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My Story! Feel free to share yours!!

Hi AAFA community,

I'm new to the board, but reading some of the post, I can't wait to hear more from the group and hopefully share some succefull stories/tips!

 

Here is my asthma story and what I'm doing to handle this little bugger!

Earlier this year, I was in a very dusty environment at work which I believe has triggered my adult on set asthma! As a child I had a short period of asthma which I out grew. I've had mild allergies most of my life to the main culprits (dust,pollen,etc), but nothing that would required medication, just some conscious effort in avoiding those triggers! My symptoms are chest tightness and SOB and due to my past history with asthma and allergies my doctors believe it's asthma. I've been working with my PCP and pulmonologist to get a handle on this tricky disease. Spiro/EKG/XRays, all normal which is great.

 

i was given a ProAir rescue inhaler, which I used at the beginning quite a bit, but have completely stopped its use after being put on QVAR 80mcg. I started to feel some minor regression on its effects to I started to use a generic Singulair prescription. I delayed the use of the singulair a bit due to the crazy possible side effects; however, I have felt none (just vivid dreams), but I've felt a great impact after being on this medication for a month. My PEF have even gone up from 525s to 600-650s!!i consider this a success! This combination of medications has helped but I still have minor symptoms. They don't quite affect my day to day, but I'm always conscious of the tightness. 

Ive incorporated other changes: Hepa filters in my office and home. Trying to be stick to an anti inflammatory diet. Taking multi vitamins, going all organic and natural products (been reading about toxins, and additions , YIKES!!!) I know these are all supplementary to medication, but they can only help the life style of my family and I!

 

Im a young male in my 30s with excellent health (outside of the asthma). Since I've always been active, what I've tried to do is maintaing a running schedule. I try to run at least 5miles a week with some light weight lifting. The work out kinda suck, but I feel like a million dollars after! It's like my sinus and chest open up!

 

well enough about me as I could keep talking. Please share some of your success stories and tips on handling this condition!

 

Stay healthy my friends!!!

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  • K8sMom2002

    Hi, @RedCoog – thanks for sharing! That's fabulous that you are able to be active and keep to your training/running schedule! I do find that when I exercise, if I'm able to exercise, I do better.

    Your story sounds remarkably similar to mine. I'd had many issues with "seasonal" allergies and sinusitis and throat infections and bronchitis over the years, but I didn't officially get diagnosed with asthma until I was 30. It was a weird feeling to be told that THIS was definitely asthma. 

    My triggers are cigarette smoke, perfumes/fragrances, grasses and weeds (especially hay!) and I've just now figured out that are really influencing my asthma flares. Any sort of upper respiratory infection can cause a huge flare, so I try to steer clear of sick folks and I am a big believer in flu shots and pneumonia shots. Here's a blog post about .

  • Pljohns

    Welcome to the board and thanks for sharing!  Congrats on being able to stay active and on your efforts to avoid irritants/allergies.  You will find a WONDERFUL group of people here with a variety of suggestion/ideas but more than anything, you will find an amazing support group.

    I'm also an adult onset asthma-at age 45 after a bout with pneumonia that we though was gone but wasn't and ended up in both lungs, followed by H1N1 flu when it was first out and that left a lot of people with respiratory issues and then the cherry on top was whooping cough (would have loved to have known that childhood immunizations need adult boosters!).  I've tried literally every asthma med on the market and had reactions to them all-2 with anaphylactic reactions that almost killed me-so I us a COPD med off label.  My asthma is non-allergic-I've been tested for everything and am not allergic to anything so, with this type of asthma, there is no medication to control it and not a lot of options. Inhalers worked for a while until they started causing attacks-albuterol would stop and attack and the inhaler would start another immediately.  We tried every form of inhaler and all we figured out was the propellant in the inhalers is what my lungs don't like-result-I have to use nebulizers for everything except inhaled steroids and I can use inhaler steroids-I use Qvar also.  I am current with pneumonia/pregnant 13 and then the 5 year booster for pneumonia and get 2 flu shots a year-6months apart.  Pulmo flatly said that flu would land me the hospital and most likely ICU.

    My triggers are whatever-in 6 years, all we've been able to find for sure is cold air-either AC or wind, reps infections, the weather is a big one and strong smells but rarely the same one (sometimes I can pump gas, others no way).  It keeps life interesting but that's OK.  I'm currently in between pulmo'-mine left and went into teaching and my current one is a quack-won't talk to me about anything but biological and wont' tell me how to manage this, but agrees with any suggestion I have-so I end up managing it myself.  I got accepted into a severe asthma clinic at UAB and have an appointment in Sept. that I'm looking forward to. 

    Welcome again!

  • RedCoog

    Guys,

    Thank you for sharing your stories!! 

    PLJohns, I hope the UAB clinic has an answer for you. It this is a pain at my level, I can only imagine your situation! This disease sure is a fickle (insert bad word that starts with a B here lol). 

    I look forward to learning from the group and hopefully some of my input can help someone out there!

  • Kathy P

    Welcome @RedCoog and thanks for sharing your story! Like you, I had issues as a kid, but it was never diagnosed and mostly dismissed because I didn't test positive on allergy testing. I was prescribed my first rescue inhaler after a really bad bout of bronchitis triggered by pollen and mold on a trip to Alaska. I was about 30. I've had my ups and downs since.

    That's great that you are maintaining a running schedule. I recently starting biking and learned that my asthma was not as well controlled as I thought it was! I've been working with my doc over the past couple months to find a more effective treatment plan so I can bike at the level I want to. My husband convinced me that a would be a great idea!  I've had one bad flare since I started training at the end of April. And my summer allergies are bad at the moment.

    I'm finding my mantra is "do what you can today" – if it's better than yesterday, great, if not just do what you can. But don't let asthma completely stop you. Sure, some days I can't do what I want, but it makes me appreciate the days I can all the more.

  • Melanie Carver

    Hi @RedCoog, thank you for sharing part of your asthma story with us. 

    I was diagnosed with asthma at age 8 (battled pneumonia) and I'm now X8 years old.  My asthma has improved over the years – it prefers certain climates. Getting my allergies under control has helped a lot. As an adult, I've been mostly "intermittent asthma"; but illness is my biggest trigger. Earlier this year I caught a respiratory bug that took me months to get rid of.  So I'm no longer "intermittent" because of that episode (prednisone, ER visits, etc.).

    I'm waiting for flu shots to arrive and will be one of the first in line with the whole family. Anything that helps reduce the chance of catching a respiratory illness, is a part of my asthma action plan. (E.g. vaccinations, frequent hand washing, avoiding hot spots of illness, etc.)  I can't afford to have another bad season. I really wish people would stay home when they are sick – and I realize part of the problem is that many people can't afford to (maybe their employer doesn't offer sick leave, etc.). 

    Anyway, I wanted to say hi and introduce myself. Thanks for joining our community!

  • Jen

    Thanks for sharing your story!  My dh has reduced lung capacity due to lung cancer surgery nearly 5 years ago.  Since his surgery, he has picked up running and, more recently, cycling.  He has learned to listen to his body and not push himself.  It is nice when you are able to stay active.

  • RedCoog

    So and update and maybe some input from you guys!

    today I had a follow up with my Pulmo. I told him about my ongoing tightness. We talked about making a change from my QVAR to Simbocort. As I do with all medication I will research it to make sure the reviewers and side effects are worth the risk. My Pulmo said that I should be ok since I have shown no side effects to the QVAR, Singular, or Proair. Any of you guys have tried Simbocort???

    He also prescribed me a new rescue inhaler; one that would make me a bit less jumpy. I'll post the name once I get it.

    during the visit, we did a spiro. All my numbers improved so I'm thinking the medication I'm on of helping the inflammation. What was cool to see, was that my hand held PEF meter matched almost perfectly to theirs!

    We decided to do a few additional tests. Did a set of X-rays (he said no need for CT scans unless something pops up) and some blood work to continue to rule out other conditions and focus down on the asthma treatment!

    this was the best meeting I had with him. I had to stop him a few time, to discuss my concerns. But once we got to talk about them, he gave me solid feedback! 

  • Pljohns

    Sounds like a solid, really good appointment! The new rescue inhaler will more than likely be xopenex and yes, it is better than albuterol on the jitters.

    Symbacort has helped a lot of people as it is a combo drug-a long acting bronchial dialator and an inhaled steroid combined.  My wonderful crazy body didn't like it one bit-that's one of the ones I had an anaphalatic reaction to and almost died BUT THAT IS JUST ME. It is a really good med that has helped a lot of people and being able to get both meds combined instead of two separate ones is a really good thing.  

    Glad you had a good appointment and hopefully the new meds will help!  It sounds like you're on the right track.

  • K8sMom2002

    Wow, what a great appointment, Red Coog! It sounds like you were a great advocate for yourself and you were ready for the appointment — and your doctor was great to be so responsive!

    My mom was on Symbicort and it worked well for her — different meds work for different people, and your doctor can help you walk through all your options. It does sound like your inflammation is getting better, and what a great bonus to find out that your meter matched theirs!  

  • RedCoog

    Pljohns & K8smom2002, 

    thanks for the input on the Simbocort!

    PLJohn, you have your UAB appointment soon right??? Keep us posted; really hope they get you some answers and possible solutions!  

  • RedCoog

    So I been a bit MIA!

    so the rescue inhaler I got prescribed now is ipatroim Bromide. I have yet to pick it up as I've been feeling much better with the Symbicort. I felt a big difference even after a few hrs from the first dose!

    im still accessing the effect. It feels like a caught a small upper respiratory cold from my baby girl, but now on day 3 I feel better! 

    I wish I would have used one of these combination medication sooner as I feel th best I have in months! I hope the improvement cotinues as I'm still not back at 100%.

    by the way, does any one have any input on this new rescue inhaler? Doc said it would make me less jumpy, but that it was also not as strong as the proair!

     

    hope you guys are breathing well!

  • Pljohns

    Hey REDCOOG-so glad you are feeling better!  symbacort is a really good product-just wasn't for me but am so glad it's working for you and you are feeling better.

    As for the new inhaler,yes, I'e used it and still do (in the nebulizer form).  It's a good med and doesn't have any jitters for me.  I typically add it to albuterol to help with congestion.  it's really good at loosening up junk in your chest.

    My UAB appointment is the 14th of Sept so not too much longer and I hope they have some answers too

  • K8sMom2002

    Red Coog, SO glad you're feeling better! My mom was exactly like that after she was put on a long acting controller medication. She'd been so worried about starting another medication, but it really helped her.

    Each person, along with their doc, has to weigh out the pros and cons of a treatment — and it's so nice when you see improvement, isn't it!

    Lynn, I'm saying big prayers and sending good your way that the September appointment will be a great one! Can't believe it's almost September!

  • RedCoog

    So after a week of waiting for my last result, I got that call! All your blood work and X-Rays are normal! 

    This is a huge blessing, as asthma sucks, but there are far worst prognosis out there!

    Yet, I was hoping something that is curable (lol) would have been found!

    Hope you guys are breathing well!

  • K8sMom2002

    I can totally understand feeling the relief that is mixed in with frustration — "why couldn't it have been something easily fixable? And thank goodness it's not any worse!"

    We get that here — we really, really get that here. But we will celebrate that your x-rays and labs are clear, and we'll encourage you on your path to managing asthma. It may not be easy or predictable, but, take it from me, asthma sure is more manageable if you have good friends along for the ride.

  • RedCoog

    So update from my follow up today with my PCP,

    i really trust my PCP as I have been seeing him since my teens, and he sees my mother and sister and has been great to us!

    during my follow up: he listened to my lungs: perfectly normal! Took my O2, 99%! Did a spiro: all my values continue to improve and really close to my predicted 100% values! PEF is actually in the +110%! Looked at my latest X-rays from Aug: all clear! On paper I'm great! Yet I still have this nagging tightness, VERY minor SOB during excerssion, throats clearing, and minor accesory muscle soreness.

    On the muscle soreness, he has no clue and kinda gave me some bs opinions lol. Kinda puzzles about it really!

    As I have yet to visit and ENT or Allergist, I asked if these would to good to include in my Doctor rotation to get this figured out. He recommended a Allergist / Immunologist, that he said would be able to tackle mu issues from a more overall perspective. I thought it was a good recommendations. After reviewing the MDs credentials, she looks pretty impressive, so I'm quite existed to visit her; I made an appointment for next week!

    they will do a CT scan of my sinus and throat, and said that there was no need for a chest CT scan due to the clear XRays.

    i feel very minor improvements over time, but it would be nice to get a good idea if I should expect further improvement or just learn to deal with this new disease! I'm optimistic and hope for further improvement, and if this is as good as it gets, I will make the most out of it and live a full life!

    hope you guys are breathing well! Stay healthy guys!

     

  • Jen

    That's great that you were able to get an appointment for next week.  Do you have a list of questions to ask the new doctor?

  • RedCoog

    I had my appointment yesterday! It went well!

    we had really good and detailed conversations about my situation, RX, medications, etc! She agrees with my doctors and how I'm treating this thing!

    vitals and spiro looked really good! She said that she liked the combination of medications, but did recommend adding Flonase; said it may help with my allergies.

    due to my history of allergies we did some blood work for food and mold allergies. I told her outside of shell fish, I'm not aware of anything else that bothers me but we will see!

    another thing she had me do was a a stomach bacteria check. I told her from time to time I have some heart burn so she wants to see if I have any GERD or silent reflux potential.

    i feel pretty stable and continue to improve (but at a snail pace lol), so I'm optimistic I can get this thing figured out!

    ive also been reading a bunch about natural alternative so I'm thinking of starting a turmeric supplement to my anti inflammatory diet!

  • K8sMom2002

    Wow, it DOES sound like a great appointment! I'm so glad that you had such a thorough doc — I wouldn't have even thought about the stomach bacteria check … 

     

    And my favorite way to supplement turmeric is to eat it. Lots of mustard, lots of yellow rice, lots of turmeric in my foods. I'm glad it's supposed to be good for you because I like it very much.

  • Kathy P

    Sounds like a good appointment!I do turmeric as whole food too. I can get it as fresh rhizomes. I make a "tonic" of lemon, ginger and turmeric. I need to make up some more. I keep it as ice cubes and mix with sparkling water.

  • RedCoog

    Hey guys,

    just wanted to send an update!

    im feeling better, tightness, and SOB are way down. Still not 100%, but I'm still hopeful we can get there or further improve!

    im still in the same medication combo (Symbicort, singulair, and Flonase). I'm also taking a daily vitamins C and Turmeric suppliment! Still trying to watch my diet, and I've added a daily green tonic (ginger, celery, kale, lemons, honey, apples, and Turmeric). Air purifiers everywhere! Except using and much as possible, and watching out for sick ppl as much as possible!

    i had a follow up this past week wth my pulmo. Everything looks and sounds great and he is convinced this is asthma! Since day one I've asked if a CT scan would show anything an X-ray (both clear!) would have missed, and he insists that my rx and progress do not call for one, but I convinced him to run one on me! Will have it this week! If it comes up clear (fingers crossed!) I'll finally agree with his diagnosis and do my best to treat can care myself to this condition!

    this will be my first fall with this condition to I hope it was not as bad as some part of the Summer! The high dust and dander numbers seam to be a trigger of my rx!

    hope you guys are breathing well and easy!

  • K8sMom2002

    Hugs … I know how it is to be faced with a diagnosis that comes out of nowhere. Glad your doc is working with you and that you're feeling better!

    Got a link to that tonic recipe? Except for the apples (my daughter is allergic to apples), that sounds tasty!

    As for fall, have you had your flu and pneumonia shots yet? That's a very important part of my plan. Here's a — but it also applies to adults as well.

  • RedCoog

    Hi @K8sMom2002,

    for the drink I was just googling lung cleaning alternatives and came a cross this option! The way I do it is 1-2 celery sticks, 1 apple, a hand full of kale or spinach, I add ginger to taste (mine had been pretty spicy lately!), add honey to taste, and a whole lemon(I just peel some of the skin off and take out the seeds)! Oh and I add Turmeric.

     

    i did have my flue shot about a month ago, but not pneumonia! Yikes, hope I don't get that!! 

    Thanks for the tips!

  • K8sMom2002

    Definitely talk to your doc about that pneumonia shot. I thought it was just for older folks, but my doc wanted me to get it after my last bout of pneumonia. Hopefully that WILL be my last bout of pneumonia.

    Thanks for the tips on the recipe … I'll have to leave out the celery, too (I'm allergic to celery), so it's probably not going to taste a whole lot like yours. But maybe I could swap out pineapple and leave out the honey. I'll keep you posted!