I need help Please!: I am so done with... - Lung Conditions C...

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I need help Please!

Sufferer197104 profile image
66 Replies

I am so done with myself now. The day I have been diagnosed with bronchiectasis, I am not getting rid of any infection.

I was diagnosed in September this year at that time it was Pseudomonas.

After that in the last two weeks of october, it was Aspergillus niger, after completing sporanox for two weeks, only 1 week was the time the infection didnt bother me, that 1 week is over now, got a fever again of about 102 degrees and hypoxic, rushed to the ER due to tachycardia, they prescribed me Azithromycin along with some necessary treatments and this drug gave me tachycardia but I continued to take it for 5 days. Now I just woke up from sleep, having chills, looked up at my thermometer and it was a fever again. My cough was dry as if the sputum is sticked to my airways, so I nebulized and what comes next? Green sputum.

I am out of my place so I cant visit my doc now.

Why is this even happening? I am not an elderly that I might have a compromised immune system. I was literally good than this position a month before being diagnosed with bronchiectasis. Please help me! I dont want to live like this. This disease is keeping me from going to college and it really hurts.

I am an 18 year old girl, and I think that this disease will shorten my life span looking at the scenario happening to me.

I look at my parents. I have never seen them so helpless as I am seeing them now. My Dad is fed up of me already. He keeps saying to leave the treatment prescribed by doctor and switch on to some herbal remedies. I didnt agree because I thought that if you all can have a good health using the treatment, why wouldn’t I?

(In my bed crying rn and having palpitations again)

Littlepom 😭😭😭 please do reply me. Looking forward to other members

help me

66 Replies
Damon1864 profile image
Damon1864Volunteer

Bless you sweetheart you keep taking the medication prescribed for you and make sure you have plenty of fluids to drink. You will get better grad you ally so try not to worry. Have a good night and take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻

teddyd profile image
teddyd

I can only speak for myself. Before being diagnosed with Bronchietasis I was very ill on and off for sometime. The diagnosis shocked me at first but also a relief that the correct treatment could be started. Azithromycin was a game changer for me along with other prescribed medication. I would not even consider stopping my meds or switching to alternative treatments.It did take time for all the meds to kick in and occasionally the routine is changed.

I am not a young person and got diagnosis later in life , but probably had the illness for a very long time. It takes time to accept and understand and take control. Dont be too hard on yourself. You can vent your feelings on this site and no one will judge you.

Take care🥰

Wheezysister profile image
Wheezysister in reply to teddyd

This is true. The correct treatment is everything. I know you're depressed now but try to hang in there and you WILL feel better. It takes time for them to get the treatment right. That was my experience. Don't worry about the future. Just take it one day at a time.

eleanordigby profile image
eleanordigby

Oh dear! You need to stop panicking and look at your situation calmly. You’re having a bad time right now. There are many young people with bronchiectasis and aspergillosis, often those like me who as kids were always ill with asthma & misdiagnosed “bronchitis” (I was 20, now 41). You probably do have low immunity right now, because you’ve been fighting off infection. So you’ve got into a cycle of repeat infection. You need the advice of your own specialist doctor about this, the ER is just a sticking plaster.

I’ve got pseudomonas too. I nebulise colistin to keep the levels down. It works well. I don’t know why you were given Sporanox for two weeks - I usually take it for several months at a time. 

Unfortunately it sounds as if you’ve another infection on top now. It’s bad luck but fixable! It needs aggressive treatment with the right antibiotics (so ignore your dad!) I was once about to leave hospital after a 3 week stay when on the last “obs” round my temperature was spiking and it turned out I’d picked up something new in hospital. So I had to stay in another 2 weeks. S**t happens, right?

Sufferer197104 profile image
Sufferer197104 in reply to eleanordigby

3 WEEKS! OMG

Thats a lot. I am glad you are better.

What do I even do. Many kids are not diagnosed with their condition and I am fortunate to have this pros. But repeatedly 4 infections in a row is a lot to me. The ER had ordered a CBC which showed I had everything normal, even the White Blood Cell count was normal. So they didn’t look me up as a serious case.

My Dad, ugh, I can’t even say anything. He has always been a fan of self medication. I have bronchiectasis due to a serious pneumonia that was being treated by my Dad and making me resistant to most of the antibiotics unless I got a fever that time I was fainted. He took me to the hospital and they said I’ve had a severe pneumonia. At that time I was 9 years old. Here I am now suffering because of that negligence

When we were heading to the ER, he repeatedly said that it was because I didn’t listen to him.

In short words I am also unfortunate to have a non supportive dad.

I wish that I get better. If my dad would be supportive I would not have been this anxious

Thanks for your advise

pacific-paradise profile image
pacific-paradise in reply to Sufferer197104

I am sorry to hear about your situation but please don’t blame your dad, he was just trying to help you at that time.

What causes bronchiectasis other than cystic fibrosis is difficult to know, really. I was diagnosed with it two years ago and I was in denial because I have never, ever had pneumonia nor bronchitis and colds? I hardly have colds as of now the las cold I had was about six years ago? and yet here I am dealing with bronchiectasis. What caused mine? No one knows.

Get well soo💐

eleanordigby profile image
eleanordigby in reply to Sufferer197104

Well, no point in blaming him now, it’ll destroy your relationship. I agree he seems to have been negligent of your health but no doubt he thought he was doing the best for you. My bronchiectasis was probably caused by two bouts of severe pneumonia as a kid, but my parents sought immediate medical help & I was treated in hospital, so I’ve no one to blame! The only thing to do now is take control, as you are doing, and be proactive. Don’t feel like a victim. And rely on your specialist’s advice. Reading the thread, he seems to know what he’s doing 😊

Patk1 profile image
Patk1

Uv had gd advice.get a sputum sample put in tomoz.it may well b yr antibiotics arent clearing infections,just damping thm down.talk to dr and discuss a longer course and see how u are then.Ru doing dedicated lung clearance sessions x twice every day?

Btw I daren't cry,as with severe bronchiectasis and multiple other lung diseases, I'd be unable to breathe! Truly.

Life's NOT fair but u have to get on with the hand yr given x

Sufferer197104 profile image
Sufferer197104 in reply to Patk1

lung clearance is done at least 3-4 times a day. I dont feel comfortable by wheezing or crackling in my lungs so continue to do it

I also agree that azithromycin is not working for me.

Thanks

Patk1 profile image
Patk1 in reply to Sufferer197104

Good that u clear it often.im same,I clear 2hrly.youll get there.it is hard..do get yr sample in+ discuss with dr.Keep in touch by Snapchat etc with friends,maybe talk to tutor+ see what coursework u can do at home.

Re wheezing etc,perhaps u need more ventolin/ salbutamol to ease that.do u have 'ventolin nebulisers? That would help open airways+ also make lung clearance easier.lotsaluv, you'll get there

Rest up xxx

Oshgosh profile image
Oshgosh

XXXXX.

Will post tomorrow.PLEASE keep taking your medication x

craftyone profile image
craftyone in reply to Oshgosh

I'm so sorry you are having to go through this at such a young age but keep fighting and never give up. Your dad is wrong but you know this deep down, only go with what your consultant says and if you're not feeling you are getting the correct treatment tell them, don't take any crap off anyone, stand you're ground. I know it's easier said than done when you are so ill. We all get to a point where we feel like we can't carry on with a life of illness but believe me you will come through this and wonder why you felt like this. You have a future in front of you. Please don't ever give up keep fighting. You can vent your anger and feelings on here. There's always someone here to listen and chat with. Sending you a huge hug x

Sufferer197104 profile image
Sufferer197104 in reply to craftyone

thanks for ur kind words I appreciate ur support x

craftyone profile image
craftyone in reply to Sufferer197104

I'm here anytime you need to chat x

Littlepom profile image
Littlepom in reply to craftyone

A really good reply! We have to be so tough, taking charge if ourselves and the medics!

craftyone profile image
craftyone in reply to Littlepom

Never take crap from anyone, always stand you're ground and voice your opinion. I'm in a wheelchair it makes me laugh when I'm told to take a seat, my reply is I'll park up where would you like me to take the seat to. That is just my sick sense of humour lol x

Littlepom profile image
Littlepom in reply to craftyone

Lovely 💖

Littlepom profile image
Littlepom

Hi Sufferer. I'm sorry that you are in such a mess. It can be very frightening. I don't have a crystal ball and I am not a doctor and so cannot tell you why you are ill with fevers and bad sputum right now.I can make some observations.

Two weeks treatment is nowhere near enough for aspergillus. This needs specialist ongoing treatment. Aspergillus can make you more acutely ill than bacteria and the fever could indicate that it has taken hold.

Azithromycin is not a treatment for a pseudomonas exacerbation. It is not very effective against it. It is a useful anti inflammatory which helps to deter pseudomonas in patients who are stable, mostly those with copd.

Trips to a&e are no use because they just throw something at you and send you home. You would be lucky indeed if you saw a doc in a&e who knew anything about bronch let alone fungal infection in the lungs.

Your symptoms, particularly the fever, sound as though you either have a problem with the aspergillus or you have a virus. There are a lot of chest viruses about and when we catch one it can very quickly result in a bronch exacerbation.

Have you done a covid test?

You have been talking about your 'doc' since we first spoke but I have not been able to find out from you if this is your GP or a bronch specialist. All of us with bronchiectasis need to be under the care of a bronch specialist as GPs do not have enough training in it. Also, in a situation like this you could phone their secretary and get help from them. They could also treat your aspergillus properly or have access to fungal experts who can.

If you have a bronch specialist please call them. If not, you need to find one by looking at the website of a big teaching hospital near you, finding a name and insisting that your GP refer you.

Your father should be helping you in this instead of continuing with his lifelong negligence of your health. If bunches of leaves could cure bronchiectasis exacerbations or fungus infections there would be a lot if happy ex bronchs leaving this forum. His attitude is ridiculous and dangerous. There I will stop in my opinion of him or I will get myself into trouble.

It needs expert medical and drug treatment and also management from you.

First of all panicking will get you nowhere. You alone have to take control.

Do a covid test.

Take some paracetamol for your fever

Get the rubbish mucus out of your lungs. No matter how much there is, keep coughing it up.

If you have a bronch consultant at a hospital call their secretary.

If not, get back to the doctor who has been treating you asap.

I cannot tell you if this is the aspergillus, or a virus which has set off the bronch.

Aspergillus will need treating

Viruses are vile and unfortunately we just have to ride them out and watch out for them setting off the bronch..

Keep taking the drug that you have been given.

Get to your doctor.

Make sure that you have a bronch specialist.

Ignore your Dad and tell him to grow up and wise up from me!

Sufferer197104 profile image
Sufferer197104 in reply to Littlepom

I was eagerly waiting for your reply. Thankyou. Yes my doc is a bronch specialist.

I dont know what to do. We are currently out of our place so I visited the emergency rather than starting a treatment from a doctor

I asked the same question from my doc regarding Aspergillus. He said that I have a different strain that is Aspergillus niger and most patients who receive months of anti fungal treatment are affected with Aspergillus furmigatus. He also added that the strain I got is a natural flora, and I might got it because of using prednisone as it is immunosuppressant. He said that after two weeks, my immune system would itself fight this strain after returning back to its position.

Ive not had covid up till now. So this frightens me. Anyways. I will speak my doc about having the covid test.

Littlepom profile image
Littlepom in reply to Sufferer197104

Send your Dad to buy some lateral flow tests this morning and do one. Even if you are 'out of your place' you should be able to talk to your doctor by telephone. They do appear to know what they are talking about.

If you are taking azithromycin given to you by the a&e your doc may decide that you need a different antibiotic to cover you in case your bronch is set off by a virus that is making you ill now.

It really does seem to be a virus to me but it is your doctor's advice that is important.

Sometimes we just have to be patient. Keep clearing your chest, taking paracetamol and talk to your doctor as soon as you can.

And calm down. We live with this. We ride out its waves and troughs and do our best to avoid other people's germs. I have been managing my bronch through a very full life since I was 6 years old and I'm still feisty and kicking.

Sufferer197104 profile image
Sufferer197104 in reply to Littlepom

The amount of sputum I have is really insignificant. Bronch exacerbation often have a lot of sputum maybe 🤔

Thankyou for your reply

Littlepom profile image
Littlepom in reply to Sufferer197104

Yes they do and that indicates to me that you have a virus. Earlier in the post you said that you have bad sputum. So which is it? Do a covid test just in case. If you don't have covid you will just have to ride out the virus and watch out for signs of the bronch revving up. Garshe just gave you some very good advice.You did not get bronch overnight. You have been living with it for years before you got a diagnosis. Now you have a good bronch doctor and the means to learn to control it on a daily basis. That is a positive.

There is no point in getting frustrated that you are different to others at your college or that you have to take time off when you are unwell. Whatever we have we just have to deal with it. I have lived my whole life like that. My grandaughter is type 1 diabetic and your age. She was diagnosed when she was 13. Managing her condition is a 24 hr a day process involving a pump and monitor atrached to her and the constant need to access her insulin wherever she is. She started uni 6 hrs away from us in September. I have never heard her complain and she just gets on and does it. I am sorry if I sound harsh. I understand the frustration and the scariness and many is the time that I have silently shouted 'why me'. But panicking when you hit a bump in the road will not help you come to terms with the way that you need to manage your condition so that you get the best out of life.

By the way, my own consultant who is at the top of her tree told me this week that her bronch patients who have caught covid haven't been very ill, none have been hospitalised and none have circulatory problems or long covid. So a good reason not to worry too much about it.

Sufferer197104 profile image
Sufferer197104 in reply to Littlepom

Nah you dont sound harsh at all. The way you explain a situation is the reason I’ve mentioned you specifically in my post. Thankyou very much for sharing your grand daughter’s situation. I am lucky to have your support. Much love

Sufferer

Littlepom profile image
Littlepom in reply to Sufferer197104

And much love to you. Your parents are out of their depth and not supportive but you have a whole massive family here who CAN say that we know what it feels like and that we are here for you. Even if that means a bit of tough love at times. You will get on top of this and it will eventually just become part of how you manage your days not in charge of you and your emotions. X

sassy59 profile image
sassy59 in reply to Littlepom

👍😘 as always, a great reply Littlepom. Xxx❤️

garshe profile image
garshe

Sounds like you are suffering from Health Anxiety. You need to calm down and not panic. Concentrating on your illness make symptoms worse. Try and concentrate on The Positive side and that there are others worse off.

I hope you get sorted as you are very young and need to get on with your life. Good Luck..🙏💕⚘

Sufferer197104 profile image
Sufferer197104 in reply to garshe

Health anxiety is somehow related to my aggravated symptoms of bronchiectasis. When I am ill, I do get anxious. But when I am not, I am perfectly fine.

After your advise I tried not to think about my illness and practiced meditation. I felt a lot better. Thanks a lot

garshe profile image
garshe in reply to Sufferer197104

I know it's not easy but please try and concentrate on what you can do not what you cant We all have our problems and are here to help you if needed. Cant give medical advice but will always support you. Take care and sending . Welsh cwtches, (hugs) hopefully you can talk to someone and get help. We all need support from time to time Good luck. If you feel down we will talk to you,never suffer in silence. 👍🙏💕⚘

guytane profile image
guytane

Get an air phsyio of amazon it wil bring all the infectios mucus out you r lungs if not removed it wil sit their thatss wit causes infection not to go

Wonderboy6 profile image
Wonderboy6

Hey, lots of years go into the study of medicine, lots of expensive research, all combined to work for you 😀 whatever they prescribed for you, they must think it will work,please, be patient and give it all the time it will need to work for you. Ddont give up, you are only eighteen. I am 74 and have been fighting my illnesses for 40 years, wishing you all the luck in the world 🌎

Sufferer197104 profile image
Sufferer197104 in reply to Wonderboy6

Thanks Wonderboy6

busygardener profile image
busygardener

good morning,i am so sorry to read that you are having rough time,you have received a lot of good advice .I had pneumonia at 5yrs old and got asthma at 7yrs old was in and out of hospital until i was 12 yrs old.I then was in and out of hospital with asthma and bronchitis until i was 24yrs old .Everything then settled down until i was 55yrs old .Your lungs do not fully form until you are about 24 yrs old .There is light at the end of the tunnel and things will get sorted as people have said .A lot of it is trial and error and you will get to know your body ,do as the medics say ,night time is always the worse,when its dark and you are on your own .There may be a local breathe easy group you can go to ,to chat .Good luck xx

Sufferer197104 profile image
Sufferer197104 in reply to busygardener

Thank you very much. I got a relief after reading this.

Egpa profile image
Egpa

Hi, do you have an AerobiKA or a flouter to help bring up the much. I find ventolin then saline through a nebuliser fostar which consultant gave me and then I use my AerobiKA each morning. Your sputum however small amount needs to be check for bugs. I have had mine changed lots of times. Last bad infection I had went on for ever. Until they found the correct meds to kill the bug. Stay with it can take a few weeks for meds to kick in. You are not alone we have all Been through it after one time or another. You will get better in time, try to say calm and drink plenty of water. Take care and srag safe.

Sufferer197104 profile image
Sufferer197104 in reply to Egpa

I don’t have any of these devices you’ve named. I’ve heard about them that it eases to loosen up phlegm. I am considering having it.

I am drinking lots of water. Thanks for your support

Egpa profile image
Egpa in reply to Sufferer197104

Ask your GP he gave me the Flutter and consultant at hospital gave me the AerobiKA , I should ask if you want to give it a go. Good luck.

Lfcpremier profile image
Lfcpremier

Hi there. So scary for you & quite daunting at such a young age. You do need to try to calm down though & not allow stress to make things worse.Interested in your lung clearance. Most of us take 2x2 Carbocysteine. For me it's followed with ventolin to open the Airways & then nebulising 7% saline, ending up with lung clearance.

Initially I had severe pneumonia & continuous infections until started on azithromycin. It can be sorted & stabilised with the correct treatment. Good luck! 💕

Sufferer197104 profile image
Sufferer197104 in reply to Lfcpremier

Thankyouuu

Bogart24 profile image
Bogart24

I was diagnosed with broncheictasis at 21 psudemonas 12 years ago I am now 76 please do not give up Albert

Sufferer197104 profile image
Sufferer197104 in reply to Bogart24

Thank you

helenlw7 profile image
helenlw7

I’m so sorry to hear how poorly you’re feeling. I think you should keep taking the prescribed meds, but also drink plenty of fluids and rest. I’ve had bronchiecstasis since I was a child but not diagnosed until 2012, after many chest infections. Eventually I got put on Azithromycin about 6 years ago. I’ve only had 1 chest infection since then.

Gentle hug
Sufferer197104 profile image
Sufferer197104 in reply to helenlw7

Thanks for your 👻 hug 😄

LissacFrance profile image
LissacFrance

Hi,

My wife damaged her lung whe she was 10 years old, having fallen off a low building. Collapsed lung, pleurisy etc. After a serious infection when about your age was told by Doctor that she had beonchiectasis and to make sure she drank plenty of water and took plenty of exercise. Together we were involved with Scouts and Cubs and associated activities. That was 50 years ago!!

She started to get out of breath about 6-7 years ago and visited numerous so-called speecialists who prescribed inhalers for Asthma etc. etc.

4 years ago she found someone who finally said Bronchiectasis, and prescribed Azithro 3x per week and physiotherapy 3x per week, not forgetting to drink plenty and take as much exercise as possible. She takes our 2 dogs out at least 3x per day for about 1/2 mile each time. We try to play table tennis each day, even if wearing coat and gloves in winter. She has had very few other infections during last 4 years apart from having Covid last April. Symptoms were no worse than her usual coughing and spluttering.

So, my advice for what it is worth is keep taking the Azithro, drink plenty of water, and take some exercise, outdoors in fresh air. Staying in bed does not help long term, and Bronchiectasis is long term but can be managed.

Take care, look forward to reading you in 10 years time. Chris from France.

Sufferer197104 profile image
Sufferer197104 in reply to LissacFrance

This is a very helpful advise. I will surely try to get more active as I beat this current infection. Thanks

Lutontown profile image
Lutontown

Have you had your sputum tested? You must have the right antibiotic that will knock the particular bug that has invaded you, on the head. May even need an intravenous AB. Azithromycin gave me a terribly sore mouth. Check your home for Black Mould. Since eradicating Black Mould from our bathroom in March 2018, I've not had a chest infection, apart from a bout of pneumonia and pleurisy which put me in hospital. I was diagnosed with Bi-basal Bronchiectasis in Nov 2014, which was after 8 months of infection by Staphylloccus Aureus bug, which oral AB would not shift. An IV AB sorted it in the end, after CT scan showed the B-B Bronch. Don't despair, but you must be seen by a lung specialist at your hospital.

Sufferer197104 profile image
Sufferer197104 in reply to Lutontown

My home is surrounded with greenery, trees etc and I do have some birds. Do you think this could be the reason? Well, where does black mold inhabit itself?

Lutontown profile image
Lutontown in reply to Sufferer197104

Black Mould grows in damp warm conditions. In March 2018, we had the bath replaced by a walk -in shower, and when the bath was removed we found the chipboard floor covered with Black Mould. It was under the plastic floor tiles. We had to replace 70% of the floor. So, look anywhere where you could have a water leak, like bathroom and kitchen. If you have a tank in your loft, leaks are possible there, and a leaky roof is possible cause. I keep taking my antihystamine into mid October when I think mould spore season has finished. I believe you can buy a device which will detect Mould, not much money. In 2016 I had loads of chest infections, so I kept a diary in 2017 and counted 18 chest infections.

Straddie profile image
Straddie

the best advice is to try not to panic. Easier said than done I know. But you will hyperventilate if you do and that makes it worse. Try to breathe in, hold your breath for a second and out slowly pursing your lips as though you are blowing through a straw. Keep doing that and the palpitations will go. Also crying makes it harder to breathe so try not to (believe me, I know all this is easier said than done). Have you an oximeter to check your oxygen levels? If not, buy one.

Ask your GP for an anti-anxiety pill and a nebuliser. The nebuliser made a big difference to me with exacerbations. It’s also an important tool to manage panic. If I feel a rising sense of panic, i take as many puffs of ventalin as I can, thenI deep breathing and head for the ventilator. Knowing I have steps to take helps a lot. It helps me feel I have some control.

It will get better. But, oh, how I feel for you.

Sufferer197104 profile image
Sufferer197104 in reply to Straddie

I have both an oximeter and a nebuliser. I cant use that much of ventolin as it increases my heart-rate but yes, a small amount does creates a difference. Thanks a lot.

Straddie profile image
Straddie

I am glad you have the nebuliser. Do you use mucoclear as well as ventalin in the nebuliser? That helps loosen the phlegm. Perhaps ask if you can go on a pulmonary rehab course. I have found that very helpful.

Sufferer197104 profile image
Sufferer197104 in reply to Straddie

I nebulize with ipratropium bromide and beclomethasone+ salbutamol in saline. Salbutamol is ventolin ig and it mostly helps loosen up the sputum. Never heard of mucoclear. I’ll google it.

rossiedavid profile image
rossiedavid

Hi there

My daughter has bronchiectasis & was diagnosed 5 years ago & is also a kidney transplant patient,so she has a very low immune system.

She has had various infections over the last 5 years,including pseudomonas .

She nebulises daily with Colymycin which is a preventative for pseudomonas & she takes other preventative medication (Azithromycin & co- trimoxazole)She also uses a Relva Elipta inhaler daily & takes Carbocistine to thin & loosen mucus.

It’s intense regime but it tends to work.

To identify the infection you’ve currently got,you need to do a sputum sample & if this doesn’t identify the bug,discuss having a bronchcosopy with your doctor

In the meantime start your rescue pack.

Until your bronchiectasis is better managed ,you will continue to get infections, but once you have a better managed regime,these will be less common.

Last year she was in hospital with Nocardia & Streptococcal pneumonia & caught Covid in hospital,so needed 3 weeks of IV in hospital & 3 weeks when returning home,but has had no more infections for the last 9 months.

In the 5 years since she’s had bronchiectasis,she’s only been hospitalised twice.

(Just to say she had another successful kidney transplant in September, so don’t give up on your current situation..modern medicine is a wonderful thing)

Good management & a Bronchiectasis Consultant is key.

Sufferer197104 profile image
Sufferer197104 in reply to rossiedavid

Thankyou for these suggestions. I will submit a sample tomorrow morning. Lets see what happens.

Blackcat99 profile image
Blackcat99

Oh, I’m so sorry for you, love, and I remember quite well the panicky - and very resentful - feelings which I had when I got my diagnosis. I thought it was going to be the end of an active life.

The difference was that it was later explained to me that my bronchiectasis was almost certainly the result of having had long-term tuberculosis as a teenager, and that I had probably had it ever since then. Since I was in my late 60s at that time, this meant that I’d been carrying on with life, including having two children, and doing a lot of high-level hill walking, while blissfully unaware of the bronchiectasis. I’d had numerous chest infections over the years, but always pulled through.

Eventually, I realised that the only real difference the diagnosis would make would be early access to antibiotics if I did get an infection or flare-up, plus my own awareness of the need to be more sensible about exposing myself to risk. Since then, I’ve had a lot fewer flare-ups, and have still managed a pretty active lifestyle. Will be 77 tomorrow.

Sorry that this is so long-winded - just trying to say that your diagnosis is by no means the end of a full and fun lifestyle. Keep taking your meds, which may take some time to kick in, then ask if there are any pulmonary rehabilitation classes in your area, where you can get support from specialist nurses and physios ( I found these to be a big help)

Good luck, and keep in touch with us all on the forum, let us know how things are going for you, please?

Sufferer197104 profile image
Sufferer197104 in reply to Blackcat99

yes I’ll surely keep in touch. I’ve given the sputum for testing. Fingers crossed😔

Blackcat99 profile image
Blackcat99 in reply to Sufferer197104

Keeping mine crossed for you too! 🤞😉

Timberman profile image
Timberman

Hi young one. Very sad to find you here among all us crocks. But I have been reading up on both your problems. Pseudomonas is hard to get rid of but it is a disease and with the right treatment it is expected to be cured. So I would push for a second opinion and perhaps as a result get a different medication.

Now, bronchiectasis I know more about since I have it, along with severe emphysema. But I am 79 and have been ill with both for 15 years. So I checked and bronchiectasis's in the young like you is reversible, again with the right treatment. So again a second opinion should help.

What I read suggests that in one so young this disease is the result of a genetic issue, although lifestyle can have an effect. Drugs, and especially cannabis are advised against. It is also highly probably that you already had the bronchiectasis when you contracted pseudomonas. The damaged cilia in your airways will have left mucus behind and this may have simply become infected. Get control of one and the other may be resolvable.

No, to controlling bronchiectasis - have you heard of 'hurr ' breathing? What you do is make a hurring noise in your throat as you breath out. This will vibrate you airways and help clear the mucus. It can be a bit unpleasant frankly but clearing the gunk is essential. I do it every morning and usually twice in the day - about 6-10 breaths usually gets what i shall politely call a decent cough!

There is also a device you can buy called a reverberator which vibrates the air as you breath it in. I have not tried this but those who have says it helps.

So to being 18 and facing the problems you have. I can help only in this way - Positive Mental Attitude is everything in fighting disease of any sort and at any age.

20 years ago I was given 3 months to live. Leukemia! I had two chemo session but the second went wrong. Fortunately I had a blood brother and he provided a quantity of T-cells - the things that make our immune system. I had an allogenic bone marrow transplant and here I still am!

I am not saying it was easy but being positive, laughing at the problems, doing everything I wanted regardless worked wonders. It still does.

I am now on oxygen and to be honest I know the end cannot be that far away. But I shall be 80 soon and that is not a bad innings.

My bet is you too will one day be 80 and look back on all this as a bad dream that happened to make you stronger. Good luck and chin up - and remember: today is the tomorrow you worried about yesterday!

Sufferer197104 profile image
Sufferer197104 in reply to Timberman

You’re a tough survivor. I hope you stay healthy

Coming towards pseudomonas, when I had my last sputum culture, If I had pseudomonas on a significant level, it must have shown it. But my culture had only grown Aspergillus niger, which didnt seem to be a problem towards my consultant. Anyways let’s see what happen after this culture. I hope I am not seriously infected again.

Timberman profile image
Timberman in reply to Sufferer197104

Sounds like things may be improving for you. I really hope so. The very best wishes.

rossiedavid profile image
rossiedavid

my daughter was 45 in June , but has had kidney disease since she was 3 years old

Alberta56 profile image
Alberta56

Hello! I hope you will not be suffering for too much longer. 3 years ago I was getting recurrent chest infections and couching up enough green sputum to float the Titanic. A proper diagnosis and the right treatment mean that now I am avoiding both bad infections and sputum. I found my AeroBika very helpful when I was bad and Pulmonary Rehab was the other thing which helped a lot. Good luck. You will get over this. xxx

YummyBear profile image
YummyBear

Scientists have found that Manuka Honey has the potential to kill a number of drug resistant bacterial infections such as Mycobacterium abscessus – which usually affects patients with cystic fibrosis or Bronchiectasis.May be worth reading 'Bronchiectasis Taming & Feeling Better' from Amazon.

Has your doctor advised you to use an inhaler?

Reading4everyone profile image
Reading4everyone

Hello fellow sufferer, I have every sympathy with you as I was self diagnosed at 21. I understand your anxiety as you are young and you want to get on with your life and you will. Patience is required and I am still trying to develop patience at the age of 76. Now turn your anxiety and anger into a mission to demand treatment from the professionals. You have to be assertive but polite which is not easy when you feel so unwell. One point about azithromycin which many people can tolerate and it really helps them. I tried it but like you it made my pulse race and made me really anxious so I had to reluctantly stop it after talking to my doctor. I hope you very soon start to feel better. Very best wishes Marlybee.

Sufferer197104 profile image
Sufferer197104 in reply to Reading4everyone

thankyou

cofdrop-UK profile image
cofdrop-UK

Hi Sufferer or should I really call you ‘tough survivor’ because that is what you are, and will realise you are once you become more in control of bronch than it is of you. I didn’t have to come to terms with diagnosis as I have had bronch since I was a 5 month old baby In 1948. I am in hospital at the moment and so will keep this short and get i terupted and the wifi is a bit arsy.

You have some good advice from your BLF/aluk family. Sorry to hear of the situation with your dad. Whilst alternative and self medicating can have its place in very minor stuff bronch is certainly not one of them. I have never seen a paramedic turning up to an rta dangling crytals! I hope his attitude comes from fear or ignorance and it is up to you, now as an adult, to educate him.

Btw pseudomonas is not as stated a disease but is a gram negative bacterium. The first time it is found they will attempt to eradicate it but often a person will become colonised. This means it will lurk in low enough numbers not to make you feel ill, but will then come out to party. Many folks have treatments like low dose antibiotic 3 or 5 times a week or nebulise antibiotics. Unfortunately I can’t tolerate any of them and so IVs have to be my go to.

Also bronchiectasis is not reversible no matter young or old. The dilation damage has already been done. I’m not trying to upset you but facts are facts and need to be accurate. If damage if concentrated to one lung then surgery may well be considered but not very common. In my day (old lass) they did lobectomies even in bi lateral bronch sometimes, and I had one when I was 15. I have no way of knowing if this had a positive effect or not as the good lung fills up the space and it’s not something I think about.

I am glad you have a consultant who specialises in bronch but still gain as much knowledge as you can and make sure as you gain knowledge you feel your con is up to speed and that you are confident in them and feel supported.

Continue to do all the stuff we have to do to help ourselves but don’t forget once you get over this latest hurdle to have a good life with your friends and have some fun. I will put a link in a separate Post in case I lose this.

Good luck and this phase will pass.

C💕💕💕

cofdrop-UK profile image
cofdrop-UK

btw it is not always genetic either in the young. It can be caused by an insult as it was in my case - double pneumonia and whooping cough as a baby and measles at 19.

Been interupted so many times since starting this physios nurses docs next but no complaints.

Here’s the link. Take your time with it and perhaps dop in and out. Leave time for enjoyment.

europeanlunginfo.org/bronch...

Lots of love

💕💕💕

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