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.

Okay kids… if you want an EDS Educational Forum, please go and post one. This is a thread supporting OP during a very stressful time. Interrupting a light-hearted conversation to interject with “Well, Actuallys….” is not helpful. OP’s DH is currently where he needs to be. Hopefully that from this awful situation, one doctor will speak to the rest and OP will be heard.

@Fraaahnces Nobody wants an EDS educational forum. We all want to keep the focus on OP and her DH, believe me! But it's still important not to post incorrect information about EDS, because anyone who does that risks causing extra stress for OP during this difficult time, as well as contributing to the general incoherency around EDS that is a wider issue online. Keeping a focus on OP's situation includes an avoidance of scaremongering and anecdata x

Goodness, OP, you really have been through it. Hopefully, things are looking up now.

I'm intrigued by the autism/EDS coincidence. My late DP's niece has both Asperger's and EDS and I have never heard it suggested before that both conditions are often present. However, I once had a client (also female) with ASD and EDS and both were present among her maternal relatives.

DNiece is the only one on the paternal side of the family with either. She has a full sibling and two half siblings, none of whom have EDS or an ASD, and neither does her mother. However, mother was adopted as a baby so nothing is known of her birth family's medical history.

Anyway, don't beat yourself up about the delayed diagnoses. It's not your fault in any way.

@LakieLady - it is a recognised thing, the link between EDS and ASD. I found papers on it for a friend who was asking about it a couple of years ago - if you do a search on Google Scholar, it should bring some up.
It's a shame it's not more recognised in the general medical field.

@MyOtherCarIsAPorsche How are you and your DH today? I do hope that he's settled down a bit. Must be so weird in there with no visiting. Have you knitted the full kit yet?

@Fraaahnces

He's just gone to HDU (an hour ago) so no visiting now - I can get back to knitting.

I'm knitting white from now on - don't want to go too far with colours as I don't want to waste time going too far with the wrong colour. I've done some pink and blue for the gender reveal/sex not gender brigade. So I'll start white later tonight.

His oxygen flow has been turned down. Heart rate still high, blood pressure is now quite low? He's not eating - he was sick on Tuesday after they gave him some ice cream and has refused to eat since. He's drinking normally.

I am definitely thinking that he is out of the woods and well on the mend. He can now use the phone to message but gets out of breath when speaking. His concentration is coming back and he can now watch tv and take it in.

He is anxious to get walking and he thinks he will be home this time next week - all being well. 😬

That means that I need to spring clean - I've been letting the housework slide because I just can't be arsed. 🙄

Good news about HDU OP, although the no visiting is very hard.

Good news re HDU! Don’t worry too much about the heart rate - it’s all part of the stress response to major surgery - great that they are weaning down his oxygen.

Glad to hear the knitting is proceeding nicely OP , I am thinking of you eating a Mrs Crimbles giant choc macaroon! Highly recommend!

@MyOtherCarIsAPorsche that sounds like a good development, although not visiting will be tough on you.

Another in awe of @olympicsrock's calm & coherent support

So good to hear he's been stepped down to HDU now

@olympicsrock

I had a Lion Bar for breakfast! I'm going back to the usual cornflakes tomorrow.

I have just sat down after tidying up after our four gorgeous grandchildren. They've been here all day. We've been trying to find a nice dress for my daughter (expecting twins) who has a wedding to go to next month - she's bigger now than when she gave birth at 34 wks with her first.

I'm sat looking through knitting patterns, eating Galaxy Counters. I can't decide what to knit next but it will be white.

I will be googling the macaroons - love them.

His blood pressure was 100/50 on Thursday, he said they were giving him drugs to increase his blood pressure? It was 130/80 yesterday. Today my blood pressure was 184/98 and it was in the red area on the monitor. I was wondering if it's this that is making me irritable? My husband has had high blood pressure all his life (he had regular medicals as as he used to work on a chemical plant for 25 yrs) the doctor used to say it was normal for him. I am wondering now if it was anything to do with having 4 aortic branches instead of 3? I wonder if he still has 4 branches?

He said that he could be home in a week - I want him to stay in as long as possible. He thinks I'm not coping on my own. (I am trying.) I mowed the lawn yesterday - it took me ages to get the mower going and then 3 hours to mow half of the lawn - I'm doing the other half tomorrow and weeding his vegetable patch, known as The Tilth. His beans and sweetcorn seedlings have died because I didn't know they were in his man cave (halfway down the garden). I've planted more - to replace them. I bet they could go strait in the ground by now.

I am going to get knitting and see how far I get this evening. I should've started last night, I didn't go to bed until 4.30am - I started to watch The Great British Sewing Bee from series one again (can't sew, don't have a machine). I bet I would've completed a whole cardigan last night - knitting until 4.30 am.

Again - so grateful for your support. 🥰

Today my blood pressure was 184/98

Is that a typo? I'm hoping you meant 148/98! If it was actually 184/98 then it is dangerously high.

@avoidthecreakystair

No, not typo one hundred and eighty four over ninety eight. I know it can get high during the day - it's lower when resting. The reason why I bought a blood pressure monitor was because the last time I was checked at the doctors it was high. I was asked to keep a record for a week and report the results back. But then my husband became ill and I stopped recording. I do get a little chest discomfort on exertion - but it goes off fairly quickly. I can't really get to the doctors easily - I have the grandchildren 4/5 days a week.

I will start fresh tomorrow.

Contact NHS online now for advice OP. You must look after yourself better.

Please get help now, this is serious.

I’m going to say to you what I hope your daughter would say to you if she knew what you’ve written: ring the doctors tomorrow and take the readings you’ve had seriously.

If you also end up being admitted because you’ve ignored your BP then how does that help your husband or your grandchildren?

I understand the urge to carry on, to prove you can do it even though there’s a lot going on, to be busy to avoid thinking. But you're ignoring your own health. You need to be sensible.

It's a bank holiday weekend. I'll fill the online form in on Tuesday.

I can ask my son to have the children for me if the doctor wants to see me.

I usually do three readings during the day. The middle reading is always sky high. I had just prepared lunch for nine people when I took the high reading. I once did a 24 hr blood pressure test - the readings during the day were high and the readings in the evening/night were lower - the doctor said they cancelled each other out and I was ok. But that was probably 10 yrs ago.

My evening reading is 146/86. I was told that as long as the majority of readings where the bottom number is less than 90, I am ok. Two out of three readings are less than 90 - so I am thinking that I am ok.

I broke my big toe last year (still hurts to buggery and it's horribly bent) - spent ages in A&E. My blood pressure was off the charts - they did an ECG - then no follow up. I assumed I was ok.

I wonder if I'm falling through the net?

Doctors are aware - I have a consultant appointment every year for my thyroid and again, blood pressure very high - I'm always told it's white coat syndrome, which I can totally accept. So you see - I always think I'm ok.

Dark chocolate and nuts all have magnesium, which is a good thing to have when stressed. Go and see the doctor about those blood pressure readings.

You can buy seedlings if you need well grown ones. If you have a local Facebook page asking on there to buy some and explaining yours died because your husband was admitted to hospital might well produce some free.

I hate to say this, but I think you know already that you need to get yourself sorted as well. Also that your GP sounds a bit shit to let this stuff slide for so long.

whoops! Posted too soon! Your BP is scary high and it’s not normal for people’s BP’s to swing into that zone regularly. Your symptoms do indicate that you need follow up.
It sounds like your DH is fighting his infection. He’ll probably be a bit wobbly for a while after that and the huge surgery. Not surprising… he’s been through a lot!
I’m so pleased you have your knitting and your chocolate, along with your loved ones around @MyOtherCarIsAPorsche I bet it helps make things feel a bit more normal.

@Fraaahnces

Yes - things aren't that far off normal, in fact there are loads of upsides to having a husband in hospital. I can watch whatever I want on tv at a much lower level volume. I can eat what I want, when I want. The downstairs bathroom is clean - no drips to wipe clean. There's no fat spattered all around the cooker and kitchen because of bacon cooking at too high a temperature. I can open all the windows. There's no whiskers in the bathroom sink, no toothpaste on the mirror. But it's a small price to pay for his company. I miss our banter and our silly games.

Yes - I know that this has been coming and I need to sort out my blood pressure. I've been on a drug before for migraine (propranolol) - it stopped my migraines immediately which was great and it lowered my heart rate and blood pressure. The downside was that it made me feel disorientated and 'spaced out' - I was teaching and I couldn't function properly, so I didn't stay on it long. Of course the migraines returned.

I know there's probably other drugs and I may find one which is suitable but I don't want to take anything which causes side effects worse than the symptom being treated.

I have a houseful for dinner tomorrow/today so will be surrounded again by family.

I was sort of hoping that the two lower readings of my blood pressure would cancel out the higher one. But I also know that my blood pressure can be a lot higher also, for instance when I am cleaning, sweeping, mowing, walking quickly. I occasionally get readings where the lower figure is well over 100 and I know that's bad.

I know that I am burying my head in the sand - it's because I have a hole in the heart (vsd) and I don't want to open that can of worms. The last time I had that checked was during pregnancy.

At the moment - it's 1 am and I'm watching the new Ozark release, reading the Yorkshire Post (Saturday edition) and knitting the right front of a cardigan. It keeps my mind ticking over so I don't dwell on more serious stuff.

Between now and going to bed I have to consume a fair old amount of gaviscon in order to stop acid coming back up because of a hiatus hernia. I didn't go to bed at all Friday night Saturday morning - the acid was far too bad so I dozed, propped up until morning. I thought I would've been tired by now - not been the same since my frozen shoulders started 🙄

I need a complete overhaul - I'm a walking disaster. I've realised I need to get my needs met in order for me to meet others' needs.

It's my late New Year's resolution.

I am so sorry this is happening. I can concur you don't want to be unwell.over bank holiday weekend. I had a miscarriage over one and only when almost over could I get proper pain relief. When I first got there I was told I might need injection to stop labour. I had to wait 6 hours for consult and by then it was too late. He gave me pethadine.

You might have found that you needed your propranolol dosage adjusted. There are absolutely many other meds for migraines (You have my sympathies… I am on a doozy. Most of them have some kind of side effect or another.) I know you are going to get onto this, but it’s vital that you know that having migraines increases your risk of stroke exponentially. Having a high bp is a high risk as well. With all the stress you’ve been under, you need to make your own health a priority so you can be there for everyone like you are.

Porsche, your blood pressure is too high, & you have pains in your chest.
You are gardening, mowing, planting, looking after your GC, cooking for the hoards. Eating chocolate for England.
I am not a doctor, but your cholesterol is probably too high too, and your "HH" symptoms could well be another sign of infarctus
I am absolutely in awe of how you are coping.
However, you will be able to do none of these things if you have an infarctus.
Your GP is terrible, it is not advised to just stop propranolol abruptly either.
You really need to tell the truth to your children about your BP, they will have to sort out alternative childcare, & you need to urgently get an appointment with a cardiologist. Please call the emergency health line & tell them the symptoms., at the very least you should be on medication for the BP immediately. If needed stents can be put in in a couple of hours in an emergency & you go home.
This will keep you alive & return to your lovely family.
I know you wont do it, you will wait till your husband is better,
I'm sorry, I am going to be very brutal here,
Who is going to look after your husband if, or more likely, when, you have a heart attack or a stroke?

@Mix56 I'm sure you have good intentions but terrifying the OP with statement such as the last one are hardly going to help her BP, and as you say, you're not a Doctor. I'm sure she knows her body and her medical history well enough to make her own informed decision.

@MyOtherCarIsAPorsche clearly you're an intelligent woman and I know how hard it is to put yourself before others when you have family commitments. You know what you need to do so get the form sorted on Tuesday and maybe try and take it a bit easier in the meantime...make sure the kids help you out today!

FWIW my mum suffers with high BP and is on medication to manage it. It still spikes when she's stressed and in 'white coat' situations to levels similar to yours. She's 83 and has yet to need hospitalisation as a result.

Which is not to say you shouldn't get checked out ASAP but I can understand why you don't seem to be as concerned as one might think you would!

Have a lovely day with your family today and I hope you get news of more positive progress for your DH.

Minty, it seems OP already knows she is neglecting her health.