My story

Hi all,

My name is Elaine and this is my story. On 6 May 2011 I was at work (I am a nurse) when I collapsed with chest pain. My memory of the events is vague but I do remember having a CT scan which confirmed Aortic Dissection Class A. I was transferred to St Georges Hospital Tooting and underwent emargency surgery. My family were told that I probably wouldn't survive and 2 of my sons flew in from California and Canada.

Clearly I did survive. I was in hospital for only 6 days then discharged,unfortunately i was readmitted with dehydration and Fast Atrrial Fibrilation and remained in hospital for another 6 days then discharged.

I am now at home on the road to recovery I hope. I am so frustrated with what I feel is slow progress but reading your stories has helped me put it all in perspective. I am only 4 weeks down the line and able to walk for about 20 mins a day without breathlessness. I only need to take paracetamol as painkillers and manage to sleep fairly well apart from a period of 1 hour between 3 and 4 in the morning? I have realised that a small pillow under my chest wall enables me to get quite comfortable.

I realise I have a very long way to go but it is great to hear from others who have been through the same thing

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Comment by Cheryl Kerber on August 18, 2011 at 4:30: Elaine you give me hope as I read this now --- I'm 5 weeks post surgery. I too was released 8 days after surgery, was home for 4 and then ended up back in the hospital for 11 days due to 2 blood clots in my leg, one on my chest, and elevated white count.

This is my second surgery though within the last 7 years due to my aorta, but this one, I knew about going into it so I had some time to prepare (if that is even possible - it still knocks you off your feet and some times you just pray to help you through a couple hours).

I found it interesting that you were up btw 3 and 4 in the morning --- for me it's 2 - 3. I walk around my house while my family sleeps and my dogs just watch me until I go back to my chair (still can't do the bed yet --- can't find a comfortable position). I have one of those anti-gravity type lawn chairs that has a cushioned seat and so forth that I stack pillows on. It's easier to get up and out of it and I can lay back and position my legs to what ever height feels good at the time.

I miss having my energy, but am glad I am alive. I am thrilled I can walk and that my innerds are working like my kidneys. I do at times get weakness in my legs that make me need to sit quickly as I learned today I must have gotten up to fast and my legs gave out on me and I ended up on my knees (but at least I didn't fall on them, it was like a gradual slide on to them --- kind of weird and hard to explain).

I'm on Norco (a form of Vicodin) for my pain as I can't take anti inflammatories due to being on blood thinners for the clots.

I remember though from my first surgery that it does take a long time to get back to a good normal --- and I know it is possible as I did reach that over the last 6 years from my first surgery. And then I read Tim's blog today and he's 5 months out and it was a wake up to me again, that it takes alot of time. But we all have the tenacity to push through this whole ordeal.

The mental part of course is another whole challenge -- but I read you have another grandchild and it's things like that that keep us going --- so congratulations.

Take care,

Cher

Comment by Kev A on June 10, 2011 at 21:28: Had to google 'atrial fibrillation' ... wiki gave me a brief outline

The night my AD struck I was admitted with an abnormal heart rate of sorts - normal>fast>slow>normal sort of thing (a few weeks prior I had an issue along the same theme one night)

Obv the reason(s) your heart is 'out of sync' is anyone's guess on here - but ask yourself being a nurse. Is it particularly normal condition to have? Esp, given what you've been through. A quick call to your hospital/GP should help you out.

The view I have now is anything that doesn't appear 'normal' maybe isn't 'normal'. It could be nothing, it could be something. You don't lose anything by been over cautious in these matters.

Take care (keep us updated)

Rgds/Kev

Comment by Kimberlee Jones on June 10, 2011 at 17:54: I had issues with an extremely rapid heart rate about 2 weeks after I was released from hospital. Which resulted in another week or so in hospital. Since then I have what they tell me is an extra beat, it's not constant but when in occurs if feels like my heart stops beating for a second and the returns to normal. Sometimes this happen for a few min, sometimes it last maybe 10min then my heart beats return to normal for awhile. They told me it was no biggie, so I don't worry. As for the AF, I would at least call your doc and see what he/she thinks you should do. Take the better safe than sorry attitude whenever you question what you should do.

*hugs*

Kimberlee

Comment by Elaine Howlin on June 10, 2011 at 16:21: Did any of you have atrial fibrillation? I seem to have flipped back into AF today which is a bit annoying as I have been in sinus rhythmm since discharge from hospital. The trouble is I dont know whether to report to the GP or the hospital or just ignore it and hope it will revert again. Any offers

Comment by Graeme on June 9, 2011 at 22:35: Hi Elaine...

Firstly you are doing well for the short time you have been post op...... secondly I had my Type A on St Georges Day and was operated on at St Georges as well.. :-) Dr Sarsam and his team spent over 10 hours on my train wreck! Now, today over 8 years on it still is like yesterday - but- I'm well and truly healed both physically and mentally and apart from the occasional tick. click. thump. thud! (what was that?!) moment I have really forgotten about all the bad times - which their were many - but a wonderful wife, great friends, family, self belief and a crazy sense of Aussie humour has done wonders...

My story is here if you want to take a short (?) read...

You take care, get better and take it easy!

cheers

Graeme

Comment by Harry on June 9, 2011 at 20:49: Keep going your really doing well. Its takes months but each week you will be able to walk further & you will regain your stamina. It took me a good 8-12 months & the only thing holding me back is the medication - which slows you down again.

Watch the BP & keep stress & strain to a minimum.

wishing you the best!

Harry

Comment by Kimberlee Jones on June 3, 2011 at 19:53: Elaine, thank you for sharing our story. By the way you are doing amazingly 4 weeks out!! If you have any questions for anyone or just need to vent your frustration, please do. Trust me the venting can make a bad day better. Remember we are all here for you if you need us.

*hugs*

Kimberlee

Comment by Cheryl Kerber on June 3, 2011 at 4:10: First of all - congrats on being a survivor --- I keep hearing how lucky we all are. As I sat at my 2nd son's high school graduation I felt an overwhelming appreciation for still being here to see him walk the walk and toss the tassle to the left as they took their diploma. I still have a 14 and 11 year old that I very much so want to see and physically/humanly be there to see them graduate. I wondered how many other parents really appreciate the gift they have of physically being there even with all the stress and running around we do as parents while our kids are growing up.

Even though I am not thrilled at what I have gone through, and what I have to face this July with another surgery, I am very thankful that I see the world and my life (though at times can feel like a downward slope) differently and enjoy the smallest of things.

I know you will understand, if you don't think you do yet - this experience brings a whole new look at life.

It will take time. For me, I couldn't even drive for 6 months as I couldn't look over my shoulder to back out of the driveway. Walking across the street felt like a mile, but just know it will all come with time.

Our brains want to go at the pace we used to - but our bodies sure let us know quickly that it gets the last word!

Don't hesitate to ask questions. I have had so much help from those on this site, and just knowing they are there for me, is hard to put into words what that has done for me ---- and will be this next coming month as I have to psych myself up for the 2nd go round --- knowing I have to go through the same healing process again -- but I will, just like last time and you will be amazed at what you have come through!

glad you found Graeme's site!

Cher

Comment by Kev A on June 1, 2011 at 11:50: Hello and welcome Elaine

Great to have you here!

All things considered sounds like you're doing very well indeed really!

I'm six weeks into my recovery from an emergency AD - type A too. I've been home for nearly 3 weeks now and whilst at first it was a struggle, I really have picked up this week!

1wk @ home (4th overall) was awful - put down to an wound infection (GP actually found this!)

2wk (5th week) slow progress - abt 20 min walks at this time – but progress overall, from the last week!

3wk (6th week) now I'm battling to control myself. Hour walks no problem - everything is coming together now. Just have to reign it in so to speak. Although yesterday I was walking through a park (it's half term up here) and a father/son were having a kick about. I was begging the ball to come towards me and sure enough it did - old school left control and right foot volley in one motion (still got it) return the ball - however think I've hurt my thigh as a result. So my advice is - when you do reach this stage, don't over do it! It really is one day at a time!

I was on paras at first too but informed my GP of the pain/struggle and he prescribed stronger painkillers (Tramadol) which have helped a lot.

All the best

Kev

Comment by Richard Deal on June 1, 2011 at 9:52: hey elaine,

the initial shock of the ad coupled with the frustration of not being able to do what you did before without either feeling an awful pain and/or breathlessness is a steep hill to climb. you have another 2 weeks by my reckoning, before your body has fully expelled all the chemicals used to operate on you and then the recovery hill becomes a whole lot less steep. i am not sure you ever get to the top of the hill with an ad, but you certainly don't notice that it is a hill after a while...

it is still early days, but give it another couple of months and look back on this time and you will definitely notice a massive improvement!

take care,

r