Top MAC doctor/treatment Rochester: Questions to ask at first appt?

Posted by n4seth @n4seth, Thu, Apr 2 8:54am

Just recently diagnosed with MAC at Mayo in West Central Wisconsin and unable to get appointment until June probably due to covid 19. From what I have read who and where you receive treatment is vital to successful treatment. Who is the premier/successful doctor at the MAC center Mayo in Rochester?

@colleenyoung

Hi @n4seth, welcome to Mayo Clinic Connect. As @auntnanny mentioned, Mayo Clinic specialists work as teams. No matter which MAC expert you are assigned to, you will have the benefit of a team approach and the collective knowledge of multiple specialists. @windwalker @jkiemen and @jammer can also share about this Mayo approach.
You can also read these related discussions:
– I am new to Mayo and have my first appointment on Aug 5th. https://connect.mayoclinic.org/discussion/i-am-new-to-mayo-and-have-my-first-appointment-on-aug-5th/
– Good MAC Doctor Recommendations https://connect.mayoclinic.org/discussion/good-mac-doctor/

n4seth, How are you feeling? Are you currently taking any medication or therapy for MAC?

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Hi Colleen….do you know how much experience the infectious disease team in Eau Claire has? I have my first MAC consult via phone with one of the doctors in Eau Claire. It's a start!

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@n4seth

Hi Colleen….do you know how much experience the infectious disease team in Eau Claire has? I have my first MAC consult via phone with one of the doctors in Eau Claire. It's a start!

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@n4seth Here's information about the role of volunteer mentors here: https://connect.mayoclinic.org/page/about-connect/tab/volunteer-mentors/

How much experience a doctor or team has is a good question to ask during your initial phone consult. However, one thing you can be sure of is that Mayo Clinic Health System Eau Claire has access to the expert team at Mayo Rochester.

Members sharing in this discussion as well as @alleycatkate @anniepie @brigby @heathert @jenblalock @ling123 @margiebanks @megan123 @rits can help you create a list of questions to ask as your first consult.

@n4seth what are some of questions you plan/hope to ask?

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@n4seth Hi. I take it you live in Wisconsin? I am glad you asked about my role as Mentor for this group. I am one of two volunteer Mentors for our group. @sueinmn is the other one. Our group is so active that it required two of us! Anyhow, our job is to welcome new members and help guide them through using the site. We are patients that have bronchiectasis, and have had active mac ourselves. (I have been mac-free since 2014) You can click on my picture icon and read about my treatment plan. We are here to answer your questions and help you find info and resources. We are NOT medical professionals. We have this disease, and can bring info and support to those who are just starting out on this journey. I think you will find that our members offer helpful info., kindness, and friendship. Some form very close bonds and stay on here years even after they have recovered. Those people are our beacons of hope. Are you currently experiencing symptoms besides fatigue?

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@colleenyoung

@n4seth Here's information about the role of volunteer mentors here: https://connect.mayoclinic.org/page/about-connect/tab/volunteer-mentors/

How much experience a doctor or team has is a good question to ask during your initial phone consult. However, one thing you can be sure of is that Mayo Clinic Health System Eau Claire has access to the expert team at Mayo Rochester.

Members sharing in this discussion as well as @alleycatkate @anniepie @brigby @heathert @jenblalock @ling123 @margiebanks @megan123 @rits can help you create a list of questions to ask as your first consult.

@n4seth what are some of questions you plan/hope to ask?

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My questions so far include:
How severe is my case? Prognosis?
Treatment options and side effects?
Effectiveness of treatments?
Duration of treatment?
How many cases have the Eau Claire doctors dealt with? Are there other patients like me in this area?
What lifestyle changes do I need to make?

Please help! Are there any other questions I should had for my first consult?

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@windwalker

@n4seth Hi. I take it you live in Wisconsin? I am glad you asked about my role as Mentor for this group. I am one of two volunteer Mentors for our group. @sueinmn is the other one. Our group is so active that it required two of us! Anyhow, our job is to welcome new members and help guide them through using the site. We are patients that have bronchiectasis, and have had active mac ourselves. (I have been mac-free since 2014) You can click on my picture icon and read about my treatment plan. We are here to answer your questions and help you find info and resources. We are NOT medical professionals. We have this disease, and can bring info and support to those who are just starting out on this journey. I think you will find that our members offer helpful info., kindness, and friendship. Some form very close bonds and stay on here years even after they have recovered. Those people are our beacons of hope. Are you currently experiencing symptoms besides fatigue?

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I am so happy I found you! (Yes, I live in WI, but am close enough to do Rochester if recommended) The deep, ever present cough keeps me from ever getting a good night's sleep, but the fatigue is now more than just lack of sleep. I am feeling extremely anxious as well-probably because I don't have a plan yet and haven't started treatment. Being quarantined for the coronavirus is probably giving me way too much time to think and stress. Thank you Terri! It is so comforting to know I have a lifeline!

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@n4seth

My questions so far include:
How severe is my case? Prognosis?
Treatment options and side effects?
Effectiveness of treatments?
Duration of treatment?
How many cases have the Eau Claire doctors dealt with? Are there other patients like me in this area?
What lifestyle changes do I need to make?

Please help! Are there any other questions I should had for my first consult?

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@n4seth Welcome to our group. I cannot tell you how much I have learned here and how much it has eased my mind after my diagnosis of MAC. I do not see how you were diagnosed…Was it a bronchoscopy? What I would want to find out from your Dr would be …Do I have bronchiectasis? (Most of us do…it is a structural lung disease that often leaves one prone to infection). I would also try to address any causes that might have resulted in MAC …such as acid reflux, possible hot tub or swimming pool usage. If you are aspirating fluid into your lung at night because of acid reflux, you will need to get that under control. Do you need treatment at this point? Not all of us are on antibiotics and take a wait and see approach as the antibiotics can be difficult and not always provide the desired results or the MAC can return after the treatment was successful. It also seems that there can be a natural conversion without treatment. I personally would like to know more about that and how often that occurs. ?? There are lots of things that the folks on this site do to keep their lungs clean and as healthy as possible. YOu might ask if you should nebulize a saline solution….most find a 7% solution very effective in helping to remove sputum. You will need a script for that along with the nebulizing machine. There are also devices to help you to knock the sputum off the lung walls so you can cough it up….such as an aerobika, acapella or a vest? I guess the most important is finding how much your lungs have been compromised and if you are a candidate for antibiotics. There are different approaches to antibiotics…not one size fits all. There are also supplements that many take to help clear the lungs and many on this site find them very helpful. Most Dr.s do not seem to address this. I personally am approaching this disease with diet and supplements as well as many tips I have learned on this site. I am fortunate to have a mild case of bronchiectasis and MAC. We are all here to try to help one another through this. This is a crummy time to find you have a lung issue with the current climate of Covid19 but try not to stress too much till you get to your appointment and get a handle on your situation. I think I probably went along having this disease for years without a diagnosis. I am actually really happy to be diagnosed as now I am able to take healthful steps for my lungs. I wish you good luck and good health going forward. Kate

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@alleycatkate

@n4seth Welcome to our group. I cannot tell you how much I have learned here and how much it has eased my mind after my diagnosis of MAC. I do not see how you were diagnosed…Was it a bronchoscopy? What I would want to find out from your Dr would be …Do I have bronchiectasis? (Most of us do…it is a structural lung disease that often leaves one prone to infection). I would also try to address any causes that might have resulted in MAC …such as acid reflux, possible hot tub or swimming pool usage. If you are aspirating fluid into your lung at night because of acid reflux, you will need to get that under control. Do you need treatment at this point? Not all of us are on antibiotics and take a wait and see approach as the antibiotics can be difficult and not always provide the desired results or the MAC can return after the treatment was successful. It also seems that there can be a natural conversion without treatment. I personally would like to know more about that and how often that occurs. ?? There are lots of things that the folks on this site do to keep their lungs clean and as healthy as possible. YOu might ask if you should nebulize a saline solution….most find a 7% solution very effective in helping to remove sputum. You will need a script for that along with the nebulizing machine. There are also devices to help you to knock the sputum off the lung walls so you can cough it up….such as an aerobika, acapella or a vest? I guess the most important is finding how much your lungs have been compromised and if you are a candidate for antibiotics. There are different approaches to antibiotics…not one size fits all. There are also supplements that many take to help clear the lungs and many on this site find them very helpful. Most Dr.s do not seem to address this. I personally am approaching this disease with diet and supplements as well as many tips I have learned on this site. I am fortunate to have a mild case of bronchiectasis and MAC. We are all here to try to help one another through this. This is a crummy time to find you have a lung issue with the current climate of Covid19 but try not to stress too much till you get to your appointment and get a handle on your situation. I think I probably went along having this disease for years without a diagnosis. I am actually really happy to be diagnosed as now I am able to take healthful steps for my lungs. I wish you good luck and good health going forward. Kate

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Kate, I find your words so comforting and your questions so helpful! I do have acid reflux, and swallowing problems-who knew? I'm also an avid gardener and wondering about that, but know I have to take it one step at a time. I am a cancer survivor (I hope) and two years in a row the follow-up scans showed my lungs were inflamed resulting is a referral to pulmonology. Although I had been diagnosed with asthma nine years ago, the pulmonologist knew immediately it was not asthma and did the sputum cultures which resulted in my diagnosis. I feel very fortunate that he was able to identify it. Depending on what I find out, I would love to hear more about dietary changes and supplements that you are using. It is the beginning of another journey and the calming influence of the group has already been a great support! Thank you! Nancy

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@n4seth

Kate, I find your words so comforting and your questions so helpful! I do have acid reflux, and swallowing problems-who knew? I'm also an avid gardener and wondering about that, but know I have to take it one step at a time. I am a cancer survivor (I hope) and two years in a row the follow-up scans showed my lungs were inflamed resulting is a referral to pulmonology. Although I had been diagnosed with asthma nine years ago, the pulmonologist knew immediately it was not asthma and did the sputum cultures which resulted in my diagnosis. I feel very fortunate that he was able to identify it. Depending on what I find out, I would love to hear more about dietary changes and supplements that you are using. It is the beginning of another journey and the calming influence of the group has already been a great support! Thank you! Nancy

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@n4seth, Don't stress because now that you've found this group…they are a FOUNT of information! I was diagnosed four years ago and took the big three antibiotics for a year and my pulmonologist believes that I got mine because of acid reflux. I'll always remember him asking me if I slept on my stomach and I said yes! I'm a stomach sleeper! When you sleep on your stomach and have acid reflux…at night those stomach acids aspirate into your lungs and you don't even realize it. So you get yourself a wedge, I bought one that was just too big and too high and I felt like I was sleeping on a mountain but then I found a really good one with a slight less of an angle on the website or catalog from Hammacher Schlemmer. And then I sleep with one or two pillows on top of that.They actually have a WHOLE mattress wedge on that website but my husband didn't much care about sleeping on an angle so I got that one person one. I highly recommend nebulizing the 7% saline solution (and trust me that came from learning on this site because my pulmonologist didn't even prescribe it at that point. I had to ask for it.) These little bugs don't like hanging around when there's a salty environment. As for dietary changes I have pretty much stopped eating dairy, hardly any wheat and I've cut back on sugar. (I'm a sugar addict so it's very hard). Hope that helps. Nan

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@nannette

@n4seth, Don't stress because now that you've found this group…they are a FOUNT of information! I was diagnosed four years ago and took the big three antibiotics for a year and my pulmonologist believes that I got mine because of acid reflux. I'll always remember him asking me if I slept on my stomach and I said yes! I'm a stomach sleeper! When you sleep on your stomach and have acid reflux…at night those stomach acids aspirate into your lungs and you don't even realize it. So you get yourself a wedge, I bought one that was just too big and too high and I felt like I was sleeping on a mountain but then I found a really good one with a slight less of an angle on the website or catalog from Hammacher Schlemmer. And then I sleep with one or two pillows on top of that.They actually have a WHOLE mattress wedge on that website but my husband didn't much care about sleeping on an angle so I got that one person one. I highly recommend nebulizing the 7% saline solution (and trust me that came from learning on this site because my pulmonologist didn't even prescribe it at that point. I had to ask for it.) These little bugs don't like hanging around when there's a salty environment. As for dietary changes I have pretty much stopped eating dairy, hardly any wheat and I've cut back on sugar. (I'm a sugar addict so it's very hard). Hope that helps. Nan

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Thank you Nannette! I am so pleased to have found you!!!! Thanks for the sleeping tips…my bed is slightly elevated but I will have to get a real wedge or a different bed. Also, I will add the nebulizer to my list of questions. I already have gastro problems so don't eat wheat and have limited my dairy and sugar. I'm still a bit shell-shocked and overwhelmed, but am so appreciative of the information that people are sharing. It's comforting to have a lifeline! Nancy

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@nannette

@n4seth, Don't stress because now that you've found this group…they are a FOUNT of information! I was diagnosed four years ago and took the big three antibiotics for a year and my pulmonologist believes that I got mine because of acid reflux. I'll always remember him asking me if I slept on my stomach and I said yes! I'm a stomach sleeper! When you sleep on your stomach and have acid reflux…at night those stomach acids aspirate into your lungs and you don't even realize it. So you get yourself a wedge, I bought one that was just too big and too high and I felt like I was sleeping on a mountain but then I found a really good one with a slight less of an angle on the website or catalog from Hammacher Schlemmer. And then I sleep with one or two pillows on top of that.They actually have a WHOLE mattress wedge on that website but my husband didn't much care about sleeping on an angle so I got that one person one. I highly recommend nebulizing the 7% saline solution (and trust me that came from learning on this site because my pulmonologist didn't even prescribe it at that point. I had to ask for it.) These little bugs don't like hanging around when there's a salty environment. As for dietary changes I have pretty much stopped eating dairy, hardly any wheat and I've cut back on sugar. (I'm a sugar addict so it's very hard). Hope that helps. Nan

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Hi Nancy @n4seth Perfect info from Nan!! I just want to add about the acid reflux …do not eat or drink for 2, preferably 3 hours before bedtime…maybe only a sip of water. I totally agree with her dietary steps but take them a good deal further…another discussion.
Oh…and since you love to garden…you should probably wear a n95 mask (if they are ever available again) as MAC is in the earth as well as in the water. Be particularly careful if you feel you need to handle peat and newly potted plants. I used to live in the dirt but now limit my gardening to mostly pruning. Initially, it can be overwhelming but hopefully, it will fall into place and you will become much more comfortable. Questions? Just shout out!! Kate

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@n4seth

My questions so far include:
How severe is my case? Prognosis?
Treatment options and side effects?
Effectiveness of treatments?
Duration of treatment?
How many cases have the Eau Claire doctors dealt with? Are there other patients like me in this area?
What lifestyle changes do I need to make?

Please help! Are there any other questions I should had for my first consult?

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@n4seth….hi there…I would ask about airway clearance..do I start doing it now, and if so what do I use ie aerobika..how many times a day is recommended, and duration….also, is it too soon to be nebulizing saline 7 percent x2 a day?? Exercise is extremely important, to get the mucus out of our lungs, so as not to create an infection…there is so much more to ask, bug it sounds like you have a great start….Mayo Clinic Connect is what allows me to live a better life with all the knowledge on this forum, especially from Terry…I'm from Toronto, and we were lacking info in so many areas…Knowledge is Power..you are in the right place🇨🇦

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@megan123

@n4seth….hi there…I would ask about airway clearance..do I start doing it now, and if so what do I use ie aerobika..how many times a day is recommended, and duration….also, is it too soon to be nebulizing saline 7 percent x2 a day?? Exercise is extremely important, to get the mucus out of our lungs, so as not to create an infection…there is so much more to ask, bug it sounds like you have a great start….Mayo Clinic Connect is what allows me to live a better life with all the knowledge on this forum, especially from Terry…I'm from Toronto, and we were lacking info in so many areas…Knowledge is Power..you are in the right place🇨🇦

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Thank you Jennifer! Specific questions will really help with my conversation and I will add yours to my list. I agree that knowledge is power am I learning a lot! One week ago I was totally in the dark on this disease. I exercise regularly so I will keep that up. Have to say-I love your picture…you look healthy and happy! Nancy

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@megan123

@n4seth….hi there…I would ask about airway clearance..do I start doing it now, and if so what do I use ie aerobika..how many times a day is recommended, and duration….also, is it too soon to be nebulizing saline 7 percent x2 a day?? Exercise is extremely important, to get the mucus out of our lungs, so as not to create an infection…there is so much more to ask, bug it sounds like you have a great start….Mayo Clinic Connect is what allows me to live a better life with all the knowledge on this forum, especially from Terry…I'm from Toronto, and we were lacking info in so many areas…Knowledge is Power..you are in the right place🇨🇦

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Hi, Jennifer. In regards to your questions about airway clearance, has your pulmonologist not spoken to you about the avenue which is considered best for your symptoms? One can use an Aerobika, but the strength setting and frequency should be determined by your doctor. Have they measured your intake and output? Done any breathing measurements? Also, did they mention using a Smart Vest to help loosen the mucous? They should give you hands on instructions for this too, and it should be fitted and your regiment set up for you on the machine. Best wishes !!! Toni

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@n4seth

Thank you Jennifer! Specific questions will really help with my conversation and I will add yours to my list. I agree that knowledge is power am I learning a lot! One week ago I was totally in the dark on this disease. I exercise regularly so I will keep that up. Have to say-I love your picture…you look healthy and happy! Nancy

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I'm sorry. My reply below is somewhat ambiguous. I meant to reply to you….. but I wrote Jennifer. Sorry for the confusion. Best of luck. I can relate. There's so much out there but bottom line, we have to be our own advocates and this site is wonderful for answers to our many questions. Toni

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@n4seth

I am so happy I found you! (Yes, I live in WI, but am close enough to do Rochester if recommended) The deep, ever present cough keeps me from ever getting a good night's sleep, but the fatigue is now more than just lack of sleep. I am feeling extremely anxious as well-probably because I don't have a plan yet and haven't started treatment. Being quarantined for the coronavirus is probably giving me way too much time to think and stress. Thank you Terri! It is so comforting to know I have a lifeline!

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Is the head of your bed elevated? This should help.

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