Hello Totty. I had aspergillus back in 2016 and was able to clear it after 30 days by taking inhaled tobramycin. I have been trying to get a referral to see Dr. Flume. How do you and your husband like him?
I looked up Dr Flume’s contacts and phoned
843-792-9200 and spoke with Kenya. Sorry I can’t recall if she answered but I think I was transferred to her. She explained what I needed to do:
have all pulmonary records faxed to them for review to see if accepted as patient (843-792-2995 fax) which we did. We also faxed medications and our contacts. Soon a call from Kenya setting up our first visit.
This week our second.
Good luck with this.
I spoke recently with someone on another support group who is his patient and she is very pleased also. She told me they will even help with hotel reservations.
Let me know how this works out for you. Happy Thanksgiving!
I also had pseudomonas pneumonia!! Not doing real well, I can’t keep my iron,hemoglobin & RBC up. I am still very short of breath and have stage 2 COPD.
Yes, I had it and lost my right lung to this!!! Was put on antibiotics by IV’s multiple times (huge doses) and put on the voriconizole also but antibiotics didn’t help and took the voriconizole for 6mths after surgery.
I too had it, started out as pneumonia and then cavitia pneumonia and then
Aspergillosis. I had
Multiple transfusions. Then double lobectomy, right lung. I hope you have a good pulmonologist and infectious disease doctor and primary care doctor. They saved my life. Sadly they all left and moved to different places.
Hello Cheryl, When we have bronchiectasis, our lungs are essentially petri dishes, ready to grow bacteria, because they do not effectively clear mucus.
Aspergillus is a bit more uncommon, but infectious disease docs are the right ones for treating it.
When you were diagnosed, was it by a pulmonologist, or your primary provider?
Were you given any instruction about airway clearance to keep more infections from settling in?
Sue
I also had pseudomonas pneumonia!! Not doing real well, I can’t keep my iron,hemoglobin & RBC up. I am still very short of breath and have stage 2 COPD.
WOW same exact here my iron hemoglobin and RBC are always low still very short of breath and stage 2 COPD also.Also had Aspergillosis! They saved my life!!! Had multiple blood transfusions had a blood clot in my lung!!!! It was and still is very scary! YES! I am blessed with a very good team of doctors❤️❤️❤️
WOW same exact here my iron hemoglobin and RBC are always low still very short of breath and stage 2 COPD also.Also had Aspergillosis! They saved my life!!! Had multiple blood transfusions had a blood clot in my lung!!!! It was and still is very scary! YES! I am blessed with a very good team of doctors❤️❤️❤️
Also had pseudomonas pneumonia! I had a mass form in my right lung and had to remove the lung! Was supposed to take 2 hours for the surgery and took 10&1/2 hours!!! Said that the mold and fungus was all over the lung.
Also had pseudomonas pneumonia! I had a mass form in my right lung and had to remove the lung! Was supposed to take 2 hours for the surgery and took 10&1/2 hours!!! Said that the mold and fungus was all over the lung.
I’m doing!!! I have never and will not recover from losing my right lung. I’m very short of breath and have no energy. I have several other health issues but was able to deal with them before the lung issues,now I just get by. The lung surgery just took everything out of me. I will soon be 57 years old and feel like I’m 77 years old! My husband was just diagnosed with Histoplasmosis cavition pneumonia,they’ve got him on volconizole.He’s healthy and his body all but healed itself.
I had MAC 3-4 years ago, I have Aspergillus now but all MAC tests are negative. ID Dr at NJH wants me to have a RUL lobectomy but I have to have an Amikacin IV for 6 weeks. I have challenged him on this, has anyone else been in this situation?
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I looked up Dr Flume’s contacts and phoned
843-792-9200 and spoke with Kenya. Sorry I can’t recall if she answered but I think I was transferred to her. She explained what I needed to do:
have all pulmonary records faxed to them for review to see if accepted as patient (843-792-2995 fax) which we did. We also faxed medications and our contacts. Soon a call from Kenya setting up our first visit.
This week our second.
Good luck with this.
I spoke recently with someone on another support group who is his patient and she is very pleased also. She told me they will even help with hotel reservations.
Let me know how this works out for you. Happy Thanksgiving!
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2 ReactionsI also had pseudomonas pneumonia!! Not doing real well, I can’t keep my iron,hemoglobin & RBC up. I am still very short of breath and have stage 2 COPD.
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Helpful -
Hug
1 ReactionI too had it, started out as pneumonia and then cavitia pneumonia and then
Aspergillosis. I had
Multiple transfusions. Then double lobectomy, right lung. I hope you have a good pulmonologist and infectious disease doctor and primary care doctor. They saved my life. Sadly they all left and moved to different places.
Yes I did sputum test it takes a long time to grow a culture some longer than others. Mine happened to come out Aspergillus.
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3 ReactionsWOW same exact here my iron hemoglobin and RBC are always low still very short of breath and stage 2 COPD also.Also had Aspergillosis! They saved my life!!! Had multiple blood transfusions had a blood clot in my lung!!!! It was and still is very scary! YES! I am blessed with a very good team of doctors❤️❤️❤️
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Like -
Helpful -
Hug
2 ReactionsAlso had pseudomonas pneumonia! I had a mass form in my right lung and had to remove the lung! Was supposed to take 2 hours for the surgery and took 10&1/2 hours!!! Said that the mold and fungus was all over the lung.
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3 ReactionsGrandma5, how are you doing.. Hoping you are fine. Please let me know if you want to. Jeff
I’m doing!!! I have never and will not recover from losing my right lung. I’m very short of breath and have no energy. I have several other health issues but was able to deal with them before the lung issues,now I just get by. The lung surgery just took everything out of me. I will soon be 57 years old and feel like I’m 77 years old! My husband was just diagnosed with Histoplasmosis cavition pneumonia,they’ve got him on volconizole.He’s healthy and his body all but healed itself.
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Hug
7 ReactionsThank you for asking!
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1 ReactionI had MAC 3-4 years ago, I have Aspergillus now but all MAC tests are negative. ID Dr at NJH wants me to have a RUL lobectomy but I have to have an Amikacin IV for 6 weeks. I have challenged him on this, has anyone else been in this situation?
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Like -
Helpful -
Hug
1 Reaction