Aortic dissection & aortic aneurysm information support group

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

** Important News for Aortic Dissection Support Group Members **

Hello everyone - I hope you are all well, healthy and happy and enjoying our wonderful summer (Northern Hemisphere!)
 
Firstly, my apologies for not being more active on both this, our AD site and its sister site (MHV site) over the last 18 months or so, but running our own (very busy now!) specialist travel business and generally really living life to the full (:-) ) has kept me flat out (and happy as well!) 

Unfortunately I must inform all members that I have been diagnosed with aggressive prostate cancer 6 weeks ago which has thrown our and our families world into a complete spin as medical procedures and treatment has now taken total priority over my life and our business and will do so for the considerable future.

Hint. Its NOT a good prognosis for someone with an AD or a MHV as having an Aortic Dissection repair plus a mechanical heart valve plus being on long term warfarin therapy has complicated treatment and treatment options for prostate cancer considerably, however I have a great medical team and am very positive for the future! 

My experience also interestingly enough opens up yet another Pandoras box in which little or no info exists online for men newly diagnosed with prostate cancer post AD/MHV and long term warfarin therapy. 

So, stay tuned for another new chapter with the MHV and AD sites! :-) 

To add to the news, I have had to have extensive new medical scans and all sorts of often quite amazing tests and procedures over the last 6 weeks. Imagine to my total (gobsmacked!) suprise (and my entire cardiology team) to find out yesterday as a result of one of the latest 3D scans/tests that I also have a chronic Type B dissection right down into my Illiacs with one of my kidneys (left renal artery) being fed off off the false lumen! Happy days! Seems it has been like that for years (since the original dissection 12 years ago?!) and is as per the report "a good long term result"( !) but no-one picked it up till now..just as well did not know about it until now or I would have gone quite crazy.

So, to cut to the chase, my life has now reached a total life/work re-evaluation phase now which is also going to include how much time I spend on this site and the AD site as well in the future... as both are still very heavily trafficked but only a fraction of our members pay the annual subscription. 

Added to this in November this year we face a mandatory rebuilding of both web sites from our current hosting company (NING) which is going to take considerable time and money. Idon't see any point in exporting all the years of data on both sites to another hosting platform as only more work, extra cost and extra (my) time will be involved. 

Accordingly, after a lot of thought I have decided that I will be closing off the site in the next 8 weeks to only paid up members (for postings only - the general public will still have full access to all the information shown on the site but will not be allowed to post on the site) which while it will decrease the amount of postings will bring a real sense of community to the paid up members plus decrease my workload on the sites and give me time (and funds) to be much more involved in running the sites on a daily/weekly basis as I pull back from our business and my current frantic work schedule. 

I have also through our MHV involvement with ACSMA and with this new situation taken up home testing/self monitoring with my own Roche Coagchek machine for monitoring my warfarin levels (INR) which is a a lifesaver (!) especially with my time and not having to travel to have the INR tests done externally, plus is great for business with my constant travelling to France and Europe especially.

Well, that's all for now. I will be making progress posts on both this site and the MHV site over the next 8 weeks and also generally re-arranging and implementing changes on both sites which will greatly enhance our members experience and communication abilities. 

As they say - We (I!) live in interesting times. :-)

Best wishes and good health to you all! 

Cheers


Graeme Archer
Founder: Aortic Dissection Support Group
Mechanical Heart Valve Support Group

Views: 334

Tags: aortic, cancer, dissection, heart, mechanical, prostate, valve, warfarin

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Comment by Del Cosson on December 28, 2014 at 5:46
Great to hear tour encouraging results. Wishing you a healthy and happy 2015
Comment by Kimberlee Jones on November 13, 2014 at 16:46

I am so happy for your wonderful news! Enjoy the holidays with you family and know that you are always in my thoughts. Give your amazing wife my love also.

*hugs*

Kimberlee

Comment by Graeme on November 13, 2014 at 12:44

Just an update for all. I am well into the last stage of my treatment with now radiation for 8 weeks and so far so good, all procedures already done show very good test results. After this final long haul and Xmas and NY behind us will be finally done. Roll on Xmas and NY! Cheers to all...!!

cheers

Graeme  

Comment by Julia Holley on August 9, 2014 at 18:16

Good luck with everything and certainly thank you for all the support that you have given me personally  and that I have had from belonging to this group.

Comment by Kimberlee Jones on August 6, 2014 at 22:40

Thank you for keeping us updated! Even better it's good news, woo hoo! Keep updated us, here's to more good news!

Comment by Gary Davis on August 6, 2014 at 14:54

Graeme, so pleased hear the positive news. Keep up the great progress mate. All the very best to you

Gary

Comment by Graeme on August 6, 2014 at 14:42

All.

First procedure went off brilliantly on Monday. Home already. Also had smashing news on my PSA count - now down from 6.8 to 1.5. (I have entered a parallel world now between INR and PSA levels :-) ) Thank God for home testing!!!! Go Roche!! Cruise now until procedure healed then 2 week radiation consultation then program starting mid November. Looking good! Cheers Graeme 

Comment by Gregory Smith on August 1, 2014 at 12:06

Sorry to hear of your problems but good to see you are so positive about it. I have always found the best medicine is a positive outlook and not one of self-pity. I, too, discovered I also had a Type B dissection all the way down past my kidneys, when I had a total body scan after suffering intermittent claudication in my left leg. The consultant said that the blood in the false lumen had coagulated nicely!

Comment by Gary Davis on July 27, 2014 at 20:16

Graeme,

Sorry to read about your set back mate. I feel sure we will hear you report back on a positive outcome to this latest challenge. Take good care of yourself and my very best wishes for a quick recovery.

Cheers

Gary

Comment by Kimberlee Jones on July 26, 2014 at 13:46

*hugs* Graeme...you know we are all here for you!  You were the first aortic survivor I spoke to after my dissection and also the father of this awesome aortic family here.  You and you amazing wife will be in my thoughts. Please keep us updated.  Jen Willians....don't be embarrassed about giving us good news...congratulations hun.  *hugs*

*hugs*

Kimberlee

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