I have a situation........

[MistressoftheDarkSide]

I'm going to start this by saying, predictably, I am not intending to start any sort of bunfight or controversy, so while this is a personal situation, in order to avoid any more emotional overload I am going to frame it almost as a scientific abstract, because I have questions that as yet cannot be answered officially, and I need help - neutral, fact based help please, in order to correctly frame those questions when the time is right without pissing anyone off.

On Wednesday my DP, male, 52, collapsed with a serious brain bleed. Within 6 hours he was having life saving surgery to remove a clot from the brain. He came through it and we are now waiting to see the long term outcome. I am getting updated 2/3 times a day by ringing the ward as instructed.

At hospital number 1 he tested positive for Covid - he was asymptomatic, double vaxxed and had his booster almost one week exactly prior to this happening. He had complained of a couple of headaches in that week but they responded to normal painkillers. He and I had a quiet relaxed weekend. We did not go out at New Years and had one friend who visited, just recovered from Covid and negative on LFT. He worked on Tuesday, was fine in the evening, and his collapse occurred at around 5am on Wednesday morning.

My questions about this are:

Would the test be a blood test or a swab? I ask this because when I was allowed to see him before transfer (because at that stage I was being told death was absolutely a possibility, he was in semi seizure and I can't imagine swabbing would gave been an option, even prior to intubation and sedation which happened after we were notified of his test.

If it was a blood test result, might it be residual from the Covid we had mildly around the end of August?

As a close contact, and unvaccinated (just don't go there) when I got home I did an LFT which was negative- todays test is also negative and I will continue to test and isolate of course because after 14 days they will test him again and we might be able to visit - although we have to take that under medical advisement.

Test and trace called him (hollow laugh) and if course i answered- as ut was the day after and Asymptomatic Covid is the last thing on my mind they have graciously said they wont pursue me till Tuesday but contact details are mandatory. Everyone who was a contact are aware of the situation and as yet there are no reports if positive tests. Omicron has not been mentioned.

Further questions - he was on a ventilator due to the collapse and surgery for around 36 hours, and is now on minimal oxygen support but has a mild chest infection treated with antibiotics in the last 24 hours which the doctors say is 99% due to being on the ventilator not Covid, as it hasn't affected his breathing much.

Next 48 hours are obviously crucial, but they are already talking about transfer back to our local hospital rather than staying at the specialist unit, which us very encouraging but will of course depend on many variables so I remain pragmatic, stoic and a few more inches below the ceiling than I was on Wednesday (possibly the longest scariest day if my life so far and I've had some doozies, believe me)

Other issues are confusion, agitation etc - normal in the circumstances I'm told - but he's asking for me so I believe his memory might be okish so far. His left side is paralysed, but he has speech though slurry and jumbled- this is likely to improve as various medications are reduced.

A medication given to deal with agitation caused a spike in blood pressure, obviously not ideal in the circumstances so that has been stopped and he is stable again. His drain has been removed, and he has staples (actually he's probably going to live that down the line for various reasons.....yes I know ut sounds weird but if you knew him you'd totally get it).

Disclaimers - I not a fragile nor hysterical person. Knowledge and power are my watchwords, and I can absolutely ignore anything that I recognise as unlikely or unhelpful.

I'm putting this here objectively to gather any insights from those who may have knowledge or insight or can point me to anything I've missed in my forays around google.

I appreciate every case is different and ultimately it will be his Doctirs who can give me the accurate picture, but one if the ways I process trauma is to work through as much as I can until it "levels out in my brain". Compartmentalising is my thing.

So have at it if you like. Or not. I have a great family and friends support network so am covered emotionally, but my tendency to to analyse can be a little tedious especially as I am mindful everyone around us is in shock and highly anxious too.

So in some ways I'm hoping this might be the other outlet I need in order to keep the pressure if them to a minimum.

I really don't want this to become any sort of battleground- I don't want the thread deleted but if it offends, so be it.....

Oh, the phrase used is "intracerebular haemorrhage" but none if the medics have said stroke..... yet.

Thank you in advance.

Thank you x

It's all so weird isn't it..... like Russian roulette with a ruddy sub machine gun......

I'm sorry you are going through this. Went through similar last year and the uncertainty and mixed emotions can be very hard and bewildering. Try to limit how often and how much info you pass on, that in itself is exhausting to do, and I found that others latch on to one thing and then don't grasp how the situation can so quickly change. And look after yourself and your dc. How old are they , can they do any of the calls? Prioritise what you need to do to get by.

OP I can imagine what a shock you have had, & I totally understand you trying to figure it out. I think sometimes things can not be explained with certainty, & as hard as it is you just have to accept that. I hope your husband makes a good recovery & remember to look after yourself.

Sorry to read what you have gone through.
Do they think the bleed on the brain could have been caused by the vaccine? Has this been considered?

I'm so sorry that you're going through this.

My father had a stroke at 59, but being a stubborn old ***, he didn't get hospitalised for virtually 24 hours. He would never refer to it as a stroke - it was always 'when I had the bump'!

It took a lot of hard work and determination, but he got back to a pretty normal life - slightly weak on one side, but played golf, drove etc. It also made him immediately realise what the important things in life are - and it wasn't work!

He was around for another 20 years, bossing us around, meeting his grandchildren - and his influence lives on.

I wish the same for you and yours - but I can remember the terror I felt in my 20's. My thoughts and prayers are with you and your family.

What vaccine did he have for his booster op?

If I could just stop my brain from cycling through the possible outcomes..... permanent paralysis? Speech impairment? Too early to tell, but 6 also know recovery may be good...... but it's so hard to be patient..... and psychologically, well, he's proud, independent likes to be "in charge" ..... hell be hating this.

Honestly I think any one of us would hate finding ourselves impaired in that way. There's no reason to think your DP will be permanently damaged, our brain can grow new cells, make new connections. There are plenty of inspirational stories of amazing recoveries. You have to hang on to that.

Also please look after yourself, get plenty of rest and do some deep breathing exercises and/or listen to relaxing music to unwind. Don't apologise for letting these feelings out here!

I just want to wish you and husband all the best, I can imagine what you are going through as this was our family last year.

My dad age 62 ( never had covid ) had a cardiac arrest 5days after his second vaccination. We have no evidence that it was linked to the vaccine but we do believe that if it wasn’t the cause it definitely impacted ( never diagnosed with any heart problems ). The doctors couldn’t tell us for sure it wasn’t vaccination related but said it could be possible but was told at the time clots tend to be in the brain when linked to the vaccine.

My dad never full came round after coming out off sedation and we had to make the choice of removing his ventilation due to it causing him to have a chest infection around day 11 he lived a further 7 days but had brain damaged to we never got any kind of communication from him.

I have my fingers crossed for you that your husband makes a fast recovery and wish you both best.

sorry your husband is unwell.
I hope he mskes a full recovery.

it could be related to the vaccine, or the covid infection, or just bad luck.

you can report this potential side effect of the vaccine to the mhra yellow card scheme. give as much detail as you have.

There is a compensation scheme if this was caused by the vaccine:

www.gov.uk/vaccine-damage-payment

I am so sorry you are going through this.

I think the priority has to be your mental health, staying strong and supporting your DP.

I have had two friends with brain bleeds, what seemed out of the blue, many years ago. One, the husband of a close friend, in his 30s, after a park run. Another, a student friend, in his 20s, what seemed completely out of the blue. The recovery was long and hard but both men recovered all faculties. The hard part was the recovery and mental trauma from it for all.

I am so sorry you are going through this.

I think the priority has to be your mental health, staying strong and supporting your DP.

I have had two friends with brain bleeds, what seemed out of the blue, many years ago. One, the husband of a close friend, in his 30s, after a park run. Another, a student friend, in his 20s, what seemed completely out of the blue.

Oops sorry something went wrong on my phone.

I am so glad the NHS was there for you OP. That is really good given the current strains. Stay strong and all the best for the recovery.

I don’t think there is any point thinking about what may have caused this, unless the doctors can tell you for sure.

Try and stay as positive as you can. Thing about a trauma is that the negative thoughts keep flooding in and they are draining. Try and fight them off. Focus on the good. All the best.

It sounds like he had Covid and the booster together, which is bad luck. I know someone who caught Covid in April 2020, whose only symptoms has been blood clots, he's fine now and I hope your partner is on the mend.

Per 1,000,000 people, around 165,000 will develop blood clots from Covid infection. Around 4 will develop it post booster, so the odds are very much towards Covid being the underlying cause.

Just to say I am thinking of you. The whole situation is awful and hideous.
I know my brain would be whirring round every possibility which wouldn't help but I couldn't stop it.
Somehow you have to just be there and try to look after yourself so you are in a position to look after your family. I hope your DH recovers quickly

A stroke occurs when part of the brain dies when the blood supply is cut off. This can occur when a clot from another part of the body blocks a blood vessel in the brain.
My FIL had a massive stroke a year ago. His was complex, he had a fall and hit his head and due to the medication he was on (blood thinners) he had a small brain bleed. He had a short stay in hospital where they stopped his medication. Two weeks later he had his major stroke. It is not clear whether the stroke was a result of a clot breaking off from the bleed he had had or due to a clot forming elsewhere in his body due to being off his blood thinners. There is no evidence that it was due to the original bleed but since his GP should have followed up and restarted his medication at some point they are not very forthcoming about the cause. To be fair no one knows. FIL had a history of TIAs ( mini strokes) is elderly and has vascular dementia so was a stroke waiting to happen.
Your DP, however , sounds fir, healthy and not the same level of risk. There may be a link with Covid, you are much more likely to have a brain haemorrhage with Covid than the vaccination but it is a risk, albeit very,very small.
Your DP’s medical team will be able to give you a better idea when he has recovered. Some people are born with week spots in the arteries of their brains. They can live their whole lives in blissful ignorance or they can have sudden haemorrhage from these weak spots. Your DP’s scans may have identified a cause but due to the unique situation we find ourselves in it is not possible to sit down and discuss all of this with you. Also as he is your DP are you his next of kin. They may not be able to fully discuss everything with you at the moment.
I think at this point in time you focus on his day to day progress rather than why he is ill. It has happened, there will be plenty of time to explore the reasons when he’s back to normal.
I have recently had treatment for breast cancer. As the patient all I wanted to know was am I going to survive. The whys and wherefores were not foremost in my mind. I’m a woman, women get breast cancer because we have breasts. All of us are at risk of any condition ( apart from the odd condition that is related to our sex) that’s just life.

I'm sorry to hear this about your DH OP.

I do know of someone who this happened to way before vaccines were a thing.

Someone I know had a severe stroke caused by 'asymptomatic' covid - the first they knew of it was when he had the stroke and tested positive. He was otherwise fairly young (40s) and very fit, healthy and active.

I hope your DH makes a full recovery. 💐

Just want to say thank you for all your replies, good wishes and for sharing your experiences

My DP is slowly improving, so I'm just taking each day as I can and focussing on practical things I need to consider for his eventual return. One day at a time and all that....

But I truly appreciate being able to vent here.... it helped so very much.

Sorry about your DH op

And yes, I am aware of the timing after booster but..... not willing to speculate unless I can find some data that shows similar cases.... which obviously will be very rare...

Hopefully I can speak honestly without accusations but I've recently seen a growing number highlight an issue with the data which is people not being classed as 'jabbed' in statistics until they are 7 / 14 / X days post jab.

This makes sense when using the statistics to show how effective the vaccines are in the context of "it takes 14 days for immunity to build". Counting anyone 2 days post jab as vaxed, or 2 days post booster as boosted might skew the figures against VE.

However it can misrepresent what's happening in that small window of time post jab when (I've read) you can actually be at highest risk. Which makes sense to my uneducated brain because your immune system is presumably being kept busy fighting off the vaccine which will give you the future immunity.

My worry is that trying to find data in that post 1 to 2 week period will be a minefield when so many statistics are published as jab + X days.

But maybe you'll find some comfort / understanding / answers reading up on the arguments for greater transparency around that small timeframe? If there is a higher risk immediately after vaccination (and I'm not saying there is -- only the data can show that) then it might help future families to know about it so they maybe try to time things accordingly or take extra precautions.

I don't know if that helped OP but I hope you find some comfort.

My worry is that trying to find data in that post 1 to 2 week period will be a minefield when so many statistics are published as jab + X days.

that what's the yellow card scheme is for.

report this there yellowcard.mhra.gov.uk so that the data is available to look at at a later stage. in theory drs and pharmacists are supposed to fill it in as well, but I suspect effects are under reported.

I just wanted to update for those who have been so very kind.

My DP suffered a second bleed about 8- 10 days after the first.

Yesterday he passed away.

I was able to see him and given EOL privileges which allowed those closest to him to say their goodbyes. I will be forever grateful for the care and compassion afforded to us by all his medical teams. I have been hugged by nurses, and am reassured somewhat that the world can still be a loving place.

It is of course too soon to even really think about the how and why, but the second bleed on the other side of the brain is rare with no discernible underlying cause which has been ruled out by multiple scans. However, I think I do need when appropriate to ask for a thorough investigation.

Meanwhile my family, friends and a very wide community are "holding space" for me while I look at the scattered shards of a life that was never perfect, but very much right for us and i wonder if i will ever feel unbroken again.

Anyway. It is what it is.

Hold your loved ones close and never be shy of telling them they are loved.

Oh op I am so very sorry for your tremendous loss.

I'm so terribly sorry I never know what to say in these situations but I am thinking of you and didn't want to read and run.

I am so, so sorry

I'm so sorry for your loss