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I've recently been diagnosed with emphysema and I have an unusually high count of a bacteria

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heniya
heniya

I have recently been diagnosed with emphysema and I have an unusual high count (?) of bacteria in my lungs. I'm been on spiriva ( maybe helps ) for a month and antibiotics ( has helped before but never cured issue ) for a few days now. I feel better with antibiotics . I think my main issue is the bacteria problem. 

Anyone else gave a bacteria problem and on antibiotics?

Eventhough I feel better ( a bit) , I the evenings my lungs are really tight., scary tight. I'm confused and a bit scared . Do I just have to be patient or should I be getting to the hospital ?

1 like, 5 replies

5 Replies

  • deirdre._03652
    deirdre._03652 heniya

    Posted

    Dear heniya, call the NHS helpline any you are worried, you know your-Self if your breathing is not right, they will help in any way they can, how-ever if you are in distress then please dial 999 right away, they can send.a paramedic to assess you straight away...

    I know how frightening it is to struggle to breathe, I suffer from quite. Severe CPOD and ASTHMA and I have had some attacks that were so

    Bad I thought I may die...... please take very good care of yourself, I hope. That you keep well and that your chest infection improves....

    Best wishes to you, Deirdre x

    • heniya
      heniya deirdre._03652

      Posted

      Hi Deirdre 

      Thank you much for responding 

      I do know my breathing is not normal but it's been so long and there seems to be nothing changing it . I've gone to the hospital. Waited for hrs and they tried all of the inhale/ pumps.  none of the inhalers worked, they sent me home. I was terrified. It's been over a year now. My specialist is seeming less special as time is passing and nothing is changing.

      I'm hoping someone will tell me the meds will work soon or if they haven't worked by now then we must try something else. 

      I'm so sorry to hear of your condition. My heart goes out to you . Since I'm so new at this ....Would it be ok to ask you your story?  I would like to know if your meds are working for you ? What does "working mean to you"? what was the process? How many meds did you try? how long did it take to work and how long have you had this condition? Are morning usually better than than evenings ?  How do you stay calm? How often do you get attacks?

      Curious but I would understand if you choose not to. It's a lot of questions  rolleyes

      Thanks 🌸

    • DawnDedee
      DawnDedee heniya

      Posted

      I stay calm using visualization.  My happy place is on top of a cliff so high that I cannot tell where the ocean ends and the sky begins.  That blast of clean salt air, and it is the cleanest right off the ocean because it has not hit the vegetation and picked up pollen yet, is what I envision.  I fight against crying in my distress because crying makes breathing 20 times worse.

      When medical personel are not taking me seriously, I speak out, gasping, but still speak out.  You have the right to breathe the best you can and that is your goal.

      I have been on EVERY medication since birth and this is what works for me now;  Singulair, a tablet, Spiriva inhaler, Breo inhaler, the latest and greatest, ProAir rescue inhaler, Nasacort nose spray and DuoNeb in my home spontaneous breathing treatments twice a day, although since I began Breo last month, I have not needed my rescue inhaler or the breathing treatments.  Amazing!

      Going to an allergist is helpful also because that is where I learned that in order to keep the lungs healthy, you must first keep your nasal passages healthy.  So irrigating once or twice a day with a mixture of salt and water or a prepackaged mixture is incredibly valuable to survival, along with a good steroid nasal spray.  

      I also ask for Corticosteroid long and short lasting njections when I begin an antibiotic, and try to avoid the dose packs of prednisone.  For some reason I cannot taper off as quickly as the dose package makes us do.

      I hope I can be of some help for you.  Surely my life long suffering as been for something important!

      Prayers,

      Dawn

  • ladyjack51
    ladyjack51 heniya

    Posted

    Hi Heniya

    It's just my opinion,  but if you get scary tight in the evening..you should go to the ER at that time.  Its a wonder that you can relax enough to sleep. What if you don't wake up? I feel like your body/chest is trying to warn you. Maybe you have a nebulizer machine at home and take treatments so you can breath??? Or no?? I would definately go for a second opinion....a lung infection can be life threatening. Must be something going on that they don't know about..or maybe they do?? Just my 2 cents...I'll pray for you, Gina

  • DawnDedee
    DawnDedee heniya

    Posted

    Hi, I truly understand what you are going through being born with severe asthma that nearly killed me three times and then in my twenties after being pregnant brushed with death again.  By age 30 I lost 70% of my lung capacity to permanent damage and the kicker is that I never smoked. Now I am in my latter 50's and emphysema has begun.  So suffocation is common place for me.  My particular problem cannot be helped with oxygen, so I am reliant upon some of the most amazing asthma and COPD medications that science can offer and I praise God for them many times over every day!

    Bacteria is lethal for us and it is well to learn the feel and the taste and color of your sputum when you first realize that you are becoming sick.  And infection out of control in diseased lungs is dangerous.  So I now go to the doctor at the first stirrings of infection problems.  Unfortunately, often medical personell do not believe me if I go too early, so I have learned how far I can let my symptoms go before going for help.  Risky but my experiences at emergency rooms has been negative in this way.  Too many times the severity is blown over by the nurses and doctors in an ER and by the time they actually get to me, I have to be admitted for four days!

    Also another way I survive is to ask for my sputum to be cultured so that the bug can be identified and a proper choice of antibiotics can be prescribed instead of going for months and years taking different antibiotics that never kill the bug.  That wears me out!  I accept taking a general antibiotic while waiting for the culture results.  One time after suffering for two years with bacteria in my lungs and on antibiotics twice a month, I asked to have my sputum cultured and discovered that I had the cousin to Mersa (sp?) living in my lungs!  Cleared it up and I was better for years before most recently staph grew in my lungs.  How dangerous and I contracted both those bugs just by being a patient in the hospital!

    If your lungs are tight in the evenings, it is pretty common.  I do not know why, but night time has always been worst for me.  In fact all of my hospital trips by ambulance and such are in the wee hours of the morning.  

    You are your own advocate and only you live in your body so learn to trust your own insticts like scary and tight and go for help immediately.  The most difficult aspect of chronic illness that I have had to deal with is trying NOT TO BE A BOTHER to others.  Kick that thinking out the door forever!  You must fight to stay alive and you are the most important part of the medical team!

    This is most likely too long to read and I sure hope that you do not find me bossy, but I have been a pulmonary patient for nearly 57 years and I have learned a lot.

    Please take care and my best wishes and prayers are sent your way and write anytime!

    Love,

    Dawn  biggrin

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