pellicle
Professional Dingbat, Guru and Merkintologist
DebbyA;n876295 said:
Hi
Feeble as it is to simply send some electrons I hope you gather your strength again.
I know it takes time. But it will come to you.
Best Wishes
Back in waiting room again
- Thread starter Paleowoman
- Start date
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Hi
Feeble as it is to simply send some electrons I hope you gather your strength again.
I know it takes time. But it will come to you.
Best Wishes
Hi Debby - many thanks for chiming in here. After reading this I checked back on your posts that your wrote previously about your redo and how it was easier for you, but not for the surgeon ! Hope you feel better soon from your recent other surgeries.DebbyA;n876295 said:
Paleowoman (Anne) I wish to add my thoughts and prayers for you. You are such an inspiration and a very vital part of this forum. I can see by your posts, and this one is about you, that you have such care and concerns for everyone here.
You are a special person and give with all your heart(no pun intended) I wish you luck and some really great karma as well.
You are a special person and give with all your heart(no pun intended) I wish you luck and some really great karma as well.
ashadds
Well-known member
paleowoman , your one of the people I look up to in this forum for advice and I wish you could hear better news....Can you wait before performing a re-do ? Your gradients are still moderate .... They are not severe and you are not symptomatic...Have you considered a aortic homograft or ross procedure ?
Thank you jwinter and ashadds - it's this group which is so wonderful and I'm so pleased to be a member of this community.
I will wait for the redo as long as it is safe to do so. The pressure graident has acclerated extremely fast over the past six months, and if it just carried on like that I would be in critical stenosis by November which is another six months away. I will be asking for referral to a surgeon, or two, and get their opinion on the timing for surgery. I plan/hope to get at least two referrals - I won't go with the first one unless the surgeon fills me with confidence in his judgement. Becasue of various issues last time (with both surgeon and hospital) I have lost trust in medics (not all but certanly in connection with my heart) and will tell them so and why, so they understand where I'm coming from.
ashadds - being aymptomatic means nothing to me as I was that befroe the last surgery yet was told, maybe wrongly, that my heart could just stop if I left things just a couple of months longer. Not sure they could do either of those procedures you mention, I suspect not. I've spoken to a cardiac surgeon at the Society of Cardiothoracic Surgery and he says I will have to have root enlargement - that's how they put in a larger valve appropriate for my body size, as although I am thin I am not short or petite,. Root enlargement and a bigger valve should have been done first time and I've no idea why it wasn't. It would appear that there are quite a few people who get given 19mm valves who end up with patient prosthesis mismatch - I don't have figures, this is just anecdotal from what I am reading.
I will wait for the redo as long as it is safe to do so. The pressure graident has acclerated extremely fast over the past six months, and if it just carried on like that I would be in critical stenosis by November which is another six months away. I will be asking for referral to a surgeon, or two, and get their opinion on the timing for surgery. I plan/hope to get at least two referrals - I won't go with the first one unless the surgeon fills me with confidence in his judgement. Becasue of various issues last time (with both surgeon and hospital) I have lost trust in medics (not all but certanly in connection with my heart) and will tell them so and why, so they understand where I'm coming from.
ashadds - being aymptomatic means nothing to me as I was that befroe the last surgery yet was told, maybe wrongly, that my heart could just stop if I left things just a couple of months longer. Not sure they could do either of those procedures you mention, I suspect not. I've spoken to a cardiac surgeon at the Society of Cardiothoracic Surgery and he says I will have to have root enlargement - that's how they put in a larger valve appropriate for my body size, as although I am thin I am not short or petite,. Root enlargement and a bigger valve should have been done first time and I've no idea why it wasn't. It would appear that there are quite a few people who get given 19mm valves who end up with patient prosthesis mismatch - I don't have figures, this is just anecdotal from what I am reading.
Hi Anne, sorry to hear those news.
Yes, some numbers are worsening. But you are active, you feel fine, you have no symptoms. IMO, you have plenty of time ahead to plan, with your doctors, what to do. Dont let anxiety dominate yourself and ask for a second OHS before it is really needed.
Take care.
Yes, some numbers are worsening. But you are active, you feel fine, you have no symptoms. IMO, you have plenty of time ahead to plan, with your doctors, what to do. Dont let anxiety dominate yourself and ask for a second OHS before it is really needed.
Take care.
Hi Anne, sorry to read your news. Were you offered a reason at the time of surgery why such a small sized valve was implanted? Mine is a 21and it is considered small but nothing like a 19.
Nobody spoke to me about it. First I knew was when I got a little card to keep on me about the valve. I also received the Operation Note after discharge and read "The valve ring was sized and a 19mm Magna Ease Perimount Valve inserted...." etc I'm thin but I'm not small or petite. That's disconcerting to read that the 21mm is considered small too ! I suspect there's a limit as to how big a root enlargement can be made ?Duffey;n876320 said:
I don't know about the root enlargement sizing, but I would want an answer to why they placed a 19 in the first place. Keep us informed if you don't mind, and know that you have my best wishes going forward.
I haven't had any root enlargement (yet !), the surgeon would have simply "sized" the valve ring after the leaflets were excised. There's an instrument for "sizing" that Edwards Lifescience produce, here, look under accesories: http://www.edwards.com/devices/heart...ic-pericardial Presumably, though I don't know for sure, they take out the old valve leaflets and then measure the space using the "sizer" and then that gives them the size of the valve that would fit. Trouble is that the replacement valve is slightly smaller than the native valve so the 19mm valve is inhernetly stenotic. That wouldn't matter in an old person who is sitting aorund, if you get my meaning. Imho the surgeon should have taken care to take into account my age and level of activity, and made the aortic root larger so that a bigger valve could be inserted. That's my layman's (laywoman's) understanding. I see my cardiologist tomorrow afternoon - will let you know the outcome.Duffey;n876324 said:
Agian
Well-known member
Was it an understandable mistake, or did she really mess up?
i remember you telling us she was rude and dismissive.
i remember you telling us she was rude and dismissive.
Fundy
Well-known member
Paleowoman, earlier this year my initial echo report came back as severe stenosis just after five years of replacement, following a great report the year before. However, the test was at a different hospital than where my cardiologist is and she was on maternity leave. A fill-in cardiologist looked at the test and mentioned she wasn't sure how the calculations were done for the initial report, but she did see degraded performance but only into the moderate stenosis range and didn't think it was close to severe.
So she felt it would be best to get a better look with a TEE in a months time followed by meeting with my regular cardiologist who would be back then. That meeting started with her saying the valve is functioning just like new. She felt that whoever did the initial report used too narrow of time frames, however there was increased velocity happening then, but not as a result of a narrowed opening, but the beats were quick and forceful and back to normal beats during the TEE.
She mentioned it could indicate anemia or thyroid problems as a cause and sent me for bloodwork. But the valve itself was still great.
Just thought I'd share an its not always the valve's fault story with you. You may have hope of many more years before a redo.
So she felt it would be best to get a better look with a TEE in a months time followed by meeting with my regular cardiologist who would be back then. That meeting started with her saying the valve is functioning just like new. She felt that whoever did the initial report used too narrow of time frames, however there was increased velocity happening then, but not as a result of a narrowed opening, but the beats were quick and forceful and back to normal beats during the TEE.
She mentioned it could indicate anemia or thyroid problems as a cause and sent me for bloodwork. But the valve itself was still great.
Just thought I'd share an its not always the valve's fault story with you. You may have hope of many more years before a redo.
Just got back from cardiologist. He is referring me to a cardiac surgeon, Neil Moat, at the Royal Brompton Hospital, London, who he said was the top man at the Brompton for valves. He reckons the surgeon will first want me to have a transoesophageal echo or 3D echocardiography, and MRI and/or CT scan to look better at the valve and at my aortic root to see everything and work out best time for surgery. My cardiologist said he had never had a replacement valve fail so quickly as mine.
Hi Aglan - I've no idea if the surgeon made a genuine mistake or really messed up - I think we may find out more when I have the valve replaced, or maybe even before t if the new surgeon can tell from his investigations prior to surgery. Certainly the other surgeon was rude and dismissive, but I was assured that she was good at “cutting and sewing”. Apparently the surgeon I will be seeing in a couple of weeks or so is more “caring”.
Hi Funday - that was great your echo not being accurate ! I wish it were true for me. The echos I’ve had have been on the same machine and have all been done by a cardiologist (not an echo technician) who is a national and international expert in echocardiography, so there’s very little reason to doubt his findings. Also my trend has been going up since shortly after surgery, upward trend every time, plus I developed left ventricular hypertrophy six weeks post surgery which is not a normal thing to happen. Today when my cardiologist listened to the valve he could clearly hear the murmur indicating it was narrowed. It would certainly be interesting if there was something wrong with the valve which was nothing to do with its size though ! Not anaemia or thyroid problems though as those are tested every six months as part of my routine blood tests due to having diabetes. I hope you do get very many more years out of your valve !
Hi Aglan - I've no idea if the surgeon made a genuine mistake or really messed up - I think we may find out more when I have the valve replaced, or maybe even before t if the new surgeon can tell from his investigations prior to surgery. Certainly the other surgeon was rude and dismissive, but I was assured that she was good at “cutting and sewing”. Apparently the surgeon I will be seeing in a couple of weeks or so is more “caring”.
Hi Funday - that was great your echo not being accurate ! I wish it were true for me. The echos I’ve had have been on the same machine and have all been done by a cardiologist (not an echo technician) who is a national and international expert in echocardiography, so there’s very little reason to doubt his findings. Also my trend has been going up since shortly after surgery, upward trend every time, plus I developed left ventricular hypertrophy six weeks post surgery which is not a normal thing to happen. Today when my cardiologist listened to the valve he could clearly hear the murmur indicating it was narrowed. It would certainly be interesting if there was something wrong with the valve which was nothing to do with its size though ! Not anaemia or thyroid problems though as those are tested every six months as part of my routine blood tests due to having diabetes. I hope you do get very many more years out of your valve !
Bonbet
Well-known member
Paleywoman: wow your LVT seems to have developed rapidly. I am so sorry to hear that you are facing another surgery. You have been such a bastion of info and more importantly caring counsel on this site, especially for me. I hope this surgeon does an awesome job, and you are back to your awesome self in no time! Bonbet
Thanks Bonbet ! On my way home from the cardiologist I stopped by my favourite clothes shop and bought some loose fitting, trendy and very pretty pj's which have a button through top, looks more like beautiful leisurewear. And I found two jogging trousers which are perfect for post surgery, with some great button through tee shirts.I made sure the sizes would fit for when I put on some fluid weight immediately post surgery, but they look great regardless and I know I will start wearing them now too ! Whenever surgery is I know that I have one box, the clothing one, ticked already now !Bonbet;n876359 said:
Perhaps the fellas here are scratching their heads now at me talking about clothing at this moment in the equation LOL
Paleowoman;n876362 said:
Paleowoman,
I see you have your priorities straight! wink...wink...I can relate to the shopping beforehand.
On another note, I am relieved that you have found another, well reputed surgeon who actually has a personality and cares. As much as this situation sucks and is not right, hopefully, this time around this surgeon will get it right so that you can get back on the recovery path sooner than later. I am also glad he is being thorough and recommending a TEE and MRI/CT scan to confirm everything. I found Funday's story very interesting.
Anyhow, know that we are here for you and will be cheering you on every step of the way.
By the way, I have an appointment with my cardiologist in 3 weeks to see what my echo looks like. As you know, my pressure gradients have been gradually increasing too the past few years.
Paleowoman,
Just seeing my echo results and thought I would share with you as both of us have been watching our gradients progress for awhile. My current peak gradient is now up to 51 and mean gradient at 27. The report says this is abnormal for the bioprosthetic valve, but it is being classified as mild plus aortic insufficiency. I see my cardiologist in a week and will keep you posted on his thoughts. I know each situation is different but never hurts to "compare" notes.
Thinking of you and hoping you are doing nice things for yourself.
Just seeing my echo results and thought I would share with you as both of us have been watching our gradients progress for awhile. My current peak gradient is now up to 51 and mean gradient at 27. The report says this is abnormal for the bioprosthetic valve, but it is being classified as mild plus aortic insufficiency. I see my cardiologist in a week and will keep you posted on his thoughts. I know each situation is different but never hurts to "compare" notes.
Thinking of you and hoping you are doing nice things for yourself.
Thanks Ottagal - I wonder if this means higher gradients in prosthetic valves have a completely different significance/cause than in native bicuspid valves ? The EOA (effective orifice area) in my valve has reduced in six months, which I know cannot be so accurately calculated in echo, but when my cardilogist listened to my heart he said it sounds "narrowed". I've got mild eft ventricular hypertrophy.
Please do let us know what your cardiologist says and advises. I'm going to contact the cardiac surgeon's secretary today to try and get an estimate of when I will see the man - apparently he was in theatre all day Monday and the rest of this week is away, but all I'd like right now is a date for the appointment so I can stop carrying my mobile phone round like a limpet and get on with other things.
Oh, btw, I contacted Edwards Lifesciences to let them know the rising pressure gradients, and their cardiologist, who has spoken to me before when I asked about the rising gradients last year and year before (telephoned me !), got back to me and asked me to let him know how things go. Initially I got back an obviously copied and pasted email of reasons for high gradients in prosthetic valves but then he got back to me personally. At least I can't fault Edwards Lifesciences customer services !
Please do let us know what your cardiologist says and advises. I'm going to contact the cardiac surgeon's secretary today to try and get an estimate of when I will see the man - apparently he was in theatre all day Monday and the rest of this week is away, but all I'd like right now is a date for the appointment so I can stop carrying my mobile phone round like a limpet and get on with other things.
Oh, btw, I contacted Edwards Lifesciences to let them know the rising pressure gradients, and their cardiologist, who has spoken to me before when I asked about the rising gradients last year and year before (telephoned me !), got back to me and asked me to let him know how things go. Initially I got back an obviously copied and pasted email of reasons for high gradients in prosthetic valves but then he got back to me personally. At least I can't fault Edwards Lifesciences customer services !
Continuing to follow Anne, and looks like you are taking all the right steps. My valve area was an 83 with mean gradient of 42 right before second surgery.
Oh and btw.....my second surgeon recommended a change of soft cotton t-shirt each day post surgery(usually just wore pj's) but I found I really liked the feel. Treat yourself to a few if you think you would like.
You got this girl!!
Oh and btw.....my second surgeon recommended a change of soft cotton t-shirt each day post surgery(usually just wore pj's) but I found I really liked the feel. Treat yourself to a few if you think you would like.
You got this girl!!
Thanks jwinter ! In the last six months my mean gradient rose from 21 to 32, peak from 46 to 59, and valve area decreased from 1.2 to 1, so if it carried on at that trajectory it would take me to similar to what you had during the next six months to November, but who knows whether it will do that, get less or get more. I reckon that by the time I get some more tests done it will be about a month since that last echo so that may give some idea of the trajectory.
I would obviously like more than six months before next surgery but….I'’ve bought three button through lovely tops and three loose fitting jogging trousers (pants to our US friends), and I’'m not adverse at all to buying more as I have a favourite shop (should mention here that in one particular 'down' moment I thought to myself I've bought all these lovely thngs and I will die in surgery so it's all a waste of money and my dh will have to throw them away - I'm not feeling like that very often I'm glad to say). How lovely that your second surgeon recommended particular clothing - now that is the kind of surgeon I’'d like who thinks of practical things for his/her patient.
I would obviously like more than six months before next surgery but….I'’ve bought three button through lovely tops and three loose fitting jogging trousers (pants to our US friends), and I’'m not adverse at all to buying more as I have a favourite shop
(should mention here that in one particular 'down' moment I thought to myself I've bought all these lovely thngs and I will die in surgery so it's all a waste of money and my dh will have to throw them away - I'm not feeling like that very often I'm glad to say). How lovely that your second surgeon recommended particular clothing - now that is the kind of surgeon I’'d like who thinks of practical things for his/her patient.
