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 Graeme on September 29, 2014 at 9:19

Thanks John for your kind comments.

Things progressing well. Just about to start hopefully last phase of treatment protocol which is 8 weeks daily radiation which not looking forward to but it is the last phase of the plan and fingers crossed all done before xmas. I will keep everyone posted. 

Cheers

Graeme

Comment by John French on September 27, 2014 at 19:32
Graeme - I have not been on the site for a while due to work commitments and was just catching up on the MHV news when I read your post. Glad to see you are staying positive through what must be a worry time for you and your family and that the procedures are working for you. You have provided all of us with a support network that is second to none (thank you for that) so we are here to help support you if you need it.

regards John
Comment by Tim Grey on August 6, 2014 at 20:56

Great news!  So happy for you.

Comment by Martina on August 6, 2014 at 17:57

Excellent news.

Martina x

Comment by Casa Joya on August 6, 2014 at 14:58

What wonderful news only way forward stay blessed.

Comment by Graeme on August 6, 2014 at 14:36

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 Martina on August 2, 2014 at 18:30

Hi Graeme, I will be thinking of you on Monday. Good luck.

Best regards always

Martina

Comment by Graeme on August 2, 2014 at 16:44

Thanks all for your wonderful support. :-) First procedure 4 August then radiation starts 6 weeks later. I'll keep everyone up to date. Onwards and upwards!

cheers

Graeme

Comment by Kevin David Parvin on August 2, 2014 at 16:32

Dear Graeme,

So sorry to hear about what you are having to go through. We all imagine that you are a fighter, I'm in your corner with you.

My best wishes Kevin PARVIN

Comment by Martina on July 29, 2014 at 6:19

--comment for the administrator-------- sorry, I "multiple posted" my message to Graeme as I didn't realise there was a delay in publishing before posting i.e. approval.  thanks Martina

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