Possible Aspergilloma to require surgery

Posted by reneecbeard @reneecbeard, Jan 14 11:27am

Does anyone have a pulmonologist and/or thoracic surgeon they recommend at Mayo Rochester? I have an appt with Dr. Hoskote on 2.7. (Before I asked to move up my appt, I had one with Dr. Limper on 2.28).

I'm taking anti-fungal meds to prevent spread and HOPE it will shrink the 7CM mass in upper left lobe. I'm very nervous/anxious/all the things and don't know how to really feel comfortable with any doctor – outside of recommendations and of course I have been trying to find reviews and things, but they only share so much.

Any advice is appreciated. Thank you.

Interested in more discussions like this? Go to the Lung Health group.

I should also add, this will be my first visit to Mayo.

REPLY

Hi @reneecbeard, I added your question to the MAC & Bronchiectasis group as well since several members of that group have also dealt with aspergillus, like @thumperguy @windwalker @goodyrl @walisky @franthony and @brigby

You'll be in good hands at Mayo Clinic, Rochester. I'm sure @dc1950 @auntnanny @windwalker @migizii @bluesplashgirl and others who have experience with pulmonology at Mayo Clinic can tell you more.

Perhaps you'll find the tips helpful that members share in this discussion about starting with a new specialist:
– Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

Renee, will you be travel from out of state to go to Mayo Clinic?

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I don't have the same problem you do but my pulmonologist at Rochester is Dr. Teng Moua. I first went there in 2014 and I, like you, was very nervous. I live on the Ks/Ok state line so it was about a 10-12 hour drive with no stops. But, I can honestly tell you that you will be more than impressed. Such a kind and caring group of doctors and assistants and will make you feel welcome and I think you are certainly in the right place — no matter what the problem. I've been back 3 times but they continue to work with me long distance and you will be able to use their portal and get to them quickly. Also, they gave me pho numbers to reach them. I'm almost 81 years old now and most people thought I was about to pass on when I went there. My problem didn't turn out to be what I was sent for and it took them only an hour to diagnose. There were three doctors examined and visited with me before they told me to come back in an hour and they would know. All were more than you would expect in friendliness and making you feel you "might" live. Ha! Seriously, I asked Dr. Moua before I left that day if I was going to die from my problem and he just sweetly smiled and said "You will die with it but hopefully not from it". He said he thought they could maintain although they could not cure. I hope all this writing will help you be less nervous and it will be most interesting to have your feedback after you've been there.

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@auntnanny

I don't have the same problem you do but my pulmonologist at Rochester is Dr. Teng Moua. I first went there in 2014 and I, like you, was very nervous. I live on the Ks/Ok state line so it was about a 10-12 hour drive with no stops. But, I can honestly tell you that you will be more than impressed. Such a kind and caring group of doctors and assistants and will make you feel welcome and I think you are certainly in the right place — no matter what the problem. I've been back 3 times but they continue to work with me long distance and you will be able to use their portal and get to them quickly. Also, they gave me pho numbers to reach them. I'm almost 81 years old now and most people thought I was about to pass on when I went there. My problem didn't turn out to be what I was sent for and it took them only an hour to diagnose. There were three doctors examined and visited with me before they told me to come back in an hour and they would know. All were more than you would expect in friendliness and making you feel you "might" live. Ha! Seriously, I asked Dr. Moua before I left that day if I was going to die from my problem and he just sweetly smiled and said "You will die with it but hopefully not from it". He said he thought they could maintain although they could not cure. I hope all this writing will help you be less nervous and it will be most interesting to have your feedback after you've been there.

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I am 83 years old with MAC Abscessus. I healthy otherwise from walking/exercising; taking multiple vitamins regularly and nebulizing. At this age, I really don't expect to be cured of this disease; but, maintain, as your doctor said. I also want to avoid taking the BIG THREE because of the side effects. Most antibiotics give me diarrhea and itchy skin. Will see how it goes!

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@nac1

I am 83 years old with MAC Abscessus. I healthy otherwise from walking/exercising; taking multiple vitamins regularly and nebulizing. At this age, I really don't expect to be cured of this disease; but, maintain, as your doctor said. I also want to avoid taking the BIG THREE because of the side effects. Most antibiotics give me diarrhea and itchy skin. Will see how it goes!

Jump to this post

Nancy, I think you have the right answers — love your attitude and think you are a problem solver……

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@nac1

I am 83 years old with MAC Abscessus. I healthy otherwise from walking/exercising; taking multiple vitamins regularly and nebulizing. At this age, I really don't expect to be cured of this disease; but, maintain, as your doctor said. I also want to avoid taking the BIG THREE because of the side effects. Most antibiotics give me diarrhea and itchy skin. Will see how it goes!

Jump to this post

Antibiotics can also give one C-Difficile – I was in the hospital for a week ten years ago because my dentist gave me Amoxicillian after pulling a tooth. The hospital included probiotics in the treatment – not a cure but they offer some protection

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@colleenyoung

Hi @reneecbeard, I added your question to the MAC & Bronchiectasis group as well since several members of that group have also dealt with aspergillus, like @thumperguy @windwalker @goodyrl @walisky @franthony and @brigby

You'll be in good hands at Mayo Clinic, Rochester. I'm sure @dc1950 @auntnanny @windwalker @migizii @bluesplashgirl and others who have experience with pulmonology at Mayo Clinic can tell you more.

Perhaps you'll find the tips helpful that members share in this discussion about starting with a new specialist:
– Your Tips on How to Get Off to the Best Start with a New Specialist https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/

Renee, will you be travel from out of state to go to Mayo Clinic?

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Thank you so much, @colleenyoung. I really appreciate it. My husband and I will be coming there from Dallas,TX. This group is wonderful. I am grateful to have found it!

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@nac1

I am 83 years old with MAC Abscessus. I healthy otherwise from walking/exercising; taking multiple vitamins regularly and nebulizing. At this age, I really don't expect to be cured of this disease; but, maintain, as your doctor said. I also want to avoid taking the BIG THREE because of the side effects. Most antibiotics give me diarrhea and itchy skin. Will see how it goes!

Jump to this post

Hi, @nac1 I'm typically walking 2-3 miles a day, occasionally lifting weights and doing yoga to stay active. I could definitely do more! Can you tell me what the BIG THREE are? Are they all antibiotics?

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@auntnanny Thank you so much for your words. I feel so much better. I'm 51 and heading into this new-to-me territory and feeling so overwhelmed. I know Mayo is top-notch, but hearing from others who have had care there is so meaningful. I live in Dallas, so also glad to hear that maintaining a relationship with the drs still seems to work well. I really appreciate you.

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renee — please write after you've been there and let me know how it felt for you. I think you will be extremely pleased. (And not scared)

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@auntnanny

Nancy, I think you have the right answers — love your attitude and think you are a problem solver……

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Thank you Sue! I I am doing well for now. Will see what the future brings.

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@reneecbeard

Hi, @nac1 I'm typically walking 2-3 miles a day, occasionally lifting weights and doing yoga to stay active. I could definitely do more! Can you tell me what the BIG THREE are? Are they all antibiotics?

Jump to this post

They are the three antibiotics recommended to take for 12 to 18 months to "cure" MAC or NTM. Read more on this site, especially from a mentor, to learn more. I have learned a lot from Mentor Sue and others who have posted. You look young and being active really helps me. I hope you have a good Pulmonoligist and Infectious Disease Doctor.

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