Aortic dissection & aortic aneurysm information support group

Aortic dissection, aortic aneurysm - The aorta - Life after an aortic dissection

Can any of the group living in the UK tell me if they received any advise leaflets from the hospital on Thoracic Aortic Dissection. Or do you know of any useful published information in UK. 

When I was discharged from Papworth Hospital in Oct 13  following emergency surgery with a graft repair on the Aortic Arch I came home knowing absolutely nothing about any consequence of what had happened to me other than general Cardiovascular info following surgery.

Thanks would be helpful to get some idea of peoples experience of available information. My feeling is its going to be poor! but hopefully others will enlighten me.

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I don't live in UK but I can tell you the only instructions I got were the ones my cardiovascular surgeon and cardiologist gave. So no leaflets or written materials of any kind.  I'm assuming each hospital and/or country is different. Feel free to ask any questions though, I dissected in 2005.

*hugs*

Kimberlee(Admin)

Hi Brenda- Like you I was given very little information or advice after my aortic arch repair (June 2014). I was given some BHF booklets that are given to post-op coronary artery bypass patents but to me this is a totally different operation. When I came home I Googled aortic dissection/repair/ post-op etc. There is a lot of info online but you have be careful not to get too bogged down by it. There is also a good link on this site.

I have today seen the cardiologist in Exeter who was helpful. The message I got was to not exercise too vigorously and not to lift heavy weights e.g. moving heavy furniture because this can put a strain on the aorta by raising the blood pressure. It is important to keep the BP as low as you can with the medication and monitor it regularly. He is also going to refer me to the Genetics dept. to check if I have a connective tissue problem such as Marfan's syndrome. I am tall and slim but have none of the other characteristics such us "double-jointedness". 

You are right, there seems to be no specific information being given out by hospitals maybe because it is a fairly uncommon condition but that is no excuse!! Hope this helps.

Angela

Angela

Hi Kimberlee and Angela thanks for reply. Angela you sound that you are doing well from June. I am opposite height wise to you short and round!! I apparently have 'scoliosis'.  I never really took too much notice of what had always been referred to as a 'curved spine' and tried to manage my ongoing back pain. Seems that this may also be connected.

Reason I am trying to find peoples experience on info and follow up clinic experience in UK is because I am hoping the BHF will address this in their Publications.

I was shocked a couple of weeks ago by the nurse taking my pre-procedure assessment when attending my local hospital for a gastroscopy. Asking about health issues and came to cardiac questions. I said I have an Aortic Dissection - his reply 'well I don't know what that is but I will put it down and proceeded to write on the left margin side of the assessment sheet.  I then informed him about my tear in Oct13 - his question on reply 'was there a lot of blood?' I lost interest in trying to educate him at that point.  

It sounds that you are more supported at Exeter and that they are moving forward with a Genetics test. Good.

Thanks again. Brenda. Anyone else on UK experience?

Thanks again Kimberlee x

Wow Brenda! The nurse didn't know what an aortic dissection was....that is crazy.  I was once told that I couldn't have had an aortic dissection because I would be dead(Emergency room nurse) I think in America it is a little more well know thanks to John Ritter and his wife work since his death.  The thing with follow up care after dissection is that it is as different as our dissections themselves. By the way scoliosis is common in AD victims(not sure if it is associated with a genetic disorder or not) I had scoliosis surgery when I was 14y/o(no know genetic disorder, my AD was due to pregnancy) Did they tell you what caused your AD? The lack of information is in my opinion is in large part due to the low survival rate. I think as we see the percentage of survivors increasing the more information these patients will receive. Basics for all survivors would be the weight restrictions(lifting/pushing restrictions) the rest will depend on type of dissection, surgery or no surgery, cause. Like Angela said using google/internet can be so overwhelming and scary. It wasn't until I found this group, that mental recovery could begin. Thanks to Graeme and other people creating AD support sites, the many Facebook support groups and survivors getting the words out, I see a very different future for survivors!

*hugs*

Kimberlee(Admin)

Kimberlee do you know where to find a good guide on lifting/pushing restrictions following AD?

I do worry when my dog jerks me hard on the lead - she is quite strong. My eldest son blamed her constant pulling for my AD - who knows ? On my discharge post - op I asked  the registrar what had happened and he just replied 'you unlucky' and said 'its genetic'. I think he was French or Spanish and English 'not so good'.

Post emergency surgery is different from planned surgery because you don't really 'belong' to anyone. I did have the chance to ask the surgical consultant whatever I needed to know at my 6 week follow up but it was all a bit overwhelming. I was also at that time pre-occupied about my scar tissue that had flared up but did not get any supportive help until 4 months ago. I still have a small region that is hypertrophic/keloid but manageable now.

I think people with cardiac issues /  ie valve replacements get to see a cardiologist for future monitoring. With a straight AD from a tear and graft surgery its more a case of monitoring by scan and I don't get called back unless an issue arises. So case of 'no news' is 'good news'.

Information post-op that I have found has been on my own searches whenever I felt the need to know more. All still a bit of a mix really - that is make of  it as you will. I do go onto the fb site now but that too gets a bit scary. As I feel right now the thought of further surgery really is not something I can think about - to scary but something that I know I may have to face and I think this is really the issue because this is the BIG unknown factor.

Thanks again Kimberlee and to Graeme of course xx Brenda

General guideline is no heavy lifting(I have a 10lb limit, others have more or less) cardiac exercise is good..no weight training. No shoveling snow, pushing lawn mower, etc. Sometimes the rules get broken. My daughter was 5 1/2lbs when she was born and at the time I had a 5lb weight limit. Of course I picked her up!! lol  Also I push a heavy grocery cart around store when necessary, but for the most part I follow the rules.   The problem is we are all different, some have had surgery, some have not and other factors such as location or age can effect restrictions.  Ask your cardiologist to find out what your guidelines are. I highly highly highly doubt your dog caused your AD!!!! Genetics are the most likely culprit but you don't know unless they have done testing, also uncontrolled high BP, drug use, pregnancy(2% of pregnancies) traumatic accident(such as car accident) etc. IF you a recently post op, I wouldn't take dog for a walk, not while bones and tissue are healing.  Also you if not you should be seeing a cardiologist!!!  I have repeat scans once a year, also you need to find out if it is genetic, especially if you have children. Not trying to scare you but these genetic disorder can be passed down. But knowing the cause has a big impact on your restrictions.

*hugs*

Kimberlee

Hope I helped more than I scared you.

Thanks Kimberlee. I will speak to my GP again. I am registered for yearly scan but don't get to speak to a specialist unless a problem shows up I guess. I have told my sons that they could be at risk but both are not interested in following up. Can't do anymore they saw me go through this and are grown men. My younger son was home at the time I tore and had he not been around to call emergency services this could be a different story.

Thanks again xx Brenda

Brenda,

Sadly (!!) Aortic Dissection is one of the most under-reported, underrated and less understood medical emergencies in the world.. and the UK especially. Shocked - absolutely shocked that a nurse did not know what it was however I know that up until a few years ago medical school in the UK only gave this cursory coverage in the entire doctors years of training.. it is often called the 'great pretender' as it mimics a whole range of conditions and is one of the hardest conditions to diagnose unless the attending doctor knows exactly what to look for. And yes your right... their is very little follow up literature on AD in the UK once you have left the hospital. This site was founded hopefully to help overcome this. Have a good rattle around the site..there is a lot of info and links on it added over the years that can help you. As for what causes it.. take your pick/// high blood pressure is however one of the main culprits...

cheers

Graeme

Hi Graeme I saw you were on line today and thankyou again for the support you give on this site. I was directed to this site by one of the support nurses with the publications help line for Heart Matters who Publish for the British Heart Foundation. As much as I am so grateful for this site it just underlines how little is out there for us in the UK and relevant to our Health Service.

I do have to note that the paramedic who attended when I tore on 5th Oct 13 was absolutely spot on with his diagnosis and early intervention treatment and getting me straight in for a scan at the nearest hospital about 45 minutes away. He also personally re -scheduled his call out time to take me on to the specialist hospital which was another 2 and 1/2 hours - 3 hours on a blue light. He stayed with me right into the pre-op surgery and was a huge comfort throughout.

Definitely a huge differential between medics knowledge and very worrying not just from the first line treatment response but as in my case now from across the board treatment services. The cardiac nurse to who I was first referred back to at my local hospital on discharge from in-patient services at Papworth said she had never had a surviving thoracic aortic patient referred to her before and then two of us came along in the same month. The other is now my local buddy living 8 miles away. This nurse referred us on to the 4 week cardiac rehab programme. So some enlightened news.

There is currently a health drive here in the UK to get all men of age 65 in for aortic scan. So some progress and this must impact on the awareness of all health and treatment providers of this huge issue but sadly  misses out on the population who survive by being the 'lucky' ones like me.

Brenda

Hi Brenda..

passing thru site and saw your post. Yes the over 65 scan in the UK however is only for AAA (Abdominal Aortic Dissection) and does not cover or look for a type A/B Aortic Dissection.. :-( Good however we are being used as a support group recommendation :-) Yes the paras seem to be more on the ball with AD diagnosis than the doctors..however I believe the A and E departments of hospitals now have beefed up their training and screening for AD... hopefully! Sadly the system is not set up for survivors of AD and we remain a rarity here....Same pretty much happened to me after my AD back in 2003 re Cardiac Rehab... but..slooowly it is getting better.. I think!  Stay well and  all the best for Xmas and New Year!  

cheers

Graeme

Many Thanks and the very best to you and all on these pages for a good Christmas and New Year x

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