“Don’t Give Up”

Shielding is due to finish in a few days but it seems some places are having another wave.  Hopefully, it will just spike in specific areas so that will result in local lockdowns.  Many of us with Aspergillosis usually have routine appointments which involve blood tests and sputum samples.  Hospitals are trying to organise this but nothing near what we are used to.  It is quite worrying as we have had it drummed into us that routine blood tests to check trough levels of our anti fungals are important.  I am sure it will be okay but all of us when we are stable on treatment do not want things to get worse as it seems to take ages to get back on the straight and narrow.

I have my first appointment yesterday.  Yes I actually saw a doctor for the first time since the beginning of February.  Even though I have had a severe chest infection and adrenal crisis.  It felt good.  Had to wear a mask which was not as bad as I thought.  I got hot under it but it didn’t make my breathing any worse.  I had my oxygen saturation checked and it was 90 which is not bad as my best is 91.  The nurse was concerned but I told her that was me.  I had an x-ray and then saw the doctor.  It was a good appointment.  I now have a local Infectious Disease doctor who will help me with all my infections.  It is a great relief as you all know that seems to be my main problem.

My mouldy man worked hard finding an anti fungal that suited me and it did the trick.  My IgE is very low now.  Then my Pseudomonas flared up.  Then Staph and Mycobacterium Absessus.  The next step was trying to reduce my Prednisolone as that was the only thing that kept my IgE down previously.  The hope was that would help with the infections.  It hasn’t.  Also it has now given me other problems.  Last week I had an adrenal crisis so had to increase my prednisolone again.  Frustrating.  I was supposed to have blood tests every time I reduced but that didn’t happen because of Covid-19.  Hindsight is a wonderful thing perhaps I should have stopped reducing.  So I have to start all over again.  Such is life.

I do not intend to change things much after 1 August.  I will go out with hubby for little trips and my sister will visit.  She has been shielding as she has ABPA so I think we will be fine meeting. We will have sarnies in the garden!

I have been lucky during lockdown.  I have two smashing neighbours.  One does little trips to M & S and gets a few treats for us.  The other has helped with books.  She dropped another off at the weekend so I am now reading Hammet.  Not my usual sort of book so I am looking forward to something different.

I have been busy with Aspergillosis Trust as well.  We have added some new pages to the website and one of my partners in crime has been getting the calendar organised.  We have 2 events coming up in September.  It is the ERS (European Respiratory Society) Congress.  There will be an ELF (European Lung Foundation) Patient Organisation Day and we hope to have a poster ready for that.  It is all virtual this year but people will be able to see the poster afterwards.  Then we have the Forum of International Respiratory Societies World Lung Day on 25th September.

 

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Stay safe everyone and take care. xx

http://www.aspergillosistrust.org

One thought on ““Don’t Give Up”

  1. Yet another wonderful post Jill, you are managing to put into words how a lot of us who are or have been shielding are feeling especially about the regular blood tests etc.
    So glad you and your sis can get together for a few sarnies in the sun (if we get any).
    Just carry on with the writing it is always a treat to read.

    Like

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