Aspergillosis and Hyperinflated lungs.

[Mavary]

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.

[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 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]

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 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 in reply to Mavary]

xxx

[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 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]

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 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]

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 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 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 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 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]

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 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]

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

[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 in reply to JJ_7]

Thank you!

[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 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 in reply to Mavary]

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

[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 in reply to Mavary]

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

[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 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 in reply to jackdup]

I’m not too hopeful on it being quick.

[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 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 in reply to Mavary]

Fingers crossed for you. xxxx

[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 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 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]

thank you

[spk64]

hi Mavary

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

[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.

[poppyshola]

Always remember it's your LIFE they are playing with... never let any of them make you feel like a hypochondriac, you KNOW your body and you know when it's not right, it's up to the professionals to solve the puzzle ... A helpful tip for each time you go to the GP and any specialist

Write it down because you can guarantee they will interrupt your flow and shut down your conversation. Resulting in you leaving their room very confused frustrated and feeling paranoid ...

[Mavary in reply to poppyshola]

you are so right. I have learned to speak up now. When I was younger I took what was thrown at me but not any more. If I think something is not roght or is right I say so.

[poppyshola in reply to Mavary]

Good for you ... your brain must be frazzled with all the confusion

[Mavary in reply to poppyshola]

it’s definitely that. I try to take in what applies to me.

[Mavary in reply to Mavary]

I don’t think I said but i had a stay in hospital a few weeks ago and it was the most horrendous time. I told the nurse I was going to walk down the corridor and I was going home. I called my Son whom I knew was in town and he managed to get me a wheelchair to push me down. I was absolutely annoyed and horrified to think about my stay. I complained to PALS and they forwarded my complaints. I had a letter back with bullet points which annoyed me even more. Then I had a call from the Ward Manager of the first ward ward I was in. I did say I wasn’t going to pursue it any more. But I was angry about what happened. She wanted me to go through it and I told her all of it. She agreed with me that it was very bad treatment. The last I heard was she was going to talk to the other ward Sister. So if I’ve prevented anyone else going through what I did I’ve done my job. She did say that if everyone complained when something was wrong they could maybe get things right. So you see I do stand up for myself.

[poppyshola]

Well done.... like you say its for others too .. others that don't put things right... I'm not one for complaining about nurses as I think they work very hard and put up with some awful patients sometimes but patients are often scared and don't dare question stuff but they have a right to know what is happening and being done to solve the problems .. not left in the air ... and thats not the nurses that do that ,.. its often the consultants who sometimes think they are the only ones that need to know ...

[Mavary in reply to poppyshola]

I was only in for two days. I was put in an assessment ward which was a lovely ward. I never slept all night 1. Because there was a lady in one corner shouting out all nigh5 and another lady behind me shouting out. I know this can’t be helped and it didn’t bother me. The next day I never had a hot drink which I thought was odd. I asked a nurse just before dinner if I had missed the trolley going round. She said no! Why would you like a drink. I said I would.

In the early afternoon a nurse came and said we are going to move you. I thought as it’s always been it would be a while., I went to say goodbye to the lady opposite and when I looked back the porter was there with a wheelchair. A nurse threw my things in my bag obviously leaving my jumper out.

I was taken to a lovely single room. I sat on a chair near the open window trying to get some air. All I could smell was urine. I got up from the chair and there was a big brown patch on it. A nurse came in and I asked her if she could smell urine. She said she couldn’t so I pointed out the brown patch. She said she would change it. I asked for another pillow as there were two pretty flat ones on the bed. I’ve got seven spinal fractures and I arrange them round me to stop the pain. She said you’ll be lucky and that was that. I checked my bags and found my jumper was missing. I asked if they would check for it. But no they couldn’t find it. I asked a young nurse later on and she said she would look for it. At about 11.30pm a nurse came in to turn my light off and I said I was waiting for this young nurse to come back. She said she hasn’t come back yet. So I said I was worried about her in the corridors. She said yes we are worried. Just before 12.30 I asked another nurse that came in to turn my light off. Oh she’s been back ages and no she couldn’t find your jumper. So I went to sleep at 12.30am. At 1.30 there was a terrific crashing through the doors to the room I was in. They brought another bed in and they were saying we’re going to move you were going to move you. I was dumbstruck. I said you can’t do that . Oh yes we’re going to move you. I was pushed out of the doors across the corridor crashing into another single room with another lady in. They crashed into her bed waking her and put me the other side of her. I was furious and said this isn’t on. They just left the room. The only thing they did say was they were bringing in a lady they would have to turn. Well ok but wake an older person gently not frighten the life out of her. I could have had a heart attack or stroke with the shock of it. I did manage to get about two hours sleep after. The bathroom door wouldn’t shut so no privacy and the window wouldnt open. At about 12.00pm the Dr came round and said I could go home. My discharge letter and antibiotics got delivered about 4.00pm. So I asked a nurse if she would kindly get a wheelchair for me. She said she would look for one. She never even bothered to tell me ifvshe could or couldn’t find one. I looked out the door and she was down the hallway. So I asked another nurse. She said she would look. She came back and said she couldn’t find one and I would have to wait now until after dinner. I then snapped. I said Actually No! I’m going to call my son and I said I’m going to walk out. I said I don’t know how far I’ll get but I’m going. I said it’s been a catalogue of things and I’ve had enough.

It takes a lot for me to get like that but the final straw had been broken. My Son came up and luckily he had a wheelchair with him. I had to go home in my PJ top with short sleeves.

Needless to say I made a complaint to PALS.

I don’t usually complain about things but I think my stay was a nightmare.