To think my husband is gravely ill at the wrong time?

[MyOtherCarIsAPorsche]

Masses of confusion.

Husband spoke to GP yesterday morning and described his chest pain. He was advised to call an ambulance. My husband refused because he didn't think he needed one - thought he had chest infection or torn muscle.

He went to A&E - was sat in a corridor from 10.30am - he had ecg, x ray and blood test. He continued to sit on a chair in the corridor all day.

He was told he was waiting for blood test results. These came back at 6pm. Then he had to wait for a CT scan - then rushed to resus.

Dissected aorta from heart level to naval level.

I was called to be allowed to sit with him because I wasn't allowed to be in A&E. Was then told he was being blue lighted to another hospital an hour away for immediate surgery. I asked is this time critical? The answer was - yes life saving.

Paramedics arrived and told me to set off to this other hospital. There were three paramedics. One said 'I'm not taking him because I can't use that bit of kit, I'll lose my job if something goes wrong'. No advanced paramedics available and no doctor available to go in the transfer.

I was 15 min into the journey and then called back to the hospital.

No surgery.

Trying all day today to get him transferred. Nothing available.

He's critically ill.

I'm out of my mind with worry.

There's a saying about not being ill on the weekend. The standard of care is not the same. The 24hr cover appears to not exist.

I feel like we're being fobbed off with poor excuses big style.

Oh wow… OP. I have nothing useful to add just wanted to say how sorry I am you are going through this. I wish your husband a speedy recovery.

I've been following and I'm in awe at your strength @MyOtherCarIsAPorsche
As well as your humour and love for your DH, your family and chocolate cheesecake. ☺️
@olympicsrock Wow. What a bloody star you are. I hope I never need your advice but god, what a comfort you've been to the porche 😊
Let's hope he's stronger by tomorrow 💐

The absolute best thing about Mumsnet when you need help. You just never know who is reading, and there is such an amazing range of expertise

Been thinking of you OP. Continuing to send strength.

@olympicsrock you are an absolute queen.

This probably isn't on your daughters radar. So why don't you just say they're not sure what the problem is, but it would be good for the whole family to be checked as a merely precautionary measure. If you make it casual then I'm sure she'll take her cue ftom you and feel reassured.

Good choice of user name @olympicsrock. I had back surgery and went from being able to walk only 5 mins at a time to walking normally. You surgeons absolutely rock! Thank you all so much. 🤗

Say what @olympicsrock suggested. Don't fudge it. Be straight but reassuring and supportive..

Say what @olympicsrock suggested. Don't fudge it. Be straight but reassuring and supportive..

really hope your husband is doing okay, OP

I have name changed for this as it's a bit outing. I have EDS and when I was giving birth I developed intracranal hypotension from having csection, which is low intracranial pressure.

I am sure you have other things to worry about right now but it is something that if your daughter has, that her medics know. the headaches after the birth were even worse than child birth.

i was lucky my treatment was carried out quite quickly in the form of what is called a blood patch but if your daughter has twins, it'd be so much worse

im okay now but i didnt know i had eds at the time and if i had the doctors would apparently been more aware of the risk of a csf leak.

@redbellsringing

Many thanks - I'll Google it and let her know.

I know you've been through a horrific ordeal OP but you've had such wonderful help and advice on this thread. There have been some amazing posters on here.

@Badger1970

Absolutely - I've had fabulous support. I appreciate every single comment.

Especially @olympicsrock - so brilliant, generous and kind.

Thank goodness for platforms like this - restores your faith in humanity.

He's had another bad day. He's still in CICU and will be tomorrow. The good thing is, as long as he is in there, I can continue to visit him.

His left hand, arm, shoulder and left side of chest continued to swell. It was found he had a series of large blood clots. He had a dose of 18,000 (some type of unit) of fragmin - the average dose is 5,000. Both of his lungs are still partially collapsed.

His wedding ring was cut off. When I got there, he gave me the ring and said that we'd have to elope to Gretna Green and get married again. (I don't think he's thinking straight.)

Hopefully, tomorrow will be the day that he turns a corner.

Good grief @MyOtherCarIsAPorsche he’s really going through the wringer, and you with him. Everything crossed he’s on the mend very soon.

He does sounds like a darling man @MyOtherCarIsAPorsche. I think once he’s out some kind of romantic celebration of your life together wouldn’t go astray, you know…

I agree that the communication has been terrible. I do hope he stabilises very soon. At least the surgeon has NOW finally stated that he knows about the connective tissue problems for future generations. Knowledge is power and you can future-proof a lot of these cardiac problems.

How is your pregnant DD feeling? I also carried twins (39.5wks.) I also have EDS, but didn’t know then. I had a planned c-section. I had a minor uterine haemorrhage, which they very quickly sorted out. I had had a C-section with my first DD as well. Tbh, I recovered very well and very quickly from both. I took the advice of the nurses and got up and walked around as much as possible to avoid adhesions.

Have you had the reveal yet, Oh Knitter, of Extaordinarily Beautiful Things? My twins are B/G twins and I have never, ever called them “The Twins” as I had friends with 16 year old fraternal girl twins when mine were born who HATED it. Mine will be 16 later this year and both tower over me. (I’m only 5ft. It’s not that hard.) People are surprised to discover they are related, let alone twins. As I said further upstream, they and their older sister all have different EDS symptoms, but their hearts have been scanned and are all fine.

Really hoping today is a better day for him and you x

Hello OP , checking in on you. Sounds like a mixed picture.

I would have expected him to be still on CICU at this point to be quite honest given what has been done . He is much better off there having 1:1 nursing care than on the ward. The lung complications and delerium he is having are really common.
If’s he’s joking about going to Gretna Green then his delerium is improving as your brain has to be working to make a joke like that. He’s making progress.

It sounds like his has had a DVT very high up in the left arm perhaps at the level of his collar bone. This will have happened partly because he spent 10 hours with his arm out to the side . 5000 units is standard preventative dose and 18 000 is ‘treatment dose”. It aims to stop the clot getting bigger. Usually in time the body will break the clot down or grow new veins around the blocked vein. Expect his left arm to be swollen for a few months ( but much better than it is now! ) .

How’s your pregnant daughter?

sending love and strength. Hope you both have a abetted day xx

@olympicsrock

As I've mentioned before - thank you is not enough. You have explained every step of his treatment and symptoms. Without you we would still be in the dark. Genuinely - how can we repay you? Your posts make me cry with relief - you have been my crutch in my darkest hour.

My daughter who is expecting messaged her midwife yesterday and was told to wait until her next consultant appointment which is in two weeks. Her 20 wk scan is next week. She is exhausted every day and frequently breathless - even when talking. She can't walk far - has to take the car for a short trip to town instead of walking now. I've been asking her to think about asking to work from home or stopping work for now. She's had annual leave this week because she's been so worried about her father - she's fallen asleep every afternoon for 2-3 hrs.

She's said that she noticed a marked deterioration in health after her first child was born. Her heart rate is 'normally' over 100. It's been remarked upon by every doctor as long as we can remember but not really investigated until recently and she's still waiting to hear back from a cardiac consultant since being diagnosed with right bundle branch block and sinus tachycardia before she was expecting. Most doctors said her high heart rate was due to anxiety.

My older daughter frequently has crushing chest pain, she goes incredibly white (scary colour), sweats, faints - have been told this is due to increased blood flow to stomach after eating and to eat smaller meals more frequently - although she gets 'attacks' when she's not eaten for a while. Her tilt table test was cancelled twice before and during the pandemic - not heard anything since.

Our son has had poor wound healing after two hernia operations - I'm wondering if he is affected by EDS.

My family, going back generations, are very hypermobile - party tricks galore and there's a few who have died early from brain aneurysm. However, this (EDS) is now looking like it could come from my husband's side.

It's vital that family medical histories are considered - but up to now I'm not sure that we've been taken seriously by GPs. It took years for my daughters to get a diagnosis - we eventually saw an eminent doctor in London (privately) in order to explain my daughters' many problems. After a flurry of different scans, referrals, tests that my daughters underwent in their late teens, a GP said to me that I wouldn't be happy until my daughters were ill. To which I replied - my daughters are ill. I knew that he was saying that he thought I had munchausen's by proxy - that was a very deep low point in my life. My daughters would insist that I accompanied them to their GP appointments because they were so frustrated that they weren't being listened to and they both needed an advocate with them. They were diagnosed with anxiety and fibromyalgia originally. Then they were diagnosed with BAM and IC - we since know that bowel and bladder symptoms are due to connective tissue disorders.

Did I feel vindicated when they got their EDS diagnosis?

No - I felt very bad that they had gone 20+ years without a doctor who would join the dots for them and a mother who didn't sort this out for them. I also feel terrible for ignoring their cries when their legs were making them scream in pain during the night - insisting that they were just growing pains like I'd been told. The exact same pains my granddaughter is now experiencing - her consultant refusing to diagnose because he doesn't think it appropriate to label children. My granddaughter is a carbon copy of her mother even down to the autistic traits - autism very common with EDS. I get really frustrated.

And I apologise for rambling once more.

Been catching up on your posts, I'm sorry it is still such a hard time.

You cant be too gentle with your daughter because she needs to be speaking to the consultant.

The mysogyny in the NHS means you sometimes get a better outcome if you take a man along with you, even if they sit there mostly saying nothing. Can the twins father be an advocate for them and their mother?

Been catching up on your posts, I'm sorry it is still such a hard time.

You cant be too gentle with your daughter because she needs to be speaking to the consultant.

The mysogyny in the NHS means you sometimes get a better outcome if you take a man along with you, even if they sit there mostly saying nothing. Can the twins father be an advocate for them and their mother?

apologies for double post, nothing appeared to happen with the first one.

@Fraaahnces

No gender reveal as yet - she wants her father there.

She's exhausted - almost halfway.

She also has a daughter - just turned 2 yrs.

I'm knitting pink and blue in equal quantity, even though I am aware I could be wasting time on a particular colour and even though I personally prefer babies in white 🤣

I am coming around to thinking that maybe we should get married again - even though I don't know whether he's still 'under the influence of mind bending drugs', I may hold him to his suggestion. We've been married 35 years - I was 20 when I got married - he was 24 and we thought we were both very 'adult' - it's extremely young by today's standards. 😳

I'm wondering if we could all have some type of genetic testing - to see who exactly is affected, because although many symptoms can be managed individually - there can be some quite serious repercussions medically. For instance - my older daughter seems to have a problem with anaesthetics - they don't appear to work on her properly, she requires much higher doses. Both my daughters have had premature rupture of membranes - common with EDS. Oh no - there I go rambling/stream of consciousness.

I'm secretly hoping that my daughter will have boy/girl - you did so well to get to full term! She also doesn't want them to be known as the twins - I've taught quite a few twins over time, some separated by class but I still can't think about them other than twins. That will be a hard habit to break. I am consciously trying to turn away from knitting matching items - but I can't help it 😬 The baby stage is all too cute. I'll be knitting lots of cute 'props' for a newborn photo shoot soon 🙄 These photos are made into books and not made into huge canvases and hung around the house on every wall - before I get negative comments about 'photo shoots' - the photos remain private and are just for posterity. 🙄

Many thanks for your input - keep in touch?
☺️

@alreadytaken

Her partner is brilliant. He's very concerned and insisted she rang her midwife yesterday. He goes to all the appointments he is allowed to attend. He also understands - when he is 40 he has to have heart tests as his own father has aorta problems. He already has some sort of familial hyper cholesterol syndrome from his mother's side.

it appears that the ladies in the family attract partners with similar hereditary medical problems 🤣

Oh - you just have to laugh 😬

I have another very important question requiring urgent medical attention.

Is it OK to have a Mars Bar for breakfast?🤔

well chocolate comes from cocoa, which is a plant, so it’s surely one of your 5-a-day. And think of the protein in the milk. A very good choice 🤣