Aortic dissection, aortic aneurysm - The aorta - Life after an aortic dissection
I'm hoping they explained what kind of clot it was - if it is one that leads away from your heart or not. I don't know much about clots, but I happened to have been in the ER 2 days ago due to some odd symptoms which led to an EKG, Catscan and so forth. (I'm 6 years post my surgery)
From the catscan, I found out that I have a thrombus that has enlarged within my aneurysm and grows along with my aneurysm. The dr said that it isn't abnormal, but to be aware of it. Due to my still having the dissection/aneurysm, I can't be put on blood thinners for risk of bleeding out if my dissection reopened. What he did tell me though was that if I get numbness in either of my feet, or pain in my leg, that I should be checked for a clot, and they would deal with it if it happens.
I understand the being wiped out --- just the stress (the mental stress we go under while at the ER - more so than any physical expenditure) completely wipes you out. I could hardly function yesterday, so I understand.
I haven't had to do the Coag clinic so I can't speak for that. Try to trust in how you are doing over all, but I'm glad you listened to your gut about your arm. I wasn't sure if that is why you went to see your GP or if it was just coincidence that it lined up with your arm pain.
Please let us know what you find out - if they have any ideas as to how it developed and so forth. And just know my best hopes are with you as you work through this.
purely speculation on my part, but i imagine because it is in the left arm it travelled from the heart - most probably from the valve - so it sounds like your inr dropped out of range for a few days.
do you self test? if not, perhaps you should ask your gp to sort something out for you with regards to learning how to do it, and prescribing you the stuff to be able to do it. you don't need to test every day, once a week should be enough - unless you feel funny, or something out of the ordinary happened (like you accidentally ate broccoli, cauliflower and stilton soup followed by a kilo of spinach, or more conventionally forgot to take a thinner).
the (big) bonus you get from self testing is that you are medicating yourself, and i am not sure if it is the independence, or the freedom to test whenever you want or the placebo effect at work but it makes a hell of a difference to your overall emotional state. having a nurse try and find a vein that behaves likes buttered spaghetti in your arm every week, or every fortnight, is not particularly conducive to promoting mood - especially not, as it seems here, if you're gonna get a clot anyway...
my small, short-term, contribution to improving your mood right this moment is the following.
Richard, I just want to let you know how much I appreciate your humor. You make me smile -- and I was at a funeral all day today! Granted for an aunt in her 90's but as her grandkids gave their speeches about their memories of her, I'm very aware of how the smallest of things leave huge long lasting impressions on others around us. And for me, you leave a smile in my heart! I thank you for that.
Kimberlee, you have this tender heart that leaks through my computer screen and just makes me feel like you've given me a huge hug --- not because you say it, but because I feel like you really mean it. At this funeral today, one of my husband's cousins who is about 42 or 43, just found out she has a rare form of breast cancer on Christmas Eve Day - she gets to do some experimental treatment since it's spread already and it's very scary for her not to mention she says she's in the "why me" stage and I know we've all been there - (she found it by the way but her mammogram never showed it). Ironically, her father was my father's best friend from high school on - he died over 20 years ago in his early 40s from a rare blood cancer after several years of fighting it so it's brought up alot of memories for her from that time and it's very difficult. As I was talking to her, the one thing that stood out to me was that I hope she could find a support group that could fill what you guys fill for me.
No matter what health situation we have - cancer, heart disease, diabetes, AAA - we all share the same common human vulnerabilites and to have someone just understand with or without words how that feels is priceless.
All of you on this site mean something special to me and I came home from the funeral and logged on and found new replies and I want to just thank you for being out there and for helping me not feel so alone.
and all my best to everyone,
Carol, first let me say I'm sorry it took so long for me to respond, I've had a very migraine filled week and it has been keeping me under for the most part. I know everything is scary right now and the words blood clot can fill anyone with fear, let alone someone who has gone through everything you have. Good news is they have caught it before any damage could be done. So now take care of yourself, listen to the doctors and know even in this you are not alone, my thoughts are with you and as always so are my *hugs*
Now now Cheryl we really must talk, you are not allowed to make me cry with such kind kind words. I just hope something I say can make someone feel better, words don't really mean much in the grand scheme of things, at least in my world actions say so much more. Unfortunately I'm limited over the internet but my thoughts, love and hugs are always sincere and I do care very much about each and every one of you. So *hugs* are in order of course.
I can't imagine how you feel Carol, I'm the first in my family for any heart trouble or really any major health issues at all. All I can say is when your feeling your lowest, know that you are in my thoughts and that I will always have a hug for you. I know it's not much but it is the best I can do.
No thanks, please. I just wish this site was around so soon after my surgery. I know what it is like and I know that even a few kind words can make one feel so much better. My goal is to help people get through that "going crazy" part of AD. Let me know how the tests go please.
First of all --- HAPPY BIRTHDAY!
I find that I don't mind bdays anymore --- it's an accomplishment, not an age thing. You may discover that too.
Also know that the "what if's" will always be there, but how you look at them will change. I have had to do alot of reading in regards to how to deal with stress and the "negatives" of life and learn ways to work through my "what if's" (which happens daily at some point for me - some days worse than others, but I can usually figure out what sets me off like lack of sleep). Post traumatic stress syndrome is real and I don't think we ever get rid of it completely, but there are books that can help you find ways that will work for you to help ease through it.
At times, when I'm experiencing my "what if's", just telling myself to "cancel my thoughts" over and over (if the thoughts pop back in - and they do) can help, and then I find something else to distract me.
And then there are those times like last week, when the "oddness and pain in my back" led me to the Emergency Room for an EKG and Catscan - to make sure everything was still in order. I had put off my regular scheduled scans for over a year plus due to my husband being laid off and I didn't really want to spend that kind of money. Even though they didn't have an answer for me, they at least could eliminate the "big" stuff and it was a huge stress relief. Maybe I would have saved myself this undo stress if I had just followed through originally.
The knowing what we have, at least gives us a heads up, and the medical community listens since we have what we have.
I don't know what you were doing when your legs collapsed under you, but hopefully you won't follow the same track again. I can relate - as the better I felt (physically) I took on more, and well, our bodies have a great way of knocking us backwards to tell us to slow down or lighten up.
Even though we have been dealt a huge blow with our dissections/aneurysms - we have also been blessed with being able to see life "better". I hate to say it, but even though I thought I was very aware and thankful of life back when I was 38, working full time, raising my kids, and cruising forward -- my dissection and aneurysm woke me up to all the stuff I had been missing (that I wasn't even aware of) - the important stuff - just being more understanding and compassionate of those around me. I still have my "self - what about me - why me times" but they are short lived compared to back then. You end up looking at everything and everyone so differently.
So -- don't beat yourself up over your emotions -- feel them. Take your legs collapsing under you as a sign to just slow down a little bit. And treat yourself as you accomplished another birthday. And your last sentence says it all: "Most of all i am so happy too be alive. :)" and that is so true.
It will get better. I am not saying it is easy, or it will be fast --- everyone has to work through it at their own pace, so let go of any preconceived ideas you have as to what should be the "right amount of time".
My ad/aneurysm sucks by all means, but without it, I would never have met any of you. I wish you all lived like close by, but via internet will have to do for now.
Just know - I'm thinking of you and celebrating for you as to how far you have come.
Happy Birthday and you'll have many many more!
I will have to add a Happy Birthday, mine is tomorrow and the 5th one since my surgery. I never found birthday extremely hard, I find the anniversary of my AD much harder(so prepare yourself for that one). Also please remember we are here for you when you have days or even moments like this. Saying that I'm going to offer my yahoo IM I.D. for anyone that is having one of those really really difficult moments and needs someone to talk too right away. It's dorkette2010 and if you needs someone right away please look to see if I'm online.
we are here to help you through this.