Thanks Steve. I'm hoping it doesn't come to that but I'm worried about increasing size in LV that is seemingly unrelated to my valve/root issues. I'd rather deal with side effects, but it's kinda early to say what I'll get or if I'll get anything. The cardio mentioned a few types of meds so maybe I can find one that works with no side effects. I'm also taking coq10 60mg a day..
Bad day at the dr.
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Agian
Well-known member
How can it be unrelated to your valve? (Serious question)
Hi Agian, well he said cause my valve isn't leaking bad (report says trivial regurg with wider jet). Last year I asked the tech if it was leaking she said not really. This year I asked again(same tech) and she said it's leaking a little cause the leafs aren't seating. Maybe due to the dilated root I Duno but it's not calcified. Anyway so doc said because it's still working fine he thinks it's genetic and he used the word cardiomyopathy which scared the sh#t out of me. Then he goes on to talk about recent stem cell therapy and maybe they would give me meds.
But I also read articles that suggest those with dilated roots are more prone larger LV and preventative therapy is recommended. I would have expected him to say or know that.
That's why I'm worried that it may be another issue to deal with if my valve is not affecting it(according to my cardio)
But I also read articles that suggest those with dilated roots are more prone larger LV and preventative therapy is recommended. I would have expected him to say or know that.
That's why I'm worried that it may be another issue to deal with if my valve is not affecting it(according to my cardio)
Agian
Well-known member
I've been on BP and cholesterol-lowering tablets, for years; even before I knew about my bicuspid. However more recently, the cardiologist has been aggresively trying to keep my heart-rate and BP low. Losartan was suggested by myself, given that it might help with aneurysms. She put me on Atenolol because I have a naturally high heart-rate. Prior to the bicuspid saga, I was on Accuretic and Lipitor. Now I'm on Crestor (apparently it's better for cholesterol control), Atenolol and Losartan. I'm also taking low-dose Aspirin and Plavix, because it was thought I got a clot in one of my retinal arteries. This dissolved quickly, but they're treating it like a TIA. I saw a neuro-ophthalmologist about three hours ago, who thinks this was due to my PFO (small hole between the upper two heart chambers). I'm looking into having this 'plugged' via a tube they insert through your groin. They call this 'interventional cardiology'. When I see him, I intend to grill this guy on any new developments in the TAVI arena. When TAVI becomes the new 'normal', there will probably be a bun-fight between the interventional dudes and the surgeons, over who's going to be running the rock show. FWIW, I think this is only a matter of time. The million dollar question is 'When?'
Thanks Agian, my cardio mentioned tavi also but I don't think that would work if I need the root replaced. Do you or anyone else think losartan could help keep my root and LV size under control? Any thoughts on my cardios response to the LV size?
Agian:
Cholesterol, HBP, High Rest Heart Rate, Anxiety.
May i suggest RUNNING? :thumbup::thumbup:
Tdot - With all of your concerns and uncertainties, do you think a second opinion from another cardio would be in order? I think that's what I would do right now.
Hi Steve
I'm going to go talk to an actual surgeon who also has a strong research background dr. Verma at st mikes in Toronto. I don't have an appointment yet. I'm struggling with it so just wondering if anyone had similar experiences. If it takes a while for me to see him then I just may go see another cardio.
I'm going to go talk to an actual surgeon who also has a strong research background dr. Verma at st mikes in Toronto. I don't have an appointment yet. I'm struggling with it so just wondering if anyone had similar experiences. If it takes a while for me to see him then I just may go see another cardio.
Agian
Well-known member
Midpack, I was running regularly until June. Then for obvious reasons I've been distracted and have let it go. When my head clears I might get back into it.
Tdot, TAVI is not an option available to us at this point in time. I doubt that either of us will escape the Full Monty. The aortic root is part of the aorta, so I guess Losartan might help. But I have absolutely no idea. I understand your anxiety, truly I do. The solution to your issues may be surgery, sooner rather than later. As stated above, I would see another cardiologist and be open about what's making you anxious. I would start looking for an appointment now. Tell the secretaries to call you if there's a cancellation, in the meantime.
Tdot, TAVI is not an option available to us at this point in time. I doubt that either of us will escape the Full Monty. The aortic root is part of the aorta, so I guess Losartan might help. But I have absolutely no idea. I understand your anxiety, truly I do. The solution to your issues may be surgery, sooner rather than later. As stated above, I would see another cardiologist and be open about what's making you anxious. I would start looking for an appointment now. Tell the secretaries to call you if there's a cancellation, in the meantime.
It may also be worthwhile to remind folks that "the full monty" is not a death sentence by any stretch of the imagination. The full median sternotomy has been the "gold standard" procedure for valve surgeries with multiple objectives (e.g. valve and root replacement, valve and bypass, etc.) for many years, and most patients find that recovery is very manageable. Yes, it takes weeks to feel decent again, but unless something goes very wrong, even those of us who careen around hitting all the speed bumps recover and find life once again to be full and rewarding.
When I spoke with Dr. McCarthy before my surgery, I asked him whether I would be a candidate for minimally invasive surgery, or if not, at least a partial sternotomy. His response, paraphrased, was something like "Trust me - the recovery is about the same for full versus partial sternotomy. This way I will have the best access to your heart and arteries, so I will have the best opportunity to fix whatever we find once we get in there."
When I spoke with Dr. McCarthy before my surgery, I asked him whether I would be a candidate for minimally invasive surgery, or if not, at least a partial sternotomy. His response, paraphrased, was something like "Trust me - the recovery is about the same for full versus partial sternotomy. This way I will have the best access to your heart and arteries, so I will have the best opportunity to fix whatever we find once we get in there."
Thanks fellas. Have been doing some more research and preping questions. My anxiety has been improving throughout the week. A few encouraging things I read: 1 losartan was found to slow root dilation in those with marfans so I will definitely ask for it. 2 LV size could be from hypertrophic cardiomyopathy which could be also genetic but it's sounds very manageable as also seen from many posts on this forum.
So either way I'm not doomed as Steve points out even in the worst case scenario.
So either way I'm not doomed as Steve points out even in the worst case scenario.
Steve,
I had a similar experience. I asked my surgeon about mini sternotomy and he said he could do it if that's what I wanted. Since I was having valve replacement and an aortic graft placed, I said "I want you to have as much room as you need to do the best job possible. You decide". He opted for full sternotomy and it turned out fine.
I had a similar experience. I asked my surgeon about mini sternotomy and he said he could do it if that's what I wanted. Since I was having valve replacement and an aortic graft placed, I said "I want you to have as much room as you need to do the best job possible. You decide". He opted for full sternotomy and it turned out fine.
Michellemar
Well-known member
Tdot...keep the questions coming. I'm curious... My Cardio diagnosed me with PTSD in my HEART MUSCLE because i'd been radiated (mantle treatment for Hodgkins)in my very early 20's. He said they didn't know then it traumatized the heart (I was in the Kaplan Institute experimental program, drew (thank you God) the radiation only straw (literally) and took only the mantle treatment because it had been a 1A one node(neck) and walked out with a "no" to the bottom radiation cause I'd been told it was not part of the plan. They weren't the happiest but saved me a bunch of trouble). What i mean to say is: the Cardio gave me clonazepam and my pulse-at 87 for 40 years...dropped to 72. Works!!!!!
Thanks for sharing michellemar. I wonder if they would try any meds in my case. My BP iand hr are normal unless I get anxious of course. I'd like to give it a shot if it would delay surgery. I don't know if anyone has had that happen?
I'll be speaking with a dr about it shortly.
Had a tough talk with my wife yesterday, she was upset about this for the first time and she is usually reassuring me. She is concerned about my mental state as well. I was telling her that we should just prepare mentally for me having a surgery so that we are prepared for it. Maybe I'm jumping the gun I Duno but it's going to be a reality someday. I tried to reassure her that I'll be ok and I mentioned all you folks on this forum and what a help it is.
I'll be speaking with a dr about it shortly.
Had a tough talk with my wife yesterday, she was upset about this for the first time and she is usually reassuring me. She is concerned about my mental state as well. I was telling her that we should just prepare mentally for me having a surgery so that we are prepared for it. Maybe I'm jumping the gun I Duno but it's going to be a reality someday. I tried to reassure her that I'll be ok and I mentioned all you folks on this forum and what a help it is.
Bad day at the dr.
Tdot, why do you think that surgery will be soon? As i understand your case, AND OF COURSE I AM NOT A CARDIOLOGIST, you still have some time ahead before surgery. Probably years.
The main thing is to control your anxiety.
Tdot, why do you think that surgery will be soon? As i understand your case, AND OF COURSE I AM NOT A CARDIOLOGIST, you still have some time ahead before surgery. Probably years.
The main thing is to control your anxiety.
T in YVR
Well-known member
I think Midpack is right. It's good to do research, explore options, learn what might be needed and when, etc. But then you may want to mostly focus on managing your anxiety and take a step back and reassess the situation once you get all the facts and any other 2nd opinions etc. The reality of this is that your LV is barely outside the norm and you have minimal regurg. I'm certainly no Dr either, but you might have a lot of time.
Hey guys
I think surgery will be soon because I'm losing my mind. My doc even said we can try treatment for now I.e no surgery just yet. My real issue is that things have been pretty stable since I first found out about this. Monday was my first appointment where I know definitely things changed and so my mind is jumping to surgery because to me this appointment confirmed I was telling her that we should just prepare mentally for me having a surgery so that we are Ill need it sooner than I thought. The immediate reality is likely keep monitoring things and it might stabilize again who knows.
Life could be a lot worse. I'm going to try to relive some stress and play Grand theft auto then have a nice date night with the wife. And thanks for the encouragement guys. Tony I understand you are recently post op I hope recovery is going well for you.
I think surgery will be soon because I'm losing my mind. My doc even said we can try treatment for now I.e no surgery just yet. My real issue is that things have been pretty stable since I first found out about this. Monday was my first appointment where I know definitely things changed and so my mind is jumping to surgery because to me this appointment confirmed I was telling her that we should just prepare mentally for me having a surgery so that we are Ill need it sooner than I thought. The immediate reality is likely keep monitoring things and it might stabilize again who knows.
Life could be a lot worse. I'm going to try to relive some stress and play Grand theft auto then have a nice date night with the wife. And thanks for the encouragement guys. Tony I understand you are recently post op I hope recovery is going well for you.
Hey guys
Sorry some error on my last post...it should have read:
I think surgery will be soon because I'm losing my mind. My doc even said we can try treatment for now I.e no surgery just yet. My real issue is that things have been pretty stable since I first found out about this. Monday was my first appointment where I know definitely things changed and so my mind is jumping to surgery because to me this appointment confirmed I Ill need it sooner than I thought. The immediate reality is likely keep monitoring things and it might stabilize again who knows.
Life could be a lot worse. I'm going to try to relive some stress and play Grand theft auto then have a nice date night with the wife. And thanks for the encouragement guys. Tony I understand you are recently post op I hope recovery is going well for you.
Sorry some error on my last post...it should have read:
I think surgery will be soon because I'm losing my mind. My doc even said we can try treatment for now I.e no surgery just yet. My real issue is that things have been pretty stable since I first found out about this. Monday was my first appointment where I know definitely things changed and so my mind is jumping to surgery because to me this appointment confirmed I Ill need it sooner than I thought. The immediate reality is likely keep monitoring things and it might stabilize again who knows.
Life could be a lot worse. I'm going to try to relive some stress and play Grand theft auto then have a nice date night with the wife. And thanks for the encouragement guys. Tony I understand you are recently post op I hope recovery is going well for you.
Carol
Well-known member
I have had my aneurysm disappear.I have been on losartan,100 mg for 2 years.Search this site for losartan and you will find out about it.Good luck with this.
