Back in waiting room again

[ottagal]

Thanks Ottagal - I wonder if this means higher gradients in prosthetic valves have a completely different significance/cause than in native bicuspid valves ?

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 !

Wow, that is amazing customer service from Edwards! I really like that you were proactive in contacting them about your situation. I never thought of doing that.
​In comparing notes, MY Cardiologist doesn't measure the EOA of my prosthetic valve as he believes it doesn't have any significance. I wish he would &
have asked this question in the past. My echo doesn't mention any ventricular hypertrophy but it does say there is mild thickening of tbe pericardium. Does you echo mention aortic insufficiency or regurgitation at all? I presume that is what is contributing to my higher pressure gradients. The otner measurement I would like to have is the ejection fraction to see how the heart is functioning. Do you know what yours is? Again this echo doesn't show it.
I hope you reach the surgeon's office today. Nothing worse than being chained down to your phone waiting for a call.
I like jwinters words: You got this girl!

 

[Paleowoman]

Wow, that is amazing customer service from Edwards! I really like that you were proactive in contacting them about your situation. I never thought of doing that.
In comparing notes, MY Cardiologist doesn't measure the EOA of my prosthetic valve as he believes it doesn't have any significance. I wish he would & have asked this question in the past. My echo doesn't mention any ventricular hypertrophy but it does say there is mild thickening of tbe pericardium. Does you echo mention aortic insufficiency or regurgitation at all? I presume that is what is contributing to my higher pressure gradients. The otner measurement I would like to have is the ejection fraction to see how the heart is functioning. Do you know what yours is? Again this echo doesn't show it.!

The report says no paravalvar or transvalvar leak. My ejection fraction is 65%, but then my ejection fraction was better than that when I had surgery before. Normally there are problems estimating the EOA in a prosthetic valve, they can’t' do it with the regular formula used to calculate valve area size in a native or bicuspid valve - this guy who does my recent echos is a cardiologist rather than a technician and, apparently has some expertise in estimating EOA. He has not said in his report if there is any calcification. So I’'m in the dark as to the correct medical reason for all this, but since I developed the LVH at six weeks post surgery when I had none at all before, and since the pressure gradient consistently rose from the start, that would suggest, at least logically to me, that something was amiss with the valve or it was too small to begin with. When I exclaimed to the cardiologist “"it’'s too small, I knew it”" he said “"yes”". He did not write in his report that it is too small though. My own cardiologist suggests that the surgeon will do further tests to find out, and when he listened to my heart he commented that the valve sounds “narrowed”.

I’'ve been in contact with Edwards because the rise in the pressure gradient right from the start made no sense to me and my cardiologist kept saying it was "clinically insignificant" (grrrr - obviously he is not saying that now !). Edwards must have an office in France as their cardiologist who has telephoned calls from there !

 

[Paleowoman]

Got a call from the hospital ealier - the cardiac surgeon who I've been referred to, but haven't seen yet, has arranged for me to have a CT coronary angiogram. I'm having it tomorrow morning - so things moving forward !

 

[Seaton]

Good this has been arranged so quickly.
The best for the procedure tomorrow.

 

[ottagal]

That's great news that things are moving quickly!
Good luck tomorrow! Thinking of you...

 

[Paleowoman]

Well I went to the Royal Brompton for the CT coronary angiogram and found that they had also booked me for an echocardiogram ! So I was there for over two hours. They did the echo after the CT angiogram - I was a bit puzzled about that as I had betablockers for the CT to slow my heart down which I would have thought would affect the echo a bit since my heart would be going a bit slower than it normally does, but they said it would be fine which I don't understand. I also had a nitroglycerin spray under my tongue for the CT which dilates the blood vessels which again I would have thought might affect the echo ? I told the technician who did the echo that I'd only had an echo two weeks ago done by Dr Rajan Sharma who the technician knew 'cos Dr Sharma is known as specialist in echocardiography in the echo world, but techie said they do it different at the Brompton - eh ? The Brompton has the best reputation and everyone seemed very knowledgeable though. Now just waiting for an appointment to come through with the cardiac surgeon which should be next week or the week after.

 

[honeybunny]

The order in which the tests were done sounds odd to me too. I also wonder what the difference is in the echo testings.

Sending positive thoughts as you go forward.

Hugs,
Michele

 

[Paleowoman]

The order in which the tests were done sounds odd to me too. I also wonder what the difference is in the echo testings.

Hi Michele - thanks for your message. I've actually been getting more and more than a little annoyed about this as the hours have passed.

First of all this was the third CT coronary angiogram I have had done over the past few years - last one three years ago prior to AVR. My coronary arteries have always been clear - calcium score zero and no atherosclerosis. Atherosclerosis progresses quite slowly, so unless there is some weird condition which causes very rapid development of atherosclerosis I think that test was a waste and exposed me to unecessary radiation.

And to have a repeat echo done by a mere technician after a leading expert in echocardiography who is also a cardiologist (Dr Sharma) did an echo exactly two weeks previously was a waste too. I know my own cardiologist sent the cardiac surgeon a copy of Dr Sharma's echo disk too. I know too that this technician got a much lower reading for the peak pressure gradient as he asked me what Dr Sharma had said was the peak which was 59 and he said he was getting 45 ! I didn't ask any questions after that as at that point I thought he's not such a good echo technician to get such a very different reading - a difference of 2 or 3 yes, but not a difference of 14. Well either the leading expert in echocardiography is a charlatan or was drunk when he did my echo, or the technician yesterday is not so good - well I know who I would choose as the more reliable.

My guess is that the cardiac surgeon, who I have not yet seen, looked at the referral letter from my cardiologist and decided to do two standard tests before my appointment to see him. He should not have done that as, unless there is such a thing as very rapid onset development of atherscloeriss and unless a leading echocardiographer/cardiologist's expertise is in doubt (just found out Dr Sharna is considered a “national and international expert in complex echocardiography”: https://www.spirehealthcare.com/consultant-profiles/dr-rajan-sharma-c4036953/ ) these tests should not have been done.

I would have thought if anything, I should have had a transoesophageal echocardiogram or 3D echo to have a good look at the valve in detail.

 

[ottagal]

I, too wonder by a TEE wasn't done to verify as well? So frustrating. We all know echos can be erroneous and sounds like this tech wasn't up to par. Sometimes I think they go through the motions without really looking at the patients' specifics. I
Hang in there..

 

[Paleowoman]

I, too wonder by a TEE wasn't done to verify as well? So frustrating. We all know echos can be erroneous and sounds like this tech wasn't up to par. Sometimes I think they go through the motions without really looking at the patients' specifics. I
Hang in there..

I think I may have more than my usual one glass of wine with my dinner tonight !

At first I thought the hospital were just being ultra efficient. I’'d like nothing more than to find out that everything is perfect with the pressure gradient and valve and that it’'s all been a bad mistake, but I can’'t really believe that. Even before the echo two weeks ago which showed the sudden steep pressure gradient rise I was going to ask to see a valve specialist to assess the valve - a surgeon was the last person I wanted to see, at least at this moment in time.

 

[ashadds]

I think I may have more than my usual one glass of wine with my dinner tonight !

At first I thought the hospital were just being ultra efficient. I’'d like nothing more than to find out that everything is perfect with the pressure gradient and valve and that it’'s all been a bad mistake, but I can’'t really believe that. Even before the echo two weeks ago which showed the sudden steep pressure gradient rise I was going to ask to see a valve specialist to assess the valve - a surgeon was the last person I wanted to see, at least at this moment in time.

i think because you are fully asymptomatic , your valve is still opening fine ...I think symptoms alone should drive the need for surgery .

 

[Paleowoman]

i think because you are fully asymptomatic , your valve is still opening fine ...I think symptoms alone should drive the need for surgery .

I was fully asymptomatic when I had my bicuspid aortic valve replaced !

Cardiologist thinks I do have symptoms now because I definitely have less stamina and other things like palpitations.

 

[honeybunny]

I agree that the latest tests seem to have been unnecessary considering the echo done two weeks ago by Dr Shawna. Like you, I wouldn't want to trust the latest results as tempting as it is to do so. I'm so sorry you are going through this. You have enough to deal with re: impending surgery without this nonesense. Can you request a TEE?

 

[Paleowoman]

Can you request a TEE?

I will yes ! My cardiologist thought a TEE, TOE in the UK, would be one of the first things I'd have done. Anyway, I've now got my appointment through to see the cardiac surgeon on 31st May.

 

[Paleowoman]

I just got copies of the CT coronary angiogram and the echocardiogram done last Friday. Normal coronary arteries ! Calcium score 0 ! As I had thought * And the echocardiogram has completely, I mean completely, different results to the one done two weeks ago, and to last year's echos come to look at it. Significantly the report concludes “"difficult scan due to body habitus”" ! Yeah - poor scan then in my books.

Because the surgeon has received the scans and reports my appointment has been brought forward to the day after tomorrow, the 24th, so at least I don’'t sit here fuming about those scans for too long !

*PS - and I have a high fat, moderate protein, very low carb diet !

 

[skeptic49]

Sorry to read all of the not good news, Anne. Wow, 19mm. I asked my surgeon to go large as possible in case I need TAVR later. You are in my thoughts.

Jim

 

[epstns]

Anne - I've just now read of your current "travels" down the path. My cardiac issues have always been smoothly managed, but I have had some of this "chasing my tail" when trying to arrange medical care for another nasty condition. Fortunately for both of us, the issues at hand are not emergencies and can be dealt with, as long as we have patience and are willing to be poked, prodded and cooked until they get it all done.

Have that second glass of wine, but try to make sure it is a wine you enjoy and can appreciate!

 

[Paleowoman]

Have that second glass of wine, but try to make sure it is a wine you enjoy and can appreciate!

Oh yes We have wine we brought back from our last trip to France, only a few bottles left as we'd planned to go there again earlier this month when we'd have got more, but that trip was screwed up by this !

 

[Paleowoman]

I saw the cardiac surgeon this morning. He seemed empathic at the consultation as to what had happened before when I had surgery etc. He immediately said the valve was too small but that he needed to do a TEE (TOE in UK), and under general anaesthetic, to get a better look at the valve and my heart. He needs to know if the valve leaflets are degenerating, plus the size of the annulus (getting disk of pre-surgery echo to check the size of annulus then), plus, if it’'s just a small valve which is not degenerating the effect of that on my heart. He does not want to rush into surgery.

He explained why I had to have an echo at the Royal Brompton only two weeks after the one by Dr Sharma, it wasn’'t that he doubted Dr Sharma but that sometimes depending on activity the gradients can rise temporarily, or lower for example when you’'ve been sitting around and had a load of beta blockers like I’'d had at the CT angio just before, however the size of my valve area is the same on both echos and that is the concern right now.

I will get the TEE/TOE in two or three weeks’' time.

 

[Northernlights]

Dear Paleowoman,
I gave up posting on this forum as I prefer a moderated forum, but I have looked in from time to time and see it is moderated now ( of course there was never any problem with your posts , paleowoman!) and I felt I really had to respond to your post, partly to say how sorry I am about your valve size problems, and also to say what an excellent hospital the Brompton is. It was recommended to us when we were at HUP in Philadelphia as quite a few of HUP's doctors had done extra training there (I don't think American forum members always realise there are world-class hospitals elsewhere!) and my husband was treated there for 10 years and we have very fond memories of it. Sometimes I wasn't happy with their decisions at the time, but I recognised later that they were correct, and I had a lot of respect for their judgement.

I have a small annulus too (21mm - I knew it in advance as I had a TOE), and a BSA of 1.58. As you probably know, patient prosthesis mismatch is figured on the basis of indexed EOA to BSA. I don't know what your BSA is, but I remember you didn't weigh much so to be fair to your previous surgeon you may well have seemed ok for a 19mm valve - you can check as the valve charts and BSA calculators are on the web. However these charts don't take into account desired exercise capacity, and I would imagine that you would need a considerably bigger valve to do your exceptionally heavy weight- lifting - did she know the actual weights you lifted and that it was super slow? I think it's important always to be really specific to cardiologists and surgeons- they do need all the information we can give them. It's curious that your echo technician before surgery asked if you did weightlifting, which is rather a strange question if you didn't have any hypertrophy before surgery, since weightlifting is associated with hypertrophy. Does the echo report give your numbers or just leave it blank? Is it possible that you had some hypertrophy but he thought it was just 'athlete's heart'?


I myself chose a Ross (excoriated I know by some on this forum!) despite the '2-valve problem', as it has the best haemodynamics of any valve ( as well as very good survival and quality of life) and that was what was most important to me - I had hypertrophy from the stenosis, which normalised later after surgery. I also really didn't want to be on warfarin (my husband had been on it for 14 years and I know the risks all too personally!) nor like you did I want to tick, and I wasn't nervous of cardiac surgery. But of course everybody is different in what's most important to them: for many people avoiding further surgery is their absolute priority, and the Ross will always be a niche choice. In fact I would have gone to the Brompton for a Ross if I hadn't had an excellent Ross surgeon in my own hospital, as they are experienced in both Ross and homografts and have a homograft bank. But more relevant to your own situation is that my back-up if my pulmonary valve wasn't suitable for a Ross was a root enlargement and bioprosthetic valve ( perimount magna or trifecta) and my surgeon was confident he could enlarge enough for a 25 mm, so you should be able to have at least a 23mm, which would also mean you could have a future TAVI. Interestingly Toronto hospital, with another outstanding valve department , has a minimum of 23 mm for women and 25 mm for men, unless they are very elderly and sedentary.

I hope the TOE goes well, and gives helpful information.