“Fight Song” World Aspergillosis Day Part 2

Part 2 of my day now.

After doing all my treatments then getting washed and dressed I usually have about 5 hours then the nebuliser comes out again.nebuliser

This time it is salbutamol and Colomycin. This happens about 3pm. Again I start by mixing the Colomycin with 3mls of sodium chloride.  Whilst that is dissolving I take the salbutamol to open up the airways.  Then the Colomycin.  I used to only take it twice a day but since my pseudomonas has decided to take over I need it 3 times.  I am full of green muck and taking it 3 times a day helps a bit.  I sometimes do my physio to clear my lungs as well depending on how full I feel.  After I have finished this I sometimes just sit and read for a bit longer as I am starting to tire.  Today I have finished nebbing for the afternoon and started writing this.  I am doing it now as hopefully all of us at Aspergillosis Trust will be busy tomorrow.

Evening time and it is my next lot of tablets.  This is usually around 5.30pm as I have to take my phyllocontin again, they last for 12 hours.  (I take one in the morning when I wake up).  I take 2 at night as I am what they call a morning dipper with my asthma!

early evening tabs

I check my sugar in the evening before taking my tablets as I don’t always need my diabetic tablets.  If my sugar is low I take none but if it is around 7 I just take the Metformin (Diagemet).  All very confusing.  I have had to start doing this as I am been feeling so sick recently I had a hypo.  So I know adjust depending on how I feel.

I have my evening meal and then about 7.30 I go upstairs again to nebulise.  I used to take it later but my mouth is usually so dry afterwards that I need a couple of lemon and ginger teas before wending my way to bed.

neb drugs and inhalers

It is the whole kerfuffle all over again.  Except the Braltus that is only once a day.  So all the mixing.  The Fungizone is a bit easier because the bottle mixed in the morning is okay to use for 24 hours so I only have to make it up to 4 mls with sterile water. I also do my lung clearance again so I don’t wake coughing in the night when I slide off my pillows More reading!

Then I go downstairs and watch something on the telly with hubby and try and relax.  Then to finish the day I have another load of tablets.

night tablets

Since I was diagnosed with diabetes I have been given blood pressure tablets and a statin.  Both are low doses.  The magnesium is just because every time I am admitted to hospital I usually get put on a drip of the stuff.

Well that is it.  We are intending to go away for a couple of weeks by the river Bure in Norfolk so the planning starts weeks before to make sure I have enough medication to last and enough when I get home as it takes days to get a new prescription.  Freezer packs put in the freezer to transport the Fungizone.  I must admit I have bought a couple of dossette boxes so we don’t have to take boxes of tablets and it helps so I don’t have to count everything out to make sure I have enough

dossett box

Please share this post and help spread awareness.  I have a bucket full of things wrong with me but most are from the treatments for Aspergillosis.  It has a knock-on effect – you start with one thing and it just gets worse.

Take care everyone and thanks for reading. x


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