Superman
Well-known member
What a fun thread! Love a good debate.
JulienDu,
First off - welcome to the waiting room. I read most of the posts in the thread before responding.
Regarding your specific situation - I would likely be seeking a second opinion (and maybe 3rd). A couple of reasons for that. One of which is that you state you have a fairly normal functioning valve right now. Of all the options - keeping your native valve is probably the best one if the other component (aneurysm) of your situation didn't exist. By "definition", your aneurysm isn't technically in the operational window yet. Did I read correctly that you haven't had an echo or other test in some time? Have you had a CT scan or MRI to verify the measurement (might have missed that)?
Without regular checkups - it's unfortunate that you don't really have a baseline to measure your rate of change on the aneurysm. My surgeon indicated that he was following patients for years in the 4 - 5 cm range with little to no change. That being said - mine went from 2.6 cm to 3.2 cm to 4.9 cm in three successive annual appointments. I didn't want to wait 6 months to a year for a follow up to see where it would end up. Knowing a baseline would be helpful for this. Tough spot to be in. I don't envy you. Dissecting in the high 4's is not unheard of.
I have had two OHS's. Went mechanical both times. I don't regret that choice - but regret is often outcome driven. Mechanical did not prevent re-op because of my aneurysm. But it did get me from my late teens to my late 30's. I stuck with mechanical (one piece St. Jude conduit graft) for my second go round. I've been on warfarin for over 25 years now. It has had an impact on my life as it is something that needs to be managed and planned around.
Things impacted:
- Discovered cranberry juice just doesn't work for me (drives INR way up), and others have said grapefruit juice. Had an INR over 8 and detected this due to blood in urine. This was before home management and weekly testing. Likely would be picked up much earlier today. Other then that - dietary consistency is a good thing, but not a life or death thing. As long as you're testing regularly, dietary impacts can be managed through dosing easily enough.
- Invasive procedures require some planning around INR, and many Dr's are more afraid of warfarin than we are. I had my gallbladder removed and had to talk to quite a few Dr's to get to what I felt was appropriate warfarin management given the nature of the procedure. Not everyone is as well informed as the posters on here, and may not know when to push back. It wasn't even that what they were doing was "wrong" per se. It's just that I was being stubborn and refused to sign to accept frozen plasma as part of the procedure. If it's life or death, fine - but I don't want it if it can be avoided. I know they test for blood born illnesses, but they can only test for what they know about. I don't want to be the patient that has a new blood born illness named after me because I accepted a bad batch that I didn't need.
- Finally, I had a 5th child because of warfarin. Pretty expensive side effect, but well worth it so far (4 years on). My INR did not get down to a range that the Dr (or I in this case) was comfortable performing the procedure - so we rescheduled a couple months down the road. Oops.
Other then those - it's been take med / test regularly / rinse / repeat. I've only home monitored for the past three or four years. Prior to, having a convenient lab around was fairly important.
My concern in your position would be access to a pharmacy if you have dosing volatility. You can only split pills so many ways, and while I like to dose weekly vs. daily - I'm not a fan of big adjustments to daily doses (2.5 and 5's alternating vs 4 mg daily for example). Pellicle appears to plan for longer periods with limited pharmacy access - so I'm sure it can be done.
I'll steer clear of the Ross debate.
Good luck in your decision. Typically we say at this point that regardless of what you choose - it is better than what you have now. But I'm not certain of that in your case.
Regards,
Superman
JulienDu,
First off - welcome to the waiting room. I read most of the posts in the thread before responding.
Regarding your specific situation - I would likely be seeking a second opinion (and maybe 3rd). A couple of reasons for that. One of which is that you state you have a fairly normal functioning valve right now. Of all the options - keeping your native valve is probably the best one if the other component (aneurysm) of your situation didn't exist. By "definition", your aneurysm isn't technically in the operational window yet. Did I read correctly that you haven't had an echo or other test in some time? Have you had a CT scan or MRI to verify the measurement (might have missed that)?
Without regular checkups - it's unfortunate that you don't really have a baseline to measure your rate of change on the aneurysm. My surgeon indicated that he was following patients for years in the 4 - 5 cm range with little to no change. That being said - mine went from 2.6 cm to 3.2 cm to 4.9 cm in three successive annual appointments. I didn't want to wait 6 months to a year for a follow up to see where it would end up. Knowing a baseline would be helpful for this. Tough spot to be in. I don't envy you. Dissecting in the high 4's is not unheard of.
I have had two OHS's. Went mechanical both times. I don't regret that choice - but regret is often outcome driven. Mechanical did not prevent re-op because of my aneurysm. But it did get me from my late teens to my late 30's. I stuck with mechanical (one piece St. Jude conduit graft) for my second go round. I've been on warfarin for over 25 years now. It has had an impact on my life as it is something that needs to be managed and planned around.
Things impacted:
- Discovered cranberry juice just doesn't work for me (drives INR way up), and others have said grapefruit juice. Had an INR over 8 and detected this due to blood in urine. This was before home management and weekly testing. Likely would be picked up much earlier today. Other then that - dietary consistency is a good thing, but not a life or death thing. As long as you're testing regularly, dietary impacts can be managed through dosing easily enough.
- Invasive procedures require some planning around INR, and many Dr's are more afraid of warfarin than we are. I had my gallbladder removed and had to talk to quite a few Dr's to get to what I felt was appropriate warfarin management given the nature of the procedure. Not everyone is as well informed as the posters on here, and may not know when to push back. It wasn't even that what they were doing was "wrong" per se. It's just that I was being stubborn and refused to sign to accept frozen plasma as part of the procedure. If it's life or death, fine - but I don't want it if it can be avoided. I know they test for blood born illnesses, but they can only test for what they know about. I don't want to be the patient that has a new blood born illness named after me because I accepted a bad batch that I didn't need.
- Finally, I had a 5th child because of warfarin. Pretty expensive side effect, but well worth it so far (4 years on). My INR did not get down to a range that the Dr (or I in this case) was comfortable performing the procedure - so we rescheduled a couple months down the road. Oops.
Other then those - it's been take med / test regularly / rinse / repeat. I've only home monitored for the past three or four years. Prior to, having a convenient lab around was fairly important.
My concern in your position would be access to a pharmacy if you have dosing volatility. You can only split pills so many ways, and while I like to dose weekly vs. daily - I'm not a fan of big adjustments to daily doses (2.5 and 5's alternating vs 4 mg daily for example). Pellicle appears to plan for longer periods with limited pharmacy access - so I'm sure it can be done.
I'll steer clear of the Ross debate.
Good luck in your decision. Typically we say at this point that regardless of what you choose - it is better than what you have now. But I'm not certain of that in your case.
Regards,
Superman