Aortic Dissection

[Twinnyducks]

6 weeks ago I was unexpectedly diagnosed with an aortic dissection and had key hole surgery to put in a stent. I have had no aftercare whatsoever as I was discharged from ICU and not the Cardio ward. As such I have fallen between the gaps. I have no idea about what I can and can't do. Im no 6 weeks post op and assume that now I can fly, drive, return to work etc. Anyone have any top tips, or do's and donts? Im doing swimming and yoga and a little walking. However this comes with back pain Any wise words gratefully received. Thanks

[Prada47]

Hello

All I can offer is call your GP and see if they have a discharge letter or call your Consultants Secretary and ask for advice !!

Regards

[Twinnyducks in reply to Prada47]

Yes done all of those things?! coming to the internet to see what else might help. The person performing my op was from critical care and doesn't have a follow up clinic

[JulianM]

Hi Twinnyducks,

It's not a club anyone wants to join, but there is a growing community of aortic dissection survivors here in the UK (assuming you've joined the BHF forum because you are ...) and no less than two charities providing information and support.

Aortic Dissection Awareness UK and Ireland is a patient-led group which runs an aortic buddy group and has also published a survivors' guide which can be downloaded from the website here aorticdissectionawareness.o... that hopefully will answer many of your questions. You can also look for them - perhaps I should say 'us', because I'm an active member and supporter, even though I have not had a dissection - on Facebook and make contact through the FB page.

There's another active charity, called the Aortic Dissection Charitable Trust, which has a website at aorticdissectioncharitablet... which has a range of information resources and hopefully can also provide support.

If you are outside the UK and want to share which country you're in, there are other organisations, especially in the USA, which I could point you to.

Hope this helps - and all the very best in managing your condition and continuing with your recovery after the surgery.

All the best,

Julian

[Twinnyducks in reply to JulianM]

Thank you Julian. Ive sent a request to the FB group - Im based in Buckinghamshire. Will also look at the Charitable Trust. Thank you so much for the additional information. Very helpful indeed - Twinny

[MummaSoap]

Hi Twinnyducks

I don’t have any experience or advice relating to your particular situation but more generally I would say listen to your body, be kind to yourself and go at your own pace 🙂

Really sorry that you’ve fallen between the gaps - is it worth contacting your cardiac investigations team at your local hospital or cardiologist/secretary if you have one?

Sending you best wishes and hope that you can get the right support to help you through this journey 💛

Best wishes

Soap 🧼

[Twinnyducks in reply to MummaSoap]

Oh yes, I have already tried GP, hospital, going privately, but nothing apart from scan tomorrow.

[Cliff_G in reply to Twinnyducks]

Be aware, the descending aorta / type B ADs are dealt with usually by a Vascular team. Cardiothoracic generally deal only with the ascending and upper reaches of the descending.

[Robfromwales]

wasn’t aware you could have key hole surgery and a stent for aortic dissection ? Can you tell us a little more of what happened and what part of the aorta.

[JulianM in reply to Robfromwales]

Descending aorta, type B dissection ... the stent needs a 'landing zone' where the aorta is undamaged, so yes, this may be an option, but as you suggest, depends very much on where the injury happened - and it's not risk free. It's an active area of research.

[Twinnyducks in reply to Robfromwales]

Good morning, Yes as Julian says a type B descending aorta. They go in via the groin and place stent as required. An op not without its complications, but was very successful on me I believe. To cut a long story short I was rushed to hospital with some chest pains. My blood pressure was 190/90 and a CT scan revealed the tear in the Aortic lining. I stayed in hospital for quite a while, but unfortunately with no rehab plan etc. The chap doing my op was from critical care and has no follow up clinic, so the aftercare has been lacking.

[JulianM in reply to Twinnyducks]

The reason there is a growing number of aortic dissection survivors, like yourself, is precisely because a lot of work has been done by survivors and by paramedics and emergency medicine specialists to get hospital staff to 'Think Aorta' and order the right scan in circumstances like yours. Yes, you'll need ongoing monitoring and treatment from specialists, but to some extent that can wait. It's great to hear of some things going right.

[Twinnyducks in reply to JulianM]

Fortunately for me, it was my GP that saved my life. The original hospital popped me on anti bionics to start with. It was only when she insisted on a CT scan that it all went a bit 'Action stations' ! There is a student in Oxford out there writing a thesis on me! Thanks for the responses

[JulianM in reply to Twinnyducks]

I cheered too soon! That's not so good (in relation to the hospital) and ... very well done to your GP. Hopefully, it becomes an education opportunity for the hospital team. Getting the message across to the right people, without scaring the general population witless, is an ongoing challenge, and I hope the student's thesis helps in this.

[Cliff_G in reply to Twinnyducks]

Unfortunately a far too common occurrence. Bravo to your GP. They should get a medal.

[Robfromwales]

thanks so much. Mine was on ascending aorta and sternectomy and I wasn’t aware of stent in descending.

[Cliff_G]

Hi Twinnyducks,

As others have said, welcome to the club no-one wants to be a member of.

In addition to the information Julian gave, we (Aortic Dissection Awareness) have produced our booklet, Aortic Dissection - the Patient Guide. It provides all the information each of us wished we had had at the time, including what you should expect in terms of your follow-up. Aortic disease has to be treated as a lifelong condition with lifelong follow-up. Sometimes it's necessary (as I found out myself) to find where is the best place for follow-up and to request the necessary referral from your GP.

You can download a pdf electronic copy at aorticdissectionawareness.o...

In addition, we have printed copies. Now, you should already have been given one, as our aim is to provide one free to every AD patient, via their hospital. As it looks like this hasn't happened for you, there are two things to do: if you can make yourself known on the AD Buddies Facebook page and that you don't have a copy, one of the admins there looks after getting out copies to folk such as yourself. Also, let them know which hospital you were at so we can check that they are aware of it, or if they need restocking.

Best wishes

[Twinnyducks in reply to Cliff_G]

Thank you, haven't been accepted into the group yet. No didn't get a booklet and my hospital was the John Radcliffe Oxford. Thanks so much for all of the detail

[Cliff_G in reply to Twinnyducks]

Thanks Twinny. It can take a day or two to get onto the FB group. Not a question of not qualifying (you definitely do) but just that the Admins are kept very busy.I'll check up on the John Radcliffe and see where they are on it, thanks. You said you were operated on by someone from critical care. My guess is that they called for a Vascular Surgeon, but why they have no follow-up clinic is odd, makes me wonder if they called in a specialist from elsewhere . Any AD repair at all is highly specialist work, and needs an established vascular (or cardiothoracic for type A) department.

As I say, for a type B, your follow-up would normally be through a Vascular Consultant.

[Twinnyducks in reply to Cliff_G]

Hi Cliff, a quick question. Do you know what the driving rules are 6 weeks post op. I cant get a straight answer from GP or surgeon. Thanks!

[Cliff_G in reply to Twinnyducks]

Hi,The DVLC rules are at gov.uk/health-conditions-an... , which take a bit of careful reading and are not very helpful. It covers only aneurysms and chronic dissections (which I assume is not you).

There's also a short section on p41 of the guide. Note that you may need to advise your insurers. Overall it can be tricky to negotiate and it's a shame you're not getting guidance from your doctors. However, with a stent repair and the level you of activity you are able to do, I would have thought it shouldn't be long before you can get back to driving. I think if you feel strong enough, and not dizzy from low BP due to meds, you can probably go with that.

[Cliff_G in reply to Cliff_G]

Having said that, as I had been fully repaired and once I felt ok to drive, I didn't tell the DVLA or insurers! Took a few momths for me to be ready, though.

[Tomorrow_Today in reply to Cliff_G]

I had a Valve Sparing Aortic root repair back in April after an Aortic Dissection. A shock at the time and needed to come to terms with what happened. Support is essential . So appreciative of the info I received from Liverpool/Broad Green hospital and other medical professionals. Received a copy of your book on when I was discharged Have been able to talk to survivors and come to realise that an Aortic Dissection can mean so many things. Good luck with your recovery and make sure you are supported.

[Cliff_G]

And p.s. it looks from your description of what you can do that you've had a very satisfactory outcome, as these things go. But you'll find lots of support and different stories on our FB page. You're definitely not alone.