Hello! Yes, it is overwhelming, to say the least when you are diagnosed with a rare disorder that you most likely had never heard of previously . Some patients take some time to adjust to new medications; common side effects are listed below .It is always best practice to contact your physician if symptoms continue to or worsen. Please keep us posted.

.https://www.drugs.com/sfx/voriconazole-side-effects.html

Hello! Have you read Insight?

https://www.ntminfo.org/insight-patient-pamphlet/

Hi kwg,

I was diagnosed with Aspergillus following treatment for Mycobacterium Avium Complex (MAC), but wasn't treated for it. You might ask your doctor or pharmacist if you can take the Voriconazole at a different time of day. I had nausea with one of my MAC meds, and changed to taking it before bed so I could basically sleep through the nausea.

I totally understand the overwhelm. That was me several years ago when I first got the diagnosis. I find that I cope better when I learn more, though I know that's not for everyone. Let me know if you'd like links to some excellent videos from a couple of the National Jewish docs. I hear that NJH is an amazing place and you will be in good hands there.

In 06 was in hospital for strep pneumonia and the stand in pulmo said he found aspergillus gave me a fungal med my throat started closing up. I stopped the med and he chewed me out for 3 days. A nurse came later apologized for him but when I seen my regular pulmo he doubt I even had aspergillus. My new pulmo since 2014 said I showed antibodies for it but he wouldn't treat me as you can pick up in the air.

I am sure you are feeling overwhelmed. Try to take it one day at a time and arm yourself with knowledge. 2019 is not lost to you. Hang in there and talk to your doctors about your concerns. The participants here can offer support and experiences. No questions are bad ones. Take care of you.

Hello,

This is complex, hearing all the diff opinions from drs, feeling lousy, coming to terms with having a serious illness..hang in there! You have found a community here of others who have been through it, are going through it, and know that you WILL start feeling better..

I have been on the roller coaster of this and another serious new dx (CVID) for about a year, and in reality to avoid the overwhelm I just take each day as it comes, and keep a positive attitude. There are "silver linings," some days they are harder to find then others.

Hello! Yes, chronic lung issues can put you on a roller coaster ride, to say the very least. Many of us are impacted daily by weather changes, humidity, extreme heat or cold and other variables.

However, we must seek support, maintain a positive attitude and put one foot in front of the other each day.

Welcome. I have had the diagnosis of bronchiectasis since 2013, but just found out yesterday that I may have NTM also. I am scheduled for a bronchoscopy to get a sample on 2/26. Trying to find out all I can about the diagnosis so I can go informed. I wish you luck in your treatment.

Hi There. I just got Diagnosed with Bronchiectasis about a month ago. I am actually feeling pretty positive about it, as at least I finally know what is up! I have been struggling with my health for years despite doing my best to live a healthy and active lifestyle.

A friend of mine says that I am both the fittest and unhealthiest person she knows which is quite an interesting combination. I have fought hard to remain fit and active and think that the journey should be easier now that i know the cause of my struggles. I suspect I have had this since I was a child but it has worsened over time and I have more or less had constant chest infections for at least the last 5 years.

It doesnt seem like there is an accepted way of treating this apart from clearing the lungs regularly. I am on a long course of antibiotics to try and beat the chest infection but aside from that my goal is to stay away from further drugs. At present I am experimenting with diet and breathing exercises. I have discovered the Buteyko method of breathing and have been working through basic exercises that i found online a week ago. That seems to be helping. I also do the 5 tibetan stretches in the morning if I feel up to it (followed by ung clearance) and try and walk and have a mini (10 -15 minute) strength workout daily if I have the energy.

Food does seem to be a trigger for me as i suppose bacteria love sugar! I have grudgingly removed all alcohol from my diet and try to avoid sugar, white flour (and things made from it) and most processed foods from my diet where I can. But I am not being too hard on myself and allowing the odd treat. Alcohol is the one thing that i want to reduce to zero long term however and I am currently succeeding.

Basically i think that looking after oneself becomes the priority with something like this. As if we are not well then work and children are hard to deal with. So I am investing lots of time into rest, food prep and breathing training. Trying to slow down a bit and not STRESS.

ANYONE = please feel free to get in touch with me if you would like to share thoughts and ideas. Someone with a similar mindset who has been on this journey for a long time would be great.

Good luck all.

Russco,

Hello! Welcome to this site! You are not alone. I have been in this journey for many years- 17 to be exact. It sounds as if you are in the right track w nutrition, airway clearance, exercise, stress management, etc. I post relevant tips in a daily basis. Some newcomers may question why I post the items I post .... I have learned the hard way how to lessen respiratory infections and desire to share information with the group.

I am grateful that I have been doing well respiratory wise over the past few years.:)

Please post any specific questions you may have.

Kati

Have. Not taken that particular drug unless there is another name for it. Was up to national jewish in November. Did not arrange for oxygen ahead of time and should have. I have microbacteria abscesses also. My disease is severe and advanced. Unfortunately my body would not tolerate the drugs. Came home worse off and now have to be on oxygen 24/7. National jewish very thorough

Welcome Russco,

I have bronchiectasis as confirmed dx for a year, and as time progresses my priorities shift some..From dietary point of view, the biggest impact I have noticed comes from eliminating dairy...certainly less mucous...am counting days between pneumonia and finding they are improving, and learning a lot from the COPD community about activity pacing...

Pulmonary hygiene measures increase in importance, again from the prevention point of view...aggressively advocating for what you need from providers is important, cuz things do fall thru the cracks..

Another current challenge is trying to add a longer view...of this as chronic illness, since I was basically in constant medical crises for the past 18 months..

Most of all, welcome, and know that you've found folks that "get it"!

Please pursue testing for immune deficiencies...in midst of treatments for that(monthly gammunex infusions) the infections are far fewer...am doing much more vigorous foci on clearing out lungs,but also these infusions help me fend off infections (as well as paying more attention to other factors)..hang in there and keep pushing!

Hello! I agree to get testing for deficiencies. Yes, keep on pushing and hang in there!