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pseudomonas Again!

Warrior4104 profile image
13 Replies

I had my last pseudomonas colonization around 20 days ago which included treatment with ceftazidime iv along woth ciprofloxacin for 14 days. 5 days ago things were settled until I got a low grade fever below 101 after that I visited my doc and he prescribed me levofloxacin and said it is not possible for a pseudomonas exacerbation to be this frequent and its cause is something else. Anyway I kept taking levofloxacin along with my asthma meds. 5 days of it over and my fever still didnt go. But the report of sputum culture did come. Boom! Pseudomonas again. And heavy growth like that of 20 days ago. It is really frustrating for me to handle all this treatment of Iv and all as I am a teenager. It feels like my life is stopped. Everyone of my age is planning their lives ahead, focusing on their college and I am here fighting this pseudomonas recurrently. I am just fed up. Today is again an appointment with the doctor and I am sure he would prescribe me iv plus oral as this is the only way. The level of my depression is that I start to get suicidal thoughts. I just dont want to take any medications. I am just 19 years old. The consequences of these repeated antibiotics make me fear that what will happen to my kidneys and liver when I reach my thirties? Will I survive this recurrent pseudomonas😭 Any words of you might help me now. Thanks

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Warrior4104
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13 Replies

bronchiectasis is so complex and needs the care of a bronchietasis specialist. Pseudomonas is also a problem in that it is always present once you have had it, even if the numbers are too low to show on a plate. Obviously they have grown again very quickly which probably means that the ceftazidime did not actually knock it on the head enough. I will remind you that you do need to scrupulously empty your lungs of mucus every day, to deprive the germs of the lovely warm wet environment that they love to breed in. Your doc has tried their best but they are out of their depth with you. The doc and you need the expertise of a bronch specialist. There are other IV drugs which may be more effective and maybe other bugs which are not showing up on the lab plate.

I have had bronch all of my life and I do sympathise with you when an exacerbation like this is stopping you getting on with your life. If you have a bronch specialist, (NOT a general respiratory consultant as they know very little about it) phone their secretary and tell them that you are in trouble and ask for the consultant to contact you.

If you do not have a bronch specialist, search for one in your area, usually at big teaching hospitals. Take the name to your doc and insist on a referral. Talk to your doc and tell them that this situation has proved too much for them to deal with, that you cannot go on like this and that you need a specialist who has more treatments and services at their fingertips. Good luck. I for one really can say that I know how it feels and I am thinking about you.

Warrior4104 profile image
Warrior4104 in reply to

After getting the antibiotics, I have been coughing up mucus alot that it started to strain my ribs and I get a headache due to excessive coughing. But what I thought that at least it will prevent the pseudomonas to cause an infection again. But of no use😭 I am also having a headache now and I am overly stressed. My doc is a bronch specialist. What am I supposed to do now. I have no idea. My parent and I are so stressed out about what to do next. Anyway have an appointment in the evening. Will see what the doc advises further

in reply to Warrior4104

you shouldn't need to cough really hard to get the mucus out. Nebulising saline ir taking carbocysteine ( if you can tolerate the drug) should help thin it. Breathing and expulsion tecniques help to ease the mucus out rather than forcing it. If your doc is a bronch specialist they should have their own physio to teach you the breathing etc. It would be a good idea to ask about that tonight.

Warrior4104 profile image
Warrior4104 in reply to

I surely will. Thankyou Little pom for your support. It means a lot 🫶

Redrum46 profile image
Redrum46 in reply to Warrior4104

Totally agree with warrior philosophy will help thy came out to me and really got mucus moving and my breathing mutch better the Visio all so said to ring any time in future for help

sassy59 profile image
sassy59

When I saw you’d had one reply Sufferer I was hoping it would be from Littlepom. Fortunately it was. I just want to say that I hope things will improve for you with different treatment.

Thinking of you. Xxx

Warrior4104 profile image
Warrior4104 in reply to sassy59

Thank you so much

cofdrop-UK profile image
cofdrop-UK

Hi Sufferer, Good advice, as always from Littlepom. I too am a person with bronch from babyhood and As such can and do empathise how difficult it is to deal with at your age. As LP says it is important to contact your consultant as s/he should be on the case with the correct treatment and referrals to resp physio. On the positive side, there is more research (long overdue and nit high enough on the list of priorities) specifically for bronch and the range of management tools available to your cons and yourself have improved. Also so much more information and support online.

If it were me, given your recent history both physically and emotionally, which don’t appear to be managed by your gp and that’s nit surprising given the complexity of bronch with pseudo involved, I would be contacting cons sec like a shot.

Hope you get sorted and start to feel better soon. Please let us know. We will virtually be holding your hand with complete understanding. You are not alone.

💕💕❣️

Redrum46 profile image
Redrum46

you will get better I started as a baby with lung infection to bronchitis been wear you are and had hop at 13 I’m still hear at 76. With right special it’s and keep lung clean as you can gabardine are good for that help you get mucus up keep fighting we are hear for you

GintyFerguson profile image
GintyFerguson

I really feel for you. You just want to get on with your young life. Please tell your GP if you are having suicidal thoughts and there are also helplines for people feeling down like Breathing Space and Samaratins. Just get all the psychological support you need. It's half the battle.

I've had bronch for 16 years and had many recurring infections, including pseudomonas . I've lost count of the number of courses of antibiotics I've swallowed and am none the worse for them except a bit of tinnitus! I have had ivs just once.

I've not had a recurrence of pseudomonas in about 12 years. At at time ciprofloxacin dealt it a hefty blow. I too recommend proper physio advice for good chest clearance . Personally, I take supplements such as zinc, vit c, evening primrose oil and vit D. For the past two years I have been well but it's easy for me to avoid crowded places and under 5s (who carry bugs that us bronchs need to avoid) .

In my view coping with bronch is as much about managing the condition through lifestyle , diet and exercise as much as it is about drugs .

Good luck and if it's any comfort I remember feeling very desperate after a succession of infections and thought this is my life now.....and it wasn't. Your mind is your greatest ally.

Morrison10 profile image
Morrison10

I’ve had bronchiectasis very many years, because of rare condition PCD born with. now 87 plagued by pseudomonas but still on my feet! I had to find my consultant by looking on line at interests of all respiratory consultants in my area. GP not best person, need specialist advice. Good luck x

MoyB profile image
MoyB

Our friends on here have already said more helpful things than I can, so I'm sending you virtual hugs instead ((((( ❤️))))). You're not alone with this. Xx Moy

Oshgosh profile image
Oshgosh

xx

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