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ICU Discharge

Hey all. I'm new to the page and had a really scary attack last Monday. 

Now, let me tell u, I've been hospitalized 7 times just in the past 6 months due to my asthma. I take prednisone all the time, am on dulera, singular, etc. This ER visit scared the crap out of me.

I ended up in the ICU after having to walk to the bathroom. They had to knock me out and put me on a bi pap so I could catch my breath. I just got home Friday and have an appointment with my pulmonologist tomorrow. Does anyone else have this severe asthma? This is going on 7-8 years now and I seem to keep getting worse. Any advice or suggestion I welcome, please. 

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  • Kathy P

    Hugs Josie – sounds like you've had a rough time. I'm sure ending up in ICU was very scary.  Good luck with your appointment titomorr and let us know what the doctor says. 

    My asthma keeps getting worse and it's very frustrating! Every time I think things are stable, something flares. And those seem to come more frequently and are harder to get back to baseline.

    I'm going to tag @Nemo88 as he has had several hospital admissions and been in ICU. Hopefully he can add some advice. 

  • Nemo88

    Hey Josie sorry to hear about your recent stay in the ICU that's not fun. I am young but old veteran of asthma. I am 29 been intubated 5 times air cared twice and lots of other crazy stuff because of my asthma. What are maybe some of the questions you have and I will see if I can share any insights or knowledge I have gained along my journey with asthma. Also if you have certain questions about medications I can tell you my experiences with many of the medications out there and at least give certain tips or tricks to managing or dealing with side effects. Just let me know I am always willing to share and chat as much as I can.

  • Josie
    Nemo88 posted:

    Hey Josie sorry to hear about your recent stay in the ICU that's not fun. I am young but old veteran of asthma. I am 29 been intubated 5 times air cared twice and lots of other crazy stuff because of my asthma. What are maybe some of the questions you have and I will see if I can share any insights or knowledge I have gained along my journey with asthma. Also if you have certain questions about medications I can tell you my experiences with many of the medications out there and at least give certain tips or tricks to managing or dealing with side effects. Just let me know I am always willing to share and chat as much as I can.

    Hi Nemo! I'm curious what steps are you taking? I feel like they keep doing the same tests and prescribing the same meds over and over. I know the hospital can only treat my symptoms but what about your doctor? Like I said before, I take dulera, singular, prednisone, an antacid, nebulizer treatments, and still am in the er so much I should have a frequent flyer card.

  • Nemo88

    Oh I know what you mean by being a frequent flyer. I would guess one thing I would be asking is should you be on an advanced asthma med. Those would include medications like xolair, Nucala, and I think the new one is called fasrena. These medications are called biologics. I have tried xolair which helps for a more specific condition seen in certain asthmatics determined by blood test but can still have some of the same effect as Nucala but it wasn't out yet so we used the xolair. I am now on the Nucala which basically helps lower Eosinophils which cause alot of allergic based asthma. It's not a cure but they can help alot.

    Also have you learned what seems to be your triggers. Knowing those is definitely major key to having more control. Plus will help me narrow down what things may help/assist you more for tips and tricks.

  • K8sMom2002

    Hugs, Josie — sounds like you have had a rough time of it. I can tell you that Nemo is an expert Asthma Warrior and has really been a great source of support and advice for our members.

    I like Nemo's suggestion about asking about other med options. 

    The rest of my suggestions may be things you already do, but it's what I like to call "low hanging fruit."

    Could you keep a ? For me, figuring out that my triggers included:

    • upper respiratory infections like colds and flu
    • drops in barometric pressure and extreme temperature changes
    • being around hay, cigarette smoke and perfume
    • high pollen days

    All that helped me know when I was most likely to have a flare. Now I have a "sick plan" so that I know what to do when I first get a cold (and I try really hard to avoid them!)

    Could you talk to your pulmonologist about whether pulmonary rehab is right for you? Pulmonary rehab could help you keep the lung function that you have. 

    Could you see if your meds need to be tweaked or if you should have a plan in place for certain triggers?

    We're definitely here for you! 

  • MMKB

    Hi Josie – I can definitely sympathize with you. I was discharged from ICU on March 23. My asthma too has been getting worse and is hard to control.

    How did your appointment go with your pulmonologist? I hope you received some helpful information from your doctor.

  • Kathy P

    Sorry to hear you were in ICU MMKB and that your asthma keeps getting worse. Mine has progressively been getting worse and harder to control over the years. It's very frustrating!

  • K8sMom2002

    MMKB, I know that for my mom, any time she was in the ICU, she was always pretty shaky when she came home. I've been lucky enough to avoid the ICU so far (for my asthma at least). 

    What sort of changes did your doc suggest after the last ICU stay?

    I do hope no news is good news, @Josie! Check in when you can!

  • MMKB

    K8SMOM2002 – Thanks for your message. Yes, after being in the hospital it takes me a while to recover. I feel worn out from the asthma/allergy problems plus I usually don't sleep well in the hospital. I'm supposed to continue taking my nebulizer with Albuterol or my Albuterol inhaler every 4 hours. I'm also on daily Prednisone again and I'm supposed to continue taking my Qvar, Breo and Spiriva inhalers too. 

    I currently get Xolair shots that don't seem to be helping. The doctor is trying to get my insurance to approve Nucala.

    It is very frustrating and scary when the Albuterol Inhaler or nebulizer treatments don't help at all or last only a little while. Prior to going to the ER, I had tried to regain control of my asthma at home but it just would not cooperate!!! Over a six hour period I had 4 puffs of my Albuterol Inhaler and 7 breathing treatments and I was in trouble!!! Because my asthma is so unpredictable, I feel like I always need to do as much work as I can to get stuff done ahead of time and have a plan B for my kids. I feel bad that my asthma and allergies have prevented me from attending my kids' competitions, games and etc.

    I'm concerned because the tree pollen season has not started here yet and it usually really sets off my asthma/allergies !

  • Josie

    Hey all. Thank you for your responses! Last week was pretty overwhelming.

    I had an appointment with my Pulmonologist on Tuesday. That was really rushed, I felt. She wants to start me on Spiriva and is trying to get Xolair approved but my blood work has all been negative so she's not really hopeful about that. She also tried to get me approved for the bronchial thermoplasty but I got a call today stating my insurance doesn't even have it in their system as an option.  

    Thursday, I had a follow up with my pcp. She suggested I get a sleep study done, which is happening this Thursday. 

    Here I sit, at home, on oxygen 24/7. I am trying to get on disability but it may take 5 months to get backpay or anything. Bills are pilling up and my boyfriend and I are stressing out. We are trying to take it day by day but stress is stress. Thanks for listening guys, I appreciate it.

  • Shea

    Im just jumping in here on this thread– my bloodwork shows that my eosinophils and IgE levels are in normal range if I am on a high dose of prednisone (or have been really recently to treat a flare). so if your labs are normal .. You might want to redo them when you are not on an irregular dose of prednisone.

    My condition also involves allergic/ eosinophillic asthma, and not all asthma is of that type. Nucala was helpful for me in lowering eosinophils (had to stop it due to losing funding), whereas xolair did not do anything for me personally but I have heard of others having success. 

    Do you have allergies or triggers that you are aware of or have you been allergy tested? 

    My disease is exasperated by cat and dog dander… Do you live with pets? Moving out of a home with furry pets probably saved my life.

    Mold is another trigger– I found out my old workplace had black mold after one exasperation. 

    I am not a fan of the medication Singulair because it has been correlated (although causation has not bern proven) with people developing churg-strauss syndrome (a severe chronic allergic disease) and I was taking it for over a year prior to developing the disease. 

    My asthma symptons improved a lot when I started regularly nebulizing 2 times a day (morning and night) with budesonide and ipatroprium bromide- albuterol sulfate solutions. I also take a maintenence dose of oral prednisone which helps keep the whole CSS under control. I am hoping to get off that but right now I am happy to be somewhat stabilized. 

    I have had attacks triggered by sulphites (dried fruits, wine), seafood (shrimp and some fish), cat dander carried on others clothing, fireworks–to name a few. 

    My treatment of choice is strict avoidance of triggers.. Although that alone has not gotten me in the clear it certainly helps me manage on less meds and less ER visits.

    I hope you find some clues that help!