lots going on recently.....

[joy]

Wow, so I havent been onsite for a while, but quite a few of you know from my facebook page that on february 27th, my cardiologist told me it was time for surgery again.... well about a month later, on april 1st, I had my valve replaced with a shiny new.....mechanical valve. I had Dr. Verrier, the same surgeon....any ways, recovery is going well!

 

[pellicle]

Joy

welcome to tickers club

Best wishes

 

[joy]

Yeah I was part cow before....haven't heart my valve tick yet. I am feeling surprisingly well for someone who is a week and a half out from my second ohs......lol

 

[pellicle]

I am feeling surprisingly well for someone who is a week and a half out from my second ohs......lol

good to hear ... my memory is a bit unclear but I recall feeling simmilarly when I was 28 after my 2nd OHS

if this is your first time on warfarin its not anything like as bad as some make out. I've done a bit of analysis on my last few years of data and have found that based observation that there is a sort of natural variance of my INR. So don't get too fretting over INR while you're getting used to it.

 

[Agian]

Pel, you've got heaps of data at your fingertips. They say people with mechanical valves on Warfarin have a 1% per year chance of a bleed and 1% chance of a clot. I would have thought this referred to people who don't self-monitor. What do you reckon the risk is for those that monitor meticulously? Significantly lower? I'm weighing up future options.

 

[ottagal]

Glad to hear your second surgery is behind you, Joy! So glad to hear that your recovery is going well and may it continue that way.

 

[Eva]

Happy for you...you sound at peace with your new valve. I very rarely and hardly hear my mechanical valves.

Wishing you continued successful recovery.

 

[mainframe]

Hi Joy. Glad you're doing well. I've had my mechanical (2nd) for a bit more than 5 years now. Here's something of a surprise. I went to an equestrian event shortly after my second OHS to see the daughter of a family friend in Monroe, and there was Verrier as a participant. It's funny where you bump into people.

 

[Duffey]

Hi Joy! Thought I'd say "good going" on VR as well as on FB. To say, "you've had a lot going on" is quite am understatemt. I hope it's all smooth sailing from here on out. Mary

 

[pellicle]

Hi Agian

Pel, you've got heaps of data at your fingertips. They say people with mechanical valves on Warfarin have a 1% per year chance of a bleed and 1% chance of a clot. I would have thought this referred to people who don't self-monitor. What do you reckon the risk is for those that monitor meticulously? Significantly lower? I'm weighing up future options.

its a fraught field to give reliable answers in because of the dearth of research which relates to us. Most studies lump all warfarin takers into a single lump and so getting good numbers for us valvers is tough (Atrial Fib and general stroke candidates all lumped in together). For examle in this study comparing "usual care (that's US speak for not much care at your Dr's office) vs Anticoagulation clinics) :
http://www.ncbi.nlm.nih.gov/pubmed/9701098
they say:

Patients treated at an AC who received lower-range anticoagulation had fewer international normalized ratios greater than 5.0 (7.0% vs 14.7%),

like really ... fewer lower than 5? Like I've never even hit 4 ... makes you wonder what the hell is going on in there.

My usual go to graph for INR and hazzard is this one:

which makes it clear that in range the incidence is less than 3 events per 100 patient years

In the interests of keeping this brief lets run with that 1% and so that works out over 15 years you'll have a 13% chance of any "incident" ... however is it really 1%

I'd argue no ... but there are so many factors ... like your age and likelyhood you'll have a bleed or a clot increases in the general population and is related strongly to your other general health. I've never seen any data on the rates of these things in the general population broken down by year ... let alone compared to valve patients.

If I find something more I'll let you know, but as you know I think well managed AC therapy in a healthy individual is much safer than the general "usual care" crowd points out.'

lastly you may want to download and dig through this

http://www.pbs.gov.au/reviews/atrial-fibrillation-files/report-anticoagulation.doc

 

[pellicle]

PS:
from:
http://circ.ahajournals.org/content/107/12/1692.full

[h=3]Patient Self-Management[/h] Coupled with self-testing, self-management with the use of POC instruments offers independence and freedom of travel to selected patients. ... These descriptive studies were then followed by several randomized trials. In the first study, 75 patients with prosthetic heart valves who managed their own therapy were compared with a control group of the same size managed by their personal physicians.[SUP]147[/SUP] The self-managed patients tested themselves approximately every 4 days and achieved a 92% degree of satisfactory anticoagulation, as determined by the INR. The physician-managed patients were tested approximately every 19 days, but only 59% of INR values were in therapeutic range. Self-managed individuals experienced a 4.5% per year incidence of bleeding of any severity and a 0.9% per year rate of thromboembolism, compared with 10.9% and 3.6%, respectively, in the physician-managed group (P<0.05 between groups).

interesting is it not ...

 

[Agian]

which makes it clear that in range the incidence is less than 3 events per 100 patient years

Is that the same as 3%?

 

[Agian]

4.5% incidence of bleeding and 0.9% incidence of thromboembolism still sound high.
PS Thanks for the links.

 

[pellicle]

Is that the same as 3%?

no, its much much lower ... without doing the maths I think its more like 0.003% per annum - but I'm not really a stats expert.

4.5% incidence of bleeding and 0.9% incidence of thromboembolism still sound high.

it does, but it underscores 2 points
- the cohort under study are not "healthy" members of population who just happen to have valves
- the quite large difference that better than "usual care" makes

as we've previously discussed in that study of ROSS vs Mechanical there was no difference between ROSS (without AC) and Mechanical (with AC)

 

[pellicle]

PPS:

http://www.gastroenterologie-hamburg.de/def/pdf/IntestinalBleedingBaillieres-6-00.pdf

he seems to lament the lack of data too ...

 

[ottagal]

Pel, you've got heaps of data at your fingertips. They say people with mechanical valves on Warfarin have a 1% per year chance of a bleed and 1% chance of a clot. I would have thought this referred to people who don't self-monitor. What do you reckon the risk is for those that monitor meticulously? Significantly lower? I'm weighing up future options.

Don't want to highjack Joy's thread here, but not sure if the stats in this article will be of help:
Published in the World Journal of Cardiology: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3312231/
It discusses management dilemmas in individuals on warfarin and with mechanical valves. There are some stats in there regarding risks.

 

[pellicle]

Hi

Don't want to highjack Joy's thread here,

too late, but I'm sure she won't mind ... she'll be on it soon too

but not sure if the stats in this article will be of help:
Published in the World Journal of Cardiology: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3312231/
It discusses management dilemmas in individuals on warfarin and with mechanical valves. There are some stats in there regarding risks.

from one of the refs within that:

http://www.ncbi.nlm.nih.gov/pubmed/15653962/

Fifty-one thromboembolic events (TEs) were documented, resulting in a linearized incidence of 0.75 TEs per 100 patient-years, 22 of which were minor (0.32% per patient-year), 10 were moderate (0.15% per patient-year), and 19 were severe (0.28% per patient-year). Thromboembolism following AVR was significantly lower than after MVR (0.53% per patient-year vs 1.64% per patient-year). Patients reported 1,687 bleeding complications (24.8% per patient-year). The vast majority of bleeding complications (n = 1,509; 22.2% per patient-year) were classified as minor,

The intention-to-treat analysis of the results of the German Experience With Low Intensity Anticoagulation study leads to the unexpected result that despite a sophisticated reporting system, the incidence of moderate and severe TE and bleeding complications was comparably low in all INR strata and more or less within the so-called background incidence reported for an age-related "normal" population.

the bits I've underlined I think addresses some of Agians concerns

anyway ... thanks for those links

 

[Agian]

no, its much much lower ... without doing the maths I think its more like 0.003% per annum - but I'm not really a stats expert.

So I guess, as long as you're within the 'sweet spot', as you call it, you shouldn't have any problems.
I'm thinking '0.003% per annum' would be pretty close to the incidence rate in 'normals'.

There's a lot of palava about a mechanical valve not requiring warfarin, but if that requires Plavix plus Aspirin, I don't see the point. I was on this combination after my PFO closure and I bled like a stuck pig. And I bet the rate of a bleed on this combo was a lot higher that 0.003%

Sometimes I feel like just having the op and getting it over and done with. I felt a little woozy on Saturday and started fretting over whether it was a symptom of my stenosis.

 

[epstns]

Joy! Long time, no see!

I'm glad to hear that after valve #2, you're doing so well so quickly. We've missed you around here.