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Anyone have Athsma & Bronchiectasis?
Asthma & Allergy | Last Active: 5 hours ago | Replies (47)Comment receiving replies
Lynn,
I have had asthma since birth and was diagnosed with Bronchiectasis in 2019. I have to order my asthmas inhaler from Canada now that they no longer make it in America anymore. I use Flovent 240 and in Canada it is 250. They measure it differently than the USA. It has worked for me since it came out in 1994 and then it was no longer manufactured in the States because of cost.
It becomes difficult to tell if it is asthma, a new NTM bacteria, or just a flare from Bronchiectasis. I constantly am taking sputum samples to my doctor. In the beginning I could go for a year without a new infection and pretty much at this point, I have a new infection every 4 months. I garden and now I have to wear a N95 mask at all times when doing anything in the yard as well as gloves. You can get infections working in the yard, dusting your house or simply taking a shower. You make changes with time. I vacuum and dust with an N95 on. I take a shower with the shower door open and the window in the bathroom open even in 12 degree temps. The more air that I can get in the bathroom the less chance I have of picking up Stepatromonius Malphilia from the water supply. We empty the hot water tank every 6 months and refill and we change the shower head filters on the shower every 3 months. We keep the humidity in the house between 30 and 50. We also have a filter on our frig water supply. At this point, I have not given up gardening but it may come to that. I don't want to give the gardening up because I have a sloped lot and gives me a real workout on the landscaping. I t helps me breathe deeply.
I see an Infectious Disease Dr every 2 months. I can take him as many sputum samples as I feel the need to. Most of the results are back in 8 days but some take 6 weeks. He always wants 2 samples when I bring them in. The labs will tell you which bacteria is present and what drugs will get rid of it. My Infectious Disease Dr works with a Pulmonologist. I see the Pulmonologist every 6 months and get medications renewed for asthma and Bronchiectasis. Infectious Disease can prescribe too. They talk to each other when I am not doing well.
Exercise as much as you can. Drink water. I have been on an AirWay clearance machine for the last 6 years 2x per day. Pulmonologist ordered and got the insurance to approve. Keeps me alive and breathing much better than if I did not have the machine. I also asked to be put on 7% saline solution 2x per day to inhale. Boy does this help loosen mucus. I do once per day if I am clear of bacteria and breathing well. When I am outside doing yard work, I do it 2x that day.
Travel is hard with the airway clearance machine, but I travel anyway. Europe is odd about that machine but I just know that they are going to be suspicious of the hoses and vest. It will be bomb tested every time you travel even in the states. When in the states or out of the country I travel with it as my carry on with all of my meds in the top section. It is harder but I love to travel so I deal with it.
You will learn when your breathing is bad to determine; is this an off day or is it something I need to attend to. Pay attention to your body and you will know.
I hate this but I love my life more! It is the hand that I have been dealt so I do the best each day that I can. Somedays, it is more than others. Some days are fantastic and these days pull me thru the bad ones. Wishing you the best. Hope that this helps.
Replies to "Lynn, I have had asthma since birth and was diagnosed with Bronchiectasis in 2019. I have..."
@1fancydancear @lreid51 I have been an asthmatic since birth as well. Only a year ago I was diagnosed with bronchiectasis though I know I had it 3 years prior. It just took a new pulmonologist and the correct labs and imaging to properly diagnose. I also use the Baxter The Vest APX, aerobika, nebulizer with ipratropium bromide 0.5 mg/albuterol sulfate 3mg (3-4x daily) and twice a day I follow it with sodium chloride 7%. I also have pseudomonas aeruginosa (PA) and aspergillus fumigatus (AF) amongst a couple of others. I have been corticosteroid/prednisone to steroid inhaler dependent since childhood I have now switched from Advair diskus to Symbicort (with mask and spacer) because recently Symbicort was approved for use up to 16x per day and has an element of what is called SMART approach which has both maintenance and immediate relief components-budesonide (reduces inflammation) and formoterol (fast-acting bronchodilator) (NIH/PubMed). I never go anywhere without a portable nebulizer which can fit in a small purse. I take other natural remedies and approaches to help such as using organic mullein extract (alcohol free) (Nutra Harmony)...I use it in my coffee or hot tea every day. I have begun using more pure essential oils-diluted (which I have to be careful that the scent doesn't exacerbate). I use air purifiers, drink lots of fluids, limit mucus-producing foods and drinks, & try to stick to an anti-inflammatory diet (not always successful here). For the past year, I have been doing detoxes which specifically related to not only parasites but mold, fungus, etc. I have really liked the https://rogershood.com (parify kit) and they make a nut-free version for those of us who have allergies to nuts. It is all natural and mild, but it has helped me tremendously with the PA & AF which are both so hard to eliminate once they have made their home in your lungs. I had to give up gardening 100%, which was one of the most difficult things for me as I was diagnosed with RA in 2019 and since 2020 I have undergone more than 27 surgeries. Taking Biologics for asthma this past 9 years has caused many known and unknown health problems for me....one of which RA (Duplixent) (see NIH/PubMed) & since I've taken so many of these (Xolair, Nucala, Tezspire, Dupixent, Fasenra), my asthma was awesome but the altering of my immune system allowed the breeding ground to grow in my lungs....etc. I am currently trying to stay off all of immune suppressants except for the steroid inhaler and the occasional steroid pack (which I also try to avoid as I have secondary adrenal insufficiency). So RA inhibited my athleticism/mobility in sports & other activities...this is when I took up gardening which became my new obsession. Well, now I've been told absolutely no to gardening of any kind that requires soil (of any kind). Thinking of hydroponics but need to do more research about molds, etc. I do the same thing when showering as one of you stated with leaving the door open as not not breathe in any molds, have filters. Still looking for an entire new water filtration system. I have begun with soaking my organic veggies for 15 minutes to eliminate not only parasites but fungus, etc. As we all are aware, stress-reduction is a must. Living life on pause or sloth-mode is not suited to my personality or past, so this is difficult for me. I have begun using tuning forks (weighted and unweighted) though i am a novice. I had to do a lot of research beforehand as I didn't want to invite anything hokey in that I did not desire. I listen to meditation and as a Christian, I chose John Eldredge "Wild at Heart" Pause App. Also music I listen to while I'm working from home and trying to concentrate and bring some peace to this high strung soul is William Augusto "Soaking in His Presence" which is instrumental. Well, there is so much more to living this new life, isn't there?! Have a great day.
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@1fancydancear From the spring till the fall I have to watch the air quality. I live in Vancouver BC and we travel to Revelstoke BC in central BC to visit my daughter's family twice a year. There are a lot of forest fires during this time in BC. You don't need to be near them to have a problem because the smoke drifts where ever it pleases. So from Vancouver to my daughters town there are days at a time I am stuck indoors from smock.