Living with a Mechanical Heart Valve: Click.Tick.Thump. Love It!

Support Group for Mechanical & Artificial Heart Valve Surgery & Using Warfarin

** Important Information for all MHV 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  (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 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

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Comment by Martina on July 29, 2014 at 6:12

Graeme, I was shocked to read your posting – very sad to hear this news Graeme. Medical advancements are amazing these days & we can all attest to this, I’m sure you have an excellent team.

Thinking of you

Very best regards

Martina

Comment by David Trevose on July 26, 2014 at 15:38

Hi Graeme,

I'm truly sorry you're having to bear all this difficulty after all you've already endured.

I do hope things pan out OK for you

And on behalf of the MHV and Aortic community, (if its not too presumptuous of me) I'd like to thank you for all the work you've already done to benefit us

All the very best

David

Comment by Casa Joya on July 25, 2014 at 15:36

Wishing you all the best and try to look on the bright side of life.

Comment by Tim Grey on July 25, 2014 at 15:10

Graeme,

I'm terribly sorry to hear about your recent news.  A lot to deal with.  The vast majority of patients on coumadin eventually need other procedures and do fine with appropriate planning.  There is a point where the risks of being off anticoagulants must be accepted to allow for healing of surgical sites, etc.but it is worth accepting those risks for a couple of weeks because in reality, they are small, at least statistically.  

Thank you again for sharing your thoughts.  

Tim

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