one of the best places to get mold from. Also digging in the soil can release different toxins from bird droppings, that can cause hystoplasmosis that can scar the lungs and cause a fungal infection. I love to garden, but sometimes do wear the surgical type ear loop mask and try to do it in the late day or evening hours. Best wishes with your bronchoscopy.

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@baz10 My docs and the NIH say to use a specific type of mask called N-95 to protect against small particles.This is actually a disposable respirator with a filter device in the center that the air flows through, and in my opinion it is not so easy to breather through, but it is far more effective than the type you see everywhere. It needs to be fitted carefully to your face, and replaced after 6-8 hours of use or if it gets wet or torn. These are widely available on-line, and through big-box home improvement stores, and sometimes at Walgreens. I get them at the local big-box store in a pack of 10 for $20, which lasts my husband and me all season and we both wear them.

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@kp5450121

Hi ,I am Karen Harrell and I went from doctor to doctor trying to find out why I could not breath and they all asked if I was a smoker ,which is no ,no drinking ,no smoking meth nothing .well at 44 I need a lung replacement of both,and if not I have 15months to live. Because of BOOP AND COP. I had this for 2 years and it scared my lungs to where they are hard. This has hit me so hard I could just cuss,but I'm not giving up. I want you to BELIEVE god has something for us. I don't feel my fight is over,I want to live and scared to death.

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Hi @kp5450121, I believe that you may have landed in the wrong group on Connect. The discussion in this group are focused on MAC & Bronchiectasis. You will find members talking about Bronchiolitis Obliterans with Organizing Pneumonia (BOOP) and Cryptogenic Organized Pneumonia (COP) in the Lung Health group here: https://connect.mayoclinic.org/group/lung-conditions/

Here are some specific discussions about COP and BOOP that I encourage you to read and take part in:
– Bronchiolitis Obliterans with Organizing Pneumonia (BOOP) https://connect.mayoclinic.org/discussion/boop-pneumonia/
– Cryptogenic Organized Pneumonia (COP) https://connect.mayoclinic.org/discussion/cop-1/
– Obliterative Bronchiolitis (OB) v. ILD or CLD??? https://connect.mayoclinic.org/discussion/obliterative-bronchiolitis/

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I had replied to a MAC person on some information and they told me about a place in Denver. Sorry I was CURIOUS on MIC ,MAC

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@kp5450121

I had replied to a MAC person on some information and they told me about a place in Denver. Sorry I was CURIOUS on MIC ,MAC

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No problem, @kp5450121. @alleycatkate recommended that you look into contacting National Jewish Health https://www.nationaljewish.org Like Mayo Clinic, they excel in pulmonology.

Liked by alleycatkate

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@baz10

Hi sylvermound, You mentioned that your doc said you might have gotten the MAI from gardening, and our mulch is one of the best places to get mold from. Also digging in the soil can release different toxins from bird droppings, that can cause hystoplasmosis that can scar the lungs and cause a fungal infection. I love to garden, but sometimes do wear the surgical type ear loop mask and try to do it in the late day or evening hours. Best wishes with your bronchoscopy.

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There are also surgical type masks made by 3M than are 99% effective at filtration of very small particles of 0.1 microns. That's as good as HEPA filtration in the paper filter material. They have ear loops and are latex free. This wouldn't fit as tight as a respirator or a dust mask in sealing out stuff, but they are comfortable and do a pretty good job. I have asthma and find that these reduce exposure and help my allergies. You can buy them online. I sometimes wear 2 at the same time for extra protection and sleep with them on too. I keep them in my car for when I drive past smoke or dust and I can put them on quickly. They are 3M #1820 disposable Procedure Masks and come in boxes of 50.

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