Aortic dissection & aortic aneurysm information support group

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

My name is Nikki and I am the ‘She’ that Graeme mentions in his blogs. Graeme has a way with words while I am just good at talking, so this blogging is new to me. After Graeme got through his operation I always felt that we had been given a second chance and that we both needed to do something special with our lives. I now work for The Royal British Legion and everyday meet wonderful and brave people.

Graeme and I have often talked about sharing our experiences with others, but I found it difficult to say more than the basics as I took myself back to the most frightening time in life when I nearly lost my love, my best friend and the other half of my being. Growing up there had been much sadness in my family but until 22nd April 2003 I had no idea how much Graeme meant to me. We talked about ‘He’ (Graeme) sharing his experiences with others as there was no help group – then on 11th August 2009 he sat down at the computer and started this website. From that moment he finally started to open up and realize just how big a deal it had all been – he also realized just how much he could contribute to others who had gone through similar experiences – I am so very proud of him.

‘He’ had been asking me to read the blogs but I was frightened that the emotions would come flooding back. Yesterday I returned from a business trip, a Remembrance Tour to NE India with the most amazing group of people each on their own journeys to visit friends, husbands and family lost in Kohima and Imphal, in far northeast India, (site of terrible battles in World War 2). I consider them all friends now, I learnt so much from each of them and we all had an amazing time together. I asked how the Aortic dissection blog was going and he told me all about the wonderful people who had joined while I had been away. SO, today I sat down for the first time and read every word…. Tears are in my eyes as I remember, (although the memories are always with me I put them in a box so I can get on with life and not dwell) – I am so very proud of my husband and what he is doing and so very pleased to see more and more people joining.

Each of you are all very special and I do believe that we can all help each other. People and especially friends and family are loving and very kind but these experiences are something that only those who have gone through it can really understand. Thank you all for sharing your stories.

I have started this blog so that the partners and families can share thoughts on our amazing loved ones and exchange ideas.

Tags: Aneurysm, Aorta, Aortic, Dissection, Partner, family, forum

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NIkki,
So glad to meet you an know that there is someone else out there who feels exactly the same way I do. We're new to this (my husband's surgery was two weeks ago yesterday), so we're still at the very scared and SO TIRED stage, but I know that I am one of the luckiest girls in the world, and not just because he slept for four hours in a row last night! We know, too, that this second chance means we have a special reason to be here and it starts with simply appreciating each other and every moment. We're young (I'm 36 and he's 43) and we plan on sharing a long, happy life even if the ticking sometimes keeps us awake.

Thanks for being there. It is comforting to know that there is another person in the world who understands how overwhelming this is!

Best.
Julie
Julie,
Actually, I am so very glad to hear from you. My thoughts are with you both. We certainly are very lucky.

Even after all these years it was difficult to put my thoughts down in writing and your words have already made me feel better and glad that I did. We are all so focused on our partners that we don't take the time to realise the impact it has on us, the partners. Our friends were and still are fabulous but sometimes I do feel very alone in my day to day life and thoughts. I can't tell you how special it is to know that you are there and I know that this is only the first of many communications - I know it would help us all.

Please feel free to contact me about anything either on this forum or if you need more privacy then just email me. I don't look at my home emails as much as Graeme because of work but if you don't hear from me quickly just send Graeme a quick note and he will let me know.

Take care and all the very best to you both.
Nikki
Nikki,
Yes, you are so right when you say that our friends and family are fabulous, but it is something that feels very isloating at the same time. There is so little information/support out there for us and our tick, tick ticking partners, so I hope you and Graeme feel a sense of accomplishment out of knowing that Pete and I are very grateful to share our thoughts and feelings with people who really "get it." Even the health care providers and insurance company we deal with over here in the US are confused about how to deal with this condition because it is so rare. Coding and documentation has already been a problem for us...not fun when I try to straighten it all out!

You will be hearing from me often, I am sure, especially in these coming days and weeks as I try to get used to all of this! I hope you are enjoying this lovely weekend, it's a beautiful, colorful sunny fall day here--I appreciate nature's beauty more than ever before!

Julie
I am so happy to find your site. The US doesn't seem to have too many or any sites that share infor. My husband Larry suffered a dissected aorta, type b, Oct.5,2009, in Anchorage Ak. We're home now. He's here!!!! It's medicine therapy. Seems to be working. He's taking 7 blood pressure meds now and has been told he'll take them the rest of his life, he's only 55. Your Husband's site is hope to me, that through posts from other's who've been there, information I'm wondering about will be shared.
Hi, Thank you for adding your comment to this blog. Graeme certainly knows a lot about this topic so do feel free to ask him. Take care both of you.
Thank you Nikki, I will.
Hey Nikki,
You are very right to be proud of what Graeme is doing here. Hopefully it will help people new to the condition to get to grips with it, and also those who have had a dissected aorta for a long time to share their experiences and help shape a useful community. Also anything that raises the profile of this condition has to be a good thing... I, for one, am so glad I found the site because I really don't like feeling "special" and it is reassuring to be able to communicate with people who have experienced the same thing... wouldn't it also be interesting to see if we all managed to get into the same room whether we could synchronise or maybe even amplify our ticking? ;)
Have fun!
r
Hi, Just happened to be at the computer and saw your post - thanks. Have you had AD? If so was it a while back? I would love to communicate when someone who has been going through this for longer than us. Take care and best regards, Nikki
I am a victim of aortic dissection, but mine was last year in July, so I am not a veteran of the condition. I personally know no one who has suffered a dissection apart from those that I stumble across online, and most of those have suffered recently. There is a guy on Faceache, who is part of the aortic dissection group there who apparently had his dissection 20 years ago... maybe he (or his better half) would be up for talking?
r
Thank you for your answer - can't find the guy you mentioned on Facebook but please let that group know about our website as the more we can share information the better it can be for us all. Take care, Nikki

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