Severe Asthma; only getting worse

Posted by rosiedawson @rosiedawson, Oct 26, 2023

I had asthma since I was a baby and had my first asthma attack at age 3. I used to take a daily inhaler 2 puffs twice a day, as well as an emergency inhaler when needed. In early 2018 when I was 15, I stopped taking my daily inhaler and only my emergency one as needed. By the same time next year, I had to yawn to breathe and verbally make a sound to catch a full breath. From 2019-2020 I was in and out of hospitals, took countless pulmonary tests, and had an endoscopy which showed nothing, besides the IBS I've always had. After these hospital visits and a visit to a speech/vocal therapist to help with the yawning and breath training, I was perscribed a nebulizer which I now use when I'm sick and wheezing. In 2021, I started smoking weed and vaping and it didn't get worse, I feel like I've been at rock bottom since 2020 and the only worse option is to stop breathing completely. Currently, I don't really smoke often anymore (at one point it was everyday) and I've been on-and-off vaping (trying to quit), and it hasn't gotten better. I don't know what to do, it gets extremely disheartening to think about the fact that I struggle with a function so basic as breathing and I hate having my mouth agape, stimulating a yawn in class trying to catch a breath; it's ruining my self esteem and my happiness.

In all, is there anything that can be causing this that I haven't thought of? Lungs, my asthma and my stomach (IBS & endoscopy) have all been checked to no avail. On paper, I should be able to breath and no one can tell me why I can't.

Interested in more discussions like this? Go to the Asthma & Allergy Support Group.

Sue, Volunteer Mentor | @sueinmn | Oct 27, 2023

@rosiedawson Welcome to Mayo Connect where patients can share their medical issues and support one another. I read your post several times so I could think about which question we can address first.

As someone who has experienced shortness of breath I really identify with your statement "...it gets extremely disheartening to think about the fact that I struggle with a function so basic as breathing and I hate having my mouth agape..." This is sometimes called "air hunger" and it is much more common than you would think. In fact, we have a whole discussion group here on Connect that discusses this topic and has some really great suggestions.

But first, let's talk about some underlying basics. It sounds to me like you are a college student, is that right? If so, what does your eating, exercise and sleeping schedule look like?
Are you currently managing your asthma with both a daily long-acting medication to control it and a rescue inhaler for sudden attacks?
How are you managing your IBS?
Obviously, from your comments, you know that smoking and vaping are particularly bad for you, given the ailments you live with. Have you enlisted help to stop them?

Wow, that's quite a list, which thing do you think you want to tackle first? We're here to listen and try to help you gat on a more healthy track so you can enjoy your life.
Sue

ecmoandrrt | @ecmoandrrt | Oct 27, 2023

Hi. My chops: Registered Respiratory Therapist, ECMO Specialist perfusion/transports/ NICU/PICU/CCU/Adult ICU specialist. 35 years experience. 67 years old. And have been intubated.
And I have Asthma since birth. Environmental. I ALWAYS have an MDI with me. My drug of choice is Albuterol.
So my questions or suggestions as a clinician and I will be honest:
1. Do you have a Pulmonologist?
2. Don't smoke. Vaping is just as bad if its tobacco. I could never smoke weed because I'd have a lung spasm and need my MDI NOW! I use gummies.
3. What drug is your prophylactic(ex. Breo)? Why were you taking a Bronchodilator(I'm assuming) BID(twice a day) when that is a rescue drug? When you weren't having Asthma attacks' or SOB(shortness of breath)? Because that's crazy. Who told you to do that? Are you on prednisone/steroid(PRN or as needed) when your Asthma flares up?
4. They found nothing on your PFT?
5. Were you tested for Allergic Asthma?
6. I have environmental Asthma and right now if I had a PFT? It would show some lung damage and also right now clear lungs. I could look at those results and say ok not bad. BUT I have ENVIRONMENTAL Asthma which can kill me quite easily. PFTs don't always get it right!!!!!!
7. Have you had your heart checked? I'm serious.
8. Why the mouth agape? If you have SOB I'm surprised no one taught you pursed lip breathing.
9. Do you own a pulse oximeter? I do. As you age like me your O2 saturation will fall because your old Lol. If i'm above 95% I'm happy. 80-85% I'm in ER. If you're now in your twenties a normal is 96-100% sats. Under 90% still not horrible yet and you should be taking bronchodilators. Stays under 90% with MDIs etc.? Go to ER just in case.
10. Did you have Asthma or Asthma like attacks in hospital and were you weezing and did a person like me give you treatments? Did they do a blood gas/ABG? (usually stick you in your right radial by your wrist and it hurts)?
Those results would be interesting. XRays?

I know I'm asking lots of questions. I care.

lenchiksf | @lenchiksf | Oct 28, 2023

Pulm md consult?
CT of lungs ?
For asthma flare - md would rx burst of steroids (dexa and/or prednisone) 5-10 days and restart your maintenance inhalers which usually 2 puffs x 2 times per day - you dont want to stop that one!
Mdi on a go, nebulizer at home if cant breathe. There are times, i just sit on a sofa all day waiting for all meds to start working .
Good luck