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Dumela

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Posts : 3
Join date : 2008-09-25
Location : UK

PostSubject: One more for the list....   Thu Sep 25, 2008 7:01 pm

Hi all
Well fancy stumbling across this place. What a super idea and real spirit lifter on a post DVT low day.

I had my DVT episode back in 2001 and have very recently had a return to life with blood clots after discovering a clot in my right calf and one on the outside of my ribcage just above my sternum.

I'm currently off work and have spent some time researching into the whole DVT anti-coag subject and have found a wealth of information that was not so publically available 8 years ago.

Amongst other things the addition of new clots and now a lifetime of anti-coag left me feeling rather down. So when I stumbled upon a blog someone had been writing for the past few years detailing their condition, how they cope and their medication etc... I thought that maybe something similar might help me. I had always shied away from telling folk about my DVT history and using this medium seems to be helping me cope with the recent events by enabling me to share in much greater and considered detail my story with an element of anonymity. (The name is Chris by way from the UK.)

I started on my blog a few days ago and well, rather than repeating my full story you can view a rather detailed version here : http://lifeafterdvt.blogspot.com/. You will need to read it from the bottom to top. (The similarity in name is a pleasant coincidence. It was when I googled the name of my own blog that I came across this forum.)

For those that didn't click the link. In brief this is what happened.

April 2001 I got married. Took a coach trip to Czech Republic for honeymoon. 24 hours of coach trip plus alcohol plus bad diet for several days plus genetic condition (found out later) led to bi-lateral DVT from hip to ankle. Was not aware of this until I returned home from Czech via plane!!!!! to the UK. Was treated the usual way, heparin then warfarin etc... (how I don't know, but I managed to not get a PE during this time) I could not walk for 6 weeks but through shear determination, will power and arrogance managed to get my self healthy enough to move to Botswana with my wife where she had gained a teaching post.

Spent two years in africa on warfarin. Moved back to the UK and stopped the anti-coagulation. Had not really thought much about a repeat occurrence over the past 5 years until last April when my Dad suddenly died from a massive heart attack brought on by a similarly massive PE.

Then three weeks ago I developed a new clot in my calf, followed by a clot in my upper torso. With second child on the way, a recently deceased father and the re-occurrence of clots the whole DVT, anti-coagulation, heparin, warfarin, INR, needles, bruising etc. etc. has suddenly shunted its way back into my life!!!

I do ramble on a bit I know, but it has been really refreshing finding this forum. I shall be a regular visitor from now on. If you managed to read through the blog so far, then well done, I intend to continue with it over the coming months / years with detailed info on my new life of anti-coagulation.

thanks
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RetiredNavy02

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Posts : 45
Join date : 2008-03-03
Age : 53
Location : Connecticut

PostSubject: Re: One more for the list....   Thu Sep 25, 2008 10:20 pm

Chris,

Welcome to the forum!

As a fellow DVT and PE "Survivor" I can relate to your story. My first DVT and PE happened in 1992. In 1995 I had my 2nd unexplained DVT. In 1996 I was diagnosed with a genetic clotting disorder which explained not only my own clotting problems but also brought to light my own parents medical history (both died due to blood clots). This experience has caused me to remain a vocal advocate of DVT awareness and co-founder of a large Patient Advocacy organization here in the U.S. (National Alliance for Thrombosis and Thrombophilia - www.stopthecclot.org)

I didn't notice if your physician tested you for clotting dosorders? If not, feel free to email me so I can recommend what tests they need to perform.

In the UK, I know there is a Thrombosis Charity named Lifeblood. Their website is located at:

http://www.thrombosis-charity.org.uk/cms/index.php

Again, Welcome!

Regards,
Tom
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brendablackburn

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Posts : 150
Join date : 2008-06-24
Age : 50
Location : Vancouver, BC, Canada

PostSubject: Re: One more for the list....   Fri Sep 26, 2008 3:21 am

Hi Chris,

Welcome! Sad you're here, but glad you're here if you know what I mean! Thank you so much for sharing your amazing story. Wow--you have really been through so much since 2001, and it is really inspiring that you have decided to blog your story. I can only imagine the emotional roller coaster you have been through. And I'm so sorry to hear that you lost your Dad to PE. Man, I had never heard of DVT/PE until I had it... now I can't believe there are so many people who have been touched by it. I only hope we can spread more awareness... thank you so much for contributing to that, despite all that you have been going through. You are a survivor!!! cheers

I have read your blog (what a coincidence on the name indeed!) and would love to subscribe, but not sure how to do it on their so it goes into my RSS feed of my email (I'm on mac)... any ideas? And don't worry about rambling (from a fellow rambler) Smile as it's so great to hear what another person with DVT goes through. I learn so much from everyone. Lots of great folks here... they really helped me and supported me as I've been going through things since my DVT in June, and PE discovered in July. (Speaking of rambles... I sure have had lots as I was trying to come to terms with everything!)

Anyhoo, I'm off to the DVT Summit in Boston, leaving in the morning (Fri. Sept. 26) and back late Sunday, so hope to learn more information (both from them and Tom--on this thread--from NATT) to share here in Canada. (We are completely lacking--other than this great forum of Denis' so far--in awareness/education, so I'm hoping to help change that and bring some to the West coast.)

You can catch my ongoing saga Smile in the Lounge under "DVT Diary from Vancouver".
Thanks again Chris and again... glad you're here! sunny
Hope to chat soon,
Brenda
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http://www.meetup.com/DVT-Support-Group-of-the-Lower-Mainland/
Dumela

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Posts : 3
Join date : 2008-09-25
Location : UK

PostSubject: Re: One more for the list....   Fri Sep 26, 2008 10:29 am

Hi again

Nice to hear from you two. And very much in keeping with the posts of newbies I read before applying for membership, you have both been very welcoming and supportive.

Not sure about the RSS thing. I will look into it and see if I can get some instructions on the site for people.

Tom, I was tested back in 2001 for gentics issues and have just recently requested that my little lad go for similar tests. It's not something I intend to alter his life for the moment in anyway, but if he is similarly affected he may need to take it into consideration when he is older. My grandmother on my dads side suffered with 'bad circulation' in her legs all her life and almost certainly suffered from some clots at some time or other. With the PE my Dad suffered and my condition, it would not be surprising at all if I am actually third generation with this condition. Apparently it's a 50:50 chance of getting the defective gene, well the odds have not been working in favour fro our family.

Tom, it sounds like you were about the same age as me when you had your first DVT. I find it strange thinking back to those times when I had no kids and was still officially considered young 'lol' . I handled it so well back then. At 34 with kids, mortgage, career, credit cards etc.... I'm not sure how I would be taking it if I was going through this from the very start. These past few weeks have been stressful and a considerable strain on my family, but we are not wondering into the new. My wife and I both went through the learning and life changes last time. We kind of already know the score and are not fearful, but more disapointed to have to commit to anti-coag for life this time.

I am still amazed at how much info is out there these days. I actually work in web development and used the internet for work, research and infomation. I have never been a big fan of the social side of the internet facebook etc... I guess up until now I didn't feel the need to connect to anyone other than my immediate family, friends and neighbours.

Thanks for the support people.... alien
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Gismo

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Join date : 2008-03-20
Age : 46
Location : Johannesburg, South Africa

PostSubject: Re: One more for the list....   Fri Sep 26, 2008 12:56 pm

Hi Chris and welcome Smile

So nice to "meet" you and to read your story. I think its fabulous that you are blogging your journey with DVT/PE. I think its very therapeutic and, in turn, very helpful and informative for others.

As Brenda mentioned, I also had no clue what PEs / DVTs are until I had to learn firsthand. I suffered a DVT in my right leg as well as a PE a year later. I am a lifer on Warfarin as I am Factor V Leiden. I have recently stopped taking Warfarin and am taking Clexane instead as I am trying to fall pregnant. My nieces have gone for the whole genetics testing and thankfully they do not have the gene. My sister and mother still need to go.

I know you will find this forum very informative and besides that, meet wonderful people who understand what you are going through and are all routing for you!

We are all survivors and we intend to stay that way! bounce

Have a super day!

Regards,
Madeline
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Linda

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Join date : 2008-07-08
Age : 66
Location : Surrey, UK

PostSubject: Re: One more for the list....   Fri Sep 26, 2008 1:58 pm

Hi Chris,

And welcome to the caring, crazy and best-intentioned group of folk ever! Good to see another Brit here - though checking again on your global travels do you have roots anywhere anymore? lol!

I'm yet another DVT and PE victim - entirely caused by a soppy accident falling down a few steps awkwardly. I do hope you are getting all the help and support and help that is available in the UK - though I am depressed at how little it seems compared with folk elsewhere on the globe. All the best with your searches for genetic info/causes and effects. One teeny ray of light that has come from my own treatment which has been completely Clexane driven (I was horribly allergic to Warfarin) is that after asking around I discovered that long-term use of Clexane can cause osteoporosis, and my broken/DVT filled leg leg took an absolute age to heal .... so now my doctor has aranged for a test to see if I am likely to develop the condition in years ahead (my elderly mum has spinal osteoporosis and is in lots of pain) so any info I can glean ahead of time may help me to steer clear of that in the future.

All the very best with your own blog site (snap re titles, eh? Laughing) and in getting to grips with everything for you and your family.

Take loads of care, and welcome again

Linda flower
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dero
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Join date : 2007-12-09
Age : 57
Location : Near Ottawa, Ontario Canada.

PostSubject: Re: One more for the list....   Fri Sep 26, 2008 2:07 pm

Hi Chris,

Like the others (Brenda, Tom, Madeline and Linda) said , let me wish you a warm welcome to Life After DVT(the other place Very Happy ), too bad you have to be here but together we can make it easier. I don't have to tell you, you are a veteran at this...
Any questions, don't be shy,please ask, the group here, is very sympathetic and yes crazy (thanks Linda Wink ) , we have all been through it, at various level.
Take care...
Denis.
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