No, I've been told they won't do trials of warfarin.
Choosing valve for surgery #2
- Thread starter tezza
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So what happens after seeing the hematologist when he/she says it is a possibility?
Thinking of you, Tezza and so glad you got your date. Please keep us posted!
Sending all positive vibes! Hope you can finalize your decision and make peace with it.
Sending all positive vibes! Hope you can finalize your decision and make peace with it.
That's when I have to do some really hard thinking...
Thank you Ottagal, this is something I am really struggling with.
A further update...
I have seen my haematologist, and he has confirmed that despite the presence of thrombocytopenia and my tendency towards bleeding, he doesn't believe that warfarin would be a problem for me. So I am now 7 days away from surgery, and still haven't made a firm decision...
So the facts for me:
I'm 57 years old and this is the 2nd OHS (bovine valve replaced because of bicuspid aortic valve, 11 1/2 years ago). Now severe-critical stenosis.
I have a double co-arctation that is stable, moderate in severity and not of concern at this time.
I am not a candidate for TAVR, due to position of my coronary arteries.
Have a tendency towards bleeding, and thrombocytopenia, but have been given the all-clear for warfarin despite this.
My options as I see it:
Biological - will almost guarantee a third OHS, due to my anatomy. And then 1 or possibly 2 more procedures of some kind to see me through to the end of my days (I plan to live a long life
) Possibly the foldax will be proven by my next round, but that is a gamble. And the risk of each surgery increases and presumably recovery is more difficult each time. My cardiologist is pushing me to choose biological and is very negative about warfarin as the alternative. My surgeon is considering the number of repeats and believes mechanical is more sensible.
Mechanical - most likely my last heart surgery (if nothing else crops up eg, the co-arct begins to deteriorate). Take warfarin and live with the testing and dosing.
I'm not scared of my upcoming surgery, I feel very fatalistic about it...has to be done, I've done it before, and I will just get through it. Although I'm sure I will be very nervous when I am admitted on Sunday. But at the same time, the prospect of having repeated surgeries in my older age does bother me...
So on the surface of it, it would seem that going mechanical makes sense. But for some reason, I just feel uneasy about that too...and am really struggling to reconcile that as well.
I have read some great information from so many about the relative ease of warfarin, and to be honest, I have no concern about my ability to do the monitoring. I will have to work hard at being diligent about taking it, as I have sometimes been lazy with aspirin.
I have also seen and heard from so many who manage to lead very active full lives while on warfarin, which is important to me, as I want to be able to ski, hike and travel to remote places, as we have been doing (retirement is coming up for us, so this is high on the agenda). So I do worry about the risks associated with that, but have been reassured by what I have read on the forum here.
I do have some questions though...and I think these are the things that are holding me back from comfortably embracing the decision for a mechanical valve...
1. Clearly warfarin seems to be easy to manage when younger, but I wonder how it sits when you are aging? What happens when other health concerns arise, the need for other medications? I have read some comments that people wouldn't choose to go mechanical because they helped their aging mother/father manage their warfarin and they wouldn't do that for themselves...what makes it harder as you age? What are the risks as you age? Or complications? I'd love to hear from some who has experience of warfarin in older age. Right now, I have no other health issues, apart from some occasional back/muscular strains, and the thrombocytopenia (which is just considered my 'normal' and not related to anything else sinister - a recent barrage of tests confirmed that), but what happens if my health goes south?
2. As mentioned above, I do have occasional back pain, musculoskeletal pains, which are usually treated with anti-inflammatories, along with physio, exercise, etc. How do others manage warfarin with these type of things, when anti-inflammatories are contraindicated? There are often times when paracetamol just doesn't work for me, and ibuprofen is perfect so I am concerned about that.
3. How have others managed if they have to have surgeries, ie. is the bridging as big a deal as my doctors are telling me it is?
I'm sorry for the long-windedness of this post, but now I'm starting to panic with the decision, given being so close to surgery now. Thank you all for your wisdom and support.
I have seen my haematologist, and he has confirmed that despite the presence of thrombocytopenia and my tendency towards bleeding, he doesn't believe that warfarin would be a problem for me. So I am now 7 days away from surgery, and still haven't made a firm decision...
So the facts for me:
I'm 57 years old and this is the 2nd OHS (bovine valve replaced because of bicuspid aortic valve, 11 1/2 years ago). Now severe-critical stenosis.
I have a double co-arctation that is stable, moderate in severity and not of concern at this time.
I am not a candidate for TAVR, due to position of my coronary arteries.
Have a tendency towards bleeding, and thrombocytopenia, but have been given the all-clear for warfarin despite this.
My options as I see it:
Biological - will almost guarantee a third OHS, due to my anatomy. And then 1 or possibly 2 more procedures of some kind to see me through to the end of my days (I plan to live a long life
) Possibly the foldax will be proven by my next round, but that is a gamble. And the risk of each surgery increases and presumably recovery is more difficult each time. My cardiologist is pushing me to choose biological and is very negative about warfarin as the alternative. My surgeon is considering the number of repeats and believes mechanical is more sensible.Mechanical - most likely my last heart surgery (if nothing else crops up eg, the co-arct begins to deteriorate). Take warfarin and live with the testing and dosing.
I'm not scared of my upcoming surgery, I feel very fatalistic about it...has to be done, I've done it before, and I will just get through it. Although I'm sure I will be very nervous when I am admitted on Sunday. But at the same time, the prospect of having repeated surgeries in my older age does bother me...
So on the surface of it, it would seem that going mechanical makes sense. But for some reason, I just feel uneasy about that too...and am really struggling to reconcile that as well.
I have read some great information from so many about the relative ease of warfarin, and to be honest, I have no concern about my ability to do the monitoring. I will have to work hard at being diligent about taking it, as I have sometimes been lazy with aspirin.
I have also seen and heard from so many who manage to lead very active full lives while on warfarin, which is important to me, as I want to be able to ski, hike and travel to remote places, as we have been doing (retirement is coming up for us, so this is high on the agenda). So I do worry about the risks associated with that, but have been reassured by what I have read on the forum here.
I do have some questions though...and I think these are the things that are holding me back from comfortably embracing the decision for a mechanical valve...
1. Clearly warfarin seems to be easy to manage when younger, but I wonder how it sits when you are aging? What happens when other health concerns arise, the need for other medications? I have read some comments that people wouldn't choose to go mechanical because they helped their aging mother/father manage their warfarin and they wouldn't do that for themselves...what makes it harder as you age? What are the risks as you age? Or complications? I'd love to hear from some who has experience of warfarin in older age. Right now, I have no other health issues, apart from some occasional back/muscular strains, and the thrombocytopenia (which is just considered my 'normal' and not related to anything else sinister - a recent barrage of tests confirmed that), but what happens if my health goes south?
2. As mentioned above, I do have occasional back pain, musculoskeletal pains, which are usually treated with anti-inflammatories, along with physio, exercise, etc. How do others manage warfarin with these type of things, when anti-inflammatories are contraindicated? There are often times when paracetamol just doesn't work for me, and ibuprofen is perfect so I am concerned about that.
3. How have others managed if they have to have surgeries, ie. is the bridging as big a deal as my doctors are telling me it is?
I'm sorry for the long-windedness of this post, but now I'm starting to panic with the decision, given being so close to surgery now. Thank you all for your wisdom and support.
Your questions are not unique and you will find many posts about "living on warfarin" if you do a search. There is no way of knowing what the future holds for each of us.....one thing is for sure, it will be different than what we imagine. I'll take a shot at your three questions and how they have affected me:
1. Living on warfarin..........not a big deal. I have been on the drug longer than most people and have found that the lifelong warfarin "horror" stories have never been that bad. You need only take a little more care in dosing the drug and learning "not to run with scissors". I am sure a few folks do have issues with the drug but most problems are patient non-compliance. If you cannot follow a few guidelines......don't go on warfarin.
2. I have chronic spinal pain and all of the other aches and pains that go with old age. Fortunately, when I have problems "Tylenol" does the job. My hunch is that I have probably taken stronger drugs in the pre-internet age when I never knew of all the "stuff" that might adversely affect me.
3. The few stitches and/or outpatient surgeries or dental work I had never required a warfarin "bridge" but those who have seem to be able to handle "bridging" OK.
On balance......and with the ability to look back......I would make the same choice at middle age that I made at the young age of 31. Frankly, at middle age, 60ish, I'd stay away from procedures that might put me back on an operating table in old age.
1. Living on warfarin..........not a big deal. I have been on the drug longer than most people and have found that the lifelong warfarin "horror" stories have never been that bad. You need only take a little more care in dosing the drug and learning "not to run with scissors". I am sure a few folks do have issues with the drug but most problems are patient non-compliance. If you cannot follow a few guidelines......don't go on warfarin.
2. I have chronic spinal pain and all of the other aches and pains that go with old age. Fortunately, when I have problems "Tylenol" does the job. My hunch is that I have probably taken stronger drugs in the pre-internet age when I never knew of all the "stuff" that might adversely affect me.
3. The few stitches and/or outpatient surgeries or dental work I had never required a warfarin "bridge" but those who have seem to be able to handle "bridging" OK.
On balance......and with the ability to look back......I would make the same choice at middle age that I made at the young age of 31. Frankly, at middle age, 60ish, I'd stay away from procedures that might put me back on an operating table in old age.
pellicle
Professional Dingbat, Guru and Merkintologist
Hey Tezza
yep ... and you're already an old hand
well if you wish to discuss that and perhaps dive into the reasons, by all means. Either here or privately (and by that I mean talking because I can talk longer than I can type).
Best Wishes.
yep ... and you're already an old hand
wisdom right there
well if you wish to discuss that and perhaps dive into the reasons, by all means. Either here or privately (and by that I mean talking because I can talk longer than I can type).
Best Wishes.
pellicle
Professional Dingbat, Guru and Merkintologist
sorry to read that mate ... living a bit of it now ... hope it does not get "chronic" ... perhaps it already is?
Thank you for your answers. I will certainly do the search you suggest. Good to hear that warfarin hasn't been a big deal for you. I see that more and more as I look around here.
Thanks Pellicle, I think I would like to do that...I will message you?
Per #1 managing warfarin is no big deal for me nor for my mom and MiL.
Per #2, i have arthritis and my cardio lets me take OTC NSAIDs such as ibuprofen. I can take no more than the label amount and for no more than 2 months. Other options are cortisone and the "pain clinic". I've taken the cortisone route plus Percocet. My internist and orthopedist say that too much NSAIDs are bad for you even w/o warfarin.
Per #3, I've had prostate surgery, cavities filled and a root canal w/o bridging. For surgery I had to go off warfarin, but with a St. Jude did not bridge.
Per #2, i have arthritis and my cardio lets me take OTC NSAIDs such as ibuprofen. I can take no more than the label amount and for no more than 2 months. Other options are cortisone and the "pain clinic". I've taken the cortisone route plus Percocet. My internist and orthopedist say that too much NSAIDs are bad for you even w/o warfarin.
Per #3, I've had prostate surgery, cavities filled and a root canal w/o bridging. For surgery I had to go off warfarin, but with a St. Jude did not bridge.
