Discussions

My life with bronchiectasis.

I am 30 years old and was diagnosed with bronchiectasis at the age of 12 after having a CT scan and bronchoscopy. Before that time, the doctors thought it was asthma but became suspicious when I did not show any significant improvement on various asthma medications. As a got older i started to smoke and i have never felt worse.

As a 2-year-old I got a few infections, including RS virus and when I was 4 I got meningitis.

At first the doctors thought I had asthma since the spirometry showed obstructive signs. I had to test all asthma medications that were available without them having any major impact on lung function.

Allergy tests were also taken steadily which were negative. There was also an attempt to take a sweat test, which I only managed when I got older, this test came back negative.

Only when I was 12 years old did I have a CT scan and bronchoscopy which revealed that I had bronchiectasis.

My lung function has always been at LLN and from 18 to 26 I peaked with an FEV1 of 3.6 L and an FVC of 4.7 L.

I have always hated the lung disease and everything that came with it. As a child, it felt like 10,000 visits to the pulmonologist and far too many hours in the waiting room. Worst of all, it was psychological since I had to use a nebulizer device in front of all the children at school, I had a high mucus production which I used a lot of energy to hide. when I got older I stopped taking medicine as I never felt any difference with it, it was certainly not something that was to my mother's liking. I was very active even though I didn't take part in any sports activities, and perhaps most of all I was a mischievous boy. When I got older and started high school, there was increased pressure around drug use, which I unfortunately became a part of. I have smoked weed regularly with a particular escalation from when I was 26-30 years old.

Today I have stopped smoking, perhaps most of all because I don't feel well anymore. It doesn't take much force before I get a wheezing breath, maybe just above the force you use during exercise. This has proven to be a challenge when it comes to bringing up mucus, which drives me nuts. Strangely enough, it seems as if I have a low mucus production today, but I still feel that I am congested because I have mucus in my lungs.

Now there are 3 periods in particular during the day that are bad, when I get up, when I eat and when I go to bed, during these periods I feel very congested and try in vain to bring up mucus. I've started taking way too much ventolin to make me feel a bit better (I think). I struggle with the fact that I can't speak without getting a sore throat, I can't laugh without my throat also getting sore and that I feel a tightness in my lungs. This has put a stop to my life, I feel like I can't attend anything with friends because I'm afraid of feeling congested in my lungs when I'm not at home. oh boy did i dream of a time machine where i could go back and give myself a real slap in the face.

When I was 26 I felt a slight change in my breathing and went to take a test, there I got a fev1 of 3.6 L and a fvc of 4.7 L. It was completely unchanged from previous tests in 2011 (18 y.o) which I thought was very strange. The doctor came up with a bunch of prophecies about how my life will be if I continue to smoke, Some of them include that I would struggle with my throat, my psyche and that there was a good possibility that I would die before I turn 50 because I will eventually have a sudden development in the lower lobes of the lungs and maybe more.

recently I have been to 2 different pulmonologists, one for a short visit and the other for 3 weeks.

I have increased lung capacity by 12% both in fev1(4,06L) and fvc(5,28L) and after a bunch of tests it was declared that there was no objective reason for my symptoms. It has been difficult for me to understand as I have never felt so congested before, I have also tried to tell what the previous doctor told me but no one seem to agree with him. The previous doctor's prophecies are true to the letter, but here I sit with what seems like a miracle of some lungs that "lie" to the doctors. Now i dont know what to do anymore..

I have read several comments where the writer mentions the Big 3. What are they? My doctor only prescribes Levofloxacin and a steriod when I have an infection.

Good Morning. I am looking for any personal information members are willing to share. My mother just started using Arikayce and has been coughing like crazy and has extreme fatigue. If anyone is using this med, has a family member using it or is a caregiver for someone that is, can you please tell me what has been successful to help ease the cough or fatigue? Thank you in advance. I hope everyone is well today!

Hi all. I had some community members reach out to me and let me know that they were unable to view the WBD event. We have now posted the event to our website (under WBD education) and to YouTube. Feel free to watch by clicking on the link below and let us know what you think.

https://www.bronchiectasisandntminitiative.org/Bro...

Are you staying well hydrated? The link below discusses the importance of staying well hydrated.:https://diet.mayoclinic.org/us/blog/2022/how-to-stay-hydrated-over-the-summer/

Are you checking out the air quality in your area throughout the summer months? https://www.airnow.gov

Are you traveling internationally in the near future? The link below discusses travel medical insurance : https://www.nerdwallet.com/article/travel/travel-medical-insurance-emergency-coverage-travel-internationally#travel-insurance-vs-travel-medical-insurance-1111609185

I'm on my third attempt at taking the big 3 medications. I have decided that I will no longer take them. The side effects are just too much for my body. Since March, I have been sick more days than not (from the medications). Has anyone found themselves in my shoes? If so, what was your plan B? Thanks.

Hi everyone,
I am having PFT MTC and Bronchoscope next week, I just saw the Bronchscope on the orders.
Now I’m scared from googling bronchoscope. Is it very frightening and uncomfortable while having the procedure or after?

I have been on z-pak, then, doxycycline, then amoxiclav in the past four weeks. Wonder why bronchoscope when it may be dangerous

Thank you

Have you ever experienced a hypersensitivity or allergic reaction to a supplement. The blog article below discusses possible reactions from some supplements:https://www.copdfoundation.org/COPD360social/Community/COPD-Digest/Article/1853/Are-your-supplements-making-you-sneeze-and-wheeze.aspx

Are you able to get some exercise on a regular basis? The article below offers some good tips on an exercise plan: https://www.bronchiectasisandntminitiative.org/Learn-More/Learn-More/Exercise

Hi again!

Does anyone have information or links to share on joining singing for lung health groups?

Thank yo

Have you ever taken a chair yoga class? Would you like to share your experience?

When collaging a masterpiece what type of lung medium or glue do you recommend ? Elmers says non toxic and all the books on collage say to use acrylic gel medium. Any advise?

Are you taking dietary supplements? The article below reviews the basics on supplements. https://www.fda.gov/consumers/consumer-updates/fda-101-dietary-supplements

Do you know how to differentiate between allergies, Covid and other respiratory issues? The link below provides some helpful information on the subject:https://www.cnet.com/health/medical/how-to-know-if-its-allergies-covid-or-something-else/

Hi. I can't seem to find much information on M-Xenopi. Can anyone direct me toward a good resource for it? Thanks.

Q. Have you had a lung wedge resection?
A: Yes

Q. Where did you have the surgery done?
A: Saints Mary & Elizabeth Hospital in Louisville, Kentucky.

Part of the middle right lobe was removed in April 1975.

I think a sponge was left in there because I've been thirsty ever since.

A few weeks ago I slightly injured my upper ribs. No big deal (except coughing, sneezing, ouch!) and I knew it was going to go away.

My doctor ordered x-rays as a precaution and although my ribs were fine, the radiologist noted the presence of Bronchiectasis in the lower lobe of both lungs.

Going back a year or so, the motor in my ResMed CPAP machine began making noise and I wasn't going to spend hundreds of dollars on a new one (of, course, no one is willing to fix it). So I took apart my old machine and found that it used the same motor. I swapped them and problem solved.

Now, here's the thing the motor in my current machine had a soft foam thing glued to the top of it, presumably to help keep it quiet, and part of it was missing. I looked around and could not find any pieces of it. So I checked the old machine and it didn't have the foam, although it did have glue residue.

I can only conclude that the foam has disintegrated and I've been breathing it in and I now have an incurable lung disease. Is there a connection between the disintegrating foam and delveloping Bronchiectasis?

Has anyone else had this suspicion, or seen it reported anywhere?

Hi, I got diagnosed with bronchiectasis in December after having problems with my breathing / coughing for years. I take 1 inhaler a day with a pill at night and complete airway clearances once a day. I’m 26 and do regular exercise biking 30 mins a day and completing 10k steps as well as occasionally running. I did play football etc but have had to stop due to breathing difficulty. My peak flow was originally at 500-550, but now is at 650-700. However at times I still find it hard to breathe when relaxing etc and struggle to breathe automatically at times. Is this normal? After reading many articles etc I’m very worried / anxious about my bronchiectasis getting worse as I get older if it will affect work, my social life and relationships. Does bronchiectasis always get worse as you get older and is there anyway around it? Many thanks

Just learned that I have tested positive for MAC again. I went through antibiotic treatment for 11 months in 2018. I have felt good until I had COVID in July of 2022. During COVID I developed a cough. Now MAC . My question for anyone who was treated for MAC just to have it come back. What was your treatment the second time?

I orginally had MAC in 2008, was treated with azithromycin, refampin, and ethambutol. Cleared in 2010 by the ID doc to stop meds. Ten years later, I'm back with another MAC. He put me on Azithromycin and Ethambutol for life. Said I was too prone to catching something again. Recently I had to stop the Ethambutol because of my worsening eyes. I am wondering if anyone is in a similar situation and what drugs are you taking. I need to find a replacement for the Ethambutol. It cannot be Refampin due a reaction to another drug I am on for migraines.

The link below offers suggestions for better cleaning recipes which are less irritating to our respiratory system https://www.lung.org/getmedia/3030b2d9-02f0-4be4-ab86-d6bd86f88b88/ALA-Safe-cleaning-products-MHE-program-August-2022.pdf

Have you had a sleep apnea test at home or in a hospital setting recently?

I have been trying unsuccessfully for months to arrange a way for Medicare Part B to pay for the 7% sodium chloride in 4ml vials that I use twice daily through a prescribed nebulizer to treat Bronchiectasis. I have consulted with my pulmonologist, pharmacist, Medicare directly and even a respiratory specialty hospital. Everyone says that this should be covered but has not been able to provide specific information to make it happen. Can anyone help?