My first COVID positive test ever came up twic... - CLL Support

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My first COVID positive test ever came up twice positive

Stewie_1968 profile image
18 Replies

I thought I had a cold coming Wednesday night while at work at the local hospital, then yesterday had my rutuximab at the local chemo unit told them about my cold, they were happy to carry on , I did test on Wednesday evening at work negative Tested today twice both positive Been aching a lot especially at night , sore throat is easing, chest at the moment is ok , I am asthmatic on ventolin and Fostair but it's early days been in touch with local hospital and waiting for the GP to ring prescribe Anti virals , funny thing is my wife is a IV nurse on duty weekend, she is the who does the infusions of sotrovimab in the local county

Anyway little scared not sure what to expect and I didn't have my vaccinations COVID due to palpitations the last two years coming back to bite me on the bum now

Stewie

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Stewie_1968 profile image
Stewie_1968
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18 Replies
Stewie_1968 profile image
Stewie_1968

Thank you Jammin , yeah I thought it was a cold after I tested on Wednesday at work negative hope I didn't pass it on to anyone in the chemo unit Stewie

Maya2007 profile image
Maya2007 in reply toStewie_1968

Hi Stewie.I tested positive for COVID for the first time a couple of weeks ago.The onset was quite insidious as you say v much like a common cold.However my husband, son and daughter had tested positive before me.Then it was my turn and my other son's turn with the virus.I began to feel achy and fatigued the night before testing.I wad able to avail of sotrovimab infusion on day three which went v well. I still have bit of a residual cough and feel some tiredness but recovering.My advice to you would be to check your oxygen levels regularly with Pulse 💗 Oximeter and not to fail to act if you have any breathing issues.Wishing you well in your recovery.

Stewie_1968 profile image
Stewie_1968 in reply toMaya2007

Hi Thank you ,

Yes I got a sats 02 machine , we both work in the NHS , been checking , ok at the moment and chest , no cough but I ache are all over even my fingers

But drinking plenty and have eaten, waiting for the ring back GP told me 2 hours , 3 hours have just passed 😡 had a courtesy call saying your still on the list

Stewie

Maya2007 profile image
Maya2007

The wait for GP callback can be v frustrating.I would have been offered antiviral in tablet form but the Dr at the hospital COVID Centre didn't want to risk that with me as I haven't had bloods checked recently.Scary having COVID when we have CLL esp when on treatment like yourself.All the very best and hope you hear from GP very soon.

Stewie_1968 profile image
Stewie_1968 in reply toMaya2007

Hi it's sham really , I was told the GP ring back would be between 2 and 4 pm , still waiting at 18.45 it's a joke , they have escalated it twice because I phoned up , I didn't realise the system was this bad I realise it's good Friday but all they have on the ring back notes is leukaemia patient on active treatment needs urgent advice I work in the NHS may be I should have known what to expect

Stewie

Maya2007 profile image
Maya2007

Yes indeed it's all v dishearteningesp when we're feeling frightened.I would keep ringing and emphasise the COVID word. Goodluck.👍

Stewie_1968 profile image
Stewie_1968 in reply toMaya2007

Just phoned up again , another chap said the unit who were phoning have now closed , I asked are you being serious, he's getting the team to ring me tomorrow between 9 and 11 they can prescribe Antivirals which only works if they are taken at an early stages , it's a farce this 111 , it's only time I rang them and I'm lost for words Stewie

Maya2007 profile image
Maya2007

It's a joke. I was told you have a five day window from start of symptoms in which antivirals are effective.Wishing you luck with call tomorrow.🤞🤞🤞

Pekingese profile image
Pekingese

Hi Stewie, I had Covid a few weeks ago, I phoned my hemotoligist team and I got my 5 day course of antivirals the same day. It is scary good luck for tomorrow. Ros

Had

Livingwith67 profile image
Livingwith67

Hi Stewie, if you are on treatment do you not have an emergency helpline number to call? They gave me a card to carry in case of issues. This was last year now and I got covid whilst on treatment too. So I called this helpline number and went straight in to the hospital to have bloods taken and prescription written (I never actually got the prescription as the pharmacy was shut by the time I got there and then they wouldn’t give it to me the next day for various reasons) but anyway the emergency helpline was great. It wasn’t Good Friday but it was a Sunday.

Stewie_1968 profile image
Stewie_1968

Hi thank you for your reply , yes I phoned my hospital emergency number yesterday just told me to stop venetoclax until I feel better , they went through an assessment, still waiting for the call back from the prescription team (Anti virals) that's what I was after when I originally phoned at 2.00 pm yesterday 111Stewie

Mtk1 profile image
Mtk1

sadly if your ill at the weekend the nhs shuts down, I had same trouble when catching covid on a Friday, 111 called back 3 weeks later after I had complained, but by then I was ok. I complained and I am still waiting for their decision from last October.

Get well soon.

Dave.

Stewie_1968 profile image
Stewie_1968

Hi Dave I can believe it I really can about the 3 weeks , still not heard anything, one health advisor stating advice I informed her that I am nurse and I'm aware of that obviously not her fault but I hope something comes of your complaint I really do because after my experience .

Yesterday one health advisor said your on the list at 9am to 11am tomorrow to receive the call from the unit that's after I had no call back yesterday from any one even though that was also promised , i was sceptical and guess what it never came

Stewie

Ghounds profile image
Ghounds in reply toStewie_1968

Shocking, I hope you've heard by now and that in the meantime you're not feeling too bad. It's frightening that the system is so broken.

Stewie_1968 profile image
Stewie_1968 in reply toGhounds

Hi , no not heard anything at all , they didn't ring and what's worse I didn't expect them to , haven't got a direct number so no good keep phoning 111 , sweating and aching a lot including my hands and fingers but eaten well earlier and don't feel to bad Any change that the Anti viral medication actually working and making a smoother and quicker recovery is slowly evaporating obviously the quicker you take them the better of them actually working

Stewie

Ghounds profile image
Ghounds in reply toStewie_1968

Very disappointing that you didn't hear from them. I hope you start to feel better soon.

Astro617 profile image
Astro617

Take care Stewie. I hope you have an easy course and are feeling better soon!

Stewie_1968 profile image
Stewie_1968

Thank you

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