Ksmiles123

Ksmiles123

Hello! Today is International Clinical Trials Day! https://www.humber.nhs.uk/news/?postid=608672

1 hour ago

Ksmiles123

Ksmiles123

Hello! Below is an updated physician referral list: https://ntminfo.org/united-states-of-america/

2 hours ago

Ksmiles123

Ksmiles123

Hello! How are you feeling?
Any special weekend plans? 

3 hours ago

  • NewestOldest
  • ChristinaHHi Katie! It's going to be a hot weekend in Virginia! The kids are almost done with school, and I can see summer on the horizon. ๐Ÿ˜„ I hope you have a wonderful weekend. 1 hour ago
  • Ksmiles123Thank you! It is wise for respiratory patients to plan ahead with diversional activities to do indoors when the temperatures and humidity get too high. Hopefully, it will cool down once again and we can enjoy some spring temperatures.8 minutes ago
Ksmiles123

Ksmiles123

Hello! We all need ongoing words if wisdom, inspiration: https://motivationallines.com/wisdom-quotes/

15 hours ago

Linda Esposito, MPH

Linda Esposito, MPHOn Sunday, May 22nd, National Jewish Health
nutrition expert, Michelle MacDonald will talk to us about bone health

How about joining me?



https://events.r20.constantcontact.com/register/eventReg?oeidk=a07ej6sgnxf1a6cd40f&oseq=&c=&ch=



Only two more days to sign up!!



1 day ago

Jean1

Jean1

I am going to get my JnJ vaccine today. About 18 months ago I got a Moderna and was sick for two months. As a result I did not get the second vaccine. Please send positive energy, prayers my way for success. I have been in isolation at home since March 2020๐ŸŒธ

2 days ago

360Coach Brandon

360Coach Brandon voted on Preventing Spring Flare-ups for those with Bronchiectasis

Gave a thumbs up for a blog post!

2 days ago

JohnT

JohnTvoted on Beginning the Journey of NTM Lung Disease

Gave a thumbs up for a blog post!

3 days ago

Kandy

Kandy

3 days ago

Kandy

Kandyvoted on Beginning the Journey of NTM Lung Disease

Gave a thumbs up for a blog post!

3 days ago

360Coach Brandon

360Coach Brandon voted on Beginning the Journey of NTM Lung Disease

Gave a thumbs up for a blog post!

3 days ago

Ksmiles123

Ksmiles123commented onBeginning the Journey of NTM Lung Disease

 I agree wholeheartedly that having a great medical team, being proactive with healthier lifestyle habits, review of pertinent educational materials will enable one to manage this diagnosis more effectively. ...

3 days ago

ChristinaH

ChristinaHadded a new article Beginning the Journey of NTM Lung Disease

This post was authored by Christina Hunt, BS, RRT.

For many people, the diagnosis of a lung condition can be a very uncertain time. Feelings of worry, fear, and confusion can weigh greatly on those trying to decide their next steps for treatment, adjust to major lifestyle changes, and answer the all-important question of โ€œWhy me?โ€ These challenges may seem more difficult for those diagnosed...

3 days ago

marsrocket

marsrocketHello, friends. Here is an article about building resilience when dealing with challenges including health issues, and potential stressors such as medical appointments. One of the tips is to seek out or create everyday joys. Wherever you live, birds are probably singing, and squirrels might be chasing each other. A few kind words spoken to a neighbor, or doing something creative or new like drawing what you see out of your window or playing a musical instrument, even poorly, might do wonders.
https://www.networkisa.org/articles/view/8-ways-successful-people-master-resilience

3 days ago

Ksmiles123

Ksmiles123

4 days ago

Ksmiles123

Ksmiles123Great news for phage therapy research: https://www.theguardian.com/science/2022/may/13/phage-therapy-fight-against-drug-resistant-infections-antibiotics

4 days ago

Ksmiles123

Ksmiles123Hello! Do you understand the allergy/ asthma connection? https://www.copdfoundation.org/COPD360social/Community/Questions-and-Answers/Check-in-The-Allergy-Asthma-Connection.aspx

4 days ago

Ksmiles123

Ksmiles123

Hello! Below is an overview on reactive airways: https://www.medicalnewstoday.com/articles/321061#takeaway

5 days ago

Ksmiles123

Ksmiles123

Hello! How are you doing today? Are you able to get out and enjoy the warmer weather and sunshine?
The ATS, American Thoracic Society Conference is taking place in San Francisco, CA this weekend. Doctors are meeting from around the globe to discuss NTM, Bronchiectasis and other respiratory issues. Updated research , educational programs are presented in conference rooms, poster boards with latest research is on display along with exhibitors in the exhibit room. The field of NTM / Bronchiectasis research has come a long way over the past decade. We have a lot to be grateful for and new treatments in the pipeline to look forward to. :) 

6 days ago

Linda Esposito, MPH

Linda Esposito, MPH

For some of us with COPD and bronchiectasis, particularly those who also have MAC Lung Disease, going to the dentist can be stressful. Being inverted in a dentistโ€™s chair, having the dental hygienist clean your teeth with an ultrasonic Cavitron spray and then using water from the spit bowl fountain to rinse, can expose us to harmful bacteria as well as cause coughing.But, if you take some precautions and have good communication with your dental team, it makes all the difference! 


Consider doing the following:


*Clear your airways before your visit.


*If you have GERD, you might take a few bites of bread before the visit. Carbohydrates will absorb the fluids in your stomach and make reflux less likely. Discuss this recommendation with your doctor.


*Bring a bottle of spring water to rinse your mouth.


*Use the dental office bathroom to do a few huff coughs before sitting in the chair.


*Explain to the dentist and hygienist that you have lung disease. If possible, ask that the chair not be inverted too much. Let them know that if you hold up your finger it means you need to sit up and turn your head away from them to cough.Have tissues ready in your lap.


*Have the hygienist do a manual cleaning instead of the Cavitron.


*If you are having a procedure done, ask the dentist to use saline water (they have it for extractions) instead of regular water. Or, perhaps your bottled water.


This is the difficult partโ€“RELAX!! I keep my hands on my belly to remind myself to breathe deeply from my diaphragm.


Good oral hygiene is important for everyone and especially for people with lung disease. There are hundreds of types of oral bacteria โ€“some good, some not so good, and lots we are currently studying because their role is unknown. However, tartar build up and gum disease can be prevented by regular dentist visits.

1 week ago

  • NewestOldest
  • Ksmiles123Good advice. The sad thing is that most dentists have not been educated on NTM/ Bronchiectasis. They may look at you as if you are being โ€œ overly cautious โ€œ, a germaphobe since they do not understand our challenges.
    It us important to be assertive and to advocate for your health.
    Lastly, please continue to ask whether ur not the dental hygienist and or assistant are vaccinated with Covid vaccination. Recently, the dental hygienist was not vaccinated at my dental office- my dentist did the cleaning.
    6 days ago
  • ChristinaHThis is a great post, Linda! Thank you so much! 6 days ago
Ksmiles123

Ksmiles123

1 week ago

Jovelyn

Jovelyn

Hello I'm a new member here. I am not tge patient but my husband. He is only 29 years old but he already has a bronchiectasis. I am really concerned abouth his breath. Before I thought he just need to brush his teeth frequently and use mouthwash. But the smells really never goes away and that's the time I remembered that he told me he had a problem in his lungs when he was still a little kid but he ir was already cured. Please help me what should I do. Anyway I'm from Philippines. Nice to meet you all. And I hope everyone is doing well God blessed us a. ๐Ÿ™

1 week ago

  • NewestOldest
  • Ksmiles123Jove Lynn,
    Hello! Welcome to the site. Has your husband seen a pulmonary doctor recently? Does he also have stomach issues- acid reflux? 1 week ago
  • ChristinaHHi Jovelynโ€‹. I like Katie's suggestion. I had another thought, has your husband seen his dentist lately? There may be a tooth that may be having a problem and not causing pain yet. Also, sometimes certain bacteria in the sputum can have an odor. I remember this when I use to perform chest physical therapy on CF children. Some of them had a pseudomonas infection that caused their sputum to have an odor. 6 days ago
  • Jean1I find if I donโ€™t brush after any treatments ie nebulizer, inhalers my breath and mouth get pasty. So I brush before and after any breathing treatments. Also I try to use mouthwash after treatments. 4 days ago
Ksmiles123

Ksmiles123commented onPreventing Spring Flare-ups for those with Bronchiectasis

 Thank you for posting a great article! We had mold in the basement that wasnโ€™t apparent to the naked eye. Ongoing allergy symptoms led me to get a thorough assessment of our home. Remediation , including the placement of a dehumidifier was done. ....

1 week ago

ChristinaH

ChristinaHadded a new article Preventing Spring Flare-ups for those with Bronchiectasis

This post was authored by Christina Hunt, BS, RRT.

Those with bronchiectasis (a lung disease with enlarged airways that are thickened and/or scarred) frequently have a lot of mucus. If a person has normal lungs, they can clear the excess mucus. However, in bronchiectasis, the cilia (tiny hair-like fibers that help to sweep mucus out of the lungs) donโ€™t work well. This causes the mucus to...

1 week ago

Ksmiles123

Ksmiles123

1 week ago

Ksmiles123

Ksmiles123

Reactive airways often produce excessive mucus. Do you fully understand the purpose of mucus within your body? https://www.webmd.com/allergies/features/the-truth-about-mucus

1 week ago

Ksmiles123

Ksmiles123

Did you know that increased stress can contribute to an increase in reactive airway challenges? Below is an article on tips to reduce stress in our everyday lives: https://www.healthline.com/nutrition/16-ways-relieve-stress-anxiety#2.-Follow-a-healthy-diet

1 week ago

Surviving Again

Surviving Again

I have been living with bronchiectasis for a couple of years. Yesterday, I was diagnosed with NTM. Antibiotic treatment has been recommended. I have a long-planned trip to Spain (3 weeks)  in September,  which has been postponed due to COVID for 3 years. I would like to know if this trip would be possible during treatment or to wait. I realize each person reacts differently but would the procedures be prohibitive? Any ideas or suggestions? 

1 week ago

  • NewestOldest
  • Ksmiles123Hello! Welcome to the site. Yes, each person reacts differently to the 3 meds. Personally, I would postpone a 3week trip unless you are planning on staying in one place relaxing , not constantly on the go. I donโ€™t mean to sound like a โ€œDebbie downerโ€ but some patients experience GI discomfort which is hard to deal with when you are constantly traveling. Others experience fatigue. Both are unpredictable. I do have a friend who travels a lot w NTM challenges but has been dealing with this for many years and is now more equipped to deal with unpredictable moments.
    I realize that this is really difficult to accept after putting off plans for the past two years due to corona.Please keep us posted. 1 week ago
  • ChristinaHHi Surviving Again โ€‹. Katie is right that people do react differently to the medication regimen. How long can you wait before you have to decide to postpone or not? Being that it is May, and your trip is in September.... you might have a good idea of how you are feeling on the medication after a bit. If possible, I would make your decision once you know more. But if you are close to a deadline for deciding, I would err on the side of caution.1 week ago
Ksmiles123

Ksmiles123

1 week ago

Ksmiles123

Ksmiles123

Hello! Are you taking allergy medicine for spring allergies? I do not like the way antihistamines makes me feel - fatigue even when I take them at night. Are antihistamines agreeing with you? 

1 week ago

Ksmiles123

Ksmiles123Are you dealing with seasonal allergies? https://www.mayoclinic.org/diseases-conditions/hay-fever/in-depth/seasonal-allergies/art-20048343

1 week ago

Ksmiles123

Ksmiles123Hello! Happy Motherโ€™s, Godmothers, grandmotherโ€™s, want to be mothers, act in the role of a mother, nurturing women day on this site. 

1 week ago

GalleryGirl23

GalleryGirl23

Hi, two weeks ago, I started on the big three antibiotics; i was pleasantly surprised the first week when I didnโ€™t seem to have any side effects from the daily regimen (my disease is mild, asymptomatic for the most part until I developed a periodic hemoptysis a few months ago).   However, the past few days, I started feeling very light headed, and extreme fatigue.  Obviously, i will be discussing with my treating physicians, but looking for any input as I attempt to connect in this forum.   The antibiotic cocktail prescribed is Azithromycin, Rifampin and Ethambutol.  I I started out taking them all together early morning, an hour before food or coffee.  Yesterday i took them early afternoon hoping to be able to function more productively for at least part of the day; however, still lightheaded and dizziness this morning even before taking the dosage.  Any input, ideas, suggestions, thoughts welcome with the understanding that i will be talking to my physicians and already asked via my health portal.  Thank you.  

1 week ago

  • NewestOldest
  • Ksmiles123Hello! Welcome to the site. Some patients take Ethambutol and rifampin at night. Perhaps, you can attempt this and evaluate how you feel during the daytime hours. 
    Have you reported your lightheaded ness , dizziness to your doctor via the portal? Do you have a history of any cardiac issues? BP issues? As you know- It is important  to keep your doctors updated. 
    I hope that the change in Med routine helps you. Please keep us posted. 1 week ago
  • ChristinaHI agree with Katie. I would definitely communicate to your health care team about the lightheaded/dizzy side effects of treatment. This could cause safety issues that could result in a fall. I like Katie's idea of spacing the medications out throughout the day. This could definitely help you. Nevertheless, keep that communication going with your team. Their advisement can be key to your success! 1 week ago
Kandy

Kandyvoted on Living with Bronchiectasis

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1 week ago

JohnT

JohnTcommented onLiving with Bronchiectasis

 Hi Mary, Thanks for your great article. It helps all of us to hear real stories that show we can still function with bronchiectasis. Best wishes to you!...

1 week ago

JohnT

JohnTvoted on Living with Bronchiectasis

Gave a thumbs up for a blog post!

1 week ago

Ksmiles123

Ksmiles123commented onLiving with Bronchiectasis

 We all need ongoing inspiration. :) ...

1 week ago

Cho Htun

Cho Htuncommented onLiving with Bronchiectasis

 Thank you so much for this. ...

1 week ago

Ksmiles123

Ksmiles123

Hello! Today is National Nurseโ€™s Day : https://nationaltoday.com/national-nurses-day/

2 weeks ago

Kandy

KandyNatl WalkThisMay Month.  Get those tennis out and start walking exercise is so very good for us.  

2 weeks ago

Linda Esposito, MPH

Linda Esposito, MPHDo you have a chronic cough? Join the European Lung Foundationโ€™s first Chronic Cough Patient Conference to learn more about this condition.The Chronic Cough Patient Conference will take place online on Saturday May 7th, from 09:30-13:00 CEST.
 
It is being organized by members of the ELF Cough Patient Advisory Group and medical experts from NeuroCough โ€“ a European Respiratory Society (ERS) Clinical Research Collaboration (CRC).

If you live in the US the time might not work for you, however by signing up youโ€™ll receive a link to the recording.
Click link to sign up!!!

https://bit.ly/37hPL6P

2 weeks ago

Medical Advice

It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. While we encourage individuals to share their personal experiences with bronchiectasis and NTM, please consult a physician before making changes to your own disease management plan.



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