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!

Do you really need 50-60 people there?? Thats quite a lot...as you really want the marriage I would massively reduce the numbers and therefore reduce the risk...

I will discuss this with my partner again, thank you. From my side there are only around 18 people. My partners family make up the numbers to around 55.

I think part of your problem is around the narrative of CV / CEV and how it changed during the pandemic. At pre-transplant pre-dialysis stage I don’t actually think he’s classed as CEV anymore (hence him not getting 4th & 5th jabs). I know that doesn’t necessarily help you, or does it calm the worry significantly, but actually it does mean that the scientific evidence now indicates he would highly highly highly likely be fine if/when he catches it.

I honestly suggest you both get some counselling to address this and wider anxieties around his condition.

To answer your question above my DH was late 20s at diagnosis, first transplant early 30s. Now approaching 40.

@Renallychallenged I don't think you should be trying to suggest someone is not CEV if they've been told by their doctor that they are. Being CEV does not imply that a person is anxious.

Thanks @Diam0ndsareagirlsbestfriend 🤗 I hope your wedding is able to go ahead safely and is everything you've both been dreaming of! ❤️

Completely agree they should take this up with the medics. My point is more around ensuring they DO get the facts and not work off outdated assumptions. Many many people were scared into hiding in 2020 and there has not been enough work done to support them to come out of the other side. This is an early 30s guy who isn't sick enough to be offered a 4th & 5th jabs yet is still severely limiting his life to shield from a virus which is very unlikely to do any significant harm (now, in 2022). This is not an attack on shielding or the actions of 2020 - you need to make an assessment of current risk, not 2020 risk.

@Diam0ndsareagirlsbestfriend my intention is only to bring a different perspective. Marrying someone with IgA & 12% kidney function is going to be a long hard slog, covid or no covid.

A wedding of 50-60 known people who love you (and therefore wouldn't come if they were ill and would LFT prior) is actually pretty low risk compared to a hospital, cinema/theatre of strangers or the plane you will hopefully travel to honeymoon on. Your fiancée needs to get back out into the world while he can (for both your sakes), so you can make the most of today when tomorrow isn't promised.

@Innocenta thank you very much it means a lot! And I wish the same for you too I hope you have a very happy wonderful (and safe) wedding! Best wishes for the future ❤️

@renallychallenged @Innocenta I really appreciate the different views and perspectives of yourselves and all others that have posted on this thread and welcome them. I can see all points of view. It all helps to get myself and my fiancé to start to thinking in a different way. I will be going through this thread with my fiancé later to share all of your perspectives with him. Again thank you and it is very much appreciated!

I agree with what @Renallychallenged has said (saying this with a lot of love as a fellow renal patient). Nearly everyone now except the immunosuppressed isn’t counted as CEV because outcomes have improved so much with treatments, vaccines etc. I know my renal consultants are a lot more relaxed about it.

I had a transplant 7 months ago and so am heavily immunosuppressed. I’ve been told to wear a mask by my team but otherwise live as normal - use public transport etc. I’ve also had to go to clinic multiple times a month and transplant patients are definitely more relaxed than they were previously. Before I had my transplant (so right in the middle of the pandemic and delta) my consultants advised me to be careful but that they thought I’d probably be ok even if I did get it. For perspective I’m early 30s female and otherwise healthy - but my gfr was 6%. Obviously there will always be a risk but in your early 30s I honestly think life is too short…

Is he likely to get a live donor? If so it may be worth considering whether to get married after that… he will likely feel so, so much better. I had no idea how unwell I was pre transplant and so if you have the option, wait to celebrate this amazing day when he’s well (understand that may not be an option).

I would also recommend checking out the Kidney care Facebook groups… you’ll see lots of people being careful (and many who aren’t!) on there but lots of people who have had covid and been fine and may help ease your fears.

Good luck and all the best!

@Jokerstotheleft congratulations on your transplant that's brilliant

To add to the live donor question... if one is likely then now is time to get the work up done. Testing etc is taking at least a year at the moment. If he can avoid dialysis then thats much better for him

@Jokerstotheleft Congratulations on your transplant! That is brilliant!

The complicated thing is that there are pathways to being CEV outside of your experience and the overall clinical picture is relevant. Ultimately no one can say better than what a person's doctors have told them. I am not listed for any transplant, that's not the cause of my CEV status, but I'm also not 'anxious' or wrong to listen to the personalised advice from my doctors. It's important that people in one CEV group don't demonise others because we all face related but still different challenges x

I'd just go to the register office with 2 witnesses.
I think you'll have to rethink your plans , unfortunately Covid is here now , most people are ok but understandably if your fiancé is CEV you not to be more careful.

Completely agree @Innocenta that they need to talk to their consultant. Just wanted to make the point things might not be so bad - I was really surprised to be honest by how relaxed my team are now about covid and my risk from it, and from my interaction with other kidney patients that does seem to be the overwhelming view. Obviously if you are immunosuppressed, have lots of other issues, are frail generally then I totally get it. But as @Renallychallenged said, things have moved on a lot from 2020 when we all (rightly) shielded and they may just need to check that’s still right for them 😊

Yes I totally agree with you there, @Jokerstotheleft ! It's wonderful to see the risk reducing, and what that means for people. 🤗

Thank you for your input and comments everyone. My and my fiancé looked through each and every one.

We have decided we are getting married this year, we don't want to wait, as you never know what is around the corner. We booked the venue we wanted with our family and close friends in attendance and asking everyone to LFT the morning of the wedding.

We have spoke to other people in the same stage of disease as my OH in other forums and thankfully most people have been mild or have felt rubbish, but pulled through. In the lead up to the wedding (since we have been shielding since March 2020) we are going to try and build up confidence going out a little more over the summer meeting outside etc to get us used to seeing others again before the wedding day, but will be doing this safely as possible, i.e making sure people test, don't have symptoms. Thanks again for all of your valuable input!

My 80s Dad with COPD so CEV has just had Covid. He's had 4 jabs and sailed through it. Used his usual steroids and antibiotics. Contacted 111 and they decided not to perscribe antivirals (he had the priority PCR and told eligible for antivirals) as he wasn't badly effected by Covid.

@Aurorie11 Aww I'm pleased he got through it really well and he's been ok. Thank you for the reassurance!