Apologies everyone but this blog will be me venting. I am hoping writing all my little niggles about life at the moment will be therapy.
For over 4 weeks now I have been coughing up copious amounts of green sludge. I contacted my GP and as the surgery is closed it has to be a telephone consultation. I am fortunate in a funny way. I am regarded as an Acute Care Patient so I have a GP who is appointed to look after me. She is very good and understands all my problems and illnesses. She prescribed me Cipro (I know I have mentioned some of this before). I spoke to her before the course finished as I felt it had made no difference. I was still getting night sweats and have this ache on my right side. It is like my lung is a dead weight. She prescribed me another 2 weeks but I felt after I was halfway through the third week I need to do something else. My muddle of medics from Brompton wanted me to see a respiratory specialist locally so I could have frequent IV treatment to make my life easier. My appointment would have been this month. It has been cancelled until further notice. I tried the specialist nurses at Brompton and they were not available and there was no way of leaving a message which you usually can. I am fortunate that I have the email address of my mouldy man. I contacted him and he looked up my last sputum for me for the sensitivities. He thought I needed to have IV’s but didn’t like the idea of me being in hospital at this time. He tried to sort something out at home for me. As I have no support at home for IV access it was too difficult. I have done my own IV’s on numerous occasions and he could get the medication to me but no one to do the access.
It seems my beloved Pseudomonas is back with a vengeance along with Mycobacterium Abscessus. He phoned me and apologised explaining how difficult everything is at the moment. I totally understand and I don’t want to be in the position whereby I come in contact with this dreaded virus. It is just so frustrating. He had a little conflab with some colleagues and they came up with Minocycline. My Pseudomonas is fairly resistant so really it is something that might calm it down and reduce the pain. The pharmacy at Brompton phoned me and had the drugs delivered. Fantastic service.
Well tomorrow my mouldy man will be phoning me again to see how I am. The quantity of sludge has reduced but the colour hasn’t changed and I am high as a kite or fast asleep because of the painkillers. I also need to make sure I am up as he will be phoning in the morning. I have been missing the daily Zoom meetings so have not been seeing my friends as I am so slow in the mornings.
The support I get from my GP, hospital, husband and fellow mouldy friends is brilliant. I just have a big concern about how long it will be before people like me with chronic conditions can get back to some normality. I know I have nowhere to go but there are things I like to do and also I am a wimp when it comes to pain. I find it hard concentrating on things. It is a very scary time.
I watched Hospital last night and couldn’t believe the amount of wards that had been taken over with Covid-19 patients. I just feel that people needing cancer, heart and other treatments are at home trying to protect themselves and the NHS but it will be a while before they will see an end to their pain.
A fellow sufferer I keep in touch with is very ill at the moment in hospital with Covid-19. She went into hospital with pneumonia and now has the virus. I hope you are strong enough to read this and I am sending you my love. x
Even with everything I am keeping myself busy in the lucid moments I have been trying to do my card making (Christmas cards!) and updating the Aspergillosis Website. We have some very useful information about Covid-19 on there as well as some quite shocking Patient stories. It seems to take ages to get the correct diagnosis.
We also have some new fundraisers
I also finished the book American Dirt. I would recommend it. I am now reading one of my old favourites as I am so druggy. A bit of Inspector Montalbano.
A great easy read.
Please stay safe everyone and social distance. I apologise for my ramblings.
Take care. x