Re-posted after few people said couldn't read whole message, It is a bit long but within the forum's limit I think. Milkfairy suggested it might be because I'd used the word beginning with C that describes what we were all exposed to during 2020! Thanks for that those that messaged me - hope this works now! ....
Sorry but I need to work out if I am being unreasonable and have a question for BHF and for everybody on this forum.
We had known for years that my daughter who had mild marfans would need aortic root replacement for years. She was under the care of Addenbrookes and Papworth for years and they looked after her brilliantly. Mid 2019 they said let's plan for surgery summer 2020. We'd looked into the alternative for root replacement - PEARS - but Papworth didn't do that so Nov 2019 we switched to another hospital. We realised there would be a delay due to things happening in 2020 and weren't over worried until she wasn't feeling well on the afternoon of Oct 21st 2020. She and I realised she'd suffered an aortic dissection. We got her into Bristol Royal Infirmary (BRI) and try as they did they couldn't save her. We lost her in the early hours of the following morning, aged 29.
Before that she had had an Echo at BRI in early August requested by her Lung Specialist when he said her lungs weren't the cause of her tiredness and discomfort. This was sent to the other hospital. They now say the Surgeon reviewed this on Sept 3rd and uprated her to P2, Urgent, Needing surgery within 4-6 weeks which is why they scheduled her for surgery on October 28th. We were pleased to get the surgery date even though the Nurse that informed Sarah told her that it could easily slip, they weren't back to doing that many operations. We knew the surgery was needed, that the ongoing delay was not good but we were not over worried about her condition. We did email the Surgeon asking whether the PEARS sleeve might not still fit. They did another Echo in early October to 'check dimensions' and shortly after advised Sarah that she had a firm date for surgery on Oct 27th. They now tell us that that Echo would have confirmed her as P2, Urgent.
BUT at no time did they tell us she was in more danger than we thought, that she had been re-rated as P2, Urgent nor anything to help her protect herself. We say that they should have warned us and that we and she maybe could have done more to look after her, protect her e.g less strenuous exercise, monitored vitals, seen GP, had a heart specialist in Bristol check her over, watch her for fluids, take water tablets etc. Actually never heard of idea of controlling fluids, taking water tablets until GP prescribed them for my wife as first step in her response to wife's deterioration and it was abdominal fluids that complicated her emergency surgery!
The Other Hospital Management have been great in investigating Sarah's death, discussing things with us and I am sure in improving things internally but are saying that the Surgeon / they are not at fault for not warning us and that it would have made no difference if they had. We disagree.
My question - Should the Hospital have warned us Sarah had gone to P2, Urgent and in need of the operation within 4-6 weeks? Should a hospital warn anybody that they realise has deteriorated that they have so they can look after themselves better and seek the help they may need? More responses the better, and while interested in anybody's own experiences will treat as confidential - just going back to the Hospital with a summary and the statistics.
Thanks, and you all take care yourselves ... 🙂💜 .... purple as that was Sarah's favourite colour!
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Hi, I think the answer to you question is a very clear 'yes'. A patient must be allowed to know the full situation and to be advised on what they can do for themselves to help. A cancer diagnosis leads to a well-described support pathway, for example. With an urgent aortic op, the patient needs to immediately have their BP fully controlled (as low as tolerable (110/70 ideally, or even less)) with an absolute max of 120/80, and not be put on the usual NHS slow path that only kicks in above 140/90), plus beta blockers and ACEI/ARBs are known to slow down the rate of aortic growth (though more a long-term thing, but she should have already have been on these). The patient should have clear advice on physical activiy - not lifting heavy things but keep up gentle exercise to ensure a level of everyday fitness).
With me, I knew of my enlarged aorta (I'm not Marfan) for 20 years and even when it reached 45 mm, no-one ever explained the risk or used the term "dissection". The attempts at my BP control took far too long (several years, only to fail to get it under control), no-one told me the magic 5.5 cm intervention diameter was anything but a reliable figure based on sound science (it isn't - 10 years before my dissection a paper was published saying 5.5 is not a good criterion!). I was never given any exercise information in spite of the doctors knowing that I loved hill walking and mountain biking. I was not put on any meds to try to slow the growth down - not as clear evidence as in Marfan but still worth doing.
The final thing I always advise people with a dodgy aorta is to wear a med alert bracelet listing their condition in a way that ambulance/A&E staff can't miss (you'll probably be in too much pain to think straight, and AD can be a difficult diagnosis, requiring immediate CT). My dissection was initially treated as a heart attack and took nearly 2 days for a correct diagnosis. The resultant repair was nothing short of miraculous, but the 6 week stay in ICU has left me permanently weak with Critical Illness Neuropathy. If only they'd known about my aorta straight away.
I know some doctors struggle with how much to tell a patient as they "don't want to worry the patient unduly", but that is easily fixed by asking "how much do you need to know?"
Yes, she should have been told. There is far too much information not passed to the patient because "we don't want to worry them too much."This has been going on for far too long. One of my personal experiences was back in 1989, I had a breast lump which the surgeon said was benign and not growing. I knew it was, but accepted his word about it being benign. When I saw him again after a gap of 3 months it was obvious it was growing. Even on the morning of my op they were telling me it wasn't cancer. Never having had an op before I just accepted that I was under anaesthetic for about 6 hours.
Fast forward 18 months, another lumpectomy, total time out if the ward 20 mìnutes.
Checked with my GP, turns out they were not sure it wasn't cancer and did a frozen section. That explained why they kept reassuring me that they hadn't had to do a mastectomy which had NEVER been mentioned
Firstly, I just wanted to say that I’m so sorry for your loss, I can’t imagine what you’ve been through as a family.
Secondly, in answer to your question I would say that there should always be a discussion between specialist and patient at the start of care about their preferences regarding how much they want to know about their condition and maybe periodically clarified in case a patient changes their mind. Personally, I would want to know so that I was fully informed when making decisions about my lifestyle and how best to keep myself well.
Hi Mummasoap, Thanks for that. Really hope things are good with you! On reading your post, was thinking for us we had that initial discussion in Nov 2019 when the surgery was 'elective' although we didn't get a clinical letter which should have been a warning sign that things weren't right. But then early 2020, Sarah was starting to feel bad, we thought it might be lungs but her lung specialist said not lungs, lets get an echo. It was that echo in early August 2020 that the Investigation said should have ranked her as P2, Urgent, Indicating Surgery within 4-6 weeks that they didn't either recognise then and/or didn't tell us about in spite of us repeatedly asking through September and October. She had her dissection Oct 21st. Then I looked at your post and realised you've been through a LOT yourself including not being well 2 months ago. If I'd have seen that then I would have joined everybody else in urging you to get yourself into A&E. That thread left me wondering how you are now but at least with this post we know you are still here, yes? Perhaps you should, could share how things went after that, how you are now? And please please for the future do not hold back in asking your medical advisors what to do, do not hold back from getting the help you need or might need - do not leave that too late. Do you have a heart failure team as we do at Southmead, Bristol?. They have been great in looking after my wife who is now under them. Her EF dropped to <15% from 41% after 2 years of neglecting her health but she realised she wanted, needed to be around for our other daughter and our son and they've been helping her to do that brilliantly. Again, thanks for your time and consideration in replying, You take care, Paul.
I’m so sorry that this was your experience and the most unfortunate part is that hindsight can create many opportunities to contemplate different potential outcomes.
Personally I went to my GP on 12 separate occasions regarding what I know now were cardiac symptoms and was consistently told that it was normal for me to be tired because I had a newborn and then because I had a new born and a toddler and then because I had 2 small children and the response to my high heart rate was “oh you’re probably a bit dehydrated because you’re breastfeeding”. If my hernia hadn’t become strangulated, I often wonder whether my heart condition would’ve been picked up at all (I try not to let that one absorb too much of my energy though).
I think certainly in your daughter’s situation they should’ve spoke to you and her about what the echo in August 2020 had found, especially if it should’ve changed the outcome for how she should be cared for. How can you confidently put your trust in specialists if you don’t have the confidence that they have your best interests at heart.
Perhaps they didn’t give you the information because they knew that they wouldn’t be able to get her in for surgery within that timeframe? But then even if that was the case they still should’ve been open about the prognosis, and the position that they were in.
Thank you for your well wishes, that’s very kind. I feel fortunate compared to many, especially when I’ve read some of the posts on here. It’s nice to know that I’m not alone though, especially during times of worry.
So to update you, the symptoms I was getting back in September have now eased although not disappeared altogether. My GP tried to tell me that it was probably anxiety 🙄 but my cardiologist suspects that it was something to do with my SVT and possibly caused a period of ectopic heartbeats due to the amount of stress I had put my body under by running after my son! This is another reason that he felt it would be wise to go ahead with my referral for a stress test.
I was assigned a heart failure nurse on leaving CCU but to be blunt she was useless - never called when she said she would, repeatedly cancelled appointments (which I appreciate were out of her control a lot), and was often vague about advice on how I could help myself relating to fitness and getting myself back to work so in the end I said thanks but no thanks in the politest way.
My symptoms have continued through starting my new medication which is a bit disappointing but I know it’s still early days.
Your wife sounds very brave and you too! It’s hard when you’re the patient but I realise that it’s hard for those around us too and maybe sometimes harder because you’re powerless to really do anything specifically to making us better. It’s easier to accept an outcome for yourself I think. I hope your wife is doing well and that her EF is improving again 🤞🏼🤞🏼
First time to post on here. I'm due to have the pears surgery,
It was a bit of a shock to hear I needed open heart surgery, I was being monitored for my aorta, and in April been told its 5.3 cm and need to have surgery. I'm use to having operations had 13 so far and didn't expect this one. I ask if I could have it done in March as its easier for us, have quite a lot going in the background from my son and my parents, my mum is in late stage of dementia and my dad being checked for cancer. I was told, it maybe too late for me in March 2023. It came as a shock.
I've been told by my consultant to have my blood pressure 110/70. I havent been given any tablets to slow down the growth of my aorta, this is news to me from reading the posts. I was told first of all operation would be in 2/3 months time in September, then October and still waiting, for the part to come through. I am panicking with this, my enlarged aorta is due to digeorge syndrome which I only found out at 40, by helping a hospital with research and then they found this for me.
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