‘Strange Brew’

I am shocked stunned and a little amazed.

I really don’t know what my lungs are up to and I think my mouldy man thought things were a bit strange.  This disease seems to change (views are my own).  I have been diagnosed with ABPA (Allergic Bronchial Pulmonary Aspergillosis) since I was about 12.  Firstly it showed as severe allergic asthma.  In the past 10 years or so things have changed.  I have a small cavity with a fungal ball which, thankfully, hasn’t got any bigger.  Now I seem to have Aspergillus Bronchitis as I am showing an infection.  The allergic reaction is very low, which is great.  My IgE is low but my IgG is raised now.  My mouldy man said it is as if my allergic response has burnt out!  He said I seem to have a little of three different conditions.  I asked him to give it a name and he said he still thinks ABPA as my scans show plugging and damage that occurs with ABPA.  It is fantastic though I have been able to reduce my prednisolone down to 5mg – the lowest I have been since I was 20!

cropped-royalbrompton2710b.jpgIt was an awful trip up there on Wednesday.  It poured with rain all the way up there and my usual trip of 40 minutes took 2 hours.  The M4 is being made into a ‘smart’ motorway (whatever that is) so it was road works all the way into London.

On top of the aspergillosis, I have my usual concoction of bugs so I have been put on Flucloxacillin.  One gram 4 times a day and I will be taking my nebulised Colomycin 3 times a day as well.  One of the reasons I am late doing my blog is that I have been falling asleep so much.  Not sure if it is the antibiotics, reducing my prednisolone or just me.  Strange times hence the song this week!

I have been very busy with Aspergillosis Trust.  Trying to get all organised for WAD.  It has been difficult with my colleagues not being well and me on cloud 9 at the moment.  I am just trying to do bits when I can.  We will get there.  I have had some lovely selfie pictures sent which I have added to the website and the Raffle is going well.

Please download a selfie card at http://www.aspergillosistrust.org/submit-your-selfie/ we hope to flood social media with these photos on WAD.

Some people are holding coffee mornings so I am organising sending awareness items out and cards to sell.  We also have our poster which is being sent out to CCG’s, medical schools and pharmacies.

WAD Poster 2020It is a rotten time of year for a lot of people with chronic lung conditions so be careful everyone.

Hope to write something a bit more uplifting next week but being a bit away with the fairies due to the drugs I don’t think I am safe to be let out!

Take care. x

4 thoughts on “‘Strange Brew’

  1. Hiya. Not been looking at much lately. I have been feeling rougj since 10 th December. I have had a cold and the productive cough and sore throat won’t go away. Qill ring dr see if theyve had the sputum sample result yet. Jusy not feeling as i should.

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  2. Love it Jill, We all know about being away with the fairies.hahaha .Smart motorways I think the only thing Smart is how efficient a tax raiser they will be.

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  3. Wow! Your story sounds just like mine. I was 16 when I was diagnose with ABPA. I too had a fungus ball in my left upper lung. I had my upper left lob removed at 18 because it was so severe. I was on prednisone for 10 years plus lots of other meds. I’ve been living a healthy lifestyle but just recently I have been diagnosed with lung nodules and Bronchiectasis. I am 53 now.

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