Hello and thanks

[Gerry Dorrian]

Gisele,
Times certainly have changed and in this case it is decidedly for the better. Still, it does put more of the burden on the patient to gain some understanding of the medicine and science involved in our treatment. This stuff is pretty complicated!

David,
Mr. Moser did fax a very good article to me about bilinx. I also received a brief email from the people at St. Judes answering specific questions. I was also able to find some information at the University of Michigan's site. (I believe that they developed bilinx) I am much more comfortable being part of the clinical study now. I agree with your comments about Dr. Bavaria. He came very highly recommended by people around Philadelphia and also by medical people in other cities. We are in good hands.
I looks like our conditions are very similar and our surgeries will be the same. See you at HUP. We can compare experiences and complain about the food or our lack of appetite.

Gerry

 

[David by Philly]

Coumadin

Coumadin

Hi Al,

I can't remember where I saw it (have read so much already), but I also remember reading there is somewhere between .5%-2% chance of major hemorrhage per year due to coumadin therapy. Added up each year, we get statistics.

BUT statistics were generally meant for research studies and not us lay-people. It's not that we can't understand it, but we don't take in all the factors that in the few minutes we read a peer level article. When we read longevity studies and operative mortality rates (and yes, at one point I began to realize the depth of my research level was giving me almost too much information), that these are STATISTICS. They can't always indicate the skill level of our surgeon, our follow up care, our stress level at work, and 1000 other factors.

For most of us with upcoming valve surgery, we forget at times how lucky we are (especially those who have found this site). We generally have the time to research surgeons, hospitals, techniques, manufacturers, and get the combined experience of all the current members. We can truly make informed decisions.

Our situation is generally not like a patient who has chest pains (or a heart attack) goes to their doctor's affiliated hospital and has bypass surgery the next day. They don't have the time (literally) to go online and ask who is the best surgeon in the local area.

I truly feel lucky. I have been born at a time when valve replacement is routine, SUCCESSFUL, surgery. I found a top notch surgeon. I have fantastic research tools at my disposal to make an informed decision about my life. I have come to the conclusion that I will die one day, but I seriously doubt it will be valve related (in my best case scenario).

My final thoughts are.....gather all the info you feel you need, discuss it here with lots of experienced people, get a list of questions to ask your surgeon, get them all answered to the point you feel comfortable what will be done in both the best and worst case scenarios, and make the best decision for YOU.

 

[Gerry Dorrian]

Al,
Sorry I didn't pick up your posting the other night. I think that we were both on at the same time.
You asked how I calculated the chance while on Coumadin for a bleeding event in my lifetime.
Now it has been awhile since I took statistics but I think that this is accurate.
The chance of a bleeding event serious enough to require a trip to the hospital in a given year is widely quoted as about 2%. Conversely the chance of not having such an event is 98%. The chance of not having an event in 30 years would be .98 raised to the 30th power. This works out to be .5454 or 55%. So there is actually a 45% chance that you will have at least one bleeding event over a 30 year period. I said 40% in my post but should have said 45%.
The margin of error in this calculation is probably very high. I was just using it as a rough measure and would not encourage anyone to quote this. I have no particular experience with statistics.

I didn't discuss bovine valves with the surgeon who will perform my surgery. I chose the surgeon first and he generally uses the porcine valve. I prefer that the surgeon use the valve with which he has the most experience. I am also getting the aortic root replaced. This is part of the surgeons specialty and may influence his preference.

Gerry

 

[David by Philly]

Valve type

Valve type

Hi Gerry,

I completely agree with you. Go with the valve type the surgeon is most experienced with. We waon't him to do as perfect a job as possible. If I really wanted to use a valve the surgeon is uncomfortable with, I would choose a diff surgeon. Remember, you can make all the requests you want but once you heart is minus a valve, it's going to be the surgeon's final decsion as to what to put inside you.

 

[Ross]

Haha, I'm not the only SpongeBob freak here! Yippee.
*Heads off to the Crusty Crab for food*

 

[ALCapshaw2]

"The chance of a bleeding event serious enough to require a trip to the hospital in a given year is widely quoted as about 2%. Conversely the chance of not having such an event is 98%. The chance of not having an event in 30 years would be .98 raised to the 30th power. This works out to be .5454 or 55%. So there is actually a 45% chance that you will have at least one bleeding event over a 30 year period. " - Gerry

Thanks for the reply and information Gerry. I understand that rationale and your calculation looks correct to me. There have been some German studies on maintaining lower INR (closer to 2.5 than 3.5) that suggest that bleeding events are greatly reduced with no *apparent* risk of stroke. I believe I saw the report on the St. Jude Website.

The reason I asked about the Bovine vs. Porcine valve is that 'standard' pig valves tend to wear out fairly rapidly (8 to 10 years) vs. 15 to 20 for the Bovine Pericardial. It might be worthwhile to ask your surgeon about the durability of the Stentless Porcine Valves. Please let us know!

'AL'

 

[ALCapshaw2]

Oops, I forgot to add that the Bovine Pericardial Valve appears to be the 'prefered valve of choice' at the Cleveland Clinic (#1 rated Heart Hospital) in case you want to look into that option.

'AL'

 

[David by Philly]

Oink vs Moo

Oink vs Moo

Al,

The stentless porcine valves are now projected at 15-20 years, with near perfect hemodynamics. Also an advantage is the full root design of the freestyle and toronto (now under clinical trials) if you need and aortic root work.

 

[ALCapshaw2]

Thanks for the update on Stentless Porcine Valves David.
That's good information. Best wishes for your surgery and recovery.

'AL'