Aortic dissection & aortic aneurysm information support group

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

My brother and his best friend diagnosed my AD not the hospital

I've just joined this forum and this is my story. It started on 30th dec 2010 when I arrived home with my 9 year old son very calm and collected and just sat down on the settee at about 8:00 in the evening, I suddenly got chest pains which accelerated to a high level quickly, just a few seconds. I thought it was some kind of spasm so just held on for a couple of minutes and eventually got up and then sat down on stairs, pain still high so went to my bedroom (approx 5 mins elapsed now) Something was clearly not right so shouted my daughter to get the phone. I dialled 999 and asked for ambulance and described what was going on, after a few questions she asked me to pass the phone to my daughter while the paramedics were on the way. Paramedics arrived swiftly and came into the bedroom where my shirt was removed and they started sticking pads all over me while asking me alsorts of questions. After approx 5 mins I was carried downstairs and into the ambulance where we sat for a little while so the paramedic could take blood from me (pain still high) This is to detect enzymes which are released after a heart attack I believe. My left arm was white which I pointed out to the paramedic (no reply from him) After taking blood I was given morphine and the pain subsided. mega relief!

Ambulance had blue lights flashing, the lot. Arrived in A&E and eventually ended up on medical assessment unit at Preston Royal infirmary. Rough first night after morphine wore off, was on a ward just in a room on my own, pain relief was given as often as they could administer but didn't seem to me to be alot going on in terms of diagnosing my condition. Transferred early am to the proper beds area where I remained for 2 days. doctors came and went and I had a scan but wasn't a CT scan. After not diagnosing my condition, doctor said I could go home and they would investigate my condition as an outpatient. Didn't seem right at the time and protested that I wasn't fit to go home. Sister on ward just wanted rid of me(or at least it felt that way) she said 'make your mind up if you want to go home or not, if not I'm going to move you.'

Decided to stay and was moved to a different ward. Much more pleasant staff, still lots of pain when medicine wore off and in agony one night as pain moved down to my abdomen and excruciating back pain. Doctors came and went, still no diagnosis. got sent for  and xray and they told me the back pain and abdominal pain was feces and was given an enema and suppositries. I had no idea at that time what an aortic dissection was or how serious it is.Doctors discharged me with a bag full of parcetamol, movicol and senokot for my pain and constipation on 3rd jan 2011 with my discharge note saying 'chest pain cause ?'

Spent one night at home which was unbeleivably painful and did not sleep at all, rang for ambulance first thing with massive abdominal and massive back pain, paramedics arrived and told me to be calm but a bit difficult when you are in so much pain. we had a liesurely drive to the hospital and ended up in A&E again, and then onto surgical assessment unit again in Preston royal. During my previous stay in hospital I was having dialogue with my brother who lives 200 miles away in cardiff whose best friend is a consultant physician at cardiff general who he'd been talking to about me. He'd already suggested to my brother AD and on hearing I was back in hospital he drove up to preston to find out what was going on. On arriving, the doctor said he didn't know what was wrong with me, so my brother said it could be AD and he needs an urgent CT scan. This was done immediately and an acute aortic dissection was demonstrated. I was rushed to manchester royal infirmary where I had the 8 hour op and surgeons at the hospital told my family I was lucky to still be alive. Recovery took 2 weeks in hospital before I could go home and it was only then when I started to realise the magnitude of it all. Dark days were frequent and in some cases more painful than the physical pain I had suffered. I am now approaching 4 months from my ascending aorta dissection op and feel like I have matured 10 years in those  3 months. I feel stress was a significant contributary factor and intend to study it and spread the word and educate people at work as this to me is a big silent killer.

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Comment by Gregory Smith on May 13, 2011 at 11:45

It seems it's a bit of a postcode lottery where accurate diagnosis is concerned. My GP says there are only 500 cases per year in the UK for Type A Aortic Dissection, which is what I had, and most don't survive. Death usually occurs before the patient gets to hospital so it's probably no wonder that many hospitals are unable to make the right diagnosis. It's amazing you survived so long. In my case, I was very lucky. Southampton has one of the best records in the country and I was diagnosed and operated on within 4 hours of arriving in A&E. I'm not sure that making the general public more aware of this condition will have any benefits as it is such a rare condition and it's causes are not particularly well understood. Yes, stress is a contributory factor, as are age, smoking, hypertension (high blood pressure), etc, but none are the direct cause, otherwise there would be many more cases.

 

Meditation (Buddhism) may have beneficial effects and aid your recovery, especially if it helps to lower your blood pressure. I, personally, have taken up Tai Chi together with Chi Kung exercise, as these are known to reduce blood pressure, as does exercise in general. Walking every day and going to the gym for rehabilitation classes also helps.

Comment by Alison Roberts-Pagent on April 27, 2011 at 21:02

Hi Cheryl,

There are no real effects at the moment. My GFR is 52 and that's Chronic Kidney Disease Type 3. There are lots of people walking around with low GFR, or only one efficient kidney, who don't even realise it.  I'm on Ace Inhibitors to protect my remaining kidney and I'm a little more careful, drinking more water etc etc and get blood tests every 6 months or so. It was a bit of a shock - another thing to deal with, but really there are no 'effects' as such.  Only time will tell. I occasionally feel a sort of cramping or squeezing in my lower back / ribs - not painful - and wonder if it's the 'dead' kidney - but have been told it's better not to remove it unless it's causing a problem, which it's not. Future surgery is a worry though.  My thyroid has kicked up a storm since the surgery though - probably due to all the tubes etc - (and my age???) now that IS a problem!!!! Hairy chin syndrome!!!!!!!!!! Aaargh! thank goodness for lasers!

Comment by Cheryl Kerber on April 27, 2011 at 20:16

Alison,

Do you have issues with only having one kidney?  I too had no problems prior.  But since my renal arteries and kidneys and artery to the intestines would be affected by a possible future surgery, I just was curious how you have dealt with that.

Cher

Comment by Alison Roberts-Pagent on April 27, 2011 at 20:04

Tim,

Think the medical care at MRI is excellent. I eventually moved to annual check ups and returned for a smaller op in 2008. Unfortunately Mr Odom is leaving Cardio sooon to concentrate on Thoracic surgery so I'll be moving into the care of Mr Ed McLaughlin, who has also been involved in my case from the beginning. I'm dissected from the graft/repair just below the arch around the arch into to the iliacs, left subclavian and brachial artery and up into my neck /carotid. I lost my left renal artery and kidney due to blood loss but they managed to re-suspend my aortic valve. Thanks to MRI the  26th June will be my 5th anniversary.

 There were no obvious contributing factors in my case, no problems before hand and was very fit. I didn't even think I was stressed. But I do think you're right about that.

Anyway, all the best!

Allie

 

Comment by Tim Meakin on April 26, 2011 at 17:37

Richard,

I think you hit the nail on the head, laughter, so if I end up in a ball rolling around laughing then so be it!!!!! Getting back to the normal me is the goal and I understand it will take time, thanks for your comments they mean alot.

And with reference to Allie's post, yes I did end up on ward 3 at MRI and it was Professor Keenan that carried out the surgery on me. Top man!

 

Regards for now

 

Tim

Comment by Richard Deal on April 26, 2011 at 13:17

hey tim,

yet another jawdropper... lucky your brother and his friend were more on the ball than the doctors at preston royal.

keep on enjoying your second chance and don't let things get you down. over the course of the next year or so you will reacquaint yourself with your body and what it is trying to tell you and eventually your confidence in it will return. my trick for getting through the psychological dissection was to simply approach it with a positive attitude, an open mind and a sense of humour. this only works up to a certain point, so if things get too much for me i just switch off and run on autopilot for a day or two. no idea where i go, or what i do in these times, but when i am "back" from my mental holiday things always look much better.

a lot of my "crustier" friends have suggested meditation and thought conditioning to me, but for some reason (probably the sense of humour) whenever i try i always end up laughing at myself for sitting on the floor after 10 minutes humming with my eyes closed... it is a spectacular relief though and i think we all need more of this self deprecatory laughter in our lives. it is definitely the best medicine!

take care,

r

Comment by Alison Roberts-Pagent on April 25, 2011 at 21:49

Hi Tim,

Sounds like you eventually got to Ward 3 at MRI. Mr Nick Odom did my emergency op there in June 2006. Luckily for me, our local hospital, Ysbyty Gwynedd in Bangor, only took 9 hrs diagnosing the dissection and I was then rushed the 110 miles to Manchester Royal Infirmary.  Can't believe what rubbish 'care' you received at Preston RI. I'm glad things are slowly getting into focus for you. It'll take a while as I'm sure everyone here will tell you. Take cae & all the best,

Allie     

Comment by Tim Meakin on April 25, 2011 at 18:00

Thankyou so much for for comments and support, before this happened to me I thought I was indestructable and would live forever, those thoughts are gone for the moment but I am feeling a bit more positive as the months go on. I have been supported quite well in my recovery and the hospital put me on a six week rehabilitation course which consisted of 2 X 1 hour sessions per week in a gym undergoing physical excersise. The nurses there wanted my pulse up to 116 max! I was a bit concerned initially as the surgeons told me to keep my blood pressure low, and thought what is happening to my blood pressure if my pulse is so high? The surgeons assured me that they are not directly related (Phew) so I completed the course and now want to do some cycling at weekends to boost my fitness. I am due a CT scan next february at manchester and can't wait as it is sure to give me a boost providing everything is ok (touch wood). About 2 months after my op I went to see my Gp about returning to work, he wasn't happy with me doing so at that time and issued a further sick note as really deep down I had to agree with him, this was my worst dark day. i do see things alot more differently now and want to turn it into something positive for the future and educate peolpe about this horrid condition. I'm going to have a go at meditation in a buddhist centre close to where I live to see if that will help. Very open minded about it so will give it a go. Thanks to you all.

 

Tim

Comment by Cheryl Kerber on April 25, 2011 at 16:59

Happy 8th anniversary Graeme!  We too have had some beautiful weather for a change - yesterday on Easter and now today (before it's supposed to maybe snow again tomorrow and Wednesday ugh - my girls started softball and I don't really want to have to wear a winter jacket to go watch them play) --- it has been an incredibly odd year of weather here in Minnesota (well, across the world for that matter) -- but I'll take it over the tornadoes they have had to the south of us, including the one that hit the St. Louis, Missourri airport --- amazing that no one got killed.

We don't have control over the weather and sad to say, over the whole AD thing either.  I could see if all of us didn't take care of ourselves, we could blame it on that, but for most, if not all on this site, that just isn't the case.

Tim, congratulations on surviving and on the healing path!  The journey is an odd one, as even though we can work through our situations, learn about them, take care of ourselves, it still can creep in mentally out of nowhere ---- and if it does for you, as it has for me over the last 6 years, this site has been a God send.  Just having someone understand without words has been a comfort.

My family and friends are very supportive and always here for me, but no matter how much they care, it's alot for them to grasp and try to understand -- not to mention, I don't like to make them worry - so when I'm having an off day, it has helped me to either vent here on the site, read others blogs, or just know it is here.

If you are willing --- how has your recoop been going and are they following you now? 

The first vascular surgeon I saw, blew me off because he didn't have my actual scan in front of him, even though my MD had stressed the urgency of my condition as they found mine on a chest xray for a cough I had.

6 weeks later, I ended up having surgery for a leak in my descending thoracic aorta - but the surgery was too extensive then, so I still have my dissected abdominal aortic aneurysm.  That's when they put me on the "preventative heart meds" as I never had a blood pressure issue, it doesn't run in my family, and the doctors have no clue as to why.

I have 4 kids myself aged 20 on down to 11 (you mentioned your daughter) which adds another whole gammet of concerns once you have an AD.  Before - I in a sense thought I was infallible --- but now, I'm very aware of how things can change in a second.

As Kimberlee stated though -- it also gives us a whole new outlook and appreciation of life --- with a few "dark times/moments" that slip in now and then.

So keep us in mind and stay in touch if you are willing.

Again, Congrats on surviving!!

Cher

Comment by Kimberlee Jones on April 25, 2011 at 2:45
Tim, your story is like so many, misdiagnosis happens way to often with AD, it is how we lost the actor John Ritter. Tell your brother WTG for suggesting AD and pushing for a CT scan, you have an amazing brother. So welcome to the survivors club we are happy to have you. You've made it through the physical part and it sounds like your on your way to making it through the mental. Which we all have gone through(and some still going through) In some ways the mental part is the hardest part. Finding this site is in my opinion one of the best things that could happen to help cope with the mental issues.(A big thank you to Graeme) Remember that all of here completely understand everything you are going through and we are here for you. So throw questions our way or just vent if you need too. You are part of a special group of people, a group of people who see life in brighter colors and have more appreciation for everything in their lives than the average person does. Remember each day is a gift, so don't let the AD overwhelm you, enjoy each moment of everyday and know as Graeme said "It's great to be alive"

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