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Cavity size increased

Posted by alyssa999 @alyssa999, Apr 14 8:44am

Hi all haven't posted for a while, diagnosed with Mac in May 2024 cavity size was 92mm when diagnosed has now gone up to a huge 135mm. Has anyone had a cavity of that size and successfully treated the Mac infection, am struggling to find someone with a similar sized cavitation and has overcome this infection. Quite scary I'm only 26 and scared this will take my life

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Sue, Volunteer Mentor | @sueinmn | Apr 14 9:19am

@alyssa999 It is always scary to be told things are not getting better. Due to your young age and the size of the cavity, have you considered being seen at one of the MAC centers of excellence? Of course, National Jewish Health (NJH) is considered the top of the list, but if that is not accessible to you, there are numerous locations around the country:
https://connect.mayoclinic.org/discussion/the-bronchiectasis-care-center-network-33-centers/
In the meantime, are you on the antibiotic regiment and doing daily airway clearance with saline? Has your doctor ordered sensitivity testing of a sputum culture to see if you are on the correct antibiotics?

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alyssa999 | @alyssa999 | Apr 14 4:36pm

Thank you for that unfortunately I'm in Australia, I did around 5 months treatment got pregnant stopped the medication with advice from specialist. was meant to have a specialist app shortly after that giving birth, haven't heard back seeing gp Friday to try to resend another referral marking urgent and the size that the cavity has grown also an updated ct scan... Never got advice to start nebulizing this specialist hasn't really helped a whole lots and doesn't seem to bothered by how big the cavity has gotten. I have other cavity's that are quite big too but the one mentioned being the biggest one. From what I read I should have been offered some sort of inhaled antibiotic too as well as the big 3. Sputum samples still positive and sensitivity testing was done. July they said I was on waiting list for I still feel that's so long away and my whole lung will be gone. Thanks for replying

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scoop | @scoop | Apr 14 4:52pm
In reply to @alyssa999 "Thank you for that unfortunately I'm in Australia, I did around 5 months treatment got pregnant..." + (show)
Profile picture for alyssa999 @alyssa999

Thank you for that unfortunately I'm in Australia, I did around 5 months treatment got pregnant stopped the medication with advice from specialist. was meant to have a specialist app shortly after that giving birth, haven't heard back seeing gp Friday to try to resend another referral marking urgent and the size that the cavity has grown also an updated ct scan... Never got advice to start nebulizing this specialist hasn't really helped a whole lots and doesn't seem to bothered by how big the cavity has gotten. I have other cavity's that are quite big too but the one mentioned being the biggest one. From what I read I should have been offered some sort of inhaled antibiotic too as well as the big 3. Sputum samples still positive and sensitivity testing was done. July they said I was on waiting list for I still feel that's so long away and my whole lung will be gone. Thanks for replying

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@alyssa999
Hi, Sorry to hear of these troubles. The good news is that you are young and many strides have been made in combating these diseases (Bronchiectasis and NTM).

One amazing resource is the Bronchiectasis Toolkit which was created by Australian medical health providers. When I was first diagnosed many years ago it was the only robust information on bronchiectasis I could find. There you will find lots of information about airway clearance, the mainstay of treatment for bronchiectasis. I hope you find it helpful. Plus there are a number of members here who reside in Australia you may be able to connect with.
https://bronchiectasis.com.au
https://bronchiectasis.com.au/registry

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