The Bum Ticker Rides Again

[Bum Ticker]

Hey folk,

Some of you might remember me. I had aortic valve replacement 15 years ago and wrote an interactive on line journal called the Tum Ticker. On April 1st 2013 I had the old pig valve replaced and have continued the story on line, this time as a blog. Check it out at http://bumticker2013.wordpress.com/2013/04/22/bum-ticker-rides-again/

Would love to hear from old friends if you're still out there!

Steve

 

[Duffey]

Steve, just checked out your site. I joined VR in 2004, but unfortunately that was several years after your initial replacement. What valve type did you have implanted this time? If you were 41 when you received a porcine valve, and it's lasted 15 years, you did well.
Thanks for sharing your story.
Mary

 

[Bum Ticker]

Steve, just checked out your site. I joined VR in 2004, but unfortunately that was several years after your initial replacement. What valve type did you have implanted this time? If you were 41 when you received a porcine valve, and it's lasted 15 years, you did well.
Thanks for sharing your story.
Mary

Hi Mary,
The original pig valve was done when I was 44 and yes, they were all very impressed that it lasted almost 15 years. This time I went for mechanical as I never want to have OHS again! Even if I have to now take warfarin...
Steve

 

[Sunshine susan]

Wow, Steve.... Was thinking of you not that long ago and wondering about you. Sorry to hear of your second surgery but 15 yrs a good while on tissue. We met on line after your original blog as I was awaiting my surgery with a St Jude's. Maybe the old Canadian congenital heart site. Hope you are doing well and I will be reading your new blog. I too am awaiting a second surgery. My valve is fine but I have an aortic root aneurysm close to "explode" stage.... 4.9 on 5.0 scale. May be getting a new tissue valve also just due to age factor and all the years I have been on warfarin. Will know next month if my fate is sooner or later. Prefer to just get it over with so I can retire!! Will be reading your new writings... and absorbing the impact of a second heart surgery! So how is the music! Godspeed, Sue

 

[Agian]

Hi Susan, I hope you don't mind me asking; but why are they considering changing your functioning St Jude's with a tissue valve?

 

[pellicle]

Hi Susan, I hope you don't mind me asking; but why are they considering changing your functioning St Jude's with a tissue valve?

I'm just reading between her lines here:

May be getting a new tissue valve also just due to age factor and all the years I have been on warfarin.

and suspecting that its perhaps her decision. It can be that they do or don't need to replace the valve, I'd guess that'd be up to the surgeon.

Perhaps (as she ages) she doesn't want the issues? I know that as my Dad aged that he'd scratch himself on every little thing as his skin became thinner (and like tissue as he'd say). He wasn't on warfarin but if he was I'd say that'd have been more annoying.

 

[Agian]

I just thought there might be some sort of 'accumulative affect', after a number of years of use. Or, that it becomes more problematic as people age.

 

[pellicle]

Hi
well at the risk of side-tracking this topic ...

I just thought there might be some sort of 'accumulative affect', after a number of years of use.

this is a topic which I think of as "being done to death" but we all join the journey somewhere different and at different times

a pretty comprehensive review of the peer reviewed literature out there to date shows mainly "nothing conclusive". The initial pointers of 'danger' in this stemmed from statistically invalid groups (like less than 200 in a small group of nursing homes) and has been criticized for not taking into account the sedentary nature of the group under study. There has been significant effort in trying to find even a biochemical basis for a pathway (for how could it happen?) and even that remains unclear.

So essentially there remains no clear evidence that long term warfarin usage is any more of a threat to health than an inconvenience. Living long enough to need another surgery seems to be the greatest risk in warfarin.

As I understand it car accidents kill and maim far more people per user group.

Or, that it becomes more problematic as people age.

nothing identified there, in fact as people age its more likely that you'll find yourself on some anticoagulant anyway (for DVT for instance) ... my Dad (had his cancer allowed that he lived longer) was shaping up for needing that as he was getting clots in his leg from an old car accident injury.

As far as I have read (and I was a warfarin fearer when I was younger) almost every medical problem with Warfarin can be tracked to being outside the therapeutic range (NB inappropriate INR), this is easily prevented with more frequent home monitoring of INR.

something to read (now only available as archive) here

 

[Agian]

'Warfarin Institute of America'

 

[pellicle]

yeah ... I know ... <shrug>

everything is better in the USA .-)

 

[Agian]

I'm starting up the 'Paracetamol Association of South Australia'

 

[pellicle]

I'm starting up the 'Paracetamol Association of South Australia'

where there is no aspirin cos the parrotseatemall

Should get some sponsorship from Rosella

;-)

 

[Bum Ticker]

Hi Susan!

Hi Susan!

Wow, Steve.... Was thinking of you not that long ago and wondering about you. Sorry to hear of your second surgery but 15 yrs a good while on tissue. We met on line after your original blog as I was awaiting my surgery with a St Jude's. Maybe the old Canadian congenital heart site. Hope you are doing well and I will be reading your new blog. I too am awaiting a second surgery. My valve is fine but I have an aortic root aneurysm close to "explode" stage.... 4.9 on 5.0 scale. May be getting a new tissue valve also just due to age factor and all the years I have been on warfarin. Will know next month if my fate is sooner or later. Prefer to just get it over with so I can retire!! Will be reading your new writings... and absorbing the impact of a second heart surgery! So how is the music! Godspeed, Sue

Yes, I remember you from all those years ago. Great to hear from you. I'm sorry you've got to go through it all again, but in my case I've found that the 2nd time was not as bad of a recovery as it was 15 years ago. It doesn't make sense! As I'm older it should have been more difficult, but it was much easier and quicker. Maybe they've improved on some of the procedures?

Anyhow, I wish you all the best and I would assume that they will replace the valve while they're in there. Even though my aorta was fine this time, they replaced it again as they had a better way of doing it these days and figure they might as well while they had the chance.

Cheers,
Steve in Toronto & NIagara
http://www.stevegoldberger.com

 

[Sunshine susan]

Hi....yes, the main reason for changing out the valve is due to overall issues with any kind of surgery as you get older and warfarin. Reducing dosage is problematic considering blood clots. I have had 2 oral surgeries and my oral surgeon did not want me to change my Coumadin dosage. No problems with excessive bleeding as a result. However, I do believe there is accumulative effect relating to bruising. I have a hard time with the "blood spots". I am not old enough for "old age" effects but even a small thumb print will leave a mark that takes days to go away. I am a professional and mostly wear long sleeves to hide any bumps I get that leave a mark. Have to be careful handling the dog, etc. Any bumps are ugly no matter how small. I would hope a tissue valve would at least keep it from getting worse. I currently dare to not even scratch an itch! Ha! Been on Coumadin since 1999, so go figure.....

 

[Sunshine susan]

Hey Steve! Sooooo good to hear from you! Reading your new blog and will let you know if I have any questions! Peace, Sue

 

[Protimenow]

Susan:

The bruising and 'blood spot' issue that you refer to makes me wonder if your INR is too high. Even if your skin has thinned through the years, I am somewhat surprised that your capillaries would be so fragile that they can be easily broken.

Also -- although they may be opening a chest to fix an aorta, or for some other access to the heart or lungs, it's probably worth remembering that replacing a valve when such a replacement is unnecessary isn't just a matter of popping out the old and replacing it with new. There are issues about the connection between your new valve and the cardiac tissue to which it's being sewn (crazy glued?). There are issues related to healing. There are issues related (I think) to shortening the tissue to which the valve is attached. You may weigh the risks of switching from mechanical to tissue before limiting yourself to 10-15 years between surgery to repair or replace the tissue valve.

Just some thoughts...

 

[Bina]

Hi....yes, the main reason for changing out the valve is due to overall issues with any kind of surgery as you get older and warfarin. Reducing dosage is problematic considering blood clots. I have had 2 oral surgeries and my oral surgeon did not want me to change my Coumadin dosage. No problems with excessive bleeding as a result. However, I do believe there is accumulative effect relating to bruising. I have a hard time with the "blood spots". I am not old enough for "old age" effects but even a small thumb print will leave a mark that takes days to go away. I am a professional and mostly wear long sleeves to hide any bumps I get that leave a mark. Have to be careful handling the dog, etc. Any bumps are ugly no matter how small. I would hope a tissue valve would at least keep it from getting worse. I currently dare to not even scratch an itch! Ha! Been on Coumadin since 1999, so go figure.....

Hello !
Sorry to read about your issues....and would like to share that my late Mom, who was never on Coumadin at all, had the same type of fragile skin. Just like tissue paper.
She had marks everywhere, nobody could hold her, small scratches looked horrible. Mom was not a heart patient, she had kidney failure at age 47. A couple of years on dialysis,
with Heparin shots, then 20 years with a transplanted kidney (taking lots of Prednisone), then a couple more years of dialysis.
I believe her cocktail of medications and low immune system caused the majority of her problems as she aged.

Hope you do well