COVID round 2

[Annieosb]

After getting COVID at the very beginning, but undiagnosed, and already having a lung condition, (aspergillus, attended Wythenshawe for years) GP said take antibiotics and steroids x 2. Never really recovered until 2 months ago my desaturation was getting so bad i was sent to the oxygen nurse. She said, oh you have long COVID.....I could have kissed her, been saying this for years as anyone who knows me, knows how much I deteriorated since this time.

O2 helped loads, however on the 9th July I got COVID. 14 days positive and I am just feeling so unwell, but not testing positive. O2 up to 4 litres at night and all day. So tired and get desaturated on exertion even with the o2.

Anyone else relate to this...did you recover?

[peege]

Hi Annieosb, I'm very sorry to hear this & also very disappointed for you that its still going on. I'm a bit worried too that your gp said antibiotics & steroids x two - did he not think of giving you antivirals for the aspergillosis if not omg! Do get in touch with your consultant ASAP perhaps via a copy of your above post to via his secretary. I'm sure you need a check to find whether or not you've been having an exacerbation of aspergillus since you were last seen. I may be wrong (I'm no doctor) but I suspect you need a CT scan. I do understand how hard it is to seek proper assurance when you're feeling so bad. Is there anyone close who understands and can you in getting medical support? Very best wishes , P

[Annieosb in reply to peege]

Wythenshawe discharged me, if the aspergillus was found earlier, I could have had them. Long story.

[peege in reply to Annieosb]

Cripes that's awful, aspergillus needs help to control especially if it's prone to exacerbation. I'm so sorry. (I just know a very little about as did some research when I was investigated for it 10 years ago. A friend has it (along with asthma andbronchiectasis) & hers flares up fairly regularly, she has to go into the Royal Brompton for IV antivirals). Thinking of you. Peege

[Alberta56]

Hello Annie, I'm sorry you're having such a rough time. I think Peege's suggestions are very wise, so I hope you can follow them through and get someone to look at the whole picture. Take things very easily while you're feeling so bad. Your body's been through a lot and needs time to recover. Best wishes. xxxx

[ceels]

HiAnnieosb, I’m under withenshawe with CPA with aspergiloma aspergillosis, I came down with with Covid this year in June and I’ve been onO2 24/7 since, I didn’t everything right as far as applying for antiviral via gov.co.uk, but was instead prescribed antibiotics I’m illergic to, as I’m in Nuneaton I get telephone contact via withenshawe tho I’m pleased to be on oxygen my sats are still dropping dangerously low I’m beginning to think long Covid in my case but how’s it diagnosed?x

[Annieosb in reply to ceels]

Sounds like long covid. I was put on oxygen before the COVID, but the o2 nurse said to me you have long covid!! Now 4 weeks after infection, positive for 2 weeks, I feel so week and even on o2 desaturate on exertion. So back to GP on Monday.

[Turnipgirl]

Back in 2019 our family came down with what we thought were bad colds before covid was officially christened but looking back we think we had it before it was officially named like lots of other people and thought we had bad colds!

Yes we all recovered fully physically but that was a right old shock though when everything shut down overnight in the March of 2020!

[Mavary]

Hi! I’m so sorry that Covid affected you like this. I’ve got Aspergillosis too. I’m on anti fungal permanently. I had Covid the beginning of the year. I also had shingles with it. I felt pretty poorly at the time. I was in bed most of the time for fourteen days. I had to get up to feed the cat, get drinks and food for me. I live on my own so it was a bit of a struggle. It took me a few weeks to get my strength back. I didn’t really want to eat so just did what I could get down. I did lose weight but all that plus more has gone back on now. As I was recovering the only thing I fancied was fried breakfast. So that’s what I had. I never eat fried breakfast. I’m not that keen on it. Anyway the point I’m getting too is I think I recovered very well and have luckily got no side effects from it. Even the shingle marks are gone. Luckily I only had two scars. I had the vaccination years ago for it. They are now saying that Covid is starting up again. So I’m thinking maybe the mask will be coming out again soon. I still disinfect my shopping when I get my home delivery. I hope you are soon feeling much better.

[Annieosb in reply to Mavary]

Thank you so much for those kind words. My Aspergillus was found as antibodies in my blood, 3 years previously I had been diagnosed with COPD. When this was spotted I was sent to Wythenshawe where I was told the damage was done and my body had healed itself, hence the entibodies. However had it been looked at properly in the beginning, antifungals could have been given and stop the damage caused. The covid has left me v desaturated, good job I have an o2 concentrator or I would have been in hospital.

[Mavary in reply to Annieosb]

I had an attack not long ago. They couldn’t get my antifungals and the Drs were trying to get me to have less than half dose of my inhaler. It got that I woke one morning and I had a job to breathe. I knew then I needed steroids but I had a job to get them. I had pneumonia five years ago now and when I got home I found first thing in the morning I couldn’t breathe very well despite using my inhaler. I woke one morning when my breathing was bad and managed to get to the loo with inhaler in hand. Next thing I knew I had my inhalers dropped out of my hands as they were on the shower. So I had passed out. I know I shouldn’t but I went back to bed and phoned the health centre in the morning when I got up. I had to go and see a dr in the afternoon and she sent me back into hospital where they did tests. My IEGs I think it was were very high. And they then said I had Aspergillosis. I think I’ve had it all my life because I can remember other times when I had problems. I could see it going the same way after Christmas and I told them I needed steroids. The practice nurse I spoke to was really funny about it until I told her that that’s what the hospital gave me last time. The thing is we know our bodies and when things aren’t right. Anyway it’s all sorted now but I never feel my breathing is right.

[Mavary in reply to Mavary]

I must say that I’ve got scarring at the bottom of my lungs which probably was caused either by Pneumonia which I’ve had three times. The first time was when I was very young and they thought I had TB as well. They think the TB was killed when I was so ill with pneumonia.

[Annieosb in reply to Mavary]

I have an emergency pack in the house, antibiotics and steroids. Why dont they do that for you?

[Mavary in reply to Annieosb]

I’ve not needed that so far. I had to fight for the last steroids I had but when I said I had them before in hospital she said let me look. Oh yes she said and she gave me them. She was pretty funny before though because I said I had spoken to the BLF. She wanted to know where the paperwork was as she had none and who are these people. I had a proper interrogation. I knew I had got to nearly the stage I was before when I passed out and I knew I had to get those steroids. Since then I’ve gone back on the Itraconazole. They couldn’t get them a while back so they gave me it in liquid form. I ended up with terrible bowel pain. I couldn’t take it so I went without for a little while but I found I was having breathing problems so I’ve told them now I can’t do without them. If they can’t get them then maybe an emergency pack would be a good idea. I find I’m quite often breathless. If I cough or sneeze I get I can’t breathe very well. I’m not too bad otherwise.