‘Fight Song’

I am home.  I am pleased to say I am feeling a lot better but realise I have to try and get my stamina back and try and push myself a bit.

It was a long two weeks but I have to say the Doctors, Nurses and Physios were fantastic.  As I mentioned before my Pseudomonas seems to be quite happy living in my lungs and the eviction notice has not worked so it is now a squatter in my lungs.  I have learnt that when I start to go downhill I will have to try and psyche myself up to work harder to keep my lungs clear.  Not going to be easy but hopefully, it will prevent the clogging and plugging I get frequently.  With all the gunk I take my sputum is very thick and sticky so sometimes I do a lot of work for very little reward.  (Probably not the best word to use!)

Infections make us very tired but it seems that is when we have to work the hardest to keep our lungs clear.  So all of you out there with permanent bedfellows you have my sympathy.

The last few days in hospital were quite busy.  I went down to the gym and did quite a bit of exercise.  Managed to do squats (even with my wobbly hips) and had the physio help me on the exercise bike.  I found the bike easier than the treadmill.  I think it was just one of my legs drag a bit and I felt unsafe so cycling seemed better.  I managed 6 minutes 35 seconds.  Some of the exercises just had me in fits of giggles – I just seem to be a wreck at the moment – I just couldn’t manage them.  There was a 3 kg weight to lift with both hands, I just couldn’t lift it higher than my shoulders when sitting!  Laughing though helped loosen everything up so started coughing.prod_1904100212

I also was given phosphate to take for 3 days.  I have not idea why.  Before I left on Friday I had to see another Specialist.  I am under my mouldy man and a wheezy man at Brompton but they wanted me to see a bug man to see what he recommends.  So Friday morning my wheezy team came to see if I was okay and then another muddle of medics appeared (my new name for a group of Doctors).  Seemed a very nice man but I feel he was a bit taken aback by me.  He mentioned putting me on an antibiotic for 3 days a week and I said that is fine but the one is mentioned interacts with my asthma treatment.  He got his phone out and checked it then laughed.  I sometimes feel that as patients are we expected to just sit and be quiet.  I had the same problem years ago when my wheezy doc referred me to someone.  All these medics seem to be only interested in their specialisation.  Whinge over as on the whole things went well.

I got transport home at about 3 pm in an ambulance.  We ordered a takeaway curry and I slept like a log Friday night.

Getting back into the swing of things now.

Take care. x

 

http://www.aspergillosistrust.org

3 thoughts on “‘Fight Song’

  1. The issue of self-management is being mentioned more and more as all the different specialists and GP seems to lack a means to effectively and quickly communicate. GP’s are over-stretched and unable to cope with all demands. This is inconvenient and downright dangerous if a patient is not aware enough to self-manage – we need to do something about this.
    A direct answer might be to make it easier to self-manage eg an advice booklet for all patients containing details of medications, side effects, resources combined with our alert card?

    Like

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