CEV and hoping to get married

[Diam0ndsareagirlsbestfriend]

Hi everyone, first time poster here! Just looking for other peoples experiences!

Myself and my fiance are looking to get married in November 2022. My partner has a diagnosis of IGA nethropathy or Bergers disease. IGA/Bergers is an autoimmune condition and has sadly reduced my partners kidney function to 12% which means he is in Stage 5 kidney failure. It has been very physically and mentally draining for him, especially during covid which added extra stress. We have very luckily managed to avoid covid so far (touch wood) through taking lots of precautions. (Both triple vaxxed, wear masks, disinfect and strict hand hygiene, family take LFT's before coming over to our house).

With us wanting to marry, I am trying to get experiences of people that are CEV or in kidney failure and have had covid, (especially since vaccination) that have experiences they could share. I guess we hoping to put our mind at rest!

The only people I know who haven't had covid are CEV and are still careful with masks etc.

Could you have a smallish wedding, get everyone to LFT before they come. I would be more than happy to do that for my friends / relatives.

I hope you get it sorted!

Ah yes you are thinking the same as us, we would definitely ask people to do an LFT before attending, we are looking around 50-60 guests so it's not a huge wedding. Thank you very much for the reply

I would be very careful. We only had 30 people to our wedding and we both caught covid!

Ahhh no Purple Honesty so sorry to hear that :( I hope you were both ok and made a speedy recovery!

DH is CEV. He really wouldn’t fare well if he caught Covid.

we are the only people wearing masks if we have to go into a shop, we even still meet outside as much as we can. Neither of us would choose to be in a room with more than a handful of people in, even then we would want doors/windows to be open. It too big a risk for DH.

I recently heard from someone who had a small gathering & everyone LFT tested in the morning. that evening one little girl was feeling unwell & her DM retested her & it was positive, over the next few days several guests then became unwell. It’s such a worry when you have a CEV loved one or are CEV yourself

do you have an opportunity for an outdoor wedding at all? Wedding in a pavilion & open sided marquee for the celebration maybe?

DH is CEV, he has not one but autoimmune diseases, has had four vaccines. We both had Covid over Easter, and he was honestly fine. Tired, bit of a cough. I was more poorly than he was, and we are both back to normal now.

Ah we sound in a very similar situation to yourselves! My partner is the CEV one and he still rarely goes out, I tend to do all the shopping (always wearing a mask) and we limit contact to mostly meeting outdoors. When family plan to see us they are very careful on the lead up. If I want to go out to any social gatherings I usually stay at my parents away from my partner for around 5 days afterwards and test to ensure I don't have covid before returning home. It really is a massive worry when a loved one is CEV! My partner's condition is unpredictable and that's the reason we would like to marry sooner rather than later (happy to marry sooner but very sad re his condition) it's a hard situation as Covid isn't going to go anywhere yet CEV people are still having to put their lives on hold, hard to know what to do for the best!

The venue is open sided for the ceremony which is good ventilation wise and I'm sure for afterwards there are doors we could leave open to let fresh air flow through.
Thank you for your reply I appreciate it

Thank you for your reply, it must of been a huge relief that your DH was ok! Pleased you both recovered well. Thanks for the reassurance

Congratulations, OP!

Are you sure your fiancé has had all the covid jabs he's meant to? I'm CEV (autoimmune condition/immunosuppressed by its treatment) and I've had four, with my fifth coming next week. If he's fully protected you both might feel a little more confident re your wedding plans.

Good luck and I hope you have a lovely day 💐

By the way, I've had covid five times (thanks, immunosuppression!) and although I was pretty unwell twice - not enough to need any kind of medical intervention though - I was fine. I credit all those jabs with keeping my symptoms manageable!

My husband has IgA (been transplanted, now back on dialysis).

Happy to chat through our experiences. We got married 6 months after his first transplant.

There is also a Thread on here - sorry not great at links but try searching "rubbish kidneys support thread"

Also just to add we've had covid in the house 3 separate times, none of which he has caught it. I've had it twice! We haven't been particularly careful for the last 12 months or so - kids back at school etc.
He's had 4 jabs and 5th coming this week.

Kidney failure is hard... but don't put your life on hold because of covid as well. Even if he did catch it now, the strains are much milder, the medical care is much better AND he's been vaccinated. The kidney failure itself is much more of a problem than covid is... you're going to need your energy to deal with that... if the covid anxiety is still high for both of you I would suggest addressing that sooner rather than later so you don't miss out on more life that necessary

November seems a bad choice for a wedding for someone who is CEV. Any chance you can move it forward to Summer 2022 (or push back to Summer 2023)?

Firstly because the summer seems to be the time of year when Covid is at its lowest. But also because you then have a fighting chance of good weather and you can then have most of your activities outside.

If he's fully protected you both might feel a little more confident re your wedding plans

the thing is, immunosuppressed patients, such as transplant recipients, are not expected to develop a full immune response after vaccinations so won’t be fully protected. My DH was tested for antibodies after his 4th vaccine and has none, he has had a 5th vaccine but we still aren’t confident he will have much protection.

Personally, if I was to marry DH now, I’d be doing it with a registrar and 2 witnesses but we have DC’s and I understand everyone has to make their own risk assessments.

It’s a tough one but covid is here to stay now, as with the many other viruses that people who are CEV have to live with. Getting the balance between living and being careful is an individual one. Is the priority being married or having close friends and family with you when you get married?

Obviously the fewer people present, the lower the risk.

In your situation it’s certainly not unreasonable to ask people to take LFTs in the run up and on the day of the ceremony.

Outdoors and good ventilation significantly lowers the risk of transmission, so would it be possible to move it to the summer months so that there’s no cold air coming in and making it uncomfortable for those sat closest to the door and windows?

Hope you have a great day whatever you decide

Thank you so much!! My partner has had 3 jabs so far, although his kidney condition is autoimmune it doesn't make him immunosuppressed (until he hopefully has a kidney transplant) therefore he hasn't been eligible for a fourth jab, but will ask him to double check with his consultant. I am hoping he will get an autumn booster before the wedding which would definitely help put our minds at rest! Thank you again Ophelia xx

Wow, well done on getting through having Covid 5 times! You must be made of some tough stuff, so thankful we have the jabs! Thank you for the reassurance also x

Thank you for the advice re threads and offering to chat through your situation.

Kidney failure can be very tough on the patient and also on the family living with the patient too. Its awful to watch. How old is your DH if you don't mind me asking? My fiancé is only early 30's bless him. Did you get married during covid? If so how did you mitigate any risks? Sorry about all the questions!

Wow! Thank you for this!

You've hit the nail on the head. This is the predicament we are in not wanting to let covid take over our lives any more than it already has but at the same time not knowing what the implications are should Fiancè catch it. Like you say, vaccines, anti viral medication and testing all really does help and will be used to mitigate risks as much as possible. His condition means we are not 100% what the future holds (though we stay positive and take each day at a time) hence wanting to marry this year.

I'm CEV, haven't had Covid yet and got civil partnered just before the pandemic. Planning our 'full' wedding for later this year with very similar concerns to you.

Thank you, what your saying is exactly right. Although my OH has an autoimmune disease, it does not make him immunosuppressed until he receives a transplant. My family are fairly small at around 15 people however he has a rather large amount of close family (6 brothers and sisters all with 1+ kids of their own) so it's hard to cut numbers however they all know his situation and would be as careful as possible on the lead up and test.

We will be asking people to LFT for our wedding. Still wear FFP masks and I am pretty sick so was near housebound before the pandemic anyway. At close to shielding levels of staying inside still, but my partner goes to work wearing a high quality mask all day.

OP, your fiancé's consultant can write a letter to state he would benefit from a fourth jab, they will accept that as evidence to give him one.

Ah bless you, sending love your way  it's been very tough for CEV people/households and still is. We are still almost nearly shielding (both WFH FT and only nip to shops masked up if we need anything) but my partners condition is unpredictable and we are not sure what the future holds therefore it has made us want to marry sooner rather than later. November is the soonest and we aren't wanting to hold off until next year as we aren't sure what could happen. I think hopefully all CEV patients should of had a booster in the autumn which may help and if you have good ventilation, and everyone LFT's beforehand and exercises caution, we are hoping and praying this will be enough. It's hard trying to strike a balance between not letting covid take over and ruin things more than it already has! And not catching it! I hope you start to feel a little better and your wedding can go ahead as planned @Innocenta x x

Thanks again @Innocenta I will be sure to speak to my OH about this as a 4th jab would help ease his anxiety and of course help if the worst should happen!