Susan's Journal

I’m still here, Still haven’t had surgery. I think the figures for my heart meant I could withstand a wait but then covid came along. I have been severe for a year now and I’ve been up reading all night about survival rates and know I’m a year into my 2 year outcome. Am I reading too much or should I calm down a bit.

Very distressed at the moment and not all heart related. I have got to the point of severe aortic stenosis. 0.82cm valve size. Time for work to be done. I was discussed at a valve meeting but before that, they asked for a CT scan. I was then called into the hospital to see a respiratory consultant, thinking that this might be part of the work up too. However, I was told that they found a lung nodule on the scan. That Im to have a PET scan because they have no history of lung exams (I have'nt had any before because basically I don't have any problems). They have nothing to compare it with. Im still awaiting the PET scan. When the valve meeting letter arrived, ie copied to me, deciding on forward action, the letter also states that I have bilateral adrenal enlargement/lesion. Now this is really worrying me!!!!! I have no idea what is going on. I just see a stream of other tests going on now and delay in my heart valve/possibly worst. Has anyone else had disturbing CT scan results?

I haven't been on here for a while but I have now had the various work ups for surgery and Im now severe. I was called to a different appointment when I was told that they found a nodule on my lung on my ct scan and that I now have to have another scan etc etc. This is all just too much at the moment and quite frankly, the heart valve surgery feels like its nothing in comparison to the worry I feel. Is anyone able to report similar worrying evidence coming from their ct scan?

Following on again from my TEE, I have seen one of the registrars yesterday and came away quite disturbed. My actual surgeon wasn't available and the registrar was not helpful. So, the valve size has decreased 0.1 in 6 month giving me a valve size of 1 cm. However the velocity has changed to over 4 ie 4.7 whereas it was 3.2 I have come away very concerned and I will now hear about an angiogram and lung function test and I will be put on the waiting list for surgery which is about 4 months. In my mind I was confident with how everything was going . I am now very concerned. What difference does the velocity figure make? Should I be advancing the need for surgery? I have no symptoms other than slight shortness of breath on climbing stairs. This is all incredibly new to me. I have always had a heart murmur as does my Mum who is 87 and never been tested further. She gets the same shortness of breath, always has done. My parents are actually putting in my mind that technology i causing me to have this work when all my family are long livers with no work such as heart surgery ever needing doing. almost like Im failing family history. sorry.

Following on from the TEE I had done today, it looks like I’m moderate as opposed to severe. Does this generally mean watch and wait and for how long is it likely to stay as moderate.

TOE (TEE) tomorrow. Im very nervous about this test and looking for some reassurance I think. Im excited at the same time because Im fed up not knowing exactly what is going on. I was diagnosed Severe last November, not so severe in January and possibility of valve being damaged or bicuspid (first Id heard of it). So this will hopefully put an end to the speculation and I'll get a better idea of the next course of action. However, and I know this isn't possible, since last year I have felt the best Ive felt in a long time. The shortness in breath has improved. I have no symptoms of aortic stenosis atall and some of the common symptoms disappered about a year ago ie not being able to lay down and sleep, light headedness etc. I totally don't understand that. I thought it was meant to get worst, not better. Any comments please. x

If you've read my story so far you will know that I saw the Valve specialist at Kings in London in January and it was decided that I needed to be discussed at a multi disciplinary team meeting. However it took 3 months before that happened. I had been initially diagnosed as "severe" but following on from another echo, it looked moderate severe ie the valve size was double at 1.2cm and velocity 3.1ms from 3.5 This has been confusing and worrying for me but I've gone with the flow and now they've decided I need a TOE. I think this is to actually determine the situation especially as the valve specialist could see a possible bicuspid valve. I feel happy with that. It answers a few questions and I feel I have ownership of that diagnosis after years of some strange symptoms without anyone knowing exactly what's wrong. Anyway the TOE is on Wednesday and Im quite scared. Ive never been ill, never had anything invasive done and I feel very well. Even my shortness of breath seems less and I feel better than I have in 2 years or so especially as I have also been diagnosed with asthma and treated for it. Im looking for some kind words about the TOE to take with me and also help with regards to what the next diagnosis might be ie on the waiting list or watch and wait?

I found out in November that I had Aortic Stenois. I also found out it was severe. I had no idea and turned into a scared lunatic. I was referred to a top heart hospital in the UK and had an appointment with a valve specialist.. He didn't feel the measurements made sense based on the velocity and lack of symptoms. I had another echo and sure enough the measurements are moderate...phew....ish. He wanted my case put to a multidisciplinary team. Its now almost April and Ive still heard nothing. Im kind of glad. I obviously am too scared to rush it all along but then again should I be pushing for this. Its only moderate after all. However now and then I get a touch of panic. I know about the need for getting work done as soon as soon as you get symptoms but I believe that is when you are severe and having symptoms. I don't really have symptoms other than being a bit short of breath. Ive been short of breath for over 3 years. Clearly Ive been mild and moderate in that time, not severe. Is there a point that you start counting the symptoms time scale? Can someone clear this up for me? What stage does this have to be at ie severe or moderate to start the 2 year countdown once you start getting them. Many thanks Susan

Has anybody on here heard of low flow with regard to aortic stenosis. I believe it related to preserved left ventricle and the challenges it presents to the surgeon. I have a preserved left ventricle and yet a possible bicuspid valve with unusualness in its construction.

So I’ve seen my surgeon today. Surprisingly he arranged another echo bcos he was surprised by my last test. My valve size of 0.58 caused him to check them again and it has increased to 1.1cm now. Also the velocity has decreased to 3.2 from 3.5. What he did notice , maybe because he also didn’t seem to see calcification was that one of the leaflets is permanently closed while the other two shudder a bit. He therefore has decided to put the decision about what to do to his multidisciplinary team. He is even questioning whether it should still be regarded as acute bcos if the state of the valve? What does everybody think of change in figures? He said that if it really was 0.58 he would admit me there and then. Also has anyone heard of a tricuspid valve with only 2 leaflets working?

I’m a little scared - I have my first appt with valve specialists tomorrow at Kings. I don’t know what to expect to be honest. Two months ago I had an echocardiogram done and it showed moderate/severe aortic stenosis with a valve size at 5.8cn but 3.5ms flow? I think that’s the moderate part. I’ve managed to get this appt sped up a bit. All of this is a total shock but I’ve done my research now and feeling a little more positive. I had an echo 3 yrs ago and it was only mild. Symptoms? None really other than a bit short of breath. That has improved though by being treated for asthma. The year before last I had problems getting up the stairs sometimes but that was mostly to do with arthritic pain. Not such a big deal now. The year before Last I struggled laying down to sleep at night but that has totally disappeared. I have never had chest pain and I don’t faint. I catered totally for Xmas and a party for 40 people beforehand. I have profuse sweating sometimes that nobody can diagnose. I am 59 and feel relatively well apart from some joint pain. My husband says I’ve slowed down. So my cardio who referred me has suggested I get on track for surgery but will bow to the valve specialist judgement. I don’t have a bicuspid valve but I did have suspected rheumatic fever at 10. I’ve always been told I have a heart murmur but that it’s benign. So what do you think they’ll say? Am Iikely to be a watch and wait ? I’m scared I’ll underplay my symptoms but they have generally improved. Wish me luck tomorrow.

My first Grandchild was born on Tuesday. At the beginning of my Daughter pregnancy I had no idea that by the end I would be waiting for heart surgery, absolutely no idea. I've had an appt with a cardiologist who has put me on track for appts with valve specialists and my first one is 2 January is at Kings in London. I have no idea what to expect or what questions to ask. What is the routine on the first appt usually? I always think I'm asymptomatic but in truth maybe I'm in denial. My stamina is much lower and I guess that's bcos the aortic valve situation is severe and stopping me go too fast. I held a large pre Xmas drinks party last night. It was hard to keep going with the preparation. Other than that nothing. Do you think they will just discuss watch and wait even though severe. There is an element of moderate but only in so much as the velocity? Ie 3.5ms.

I notice that you all are familiar with various surgeons etc and I wondered if anyone had an idea of good surgeons/cardiologists in the UK. I notice you talk about all of yours with great satiscaction and almost like you are recommending a friend. I think that would make me feel a little better if I knew some names here? Ive been referred to Kings which I believe is a good teaching hospital for the heart. Susan

I haven't had to wait too long. My appointment in London with valve specialists came through today for 2 January....that will give me something to look forward to after Christmas. I feel really worried about the appointment because I don't know what they'll find. Im a great "what if" person and Im so concerned that something else will come to light. Im also hoping they'll decided to do some kind of minimally invasive surgery as the surgeon Ive been referred to specialises in that. Im probably too young and not high risk enough but I guess there was a reason to refer me. Will I be a guinea pig? In my view if the TAVR valve doesn't last as long, there might be something else discovered by the time I need it replacing.

I've had two echos now but my cardiologist is querying the results as a couple of the figures aren't totally compatible. Without a doubt I have AS, it's just the severity. Regardless he feels I should have surgery in the next 3 months so he's hardly dragging his feet. He said im too young to sit around waiting g for symptoms. He has referred me to two cvalve specialists and is letting them make the final decision as they are more specialised and are doing further tests. I also have a friend of a friend who is a cardiologist and he said he would ask to see me again in a year. So do people think the valve specialists can stand as my second opinion? What do people think? I also ask this bcos I have no symptoms and almost forget I have this problem.

I've been feeling so much more positive and having "angels" appear in the form of people with similar issues or those with much worst. like the little family who want to rent my ski property in Vermont as their last holiday as a family because of a terminal illness. Puts everything into perspective. I've also told 2 of my daughters so I don't feel I'm keeping it all trapped in. Ive told them in such a way that it's all good news but not my pregnant daughter yet. She did biomedical stuff at UCL and will know the facts a bit more which she doesn't need while about to give birth - her partner knows. However I'm still scared. I still don't have my appt through with valve specialists but I'm not expecting too much at this stage. My biggest fear (I don't like anything medical) is that it sounds like everyone feels worst for a while. I don't have many symptoms if any atall and yet I'm moderate severe/more towards severe. In fact I question if I really have a problem. I certainly don't want to feel worst and what about the cardiac depression everyone has afterwards? How bad does it all get? I've been doing research and taking various supplements and foodstuffs ie vit K2 and eating magnesium rich foods etc incase I can stall progression. I'll try anything but I feel very well.

The copy letter to my Valve specialists at Kings has come through today. The 2 specialists seem to be experts in minimally invasive surgery. My GP had also mentioned about keyhole. Everyone I read about has the full works. Why would I have TAVR? I'm only 59. Is it becoming a growing trend?

So I'm aware I have sounded a complete and utter wimp. I'll admit I've been one. I am in complete and utter shock. Everyone lives a long time in my family with no ailments. My parents are 87, my Grandmother 97. My Father in Law is 92 and is still playing tennis! In no way was I expecting at 59 to have issues. Didn't even enter my head. Read my earlier journal entries to get the picture so I won't bore you anymore. We don't need negativity on here and I've been grateful for your positivity so far. Obviously I will have a few more why me days, how has this happened days etc but I wanted to tell you today has been very different. I have been investigating my family tree on my Fathers side because his Dads brothers and sisters seemed to all die at 60/62 and all of heart issues. It's clearly skipped a generation. So one of his sisters death certificate arrived today and she died of a ruptured aortic aneurysm. That damn aorta again. It was 1942. How did she have any chance of knowing she had this problem. Even if they had, they could never have helped her anyway. It made me realise how lucky we are these days and I am truly grateful. I then met a friend for lunch who is super dooper fit. She is a volunteer for the British Heart Foundation. She is also a personal trainer and she has had a lot of heart problems. Her husband has had two heart attacks and he's luck to be alive. He doesn't expect to live beyond 66 because his first heart attack was at 42 yet he's still working and theyvtravel to Australia a lot. And then to continue the story I remarkably bumped into a friend of a friend who I have not seen for about 10 years and I know she had valve surgery 15 years ago. She came round the corner in Marks and Spencer's, there just in front of me. I told her my news and she was the most amazing breath of fresh air. She made me feel so well. She had been born with a bicuspid valve without knowing and like all of us here, she was shocked to discover her situation but she was so positive. She showed me her scar .... in the middle of Marks and Spencer's! As I said before, I really have no symptoms. I spent yesterday in London. Today I've been lunching and Christmas shopping, cooking dinner when I'm home and it's now midnight yet I'm still not tired. Am I really ill? 1.

I had a dreadful night again last night. I might have to see my GP next week and ask about anti depressants. With Christmas coming up and a Grandchild due I'm afraid everything is automatically drawn to me thinking morbid thoughts. I'm the worst person anything like this can happen to. About 20 years ago I was in a dreadful car accident and suffered horrendous anxiety afterwards. I think I was near to agoraphobia. My life came to a standstill but I clawed myself out, and now this. How unlucky can I get. I just couldn't bear to get like that again. Anyway I was shaking this morning but was already booked for lunch at the Ritz with my husband. It certainly lifted my spirits and I was fine. I must admit my heart did a funny flippy floppy thing in the taxi which scared me and after lunch which was not huge but included a glass of champagne and a couple of glasses of red wine, my heart was racing a bit and these are not normal things for me. I'm therefore not sure if it's the as or anxiety. Anyway I guess has to go on. We are a very healthy eating family. The Ritz isn't my normal diet and I know bcos I've looked after myself it is possibly while my heart is dealing with this well and compensating for it. I have a plan. I shall take lessons in meditation to guide me through this. I have possible holidays planned based on what stage I'm at too. We have a house in Vermont which I can't wait to get back to. Im the meantime my husband and I will have projects and little trips to make sure I keep exercising too and for afterwards. Thank you for all your guidance so far. I can't get over the shock and how huge it all is. Still haven't told my Daughters yet.

I'm a total mess and feel like I'm living in a nightmare bubble. I'm still having good and bad days. Still totally shocked by the diagnosis. I saw a cardiologist on Monday and he has referred me to some valve specialists at a top London heart hospital - Kings. He thinks I shoujd have the surgery in the next 3 months whereas I thought it might have been a 6 month watch and wait. Not sure what's best. I'm not sure if I'd rather have time to digest it. I'm moderate severe bcos although the valve size is severe, the velocity measurement is moderate. I don't have loads of symptoms. I get short of breath but not by much. I dont have swollen feet and ankles and I haven't passed out although I'm scared I will now! Apparently my heart is compensating very well for it but I guess there comes a point when it won't. I don't think the left ventricle is enlarged and apparently it's function is "preserved". I don't have regurgitation. I still feel like I'm going to drop dead any minute. Anyone able to pass on some encouraging words for me?