Aortic dissection & aortic aneurysm information support group

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

I don't know who to talk too and I wish I had somebody that understood in my life. I'm going to vent a little here and hope it helps. I'm just so tired about being tire. It's not the dissection that is keeping me down but this stupid leaky aortic valve. I'm exhausted all the time, I can't even walk from one room to another without running out of breath. My heart feels like it's in overdrive whenever I'm doing anything active at all(including just standing up) I'm dizzy all day long and at times feel like I"m going to pass out. I get these stupid chest pains which always make me stop and pay attention to see if they are the normal pains that I get due to the leaky valve or something new and different. I do have an appointment to get another echo in about a month....but I'm thinking I need to call and get in sooner, call it a feeling I guess. OK vent over....thanks for letting me rant a little.

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Comment by Carol Pont on January 15, 2011 at 14:23
Hi Kimberlee. Thank you so much. Its taken 4 months too find the group. I am so pleased that i found the group. As nowhere is there any information how you feel after surgery for a type a dissection. Its early days for me as mine was on 28.08.10
Comment by Graeme on May 13, 2010 at 7:59
Kimberlee, you KEEP 'ranting' - not that your concerns and frustrations are rants..they are - as the others here have pointed out - EXTREMELY justifiable concerns.. You should NOT have to put up with this..it sounds almost certain your aortic valve is a real issue...see your doc/specialist URGENTLY and as Marion said - be RELENTLESS is pushing for a solution with them...only you can make this happen..I know it is hard and totally frustrating but even though we are not physically there with you for this - we ARE all here on the site for you..

Also re your dizziness.. Yes - after 7 years (7 year anniversary 2 weeks ago!) I still get intermittent dizzy spells - especially if i stand up suddenly or get up out of bed suddenly - ie from vertical to horizontal - as the docs theory is the blood flow on horizontal goes from 'easy peasy' to 'hell - he's vertical - pump like crazy!' - and the artificial valve seems not to be as in tune with changes like this as if it was an integral organic part of the body (i.e your original valve). A strong medical(?) theory is that a degree of 'memory' exists at at a cellular level which anticipates instant changes in your body stress and physiology...hmm.....!

I also have bad double vision once or twice a month...the attacks last for about 5 mins or so - computer work seems to aggrevate them as well - that' s a bummer for me as peering into a computer screen is my work life...! Anyway i just shut my eyes for 5 mins or so and relax and 'hey presto' the attack has gone..I look on it as a small price to pay.. Interestingly enough I have been checked backwards and forwards for this..no real answer but the specialists think I had a small stroke on the table during the op as it was a long one (10+ hours) and this has caused an intermittent fault between the brain and the optic nerve..ha! As if I did not already know i was a little crazy anyway!

OK. YOu take care Kimberlee. We want to hear the outcome of this ASAP!

Go get em!!

graeme
Comment by Kimberlee Jones on May 12, 2010 at 17:04
It seems I have to wait until June for another echo(to check on valve) my insurance won't pay for it any sooner and I can't afford to pay out of my pocket. But if it gets any worse I will go anyway, cost be damn!
Comment by Richard Deal on May 12, 2010 at 16:24
Kimberlee,
you are the best placed person to advise the doctors of changes in your condition, so if you feel it needs acceleration then go for it!
let us know how it goes,
r
@Marion: glad i have finally been of some use! which one did you plump for?
Comment by Kimberlee Jones on May 10, 2010 at 18:28
We already know what is causing it, it's the leaking arotic valve, they say it's moderate and don't want to do surgery yet, I believe it's time to push them my way or see another doctor. From what I've read once the valve is repaired/replaced all those symptoms go away.
Comment by Marion Millington on May 10, 2010 at 16:02
Hi Kymberlee,

I agree with Richard, you need to seek the support of your Doctor and Surgeon.

I have only felt the kind of fatigue you are talking about twice, the first was after I dissected, and I was given a cocktail of drugs to protect my aorta, by slowing my body down, I was just like you have described, short of breath, dizzy, tired I’d sit down and hours would pass without me trying to find the will and energy to get up, going out was not an option, six month later I thought I was a lot better but when I tried to go Christmas shopping, it just was impossible and was left in tears much to everyone’s distress.

It was at this point we started to push my surgeon to try to find a solution, as up to that point we had only been given a medical solution, I know the odds that I was given would have put many people off, 20% survival, 90% chance of a stroke or paralysis, but my life since the dissection was an existence so we decided to take the chance.

After the operations in May and July last year I was once again back to what seemed to be the start again, so weak I couldn’t even rub my hair dry with a towel. Six months on, I have reduced my medication dramatically, I walk 2-5 miles a day and after Richard’s advice about Cross trainers which shamed me into buying one,I now do about half an hour on it 5 times a week, thanks for that Richard!

As for the pain I think we all have that one, every time I get a new one I think what is that all about? is it anywhere important, is it going away? do I need to panick? - I'm not sure when or if that one ever changes and like Richard my dizzy spells seem to come and go, part of blood pressure meds in my case I think.


I think what I’m trying to say is our Doctors and Surgeons are great but once we leave their office we don’t necessarily come to mind until the next visit and if we don’t push them or say what is happening to us is unacceptable they won’t know, plenty of people will have rushed to emergency feeling half as bad as you do right now. For lots of reasons we accept the hand that is dealt us, when things are precarious we don’t want to upset the fine balance that is our lives, I know through crying many tears of fear and frustration, but there is only one way and that’s forward, so don’t spend another day feeling like you do, contact them and ask them what they are going to do to help you!

Just a side line, in the UK anything that happens on the right side of the heart which may affect the heat is dealt with by a heart specialist/surgeon anything that happens on the left is dealt with by a thoracic specialist and surgeon, when you have both as I know you do are these people talking to one another????

I know it’s crass but my heart goes out to you, I just want to get in the car and come fight some battles for you!

Please feel free to give me shout anytime I am always happy to talk.

Keep safe and well

Marion X
Comment by Richard Deal on May 10, 2010 at 12:29
hey kimberlee,
i wouldn't call this a rant or a vent, i would call it justifiable concern for your own health. in any case i don't think you should suffer with fatigue like it sounds like you do. i would definitely make sure you let your consultant know of your complaints and would get either an internal (transoesophageal echocardiogram) or an external (transthoracic echocardiogram) ultrasound done of your heart and specifically the aortic valve just to know the current situation in there and give yourself a status with which to compare against.
my aortic valve leaks too, and i also have a ~15% section of my heart that is 'dead' but i am still able to jump on a cross trainer and 'run' 13kms and i do not tire myself out moving from room to room or running up stairs.
dizzy spells are, i have come to believe, the norm as i regularly (about twice a month) suffer with them, and various chest pains are also commonplace, but i definitely think the fatigue is worrying.
get your doctors on it!
r

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