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Hospital again

Hi. I’m in the hospital again. I was home 3 1/2 days and then had a severe asthma and allergy problems again at work. I’m so discouraged because I was still taking 30mg of Prednisone and Albuterol every 4 hours nebulizer or inhaler. Plus all of my other medications. They are just weaning me off the Bipap machine that I have been on since Tuesday. 😭!

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  • MMKB

    It should say Bipap since Wednesday. The days blend together in the hospital!

  • Shea

    Oh No, MMKB!!! I have been stuck on 20 mgs maintenence prednisone for my chronic allergic disease Churg-Strauss Syndrome (I was diagnised after a heart attack caused by allergic eosinophils surrounding my heart, it is rare and I was fortunate that the doctor recignized it, confirmed it, and treated me with high dose steroids and cytoxan. Since then I am still on 20mg pred and nebuluze wuth budesonide, ipatroprium bromide-albuterol 2x day. 

    O I know where you are coming from! Boo! But hopefully theyll get u up and running again (or resting–lots of resting!!)

    Do you know what triggered you? (I have severe cat abd dog dander allergies amingst other things but I was living with them before and the dander was just too much for me).

  • Kathy P

    Hugs MMKB – that stinks you land back in the hospital again. I hope you can wean off the bipap and get things stable. 

  • LK

    MMKB,  Sending warm, gentle HUGS your way!!    Hope your care team finds ways to help you and that you are breathing more easily very soon!  Will keep you in my prayers!

  • MMKB

    Thanks for your messages and prayers. Still not doing well. The Bipap machine is off but in here in case I need it. Tried to sit up = continuous coughing, congestion, passed out. 😭😩! Now I'm exhausted. Still getting double breathing treatments every 3 hours, high IV steroids and other medications. The cause of my asthma and allergy problems – I was painting with my students and I think some of the paint spoiled and is moldy.

  • Marie E Natzke

    Mmkb, I never kneeling can get moldy. What type of paint were you using? Hope you are feeling better tonight and can get some rest

  • Kathy P

    Hugs MMKB – I hope things improve more today. It's hard when progress us slow and everything is a setback. 

  • MrsButters

    So sorry you are going through this.  Hope you are feeling better today and back on your feet soon! 

  • Shea

    MMKB,  I am glad you were able to move off the Bipap machine. Hopefully those steroids will keep working to knock out more and more of that inflammation, and you will get more relief. Wow on still feeling so much congestion even with the double breathing treatments–gosh it reminds me of my serious exasperation/hospitalization so much. Scary and exhausting I remember.

    Moldy paints– I just did a quick google search and, sure enough–paints can get moldy (especially oil paints that have more organic parts)… You can buy mold inhibiters to put in before painting or storing paints, and they also make some paints now that have it in it–I also read paints can be stored upside down to help prevent mold (I had no idea about any of this before this google search). Mold is such a yuck trigger because the spores just get in tbe air and then into your lungs. 

    Im sorry that happened and caused this serious reaction!

    I am praying for you and keep checking in whenever you feel like it to let us know how your doing. 

  • K8sMom2002

    Hugs on the possible moldy paint and the hospital stay! I'm glad you're better, but I can definitely see how frustrating it is to be back in the hospital. 

    How are you doing now?

  • Pljohns

    MMKB-so sorry you are back in the hospital-hope you are better soon and your doctors can find something to help your breathing get much better.   and prayers sent your way.

  • MMKB

    Hi. Thanks for your messages and prayers. I'm still in the hospital. Slowly recovering. Movement usually = more breathing problems. I wish I could speed up my recovery. This is my spring break from school/work. In a week I'm supposed to return to work. This is not how I planned to to spend my vacation 😭!The paint was Tempera Paint.

  • K8sMom2002

    Yikes, MMKB! So sorry you're having to send your spring break at Club Hospital instead of Club Med. I'm hoping your recovery will speed up, and you'll be home and better very soon.

  • Pljohns

    MMKB-hope you are doing better today and soon out of the that wonderful "health spa" vacation.  Sorry you ended up spending your spring break there-

  • MMKB

    Update – I’m still in the hospital but I have made progress!!! I’m now in a regular hospital room 😀! Thanks for your messages and prayers 😀!

  • LK

    That's wonderful, MMKB!!  Hope you are improving each day!  

  • MrsButters

    Great to hear things are improving!  Hope you are fully recovered and discharged soon!   

  • K8sMom2002

    That is terrific! From a regular room, you can see the light at the end of the tunnel! Hopefully you'll be home soon!

  • MMKB

    Update: I'm home !!! I am still recovering but I'm so happy to be home. It is wonderful to finally get some sleep!

  • LK

    MMKB,  Awesome that you are able to be home now!!!    Hope you are able to get some good rest!   

  • Shea

    Yaaay to be home!!!! And yes, that is just a step of recovery (So keep taking it easy and resting!)

  • MMKB

    Melissa G – Thanks for your message. Yes, I'm home still recovering. I just can't get back on top! I was down to 20 mg of Prednisone and my doctor said I had to go back up to 40 mg.! In addition to my regular maintenance medications, I'm still needing my nebulizer every 4 hours. I need to recover soon because I really need to go back to work!

  • Shea

    It is tough recovering, without putting too much pressure on yourself to "speed it up"– often in my past trying to speed it up led to flares. It is hard to be patient and listen to your doctor and your body, AND have your employers do so. At least in my ecperience it was.

    Before my heart attack, I had the same issue– I needed to work, my bosses needed me to work. After I had a heart attack, I was out of PTO time, and my bosses wanted me back after a week. I tried to do just part-time,  but they just ended up replacing me, so I had to go on unemployment money for a while and I realized then that I really couldnt work with my disease, (churg-strauss syndrome), because I flared so often and it affected so many vital organs (including lungs/asthma which was the hardest for me to deal with–you just cannot negotiate with the need to breathe), and I didnt know enough about my triggers then either. I applied for and eventually got disability.

    The whole process was hard for me from start to finish and it was not a direct path (many, many flares and failed attempts at trying to work). But there are supports out there, and a lot of employers are more understanding and patient and flexible and helpful in finding part-time positions, from-home positions, etc and will work with you– more than mine were. And my disease is different too. But…

    When it comes down to it, a job is replaceable, a body is not. You cannot rush recovery but you can get there step by step. And you have been doing well still being able to be at home and pretty steady (coming down on prednisone is not my forte, but I like the slow and steady approach when you get to 20mgs and lower).

  • Melissa G

    MMKB- I glad to hear you are still home but sorry you had to increase the steroid dose. Try to take it easy and recover. What do you do for work? 

  • Pljohns

    MMKB-I can tell you from personal experience what happens when you go back to work too soon-I was out of the hospital 2 days ad went back full time.  I made it 2 days and landed in MICU for a week.  AFter that, I took 30 days of medical leave and during that time, made the decision that the job I had was going to kill me if I didn’t do something.  I loved my job and hated to leave but during that 30 days, I had interviews and the first day back to work, I turned in my notice.  My new job is so much less stress, so much more laid back and more flexible hours.  Shea is right-a job is replaceable but you aren’t.

  • Marie E Natzke

    @MMKB, stressing yourself about work will slow your recovery down. You need to stop worrying so much. Easier said than done I know from my own experience, but all my Drs tell me to  watch my stress level all the time

  • MMKB

    Thanks for your messages. Yes, I know I need to take it slow, but I wish I could speed up the process . I'm a special education teacher.

  • Shea

    That sounds like a rewarding job (albeit tiring– as teaching can be)… Maybe you can ease back into it? Prednisone can make one feel restless and full of energy tgen tired as u taper… The hardest for me is that below 20mg to 10mg hump then your body starts producing the cortisol on its own and things get back to normal. 

  • Pljohns

    MMKB-hope you are feeling better today and can soon get back to work-but not too soon!

  • MMKB

    Thanks for your messages. I am still recovering and disappointed that I'm still having daily asthma and allergy problems. I am down to 20mg of the prednisone and now my symptoms are increasing. My Xolair shots have been discontinued and now I'm receiving Nucala. I received my first Nucala shot yesterday and woke up this morning with the following symptoms – nose running and congested, coughing and short of breath. I'm hoping as time goes on the Nucala starts to work. My doctor said the time frame varies from person to person. I really need to find a way to get my asthma/allergies under control so I can return to work. With the Xolair, I had some improvement for a couple of years then it lost effectiveness. 

    If you receive Nucala injections, how long did it take for you to see/feel improvement?

     

  • Shea

    Nucala started working for me noticeably after the third injection and it showed up in my bloodwork by getting my eosinophils into normal range. Unfortunately I ran out of funding for it so I had to discontinue it before I could taper lower on prednisone that I take for my allergic disease (churg-strauss dyndrome). I think it is a good medicine though… I do remember having a lot of fatigue the day of the shot so I always made sure I had that whole day free to take it easy.

  • MMKB

    Thanks for your messages. I'm still recovering, but I'm doing better. I am slowly trying to lower my steroid dose and I'm trying to avoid the tree pollen! My first Nucala shot went okay. I was surprised to learn for my first three Nucala shots I have to stay at the doctor's office for 2 hours in case I have a reaction.