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I can't seem to keep my lungs clear of infections

Posted , 7 users are following.

elizabeth49611
elizabeth49611

I have had bronchiectasis for 25 yrs, I'm 66 and retired.  I just got released from the hospital (second time in 2 months).  I do all that I'm suppose to do to keep my lungs as clear as possible, but it's not working.  I have had 5 bronchoscopies within the past year.  I can't even plan anything in the future, knowing that most likely I'll be sick. What else can I do?

2 likes, 18 replies

18 Replies

  • cofalot
    cofalot elizabeth49611

    Posted

    I am so sorry to hear that.  I have the same problem as I am colonised with HI.  I wonder if you are colonised.  What have your samples usually grown? I also wonder if you are taking a prophyactic antibiotic eg Azithromycin 1 Mon Wed and Friday.  You might want to talk about this or nebulised antibiotics with your con.  Unfortunately I don't tolerate Azith and lots of abs.  I had side effects from nebbed colomycin and am not tolerating nebbed Tobramycin very well.  I do know of many bronchiectatics who tolerate these drugs well and they have been very beneficial.  I feel if you have a good proactive consultant you can feel much better than you do at present.

    love cx

    • elizabeth49611
      elizabeth49611 cofalot

      Posted

      I have not heard the term colonised used with my issue, so I'm not sure what it means.  I use a nebulizer with albuterol to open the airways and a saline solution to thin the mucus. I also take a steroid (prednisone) on an ongoing basis. I'm given antibiotic only when I get very congested.  Is it usual to take an antibiotic on an ongoing basis? I haven't heard of Tobramycin.  I live in the states, so maybe it's not available here.
    • cofalot
      cofalot elizabeth49611

      Posted

      Good to hear you are nebulising a bronchodilator and saline.  Would that be isotonic 0.9 or hypertonic 3% 6% or 7%?  I am surprised you are taking steroid if that is oral unless you have another lung issue e.g. asthma.  I have both bronch and asthma and take a steroid inhaler.

      It is quite usual Elizabeth in the UK for bronchiectatics to take a prophylactic antibiotic.  It is a very low dose 1 tablet three times a week generally.  The normal one used is Azithromycin, although not the only one.  The benefit of Azith is it helps to break down the biofilms in gram negative bugs and helps to reduce inflamation.  It is used to dampen down any infection and not as a treatment antibiotic.

      Quite a few bronchs are colonised which means they have a bacteria which does not get killed off altogether, usually pseudamonas or haemophilus influenzae.  After treatement it can hide away in the lungs and not cause problems but sometimes starts to misbehave.  

      We usually have rescue meds at home in UK, so we can start if an infection starts over the weekend or over the holidays.

      There are 2 other reputable sites you may want to look at.  I won't put the links up because it takes forever for the moderators to allow them onsite.  Google Bronchiectasis R Us  and Health Unlocked/British Lung Foundation.  Hope to see you on either.

      With love

      cx

    • elizabeth49611
      elizabeth49611 cofalot

      Posted

      Thank you for the information.  I have an appointment with my specialist this coming week.  I'll bring up the topic of a prophylactic antibiolic and the two meds.  It's like living on a roller coaster....I never know when I'll have another episode, it gets to the point that I can't do the things I want to do.  I have to get this under control, because, as you know, it a progessive illness and it will keep getting harder to control. Thanks again.
    • cofalot
      cofalot elizabeth49611

      Posted

      I know hun it's very hard.  I've had bronch since I was a baby and I am 67 now.  I also have asthma, inflam arth and IBS.  I am intolerant to many abs, so I am hoping you are not and there will be more scope for you.  It got to the point where I was getting an infection roughly a week after finishing a course of abs, so I truly empathise with you.  You have the right attitude Elizabeth in trying to do all you can and it will stand you in good stead.  One thing I have learnt and I am sure it will be the case in the States is you have to be your own advocate.  

      If you post of the other sites just mention you have been on here and I will pm you.

      Good luck with your consultation.

      Love cx

  • debbie15945
    debbie15945 elizabeth49611

    Posted

    Hi elizabeth

    You have had bronchectisis for a long time i am in my 40s and have had it just over 3 yrs.

    Can i ask over the yrs how this lung disease has effected your life in terms of infections, treatments

    Extra and what is bronoscopies? Is that where they flush your lungs ? What effect does that have on you.

    Hope you dont mind me asking

    Ive only had this thing 3 yrs and i have had antibiotics for weeks on end, physio, endless texts 2 lots of pic line iv for 3 weeks first time last October then jan tryed again as it didn't work iv for 3 weeks followed by 3 months of cipro and nebulized gentamiacin

    That was in January this yr i had my last corse as i have colonised pseudomonas.

    That worked really well and i have had barely any cough and clear phlegm if any . Over the last month ive had a cold and just had a bout of gastro and i can feel its come back and taste it and my cough is increasing also my sputum has changed colour.

    I as you get quite down and wonder what my future will hold.

    • elizabeth49611
      elizabeth49611 debbie15945

      Posted

      Debbie,

      The first few years, I was in my late 30s, I was told it was asthma.  It was mostly under control.  I would get pneumonia or bronchcitic more often than most.  Then about 15 yrs ago, it was refered to as COPD (chronic obstructive pulmonary desease).  Last year it was confirmed that it's bronchiectasis.  Over the years the shortness of breath, coughing and congestion, wheezing is getting more frequent. The worse was 15 years ago, my lungs were so full of mucus, my brain was not getting enough oxygen, I was put into a drugged induced state on a respirator in intentive care for 6 days. That's when I started seeing a specialist. The last two years have been a struggle, several hospital stays, and numerous bronchoscopies. When I start having issues, I can tell by my energy level.

      A bronchoscopy is when the doctor suckions the mucus (washes) the lungs by way use of a scope (tube) down the throat.  It's done as an out patient (which means i go to the hospital at a schedule time, they put me under, do the procedure, then after I'm fully awake, I can go home).  The doctor said that no harm is done to the lungs.  Pneumonia does the harm in adding more scaring to the issues of the lungs.

      I wish I could tell you that it will get better, but it won't. The best thing is to keep on top of it, keep it under control and at the first sign of touble, see your doctor.

      I was told that due to childhood illneses (meales, and whooping cough) and pneumonias the walls of my airways have weakened and scared the lining of my lungs, which is bronchiectasis.

      I'm conterned about my life expectancy and most of all my quality of life.  I would think that by doing what I can and modern medicine, I should have an average live span.

      Keep in touch, Elizabeth

    • debbie15945
      debbie15945 elizabeth49611

      Posted

      Hi elizabeth

      Have you used a nebulizer with antibiotics along with i.v antibiotics for long periods

      Or saline through a nebulizer

      These may help clear your infection for a while and bring up mucus

      What type of bacteria are you producing

      I mainly have pseudomonas which is extremely hard to eradicate

    • sam90709
      sam90709 elizabeth49611

      Posted

      Hi Elizabeth - just on the issue of life expectancy: while 50 years ago bronchiectactic patients could have an alarmingly short lifespan, generally these days with modern antibiotics bronchiectasis does not necessarily mean a reduced life expectancy at all.

      As long as it's kept under control and doesn't progress (ie the degree of physical damage is not too bad as assessed by HRCT scans) , then the lifespan of Bx sufferers is about normal. The exception comes if you get one or two particular complications, but they are usually associated with heavy lung damage in the first place. 

      So it all comes back to the same place: clear your lungs enthusiastically and noisily (!), take flu jab and every so often other recommended jabs (pneumococcus is I think every 5 years, anyone remember for certain?), keep an eye on symptoms suggesting an infection and treat aggressively and rapidly with rescue antibiotics while you wait to find out what the bug is and then treat accordingly, if you get multiple infections per year take prophylactic antibiotics.

      if we do all of that AND negotiate the vagaries of the healthcare system where GPs often do not understand Bx and need to be told (and this website is a great place to get ammunition for that)... Then we can keep going a long time! 

      Clear lungs!

      Sam

    • elizabeth49611
      elizabeth49611 debbie15945

      Posted

      Hi Debbie,

      I do use a nebulizer, 3 times a day for maintenance. I do use a 7% saline solution with it. I also use a procussion vest that beats on my chest to help lossen the mucus. I have not heard of an antibiotics that is used with the nebulizer.  The only time I get an IV antibiotic is when I'm in the hospital. 

      I'm not sure what type of bacteria I'm producing, and if it is pseudomonas.  I do know that afew years ago I had a type of funcus bacteria and was on an antibiotic for over 3 months.  The med was pricey too!!

      I have a tendency to ignore that my lungs are not right and go a little too long before I see a doctor.  You would think that I would learn, that it won't get better and to see my specialist as soon as possible. 

      keep in touch,Elizabeth

    • elizabeth49611
      elizabeth49611 sam90709

      Posted

      Hi Sam,

      Thanks for response.  I agee, with aggressive care, we should have a normal life span.  I worry about the quality of life.  When it's really bad, just walking up a flight of stairs, I'm really out of breath and weak. I want to be more active than that.

      I take exersice classes and try to be as active as possible around the house in order to keep my lungs in shape.  I don't think it helps the lungs if I was to sit all day.

      I see my specialist tomorrow, so, thanks to these discussions, I have a few things to go over with him.  Also I'll be going back up to the Mayo Clinic next month for a followup appointment.  I'll bring these questions up to my doctor there.

      I also get a flu shot each year and the pneumonia shot (every 5 years).

      Keep in touch, Elizabeth 

    • sam90709
      sam90709 elizabeth49611

      Posted

      Hi Elizabeth

      Everything sounds good... Apart from that point about "I have a tendency to ignore that my lungs are not right and go a little too long before I see a doctor." 

      See above about aggressive and early treatment!

      Hope you have a productive meeting with your specialist - do keep us informed!

      Good luck

      S

  • sam90709
    sam90709 elizabeth49611

    Posted

    Hi Elizabeth

    sorry to hear about the infections and I do hope that your specialist considers a prophylactic. For many people who can tolerate azithromycin, it can make a massive difference.

    Good luck

    Sam

    You didn't say explicitly in your email whether you had been taught any chest clearance techniques. These are exercises such as Active Cycle of Breathing (or indeed equipment like flutters) that encourage the mucus to come up. If you're not doing this, then it's a good way to keep the mucus down.

    finally to add to cofalot's website recommendation about bronchiectasis, I would recommend a pdf pamphlet called "living with bronchiectasis" that is produced by Chest Heart and Stroke Scotland. It's excellent.

    • elizabeth49611
      elizabeth49611 sam90709

      Posted

      Sam,

      While at the Mayo Clinic in May, I was shown what was called Postural drainage.  It requires you to be in various positions or postures so that gravity can move mucus to the center of the lungs.  I also have a flutter valve that I breath into to, it causing a vibration in the chest.

      Do you ever have to sleep in a reclining position? I sometimes have to use a 'pillow wedge' so that my head and torso is proped up.  Lying flat causes me to wheeze and cough too much.

      Keep in touch, Elizabeth

  • Stixlabushka
    Stixlabushka elizabeth49611

    Posted

    Hey.

    You gotta do airway clearance to assist your lungs getting rid of phlegm.

    Bubble pep or flutter/fludder.

    1-2 a day. 10 x 10.

    It helps clear the mucas which causes infection. Talk to a physiotherapist.

    When I'm sick i do it twice a day. Healthy once a day. You need to stay active. Go for walks it helps Loosen it too.

    Good luck

    • elizabeth49611
      elizabeth49611 Stixlabushka

      Posted

      Stixlabushka,

      I also use a flutter several times a day.  I have a vest that 'pounds' on my chest to help loosen the mucus, as well as using a nebulizer. 

      It's just a matter of keeping the lungs clear.  I exercise and do what I can around the house.

      It seems that if a person across the room sneezes,I get pneumonia. So I'm carefull about not being around sick people.

      Beth

    • Stixlabushka
      Stixlabushka elizabeth49611

      Posted

      Yeah i here ya re: sick people.

      I've had 250 days in hospital in the last 3 years. Last 10% in lung function - down to 44% i have a5 year old and had this all my life. It totally sucks.

      But I'm doing pretty well at the moment. I have to keep extra fit and i have a great team for support.

      Just keep on doing what you're doing and you'll get out of the rut.

      I used flutter, but moved to bubble pep, it worked better for me.

      Hope you get through it

    • elizabeth49611
      elizabeth49611 Stixlabushka

      Posted

      Thanks, I try to keep in shape.  You spent a lot of time in the hospital the last three years! Is it due to infections?  

      My lung function is, right now, 67%.  I can get into the low 70% when I'm healthy. I'm 66 yrs old and retired, so I can spend more time taking care of myself. I've had breathing issues for 27 yrs.

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