Covid positive journey so far…..

[Nickyanne]

I have tested positive for Covid, after sometime of feeling like I was on borrowed time with 2 children at secondary school, a husband who is self employed and worked in peoples homes throughout the pandemic and me working as a frontline NHS worker I have tested positive on Monday.

Son and husband were positive on Sunday so felt sure I would get it. My lovely type 1 diabetic daughter has so far evaded it and I’m feeling so lucky so far as she is my biggest concern - she hasn’t come out her bedroom apart from to go to school!

Background- ET, on HU 1.5g x5 and 2g x2 per week. 3 Pfizer vaccines. Previous near death experience with flu around 4 years ago despite being vaccinated that has made me feel terrified of Covid.

I’m feeling okay so far, touch wood, not tempting fate / keeping everything crossed but I /we have very mild symptoms. I had been working from home but decided I probably need to give my body time to get well so called in sick this afternoon for 2 days.

Spoke to GP this morning and was referred to the unit that deals with the new treatment for clinically vulnerable. They have taken my history and said for now I don’t meet criteria, which I feel is the right decision based on my mild symptoms and I’m sure there’s other people in greater need than me for the treatment atm.

Fingers crossed I /we stay well. Thankful I’m vaccinated as I’m sure that’s what’s got me out of a sticky situation.

Best wishes to you all. Hope you all stay well. Take care

Nicky xx

[Anag]

Dear Nickyanne,

Wow! You have a lot going, but please relax and let go. The present Corona mutation is really light if you are vaccinated and still light or no symptoms if you are not vaccinated and not susceptible. I know many who have it right now. You'll be fine. Nevertheless, taking 2-3 days off is a very wize choice! you have to look after you; no one else will. I understand about your daughter, but she is young, so don't be worried.

News from my friends who are on the front line in hospitals here in Vienna Austria is that most in ICU are severly obese (at least 50+kg too much, severely diabetic and advanced in age, very old and frail or have other illnesses and are really sick to begin with). Our numbers have absolutely exploded, (4x higher that at the past highest day incidence) but less people are being hospitalized.

I have an 18 year old daughter with chronic Lyme (finally diagnosed after years of digging for answers and crying our way through life). She is finally getting better with natural treatments. God is faithful. She will need two years of testing and making up classes from the years lost at school due to illness. then she'll do her Matura (A-Levels). 😁

I wish you alll the best! Get well quickly and take really good care of yourself and family.

Anag

[Nickyanne in reply to Anag]

Dear anagThank you so much for taking the time to reply. Interesting to hear how the Covid situation is in other parts of the world. Hope your daughter is on the mend. Take care xx

[Mostew]

Can Imagine how you have felt Nickyanne . It's all such an unknown. .. Glad to hear symptoms mild

Look after yourself .keep well nourished etc

Warm wishes to you all

Carolyn

[Nickyanne in reply to Mostew]

Hi Carolyn, thank you for replying, feeling very lucky so far that my symptoms are very mild. Take care

Nicky x

[mhos61]

Sorry to hear this, but so good to know you’re doing well. I sense your relief that your daughter has managed to escape it.

It’s tough for families. It makes me appreciate my situation in that I’m retired and don’t have that additional anxiety of work/school socialising. I can’t imagine how that must feel!

Hope you all recover quickly xx

[Nickyanne in reply to mhos61]

Morning, I’m day 4 now and feeling okay so fingers crossed i continue on the path of mild symptoms. My biggest fear was if my family came down and me and my daughter were both poorly that I wouldn’t be able to look after her.

Thank you for taking the time to reply

Nicky xx

[Fizzydog]

Thinking of you & your family, definitely the best decision to rest and go sick from work. I hope you all feel better soon. Claire

[Nickyanne in reply to Fizzydog]

Thank you fizzydog, It takes a lot for me to go sick but after a conversation with my team I think it is the best thing to give my body every chance to get over this as quickly as I can. Hopefully will be back feeling well enough to go back on Monday Nicky xx

[Wyebird]

You must be exhausted! Did you get a PCR kit through the post along with an email saying what drugs to have as soon as you have symptoms? All the above should apply to your daughter too although her age could be a factor. Just think how I’ll lots of people would be me included without the jabs! Wishing you well.

[Nickyanne in reply to Wyebird]

Hi wyebird, thank you for your message. I got a letter from my haematology team in January saying I might be eligible for new treatments if I tested positive and they advised to get a pcr postal kit on standby which I did.

However, on Monday when my lateral flow was positive I was able to get a pcr in my local town 30 mins later so drove there as i thought that would be quicker to get the result.

Went through the GP as advised to the local hospital decisions unit who after taking a history and speaking to a haematologist on the team said I wasn’t eligible. I think a lot was based on mild symptoms and vaccination status.

My GP was very nice and called me back and said if I deteriorate in any way to call him back and he will ask again about this new treatment. Fingers crossed it won’t come to that.

It was very difficult for us to get an early vaccination for my daughter with her diabetes and I gave up trying to get my son vaccinated early as he lived with a clinically vulnerable parent. They are both as vaccinated as they can be now! I’m doubtful that she would be getting a letter for the new treatments. Although her diabetes team are amazing and I have every faith they would fight for any treatments for her.

Kind regards

Nicky x

[Runner999 in reply to Nickyanne]

That is wrong - the new anti-virals are supposed to be given to those with first symptoms to reduce the likliehood of later hospitalisation. I uggest you contact MPN Voice or Cancer Care UK etc immediately for more advice.

[Wyebird in reply to Nickyanne]

You poor thing it looks like you’ve slipped through the system. You are supposed to take these antiviral drugs as soon as symptoms show.

Covid can strike twice. I wish I could forward you my info but I’m really ignorant regarding ICT.

Ask Maz for info.

Wishing you a speedy recovery. Xx

[dancingfiend]

Amazing, brave, hard-working lady, coping with so much. Three cheers for you.

[Nickyanne in reply to dancingfiend]

Oh thank you, that’s kind. Just keep putting one step in front of the other and trying to keep positive!

Take care

Nicky xx

[Oscarsboy]

Sorry to hear you are dealing with so much. I pray you all recover quickly and that your symptoms stay mild. Nurture yourselves.

[Nickyanne in reply to Oscarsboy]

Thank you oscarsboySymptoms still mild this morning, I’m day 4 now so hopefully I’m going to be okay!

Nicky xx

[Oscarsboy in reply to Nickyanne]

That's so good to hear. x

[Mazcd Partner MPNVoice]

Hi Nicky, so sorry to hear that you have COVID, but pleased that you feel ok with only mild symptoms. Take care of yourself, best wishes, Maz

[Nickyanne in reply to Mazcd]

Thank you Maz. Have been living in fear worrying that I will be poorly with it and realistic that there would be lots of opportunity for Covid to come into our family. Feeling so lucky that so far symptoms have been mild.

Nicky xx

[hunter5582]

Hope that the symptoms stay mild and the COVID just run its course without event. I also recent contracted COVID, almost certainly Omicron variant. The symptoms were mostly upper respiratory and a low grade fever. Basically like a moderate cold./flu. The most annoying things was that it took 12 days to shake the symptoms. I was able to get the monoclonal antibody treatment (Bamianivimab/Etesevimab). Am finally feeling back to normal.

Hope you feel better soon.

[Nickyanne in reply to hunter5582]

Hi Hunter, glad to hear your feeling well after getting Covid. On what day of illness did you receive the anti viral medication?

Did you have any side effects from it?

I haven’t the anti viral and it and felt for me that was the right decision.

I’m day 5 today. Feeling really well considering, each day I feel better so I’m hoping it’s running it’s course and I will be back working from home on Monday/ Tuesday then back to ‘normal’ from then.

Look after yourself

Nicky x

[hunter5582 in reply to Nickyanne]

I received the monoclonal antibodies on day 7 from the positive PCR, day 8 from first symptoms. I had no side effects. COVID symptoms resolved on day 12. It was all upper respiratory and moderate level. Still feel a bit of fatigue but overall OK.

The monoclonal antibodies are not the right choice for everyone nor is everyone eligible. They can cause a return to symptoms amongst other things. I was getting better but decided to go ahead to give myself the best chance of not relapsing. Particularly important as I have to bet better to be able to go back and help provide care for my Mother who we are in the process of moving into long-term hospice care.

Glad to be finally symptoms free. I was hoping to not be part of the database for how people with MPNs on PEGyated Interferon fare with COVID. My single data point is that we do about the same as anyone else. We will have to see how the entire pool of data informs us going forward.

Hope you are better and back to normal ASAP.