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Asthma woes

Hi everyone, my name is Kelsey and this is my first post here. I’m 25 and have had asthma since I was little, but it has gotten increasingly worse in my 20s. I was in the hospital for 5 days last week and have now been out for a week but am still on the struggle bus. This has been my worst flare ever and I’m just feeling quite discouraged. I got RSV which was what led to me having to be in the hospital on high flow. I’ve been home now and was doing a lot better but my peak flows were trending down again and my left lung was feeling particularly junky so I went back to the Dr and low and behold I have pneumonia. I can’t say I’m surprised as this is not the first time, but I’m just discouraged. I have been so good over this 2.5 weeks about taking everything, not missing nebs, eating well, staying out of the cold…you name it I’ve done it. I was even almost off the prednisone and had moved to q6 nebs. Now I’m back on a boat load of pred, pulmicort nebs, q4 duonebs, and antibiotics on top of all the usual suspects. I was talking to one of the RTs at the hospital about how I don’t know a lot of people that “get it” and he recommended I reach out on this forum as it’s a great community. So as I enter into week 3 of this **** does anyone have similar experience of just not being able to to kick a bad flare, or have any advice in general on the recovery phases of this kind of flare. Thanks for reading.

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  • Melissa G

    Hi Kelsey, welcome to the AAFA forums!

    Sending you lots of hugs on all that you have been through! 

    It is so hard to rebound when there are so many viruses/bugs going around right now. And once you are since it is easy to catch something else. 

    I am glad that you reached out to the RT at the hospital. Did they have any other recommendations for you?

  • LK

    Welcome Kelsey124!    

    I am so sorry you are having such a rough time!     Glad you found these forums though!  The people here are very generous with support and sharing their experiences on how they live with asthma and other challenges.

    I so understand the feeling of doing what you are supposed to do – taking meds on schedule, avoiding what triggers you can, etc. -  and still having trouble with asthma.  It can get rather discouraging!  

    I have adult onset, severe persistent asthma, diagnosed six years ago, so do not have the experience you do with it but I am currently in a long flare and on daily prednisone added to my maintenance medicines.  Before I found these forums about a year and a half ago, the only other people I knew with asthma didn't have to take any maintenance meds and could just use their rescue inhaler once or twice and were good to go.  Always made me feel like I should be able to do that as well but my asthma is more difficult to treat.

    Sounds like you do a good job staying in touch with your medical team.  Good for you!  

    You are so right in that unless you deal with this on a daily, well breath by breath most days     ,  basis then you have no idea what it is like.  Trying to think of what triggers you might run into on errands or going to someone's house can wear a body out.  Even when others try their best to understand it is easy for it to slip their mind or they will say something like "Couldn't you just come for a little bit? "  As if only breathing in triggers for a little bit is not going to affect our lungs.  

    My best advice would be be patient with your recovery and yourself.  I know that for me I get tired of the baby step improvements.  Another helpful thing, thanks to several people here mentioning it, is to keep a journal or spreadsheet of my numbers and any other relevant things going on.  This has really helped me see that sometimes my breathing is improving ever so slightly.  

    Please let us know how you are doing!  Will keep you in my prayers for a good recovery!

  • Kelsey124

    Melissa – The RT mentioned there used to be a support group comprised of patients, families, and providers but it fell off a few years back and hasn’t gotten back off the ground. Other than that, they just said lots of self care so the usuals rest, sleep between treatments, eat good food, do quiet activities I enjoy. 

    Lisa – It is so nice to hear that someone understands!! When I was younger I was one of those asthmatics that only needed my inhaler for sports and a controller for when I was sick. Things have so changed since then!! When I’m healthy though I’m perfect!! I work as a ski patroller which is pretty much the best job ever, and I will graduate nursing school in May. I love to be outside (even though the outside doesn’t love me) and I love being active. This flare has taken 3 weeks of my winter activities and I hate it!!! What’s nice though is because I work in the health care field and I’m in nursing school the people I spend time with understand that my lungs are temperamental. My boss is awesome and is very supportive, and sent out an email to the staff and made sure they reached out on my birthday cause I was feeling so crummy. My best friend and her boyfriend actually hired a cleaning lady so that I can come to their house and have it be a safe air space In terms of keeping track of numbers, have you heard of the AsthmaMD app? It’s incredible and I’ve found it enormously helpful for keeping track of peak flows and symptoms. It’s also super helpful for when asthma flares away from home and you can’t get in touch with your usual healthcare team. Unfortunately not all providers understand that every asthma patient is different and this app allows you to show them what you look like when you’re good so that they have a comparison.

  • Kathy P

    Hugs Kelsey – I've definitely been in the cycle of almost back on track then getting knocked down again. It's so frustrating when you are doing everything you can and you wind up with another flare. It's hard to be patient!

    The app sounds like it is a great tool for you. Do you have the connected peak flow meter? Or do you enter things manually?

    For myself, I find the more I know about different asthma symptoms, the better I can communicate to my doctor about what is going on and what might be triggering it. That helps us get to a more targeted treatment plan.

    that you can get things settled down again and it stats that way. 

  • Wheezy Me

    Welcome, Kelsey!🙋‍♀️ 

    Sounds like you have a lot going on. I'm sorry asthma has been giving you a hard time… We all know it, and you found a great place for support!

    No matter what, please don't feel that the pneumonia or any other worsening is because of how you behaved. It's so important you are taking good care of yout health (yay!), but even with all the precautions, we can still catch infections. It's perfectly normal, so many bugs are going around these days… People with asthma just take it harder than others, and there's no one to blame here.

    For your question- the two infections could be a coincidence; however, it's also possible that the first severe one caused certain parts of the lungs to collapse (atelectasis), especially as you needed high flow. Such areas are prone for infections later. Did the RT recommend any breathing exercises to open them? It's a simple measure that can help you get back into shape faster.

    And that is so nice of your boss and friends! You are lucky to have them, and I sure they treat you well for a reason- that you are a good friend/coworker too.😊

  • Shea

    Welcome Kelsey, 

    I am sorry you have to go through this extra rough patch. It can be tough to dig out of because irritated lungs are just more open and sensitive to everything. But you know you did everything right, so there is a certain amount of serenity in that. You minimized your risk by your earlier actions, it still git ta– that was unlucky– but don't let it deter you from using those excellent practices again, because you will likely get through it this next time and get over that hump. 

    If you really want to try an add something– not sure if you have one already– but I have a germ guardian air purifier in my bedroom that has a UV light on it and seems to help me. 

    Keep us updated on your progress, if you can!

  • Kelsey124

    In regards to the AsthmaMD app, no I just enter things manually. Its not that hard and forces me to pay attention to what’s going on with my lungs

    On the breathing exercise note, after every neb I do 10 good breaths on the incentive spirometer and then 10 good coughs to move stuff around while everything is open. It doesn’t feel like it makes a difference initially but an hour later I can usually get a few productive coughs going. It’s not comfortable and my muscles hate me but I’m getting stuff out so that’s what counts 😆

  • LK

    Kelsey,  I did try that app for awhile but, and maybe this is just me showing my age     , but I do better entering it on the bigger screen on my computer.  

    Totally agree with you on how it makes me pay more attention to my lungs and how I am breathing.    

    That is good that your breathing exercises are helping.  I have cough variant asthma so I cough most of the time especially lately.  Even doing the spirometry at home and the pulmo's office sets me to coughing.  Your comment made me realize that I don't purposefully take enough deep breaths during the day though.  Thank you for sharing what you do!  Will have to make more of an effort to do that.

  • Melissa G

    Kelsey, congrats on graduating from nursing school this spring! Thanks for the info on the app! I need to check into that. 

  • K8sMom2002

    Hugs, and welcome Kelsey! Love the advice and encouragement you've already gotten — and to that RT for suggesting you join here! 

    Something else that occurred to me … 

    Have you had the pneumonia vaccine? It helps with more than "just" pneumonia. According to the CDC:

    Streptococcus pneumoniae, or pneumococcus, is a type of bacterium that causes pneumococcal [noo-muh-KOK-uhl] disease. Pneumococcal infections can range from ear and sinus infections to pneumonia and bloodstream infections.

    People with asthma are more at risk for flu and pneumonia, so getting properly vaccinated can help reduce our risk. Here's a great AAFA blog post about the .

  • Breatheeasy
    Kelsey124 posted:

    In regards to the AsthmaMD app, no I just enter things manually. Its not that hard and forces me to pay attention to what’s going on with my lungs

    On the breathing exercise note, after every neb I do 10 good breaths on the incentive spirometer and then 10 good coughs to move stuff around while everything is open. It doesn’t feel like it makes a difference initially but an hour later I can usually get a few productive coughs going. It’s not comfortable and my muscles hate me but I’m getting stuff out so that’s what counts 😆

    I figured the same thing too. Coughing and getting things moving after the inhaler helps.

  • Kelsey124

    UPDATE!

    Saw my Dr. today and good news! Lungs were clearer, sats were decent, labs have improved, and I managed to walk across the parking lot to class and didn’t feel like I was gonna die. Been a good day! Still on the pred but tapering starting Thursday. Once I get off the pred, we will drop one of the pulmicort nebs and then eventually both. Dr. said the q4 nebs will probably be the thing I need longest. Not pumped about that but I’ll take what I can get. We did manage to get me a PariTrek portable neb so that I can get back to living life with asthma instead of around asthma. I’m pretty excited and my insurance covered the whole thing! Well except the battery but it’s a small price to pay for freedom! 

    In regards to the pneumonia vaccine yes I got it 2 years ago and this is actually the first time I’ve had pneumonia since 😄

  • LK
    Breatheeasy posted:

    How often does one need a pneumonia vaccine? 

    BreatheEasy,  Found this on the Mayo Clinic website about the pneumonia vaccine. 

    It says "Pneumococcal vaccine is usually given only once to each person. Additional injections are only given for special cases, because of the possibility of more frequent and more severe side effects." 

  • Breatheeasy
    LK posted:
    Breatheeasy posted:

    How often does one need a pneumonia vaccine? 

    BreatheEasy,  Found this on the Mayo Clinic website about the pneumonia vaccine. 

    It says "Pneumococcal vaccine is usually given only once to each person. Additional injections are only given for special cases, because of the possibility of more frequent and more severe side effects." 

    Thanks that’s interesting.

  • Pljohns

    pneumovax is a booster every 5 years for people with asthma.  I'm not sure about Prevnar 13.  I had the initial and have had 1 booster.

  • Kelsey124

    It’s going well!!! I’ll be off it entirely by Friday, which I’m eagerly anticipating. That will mark almost 4 full weeks of prednisone, so I’m ready. I was able to work at the mountain this weekend on light duty and it was so nice to ski again!! Once I’m off the prednisone, we drop the pulmicort to once a day for 3 days and then off it entirely and back to my regular maintenance drugs. Fingers crossed that I don’t rebound again, but I think I’m finally in the clear☺️

  • LK

    Kelsey,   That's awesome that you were able to get out and about!  Bet it was great fun!   Hope you keep feeling better!

  • Pljohns

    That's wonderful Kelsey!  We all know that wonderful feeling of being off pred.  Fingers crossed that everything keeps going well and you will very soon be back to your maintenance meds.

  • Melissa G

    @Kelsey124 How are you doing? Have you been able to go back to your normal maintenance drugs?

  • Kelsey124

    @Melissa G I’m doing fantastic!!!! In fact things have been going so well that I was able to come to Switzerland for my spring break!!! I’m up at high altitude, but we pre medicated with acetazolamide and Ive been doing reallly well. I’m currently in Zermatt which has been a dream for a really long time!! Tomorrow I am going to ski amongst some of the most iconic peaks in the world! I cannot wait!!! Of course I came prepared with literally every asthma drug I could ever need and travelers medical insurance should my lungs crap out on me, but I am currently able to live my dream!!! Thank you so much for checking in!! Hope all is well with you!