ChristinaH

ChristinaHSharing aspects of your journey with bronchiectasis and NTM can help others. This month we continue our Share Your Story series on the topic of โ€œlung surgeryโ€. Click on the link below to share your experience with having surgery on your lungs. It may help someone considering the same option to prepare and recover.
https://www.bronchiectasisandntminitiative.org/BronchandNTM360social/Community-Discussions/Question-and-Answers/Share-Your-Story-Lung-Surgery

Share Your Story - Lung Surgery

Have you ever had surgery on your lungs? If so, what tips can you share to help others with preparation and recovery?

2 weeks ago

  • NewestOldest
  • laff4evrhas had two lung surgeries.
    Some suggestions I could provide would prove antiquated because both surgeries were performed in the 1970's.  As for preparation - prepare yourself mentally for the rigors of an operation on the body by keeping in mind it's only for a short period of time.  But soon you will enjoy the benefits of improved physical health for a long period of time.

    As for recovery - I'd echo the advice I was given for recovery - do as much as you can as soon as you can right after the operation.

    Oh yeah - once you're on the gurney to take you to the operating room..... don't pull the sheet over your head, moan loudly and repeatedly flick the sheet from underneath. 1 week ago
  • ChristinaHGreat feedback laff4evrโ€‹! Thanks so much for sharing! I loved the chuckle at the end as well :)1 week ago
PatsyK9

PatsyK9

Doing great thanks!   My pulmonologist is terrific.  I've been on same inhalers for more than 10 years with no changes.  Cough a lot but that's normal for me.  Glad to be here and to have found this website.  Really helpful!!

12 hours ago

Ksmiles123

Ksmiles123

Many of us overindulged in desserts, bread over the Thanksgiving holiday. Below is a reminder of healthy foods for our lungs: https://www.healthline.com/health/copd/diet-nutrition#avoid-certain-items

16 hours ago

RoseHI

RoseHIanswered the question Share Your Story - Mental Health

Oh, please, make sure to have a sturdy chair nearby for support if you have balance or leg strength issues and you can sit and concentrate on the arm/hand movements if your legs tire. I want to share that two months ago, a woman using a walker started …
Ksmiles123Deppydo also answered the question Ksmiles123and 1 other also answered the question

1 day ago

RoseHI

RoseHIanswered the question Anyone used the Johns Hopkins & U. of Maryland Research Team mortality calculator?

If you take it, it asks for a lot of information (none of which is saved) so that the calculation is personalized for each person who takes -- it even takes into account where you live since it asks for your zip code.
Ksmiles123 also answered the question Ksmiles123 also answered the question

1 day ago

RoseHI

RoseHIasked the question: Anyone used the Johns Hopkins & U. of Maryland Research Team mortality calculator?

I found this on my state's COVID information hub. It's meant for unvaccinated, uninfected individuals living in the 50 states to assess their risk given their medical/health conditions. If you know anyone with bronchiectasis (it's one of the conditions …

1 day ago

Ksmiles123

Ksmiles123

I hope that the theme of โ€œ gratefulnessโ€ continues beyond this Thanksgiving weekend. Gratefulness is good for our bodies- our immune systems, our mental health. Is there someone who you are grateful for, in the past or present but havenโ€™t reached out to him/ her in awhile? The article below reviews tips of grateful people in tough times:https://www.lifehack.org/articles/lifestyle/the-10-top-habits-of-grateful-people-even-in-tough-times.html

1 day ago

Cho Htun

Cho Htun

About bronchiectasis - Patient Priorities (europeanlunginfo.org)
www.europeanlunginfo.org/bronchiectasis/about-bronchiectasis/

I found this web information today and want to share with you all.

2 days ago

Ksmiles123

Ksmiles123I hope that you have a pleasant holiday. If you are not feeling well, simplify your day so that you can enjoy the spirit of the day. What are you most grateful for today?

4 days ago

Ksmiles123

Ksmiles123

Hello! We all desire to enjoy Thanksgiving and the other holidays that follow. What are your greatest concerns? Many people think that some of us with chronic conditions are going overboard with precautions.  
We must stay strong and hold onto to our beliefs, our own safety plan.
I will not be indoors with unvaccinated people in close proximity. I choose to stay safe and well. I hope that we can encourage one another to communicate our needs to others who may not understand us. 

5 days ago

Kandy

Kandy

So happy to see a Bronchiectasis Awareness Day!!  I had been asked if there was a special day like Copd Awareness Day. 

6 days ago

Kandy

KandyWishing all who celebrate Thanksgiving Day hope you have a wonderful day with family and friends!!  Stay safe!!

6 days ago

Kandy

Kandyvoted on Coping with NTM/Bronchiectasis โ€“ Your Chronic Illness

Gave a thumbs up for a blog post!

6 days ago

Ksmiles123

Ksmiles123Holidays can bring on good stressors and bad stressors. The link below offers suggestions for relaxation. Relaxation is essential for our overall health, our lung health.https://www.webmd.com/balance/ss/slideshow-what-happens-when-relax

What Happens to Your Body When You Relax

Relaxation can benefit your mental and physical health. Learn more about how it affects your body and the best ways to unwind.

6 days ago

Ksmiles123

Ksmiles123

Hello! Are you prepared for Thanksgiving? Are you comfortable re: the corona virus precautions and the people you plan on spending time with on the holiday?

1 week ago

Cho Htun

Cho Htuncommented onThe Prevalence and Significance of Staphylococcus aureus in Patients with Nonโ€“Cystic Fibrosis Bronchiectasis โ€“ A Bronchiectasis and NTM Research Registry Study

 Thank you John. After stopping Bactrim, I could not eat for 2 weeks. Maybe the side effect of it. I became really concerned because I weighted only 102 and after medication, I went down to 100. I asked the doctor to prescribe appetite medication. I...

1 week ago

Ksmiles123

Ksmiles123answered the question still breathless but told OK

Elaine, You are most welcome! It is wise to believe that your energy may improve. My energy did improve over time after discontinuing the meds, being able to exercise, get out and about more. There is no set pattern of outcomes for patients. I wish …
Elaine F.L.laff4evr also answered the question Elaine F.L.and 1 other also answered the question

1 week ago

JohnT

JohnTcommented onThe Prevalence and Significance of Staphylococcus aureus in Patients with Nonโ€“Cystic Fibrosis Bronchiectasis โ€“ A Bronchiectasis and NTM Research Registry Study

 Hi Cho Htun,I think my Bactrim dosage was much lower than yours. I do not remember having any side effects from it. You may want to try taking probiotics before meals and take the antibiotics after you have digested your meals. Check with your...

1 week ago

JohnT

JohnTanswered the question Arikace

Hi Cicimac, I took Arikayce a couple years ago. I was also very concerned about the price. Christina is correct that Insmed offers an Arikares program. I don't know what the current offer is, but when I took the medicine, they were very helpful and I …
Ksmiles123cicimacChristinaH also answered the question Ksmiles123and 2 others also answered the question

1 week ago

Nikki

Nikki

I learned I have MAC through a CT Scan that I had done for a preventive CT Cardiac Score.  Is anyone else in the very early stages of NTM?  I am trying to prevent this from getting worse of course but wondering when and if treatment with antiobiotics is recommended in the very early stages.  

1 week ago

  • NewestOldestClick to View All Comments7 comment(s)
  • Ksmiles123You are most welcome! I didnโ€™t realize that you have been on the site for awhile- I do hope that you check in regularly now.  My lungs have been behaving over the past few years.  Yes, I am in Pittsburgh, PA. Wishing you a great Thanksgiving Holiday as well. Stay safe. We are here to support you on the journey. Katie :)6 days ago
  • melissa a nApologies for the confusion. I had read your profile and was referring to you as the one who has been here since the sites infancy making you the perfect choice of someone to follow I only registered today. I'm glad your lungs are doing well, may they continue to keep you strong and healthy.  Grateful for your support this Thanksgiving week, Katie. Thank you!6 days ago
  • Ksmiles123Melissa,
    You are most welcome! I hope that you can enjoy the Thanksgiving holiday. Please post any questions that you may have- knowledge is power. So nice to meet you!:)5 days ago
Ksmiles123

Ksmiles123Hello! Below is an article on the Covid booster shots from RTMagazine: https://rtmagazine.com/products-treatment/pharmaceuticals/us-pharmaceuticals/fda-expands-authorization-of-moderna-pfizer-boosters-to-all-americans-18/

FDA Expands Authorization of Moderna, Pfizer Boosters to All...

The FDA expanded emergency use for both the Moderna and Pfizer COVID-19 vaccine boosters for all individuals 18 years of age and older.

1 week ago

Ksmiles123

Ksmiles123answered the question Covid Vaccine - Life After

Rose, I agree! Plexi Glass isnโ€™t bullet proof- it may protect against sneezing, coughing directly coming at you face to face but the virus is airborne and may be circulating anyway. I donโ€™t need to go to a salon to get my nails done. I would not take …
RoseHIElaine F.L.Garnet777and 5 others also answered the question RoseHIand 7 others also answered the question

1 week ago

Ksmiles123

Ksmiles123

Hello! Do you understand the difference between probiotics and prebiotics? Both of these are very important for your gut health, your lung health. The article below reviews the difference between the two: https://www.mindbodygreen.com/articles/probiotics-prebiotics-and-synbiotics-whats-difference

1 week ago

Ksmiles123

Ksmiles123

Good nutrition contributes to better long term lung health. The article below reviews 15 foods which may assist you with nutritional planning. https://www.everydayhealth.com/photogallery/superfoods.aspx?slot=0&xid=nl_EHNLdiet_2021-11-18_25746046&utm_source=Newsletters&nl_key=nl_diet_nutrition&utm_content=2021-11-18&utm_campaign=Diet_and_Nutrition

1 week ago

Cho Htun

Cho Htuncommented onThe Prevalence and Significance of Staphylococcus aureus in Patients with Nonโ€“Cystic Fibrosis Bronchiectasis โ€“ A Bronchiectasis and NTM Research Registry Study

 Hi JohnT, I have MSSA and burkholderia cepacia in my culture. Doctor prescribed Bactrim DS 800 (2 in the morning and 2 at night), total 3200 mg per day. And after 3 days, I almost collapsed. So, the doctor said take 2 / per day. I finished 15 days on...

1 week ago

Ksmiles123

Ksmiles123Hello! Today is World COPD Day! Looking forward to more new treatments to be available in the near future.
https://goldcopd.org/wp-content/uploads/2021/10/World-COPD-Day-Infographic.pdf

1 week 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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