Aspergillosis and Hyperinflated lungs. - Lung Conditions C...

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Aspergillosis and Hyperinflated lungs.

Mavary profile image
36 Replies

hi guys i would just like to tell you my problems and hope there’s someone on here to give me some of they’re wisdom. Sorry it’s a long post.

I started coughing six weeks ago. After a few days I consulted the Dr and he prescribed Antibiotics. However I still kept coughing. I went back after finishing the last dose of Amoxicillan. He then gave me Doxycycline which again had no effect on me. I went back and he said there was no point in giving me more antibiotics and sent me for an X-ray and a blood test. It was left like that I was then told I have a flare up of Aspergillosis, my lungs are also hyperinflated and I’ve got interstitial scarring which has spread slightly. I had one Dr said I have Pulmonary Fibrosis and it’s spread to the lining of the lung and another looked at her notes and said she can see nothing there to suggest I’ve got it. Now I don’t know what to think. My Husband had IPF and I lost him eight and a half years ago so I know quite a bit about it.

I spoke to the practice nurse a couple of days ago and told her I need steroids. I had a bit of a fight to get them but eventually after reading my last admission into hospital she agreed. The thing is I just wasn’t getting better and felt weak doing anything. I had a wash a few days ago and I couldn’t even hold my head up. I knew then I needed more help. Id also woke up in the morning and couldn’t breathe. It was that that sent me into hospital last time when I passed out. That’s when they discovered the Aspergillosis. I’ve still got a cough but I’m not coughing up so much mucus. I’ve got a bit more energy now but still not too good.

has anyone had this and is there anything more I can do to help myself. Or can anything more be done.

36 Replies
eleanordigby profile image
eleanordigby

new member here so I don’t know you! but I haven’t aspergillosis too, it can make you feel very ill. I am taking antifungals, had this been suggested to you?

Mavary profile image
Mavary in reply to eleanordigby

yes I’m on Itraconazole. I’m better than I was after being on steroids for three day. I’ve got two more days to go. But I feel so weak. I don’t want to do anything.

peege profile image
peege

Hi Mavis, I'm so sorry to read that you've been so weak and poorly. I recall that you've had aspergillosis for some time now. I cant help reading between the lines and I'm wondering if you've had the care you both need and deserve for it. I'm sure you should have been on antifungal, the only way to control aspergillus flare up.

do you have the strength to call the helpline for a chat and guidance on what you should ask your medics about? I'm just so sorry, you must have been feeling absolutelyawful for some time.

please call them tomorrow ; 0300 222 5800 - 9 to5 - Monday to Friday , have a notebook and pencil handy.

thinkof you , sending love and a gentle hug, Penelope

Mavary profile image
Mavary in reply to peege

Thank Penelope. I went on the call line before talking to the practice nurse. She wasn’t happy that I had spoken to her. She said so you’re taking the word of someone who is not qualified. I told her I needed advice and I couldn’t get in the surgery this morning I had coughed up slight blood and when I went for a wash I couldn’t even hold my head up. . She asked where the paperwork was that came from this person. I was getting quite angry by then. The BLF which is what she should know it by is probably more trained than her and I nearly said so. Anyway I was the one who asked for the steroids because I knew I needed them. I was getting worse. I even rang the Osteoporosis group first. I’ve got seven spinal fractures and it was steroids when I had them last time for Aspergillosis that caused the fractures. But they told me because I’m on bone medication I should be ok. They’ve done tests on people and it’s come out fine. I got over the last bout of Aspergillosis and this has been a new flare which I’ve had for six weeks now. I definitely feel better with the steroids. I can do a bit now. I got up yesterday and got myself ready. I went down the High Street in the afternoon. On my scooter so I wouldn’t have to walk. I went into Edinburgh Woolen Mills and when I was walking around I knew it was too much for me. I called in the butchers on the way home then went straight home. It’s just taking so long.

Mavary profile image
Mavary in reply to Mavary

xxx

peege profile image
peege in reply to Mavary

gosh unbelievable that she didn't know about the BLF and that qualified professionals are on the helpline. Mind you my GP and a respiratory nurse didn't know either a few tears ago. I even took BLF leaflets in for the surgery for other patients but they never put them out 9r even one on th notice board. I'm sorry she treated you like that especially when you're ill. Grrrr, where's the empathy

I think you overdid it today althoughI can see you were desperate for a changeof scenery. Do take care and let us know how you get on and when you feel better ××××

Mavary profile image
Mavary in reply to peege

That was yesterday I did that. It was the steroids gave me a good feeling but it was mostly in the morning. By the afternoon I was flaked out. She was fine after she said she had read my notes. I like to know things and speaking to the BLF and the Osteoporosis Society arm me for talking to people like that. We are lucky in this day and age that we can find out things but the medical profession doesn’t like us doing it. The BLF wanted me to phone 999 because I had coughed up blood but I knew it was the fungal infection that caused it. Besides it was such a tiny little bit. Certainly not enough to worry about. Had I not looked up about Aspergillosis it probably would have worried a lot more. Since being on the steroids though I’m not coughing so much and not coughing up the mucus so much. And I feel stronger.

Hope you are keeping quite well. Mavis. Xxx

CDPO16 profile image
CDPO16

Sorry that I can't help with any of this, just wanted to send you my best wishes. Peege has a good suggestion to ring the help line. I hope you get the help you need.

Mavary profile image
Mavary in reply to CDPO16

Aww! Thank you. I never knew about it until I had a bad attack four years ago although looking back I can see points in my life when it’s possible it reared it’s ugly head and nobody realised what it was.

clare86 profile image
clare86

hi,

I was diagnosed with Aspergillosis a few weeks ago by bronchoscopy as no one could understand what was driving severe shortness of breath and mucus plugs all the time. My biopsies and samples showed it. Then the samples weee sent to a very specialist lab for a few weeks to work out what treatment would clear it. I started the 16 week trial on Tuesday.

You need a specialist referral and a bronchoscopy organised to get anywhere.

Hope you can get help

Mavary profile image
Mavary in reply to clare86

Hi Clare 86

They’ve diagnosed mine through a blood test. My IEGs were up. I had a bad attack four years ago after a bout of pneumonia. I couldn’t breathe very well and one morning passed out. I haven’t had the tests you have though.

I’m still coughing and the breathing isn’t good but it’s better than it was. The steroids are making me feel much better.

Thank you for your reply. Xx

strongmouse profile image
strongmouse in reply to Mavary

I have an allergy to aspergillus, but don't have aspergillosis (fungal infection). The IEGS measure the allergic reaction, I think. If you have an infection then I would have thought they need to check your chest i.e. bronchoscopy.

aspergillus.org.uk/new_trea...

Mavary profile image
Mavary in reply to strongmouse

my IEGs were up and that’s how they knew it was an attack of Aspergillosis. I’ve got Interstitial scarring so I would I imagine they wouldn’t want to do anything invasive. It sounds horrendous anyway.

strongmouse profile image
strongmouse in reply to Mavary

Hope it clears up for you. You could ask for a longer prescription if you or they think there is still an infection. My husband has interstial scarring / pulmonary fibrosis and I feel for you, it can be so debilitating with an infection. Sending good wishes for daily improvement.

Lfcpremier profile image
Lfcpremier

Dear me. What a worry when you're so poorly & you have to fight to get treatment. Sounds as if you know more than medics.

Hope you manage to get a referral to a suitable specialist. Wishing you well soon. 💕



Mavary profile image
Mavary in reply to Lfcpremier

Thank you. I can’t see much hopes of that. I was supposed to go back to see the consultant three years ago but then we had Covid and that was it.

Izb1 profile image
Izb1

Sounds like the members here are right and you need a specialist to help you get better x

JJ_7 profile image
JJ_7

Hi Mavary. I have no advice but I can see you are struggling.I do know how it feels to struggle with the smallest daily tasks. Please get well soon and I send my best wishes for recoveryxxx

Mavary profile image
Mavary in reply to JJ_7

Thank you!

jackdup profile image
jackdup

how long ago did you start taking the steroids? I had COVID about 6 or so weeks ago and have had a cough ever since. I started on steroids and antibiotics this morning so hope I can finally get rid of the cough. The respirologist I saw yesterday said a cough can continue on for a long time after an infection, sometimes even up to a year. Hopefully the steroids help.

Mavary profile image
Mavary in reply to jackdup

oh poor you. This Covid has played havoc with a lot of people.

I’ve got a course of five days on steroids. Six tablets per day. I’ve got one days tablets left. My breathing is still bad and I’m still coughing a lot.

I hope you feel better soon.

jackdup profile image
jackdup in reply to Mavary

thanks, and you too. Was your cough a result of COVID too, or at least I assume mine was.

Mavary profile image
Mavary in reply to jackdup

No it caused by Aspergillosis which means I’m allergic to a fungus in the air that everyone breathes in. You can grow fungal balls in the lungs and tubes.

jackdup profile image
jackdup in reply to Mavary

That’s unfortunate. Hopefully you can get some relief.

Mavary profile image
Mavary in reply to jackdup

The Asthma nurse told me that my cough can last for a long time. She has suggested I go back to the Consultant because I should have seen him in 2019 2020. She has to ask the practice nurse though I can’t understand why.

jackdup profile image
jackdup in reply to Mavary

That is sure unfortunate you haven’t seen the consultant for that long. I sure hope you can get in soon to see him or her and they have some answers for you.

Mavary profile image
Mavary in reply to jackdup

I’m not too hopeful on it being quick.

Alberta56 profile image
Alberta56

I hope you start to recover soon. It's horrible to have no energy to do anything. And having to deal with unsympathetic/ ignorant medical staff does not help. xxx

Mavary profile image
Mavary in reply to Alberta56

she’s usually lovely and she was when she realised I was right. I’m much better for having the steroids but the coughs not gone yet. I’m not coughing up so much mucus now. It was infected in the very beginning but then it changed to clear mucus. Now not much at all. Still don’t feel I can breathe properly and a really tickle cough.

Alberta56 profile image
Alberta56 in reply to Mavary

Fingers crossed for you. xxxx

spk64 profile image
spk64

hi, I am sorry to hear about your health issues. I was hospitalised a year ago with acute hypersensitivity pneumonitis brought on by inhalation of the aspergillus fungus, I was on oxygen for 12 days and was on antibiotic and steroid iv for 15 days then steroid tablets for about a further 3 months ....I am still not feeling 100% over a year on but I am ok considering.... My advice is, if your breathing gets worse get yourself to AE.... pronto. I left it too long (3 weeks) as I wrongly assumed it was covid ...

Mavary profile image
Mavary in reply to spk64

I’m seeing the Lung nurse at the surgery tomorrow. I’ve still got a cough despite the steroids I had and I wake up with a tight chest so it’s not right yet. It’s lots better than it was though.

Mavary profile image
Mavary in reply to spk64

that sounds pretty horrendous what you had. I’m glad you’ve recovered if only a bit and I hope it keeps improving more. You take care and look after yourself.

spk64 profile image
spk64

thank you

spk64 profile image
spk64

hi Mavary

how did your appointment go the other day ? How are you feeling now, I trust that you are feeling well

Mavary profile image
Mavary in reply to spk64

tThe lung nurse is going to recommend I go back on the treatment that kept me stable for the last four years. She also going to recommend I go back to see the Consultant. So hopefully it will be sorted. I’ve still got a bit of a cough but I’m better than I was. Just had a bad bout with the flu jab though. I’ve never been affected before.

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