Support thread for CEV / CV

[herecomesthsun]

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

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

That's a tough decision, @SandysMam.

Hi @SandysMam - that sounds very tough

I know there are posters on MN who have had transplants, so hopefully one of them will be along soon!

CEV, immunocompromised due to neutropenia
I'm double jabbed with AZ but still wearing a mask and avoiding people!

@Scottishgirl85

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

No because my mum wasn't on immunosuppressant medication before covid. Every single time a thread on CEV/CV is set up someone comes along and asks that exact same question.

@SandysMam

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

They are doing a lot of studies into the vaccines and transplant patients in the US and I believe in the UK too the Octave Duo study I think its called. There is a lady on Twitter Liz Lightstone @kidneydoc101 who shares lots of up to date info on these studies.

@Scottishgirl85

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

Yes, I always have to be cautious. I have a stock of strong antibiotics at home to go on as soon as I detect any symptoms. I have to stay away from people with colds, flu etc. I have flu and pneumonia jabs. I don't go in places that I know will make me ill (damp, cold, overcrowded). Your 'genuine' question honestly sounds a bit passive aggressive for a support thread.

Thanks op for starting this thread, please ignore those not taking it in the spirit you meant. Many of us appreciate the chance to talk about it.

My consultant has urged me to 'keep showing caution', not to full out shield but to avoid certain places, stay away from unvaccinated people (have a teenager who should get his soon thankfully), to social distance and mask indoors. But he also advised me to get out there and enjoy living when I'm feeling well enough to. I've felt generally better over the past 18 months and not had a hospital admission since Feb 20 which is unheard of for me. My doctor told me that pretty much all his patients were reporting the same thing, and that the respiratory ward had been much less busy with patients than usual (outside of covid). He said it's amazing what masks and social distancing has done for people like me. But also acknowledges it's not viable long term and while I could choose to keep shielding and perhaps stay better it would be pretty miserable, as I have to do that for long chunks of time anyway (some have to do it all the time, and I really hate the whole 'this isn't living, this is existing' thing people have kept saying when faced with a few weeks isolation. Really offensive to the housebound.)

So anyway I thought it interesting his experience as a respiratory consultant. He did say there are still lots of cases in the community and people in hospital, but they are mostly unvaccinated - but then said I should be cautious as some people like me we're still struggling due to immunosuppression and vulnerability.

I'm perhaps not being as careful as I could be, tbh. I shielded very extremely for the first five months as advised and it massively affected me in terms of mental health. But as I said I was better physically. It feels like a huge dilemma and I somehow feel guilty if I'm in a pub or something, like it'll be my fault if I get covid and get seriously ill, like I should be avoiding it for my family's sake. Anyone else feel that way?

@Madhairday it's been bliss. I've been unwell once, but no chest infections, tonsillitis, anything I usually get!
I'm still cautious but will go into shops and supermarkets now (with a FFP2 mask). I don't like people getting close to me that's not new though
I miss nights out with bars and clubs

I shielded very extremely for the first five months as advised and it massively affected me in terms of mental health

Yes, the first round of shielding was so extreme. All that carry on about stay away from the windows and people worrying about going in their own back gardens. Waiting months to get the green light to go for a goddamned walk and all the while people bitching about those who are vulnerable being out of their homes and saying they should go to the back of the NHS queue if they get sick.

I've never felt so other and othered. I'm not sure how I'll fair if I get the virus but I'm fairly certain I'll go nuts if I do all that again.

And for the pp, yes I do take flu seriously. I'm a severe asthmatic and my breathing can go to hell with the cold, I've been hospitalised with the flu and that wasn't pretty. I take as many reasonable measures as I can to mitigate risk, avoiding the power-on fuckers, I keep off public transport, get early jabs and the rest of the house gets a jab too. And then I get on with things because anything else is too much.

'I'm perhaps not being as careful as I could be, tbh. I shielded very extremely for the first five months as advised and it massively affected me in terms of mental health. But as I said I was better physically. It feels like a huge dilemma and I somehow feel guilty if I'm in a pub or something, like it'll be my fault if I get covid and get seriously ill, like I should be avoiding it for my family's sake. Anyone else feel that way?'

I feel the same, @Madhairday . I just had a very social weekend, and am now feeling anxious. I meditate every day, which helps to keep me grounded, but I can't imagine ever just saying 'yes!' to an invitation without a churn of anxiety.

I'm another one whose health has been stable for the first time in years. Sigh.

were CV people careful about catching colds/flu before covid?

I got a lot of exposure at work and from the kids.

However, I stopped going to pantos with the kids after I picked up flu in 2017 and got very poorly. (I was up all night doing breathing exercises to get the phlegm up, and I was worried I might need to be admitted. I am keen to avoid admissions of that sort in case I get another bug). I had been on a nebuliser and months of antibiotics the year before and been really poorly with a combined Pseudomonas infection and another bacterial pneumonia.

I rather like the idea of masks as a protective strategy in winter.

I was however working fulltime before covid, with just a the occasional need for time off to get over an emergent chest infection,

@herecomesthsun thanks for the thread. Whilst everything is turning normal, I feel more scared than ever. I know I have no antibodies from the vaccines, and have been told due to my meds which deplete t and b cells I'm unlikely to have any protection. Trying to stay outdoors with children but it's tough as not everyone understands why I don't want to go soft play etc (were those places ever clean?!?)

@Scottishgirl85 I've always had to be careful, and if I arranged plans pre pandemic my friends / family would have to make sure they were clear of colds etc

@SandysMam I've had a kidney transplant and was on dialysis before that. What are you worried about. Before anyone goes on the transplant list in these current times they usually recommend they've had both vaccines as you're more likely to respond before you're immunosuppressed. However when I was on dialsys I caught every bug going and seemed to always be ill. However post transplant I seem to be able to recover from colds etc quicker so I think just having a functioning body can help you overcome colds etc. Some transplant patients have had covid and been absolutely fine, my consultant said they just can't predict who will be the unlucky ones. As it stands roughly 8% of transplant patients who get covid die according to kidney care. But don't let that worry you, as some people post transplant are very very ill with a whole host of other illnesses which may make it worse. Either way I wish you all the best with whatever decision you make regarding dialysis etc. If you ever need to talk, feel free to message me

We have places we can go. I have thought previously that there may be some value in listing places by area?

We are still doing walks.

There are gardens locally with cafes (kids like those)

We are doing open air theatre.

We put a gazebo up in the garden which provides shade with a big table under it and play games and eat outside and I ring the changes cooking different sorts of food. That can be a fun activity if DD wants to make pizza.

It is still a bit 2020 I guess, but we are quite happy doing this.

We have amassed a large collection of games by now.

The kids also both have instruments to practise.

And DD is off today doing sports with a county cricket club (outdoor natch).

In a totally different place to you OP with a very vulnerable child. I feel for you

I'm CEV and immunosuppressed, DH is over 70. We were both vaxxed in group 4.

I had relaxed recently, decided that I must trust the vaccine to do it's job. If someone had said last year that I could have a vaccine that wouldn't stop me getting the virus but would keep me alive I would have wept with relief. So I have resumed normal life, go to gym, yoga, meet with friends and adult DC and their partners come to stay.

Well I now have covid, started with a headache on Sunday and slight temp Monday. Got tested Tuesday and was positive.
DH has sneezed a bit and is awaiting a pcr test.
My usual health problems cause fatigue, pain and I have a permanent cough and so that's my bar of feeling "well". I'm certainly unwell now but actually not scared. This time last year I would have been gripped with panic.

Hope you get well soon @CatAlice,

Part of me feels that deferring actually getting ill with covid would be great, if possible, as it gives more time for science to devise treatments etc.

I think we have been very lucky in getting as far as vaccines, as you say.

I'm planning on continuing to be pretty careful socially for several months more to get us over the winter months, and then reviewing things.

We do go on holiday - so far self catering, although we have some days booked in a hotel so we can visit granny.

We also do outdoor picnics to socialize.

@Scottishgirl85

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

I have primary and secondary immunodeficiency disorders and just drilled it into people that if they are ill stay away, same with it they have had a temp they need to stay away for a couple of days after they have recovered.

When I've been able to work I worked with children and the general public. And when I tried shielding last year it fucked up my MH and I had another break down which aren't good for my physical health.

I also found that this time has been anxiety-provoking; though there have been good reasons for that. Sooo pleased to have vaccines. Also very grateful to live somewhere rural with relatively low rates.

I'm normally on a biologic immune suppressant - was missed off the vaccine list initially - apparently biologics don't suppress your immunity according to the GP.... so was late in getting the vaccines.
I'm currently off the medication because I am immune suppressed all by myself - severly neutropenic and under haematology.
I have 3DC and no letter about them getting a vaccine (they are 12-15). Wonder if this is because they live with me half the time and not full time?
Unfortunately the ex allows the DC to go wherever they want and do whatever and never tells me anything. Wonder if he's trying to kill me off secretly.

So, we have an immune suppressed teen, and we haven't heard about a vaccine appointment yet either. GPs were I think told it was to be organised by 23rd August and I spoke to my GP this week, who still was waiting to hear more.

I found the email for our CCG group (Clinical Care Commissioning Group) who organise the vaccines and have emailed them.

I don't think it should make a difference if the children only live with you part time, it doesn't make you any less vulnerable.

@Scottishgirl85

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

I had breast cancer in 2019 and was on chemotherapy prior to covid. It was like a trial run for shielding (so for me it has been almost 2 years). Hand gel, disinfectant and avoiding anyone with so much as a cold.

@mirandaspanda

I'm normally on a biologic immune suppressant - was missed off the vaccine list initially - apparently biologics don't suppress your immunity according to the GP.... so was late in getting the vaccines. I'm currently off the medication because I am immune suppressed all by myself - severly neutropenic and under haematology. I have 3DC and no letter about them getting a vaccine (they are 12-15). Wonder if this is because they live with me half the time and not full time? Unfortunately the ex allows the DC to go wherever they want and do whatever and never tells me anything. Wonder if he's trying to kill me off secretly.

I'm on a biologic as well but not an immune suppressing one Xolair I have primary autoimmune neutropenia

@NotMyCat that's interesting. I've been on Benepali and humira. Now have to change drug classes.

@mirandaspanda I take Xolair for urticaria. On GCSF too for the neutropenia, fed up of injections

@Thatsveryniceofyou thank you so much! That kind of thing was exactly what I needed to hear! I have been convincing myself that every transplant patient that catches Covid dies so your post is incredibly reassuring!! Thank you so much.

@CatAlice oh no, hope you're feeling better soon. I know what you mean about how you would have been gripped with anxiety last year - I felt like that too. I'm so thankful for the vaccine and I have relaxed a fair bit. However I do realise I still need to take care.

@herecomesthsun sounds like we have a similar condition (with pseudomonas exacerbations etc). You do sound like you're being very sensible and enjoying the summer at the same time.

It's a worrying time, and people saying covid is over forget that it's really not for the CEV.

I used to wear a mask in the London fog as a 5 year old, on the advice of the hospital consultant. it felt very odd hearing all these people complaining about wearing a mask for a bit as a grown adult, as I had quietly accepted the medical advice as a child.

One positive thing is that mask wearing will look less odd in the next few years. People will think that it's a hangover from covid, and have been so very used to seeing them over the past year or so that it will pass as within the bounds of acceptable behaviour I think.

That could have an impact on all the respiratory infections as well.