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Original poster

Support thread for CEV / CV

62 replies

herecomesthsun · 11/08/2021 17:59

Just that.

It is potentially an anxious time for people who are still advised to shield.

So maybe a support thread would be a good idea?

Let's see how this goes.

Presumably all the people celebrating not wearing a mask or keeping a safe distance from people will be too busy partying to bother us Smile

Currently playing Carcassonne with the kids in the garden under the new gazebo.

OP posts:
TheVampiresWife · 11/08/2021 18:20

Presumably all the people celebrating not wearing a mask or keeping a safe distance from people will be too busy partying to bother us

I'm CV. In fact I'm just about to start new drugs which make me even more vulnerable to Covid, although I'm double jabbed. However I'm absolutely celebrating the ongoing return to normality (or a semblance of it, at least). My health is my own responsibility and no way should others (on particular young people, who've had such a shit time) be expected to make further sacrifices to protect me. I do appreciate that others feel differently, and that many are more vulnerable than I am - but I do think your tone is a little bit goady.

I'm going to my first gig in almost two years this weekend and I can't wait. My condition may affect my life expectancy and if the past year and a half has taught me anything, it's that life's too short not to live to the full Smile

SpindleWhorl · 11/08/2021 18:26

Well, I see the support thread lasted a whole two posts.

Original poster
herecomesthsun · 11/08/2021 18:27

lol, not really in the spirit. It would be nice if there could be genuine support and not point scoring somewhere.

OP posts:
TheVampiresWife · 11/08/2021 18:31

@herecomesthsun

lol, not really in the spirit. It would be nice if there could be genuine support and not point scoring somewhere.
I'm not attempting to point score - but your 'they won't bother us' comment was a little bit goady and not really necessary.
MilesJuppIsMyBitch · 11/08/2021 18:36

Hi, @herecomesthsun

How have things been going with your dcs and schooling?

Mine are back now - employing the ' fingers crossed' method of viral avoidance.

FourTeaFallOut · 11/08/2021 18:38

Are there many people who are cev who are being asked to shield?

I'm cev but have no issues with my immune system so I'm enjoying the summer and have my fingers crossed that the covid vaccines continue to afford good protection from severe illness and that the flu vaccine is a good fit this year.

I'm over the moon that mask wearing is no longer compulsory. I was wedged between crappy lungs that struggle with them and a guilt complex about taking them off so I have done a lot of stuff I have really missed these last few weeks.

Original poster
herecomesthsun · 11/08/2021 18:42

So, going really good with the kids.

DS was started on immunosuppressants in April, we are trying to work out whether he can be vaccinated.

He was off school from October till March, a large part for medical reasons, but has overall done pretty well at home.

He was happy at home, we found fun stuff to do and supported his learning pretty well, but he has also been in very good spirits returning to school, and has been managing the quite long commute really well.

It's great that the adults are vaccinated and DD is in a vaccine study, and has been having a great time doing sports and other clubs.

We are generally well healthwise other than DS's immune stuff.

And you?

OP posts:
Original poster
herecomesthsun · 11/08/2021 18:46

We were advised to be careful.

DH is group 8 but is very cautious.

I don't wear a mask very much but do indoors.

DS is especially careful though.

We haven't started going back to the village church yet, unless they are doing stuff outside, so have been to a few picnics/ fetes etc.

As regards restaurants, it is very pleasant having supper or lunch outside in the garden. We're lucky that we can do that.

OP posts:
LatteLoverLovesLattes · 11/08/2021 18:49

Thanks for attempting to set up a nice support thread!🌸

I'm CEV, double jabbed, had major surgery 2 months ago.

I'm trying to keep my distance from everyone, but had to travel, by bus, to the hospital yesterday for a follow up appointment. Most people had masks on the bus & in the hospital, so just have to 🤞🏼

I don't go to the shops/eat out, so I'm not sure how the mask wearing is going out there locally, but I think dropping all measures was stupid and the upcoming stopping of isolation is even more daft, but what can you do?? 💁🏻‍♀️

A friend in need of help came around today, we hugged - first person I've hugged in a long time! No masks but incredibly well ventilated. Again 🤞🏼

I'm up for the flu jab & any COVID boosters they're offering!

nether · 11/08/2021 19:01

The CEV have been given precautionary advice, which we're pretty much following (CEV person in household, for whom the jabs might not work, and all of us, including u18s have now had both)

So we socialise outdoors only, and minimise going indoors anywhere (though will go in to a quiet shop).

It is still rather a concern though, as cases are high. Lots of the DC's friend have tested positive in the last couple of months, which has given us some worrying time, but I'm so glad the DCs have friends who understand why we need a precautionary approach, share info promptly on who has tested positive, and who are happy to meet up in the park (when t's not raining!!)

nether · 11/08/2021 19:04

We've all got our flu jabs booked at Boots - not waiting for further announcements on covid boosters (one of us group 1, rest of us group 2). We always aim to get them done early, because the 'sniff' can shed, so it's important the CEV person is done before the school-based programme gets in to full swing (that's not pandemic related, it's advice for every year since diagnosis)

FourTeaFallOut · 11/08/2021 19:12

I tried to get the flu jab early last year but the pharmacy decided they were only vaccinating the over 60s at that point (September) and I got sent away. I could try again but I was waiting to see what the word was with the potential covid/flu combo.

MilesJuppIsMyBitch · 11/08/2021 19:12

@herecomesthsun

So, going really good with the kids.

DS was started on immunosuppressants in April, we are trying to work out whether he can be vaccinated.

He was off school from October till March, a large part for medical reasons, but has overall done pretty well at home.

He was happy at home, we found fun stuff to do and supported his learning pretty well, but he has also been in very good spirits returning to school, and has been managing the quite long commute really well.

It's great that the adults are vaccinated and DD is in a vaccine study, and has been having a great time doing sports and other clubs.

We are generally well healthwise other than DS's immune stuff.

And you?

All ok here. DS is eligible for the jab because of me now. Thinking of turning up to a vaccine drop-in centre with him - and my shielding letter.

Kids were off for thirteen months in the end. It was ok, but we're all much happier now they're back.

Just waiting for the blood cancer Uk study to find out where I really stand re Immunity!

nether · 11/08/2021 19:15

but the pharmacy decided they were only vaccinating the over 60s at that point (September)

That won't be a pharmacy decision, it's because there's a different jab (with different adjuvants) for the over 60s. Supplies of the u60s jab arrived a bit late in some parts of the country last year

PastMyBestBeforeDate · 11/08/2021 19:25

Hello. CEV and immunosuppressed here.Double jabbed but only have a tiny response.
Two dc so trying to stick to outdoors meet ups with friends.
Focus is on getting the teenager jabbed for covid but I must see if I can get them flu jabbed rather than the youngest getting the live nasal vaccine. If not I'm going to have to find somewhere to stay when it's done.

canigooutyet · 11/08/2021 19:41

Friends are more than aware long before 2019 that if they are ill to stay the fuck away from me, and in line with nhs advice to stay the fuck away for 48 hours if they've had a temperature.

I'm CEV and one of the unlucky bastards who cannot have the vaccine.

Secretly hoping that restrictions stay in place for hospitals and your told not to bring half the family with you for your appointments lol as appointments are on time and there's spaces to sit in whatever waiting area, Although it's really shit that visitors are so restricted when admitted.

My life expectancy is reduced due to the conditions I have. These also impact the quality of life at times to the point I cannot get out of bed for prolonged periods of time, The days I can do things I'm don't stay home and shit myself about the what ifs. Bad enough being laid up wherever and the possibility that this time that's it game over.

I understand not everyone is like me, and I probably wouldn't be this blase if it wasn't because of the MH conditions I also have. And ultimately life is for living and enjoying.

Backofbeyond50 · 11/08/2021 19:49

Thsnk you for thread
Dh is immunosupressed due to meds. I woh and have 3 dds who obviously attend school and need to have a life.
I had to laugh at the Govts advice to avoid the unvaccinated. Pretty hard when you live with 3 of them. Been there with SD in the home. Not going there again.
Dd3 attended a holiday club on Monday and a member of staff is now positive
Guess we need to hope dd doesn't catch and pass it on to dh and to a lesser extent cv me or if she does the vaccine does it's job.

PastMyBestBeforeDate · 11/08/2021 19:57

Yes Back the government really showed they didn't have a clue with the avoid the unvaccinated advice.

Backofbeyond50 · 11/08/2021 20:04

Yep and the indoor spaces. Especially had filmed ECV kids and school staff

Backofbeyond50 · 11/08/2021 20:04

Hard for

Scottishgirl85 · 11/08/2021 20:48

I'm curious, were CV people careful about catching colds/flu before covid? Genuine question.

SpindleWhorl · 11/08/2021 20:53

@Scottishgirl85

I'm curious, were CV people careful about catching colds/flu before covid? Genuine question.
Yes, I had to have a flu jab and a pneuomonia jab before I started on immune suppressant medication, and I have a guidance booklet on not eating certain foods, avoiding being around viruses, and urgently contacting my GP for anti-biotics if I think I have any kind of infection.
nether · 11/08/2021 20:56

@Scottishgirl85

I'm curious, were CV people careful about catching colds/flu before covid? Genuine question.
Yes

But if course even a bad flu year is nothing like pandemic circulation of a novel virus

SandysMam · 11/08/2021 21:04

Hi everyone, just wondered if anyone on here has had a transplant? I need a kidney but wondering if life on dialysis (when I start, not quite there yet) would actually be safer as at least not immunosuppressed! Feel stuck between a rock and a hard place at the moment!
Am trying to avoid the news and get on with life but it all just feels so scary unless I bury my head in the sand. Thinking of everyone who might be struggling Flowers

PastMyBestBeforeDate · 11/08/2021 21:28

@Scottishgirl85

I'm curious, were CV people careful about catching colds/flu before covid? Genuine question.
No because I wasn't imunosuppressed then.