Back in waiting room again

[Paleowoman]

I had my six monthly echo today. Not good. My peak pressure gradient, which had been rising steadily since AVR three years ago, has risen from 42mm/Hg to 59mm/Hg in the past six months, and the mean gradient risen from 21mm/Hg to 32mm/Hg. The cardiologist who did the echo (I get mine done by a cardiologist who is renowned in echocardiography so there’s no reason to doubt him) suggested that I’m looking at a ‘re-do’ in the next year or two. He said the prosthetic valve at 19mm is too small for me. I’m really annoyed about this as it was something I had thought might be happening. I’m seeing my own cardiologist next Tuesday to discuss what to do at this stage. I’m half a mind to find a good cardiac surgeon who is experienced in re-do’s now before I absolutely need it.

 

[Agian]

Sorry to hear, and to think someone else just commented on prosthetic mismatch. Take care.

 

[pellicle]

Anne

I'm very sorry to read this. I hope that you'll be putting your foot down on this issue and no longer simply trusting what the "experts" say. After all its said and done - all any medical expert offers is "an opinion". Clearly they are capable of such gross errors as this too ... So ask around and ask here (even if we aren't medically trained) thirty two heads can be better than one

I don't know what else to say other than (what seems feeble) that I hope it works out for the best.

 

[dornole]

Well that just sucks. I remember you talking about your lack of faith in this valve size choice before.

 

[Paleowoman]

Thanks everyone. When I had surgery before in 2014, I was very much rushed at the end, there wasn’'t the opportunity to get a second opinion, though I did change to a different cardiologist because my previous cardiologist, who had said two years prior to referral that I could see several cardiac surgeons when he referred me and then choose which one but would not do that when the time came, and would only refer me to his ‘pal’. So I changed to my present cardiologist who is actually better. I’'ve now contacted Edwards Lifesciences and the Society of Cardiothoracic Surgery. And I’'ve contacted my endocrinologist for advice too as he was a doctor who visited me every single day I was in the cardiac ward to keep an eye on my diabetes and stuff - he always wants to keep informed of my other conditions as he knows everything affects how a person is - he is not a doctor who only sees a person as a pancreas or heart or bones.

The thing that concerns me and dh most right at this moment is how the pressure gradient will progress right now, does it rise in the same way as the pressure gradient rises with a native valve ? The cardiologist who did the echo today suggested a stress echo might be useful right now, or another six monthly echo to see the progression - but if it rises like it has this past six months it will be way too high in six months I think. I’'m thinking a three monthly echo might be useful, with stress echo and referral to a surgeon so that I have someone lined up.

 

[ottagal]

Hi Anne,
I'm sorry to hear this news and certainly not the news your were hoping to receive. I know you trust this cardiologist with the echo results, but, for ME, I would be pushing to have a TEE to confirm the finding. I just know from personal experience that errors are made (won't get into the details) and this would provide a confirmation for you. This is YOUR life. I, too have been dealing with increased pressure gradients and am waiting to hear the results of my echo in a few weeks. I agree with you that I would be looking to have a 'consult' with a surgeon to get yourself prepared. I know you and have have 'talked' in the past about the small valve sizes and increase of pressure gradients. How are you feeling? Are you noticing any symptoms/ changes? Hang in there....we are here for you.

 

[Paleowoman]

Hi Ottagal - I don't fancy a TEE but certainly that cardiologist would do one - he's the doc who does one on video on the British Heart Foundation's website to explain how they're done. Be nice if a TEE showed the pressure gradient was actually lower ! I haven't got any symptoms, physically feeling fine, apart from now anxious all over again which I know is normal. I realise that if I have a 're-do' within the next year or two and it is a tissue valve then I would need another 're-do' again sometime which would not be good if I was in my late 70's to have a third heart surgery. I'm thinking that I might have to consider mechanical this time, though I know that would not be an easy choice bearing in mind my sound sensitivity and very thin chest wall, and the fact that I have osteoporosis and warfarin can increase the risk of fracture. Lots to think about.

 

[ottagal]

I wouldn't fancy a TEE either, but I understand it is the most accurate of testing so I would be pushing for that. Yes, the decision to go mechanical is a tough one for sure. I empathize with you on that.
Keep us posted.

 

[Seaton]

Really sorry to hear this, Anne.
That seems a significant elevation of gradients in six months.
I hope you get the answers and resolution you want on this soon. Will be following your progress.

Sending support and a bundle of good thoughts your way.

 

[cldlhd]

Sorry to hear the news. Fwiw I agree with your idea of scoping out your preferred surgeon ahead of time.

 

[honeybunny]

Oh, (((((Anne)))))
i am so sorry to hear this. You've been my role model on this journey and I found great comfort in your experience and decision to go with a tissue valve. You are so proactive with your healthcare and I hate that this has happened. I expect I will follow you into the waiting room at some point and will be faced with the same decision re: mechanical to avoid a third surgery. Sending much positive energy your way. I will be following your course of action closely.

Cyber hugs, Michele

 

[harrietW]

Anne
l am so very sorry to read this news !
Xx

 

[Paleowoman]

Thank you everyone for your support - this group is ace. I'm so lucky to have found the group when I first did. I will keep everyone posted.

And Harriet - so nice to see you here, but I was very, very sad to read your thread just now, I've thought of you a lot over the past few months xx

 

[Paleowoman]

I expect I will follow you into the waiting room at some point and will be faced with the same decision re: mechanical to avoid a third surgery.

Hi Michele - I certainly hope you don't follow me into the waiting room to be faced with the same decision !

I knew that there was probably an issue with my valve being too small when a six week post op echo showed I had developed "mild left ventricular hypertrophy" - I had absolutley no LVH piror to surgery nor at the 4 days post op echo. The pressure gradient was already higher than I felt it should be too. And then when the pressure gradient rose with each subsequent six monthly echo I could not see how it wasn't due to getting too small a valve.

I looked on the Operation Note, which I was given a copy of, and the surgeon wrote that the annulus was sized and the valve chosen based on that. Imho as a non doctor, I think that the annulus should have been made larger to take a bigger vavle based on the fact that I am very active and very fit which all my specialists knew.

This is so weird - one of the other heart valvers who had surgery around the same time as me has been told that her valve, also a 19mm, is too small too. I can understand someone who is petite getting a smaller valve but, although I am very lean I am not of a petite build at all.

 

[epstns]

Anne - I am saddened to find you facing this now. I had hoped that things would stabilize for you, but given your concern about your valve size from day #1, I guess this is not really a surprise.

I do think that if anyone here can pull this off and get back to their "normal" life (what means normal?), it would be you. You have such strength - both physical and emotional, that I know you can do this. Whatever path you choose, I wish you Godspeed.

P.S. Have you thought of some medical tourism? You could come to Chicago and be operated on by Dr. McCarthy at Northwestern. He is the surgeon who put Ross Young back together when others gave up, and he was a member of the team that designed the Edwards bovine pericardial valve.

 

[Paleowoman]

Thanks for the encouragement and faith in my strength Steve - I do hope I can do this well

I hadn't thought of some medical tourism, that is a thought ! I am very lucky though that I get health insurance from my dh's work which means I can get to see consultant surgeons fairly quickly and also get second opinions easily which would be more difficult if I only had the NHS to rely on - I'm so lucky, really am (the NHS is lucky they don't have to pay for all this surgery). And today I contacted the Society of Cardiothoracic Surgery who have the stats on surgeons and hospitals. They don't say on their website which surgeons are especially experienced in re-do's so I asked for some advice - got back a reply from one of the surgeons there who is now in the process of requesting from the clinical lead at The Royal Brompton, and maybe some other London hospitals, who they would recommend for this type of surgery. Of course whoever they come up with I would run past my cardiologist who would have to refer me anyway.

 

[vivekd]

Hi Anne,
I feel really sorry to hear this.
Sending u warm and best wishes

 

[coffeelover]

Anne, sorry to hear the news that you are in the waiting room again.
Just out of curiosity,
what symptoms would a Valver experience with a valve that is too small? Are there any changes in exercise tolerance?

 

[Paleowoman]

Just out of curiosity, what symptoms would a Valver experience with a valve that is too small? Are there any changes in exercise tolerance?

On echo at six weeks post op it showed I had developed left ventricular hypertrophy (mild) which I had not had any of before surgery or at 4 days post op echo. Also the pressure gradient was rising steadily and had started out at a relatively 'high' level for a new valve (18 mmHG mean, 33mm/Hg peak at baseline echo). I was given no explanation and was told this was probably "clinically insignificant" even when the pressure gradient continued to rise on six monthly echos. The doc would also write in reports "Anne is concerned about the small size of her valve" - you bet I was. Not that anything could have been done then. Then this last echo the rise had acclerated fast to a level which showed that indeed the valve is too small. I understand that at redo the surgeon will have to enlarge the root to enable him to put in a larger valve. I have no symptoms at all that I am aware, but then I had no symptoms prior to heart surgery !

 

[DebbyA]

Anne (and Michelle)--I'm sorry to see you both facing this. It's hard I know--I went through it 3 years ago. I came back to the forum to see if I could find someone who had experienced mastectomy while on warfarin. I don't have the mental or physical energy right now to delve back into valve #2 experience (2 surgeries in the past week, but expect to improve soon), and will follow this thread hoping to offer what I can.

Meantime, my very best wishes,

Debby