Not the best question but the experiences of others always helps me understand what's down the track for me!
I have a TOE on Monday (27th) at Papworth to look at the 'rims' of my heart hole. If the rims are adeqate, they'll closethe hole with cardiac catherisation and I'll be spared OHS (huge if true, but I daren't get my hopes up).
However, when I got home from work yesterday, I had a letter inviting me for a CT the following Monday. Whut? I emailed the ACHD clinic and they called me this morning to explain - of course, a letter explaining my treatment next steps had gone AWOL and was cheerfully emailed on to me just now.
The MDT at Guys had reviewed my case and asked for the TOE to look at the rims. They had also requested a CT because the first CT in October had indicated coronary artery calcification and they wanted to take another look to rule out any significant coronary artery disease. After the October CT (which was to rule out a PE!) the doc said there was mild calcification consistent with my age, but that didn't concern her as much as the enlarged right heart.
This seems to be a seperate thing to my congential issue and I'm quite surprised as I'm 38, have never smoked, am not overweight and exercise a lot. I'm now having flashbacks to every rogue scotch egg or occasional fish and chips!
Can anyone share their experience of this condition or situation? What happens if it's 'significant' - obviously lifestyle changes, but the nurse mentioned medical intervention to bring it under control like reducing colesterol or blood pressure (my blood pressure is normal, but does it need lowering??). I also worry that they'll postpone my ASD closure as a result; and I want it fixing asap!
Thanks in advance 😊
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LadyZ13
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It is always a shock to hear unexpected health news, at any age. But in your case, if the calcification is mild, you've no other symptoms, and it's in line with your age, then try not to worry. You are far better informed than most people of your age, as this type of scan is usually only offered if someone has chest pain, or breathing issues.
Six years ago I too was diagnosed with mild calcification (less than 20% ) , but needed no further intervention, just to keep an eye on cholestrol level and BP. Im monitored regularly and both are acceptable. In my case he did also suggest a statin as a precaution because I have family history of heart disease, but if you're in otherwise good health it's unlikely you'll need this at your age.
Thanks Ellie, that does reassure me. The lead ACHD nurse did say he would be surprised if I had any serious disease as I'm totally asymptomatic. It's helpful to have it flagged as you say as it means I can be more mindful about cholesterol in the future. My dad was diagnosed with high cholesterol in his 50s and it's normal now 20 years later. Fingers cross this doesn't present a further complication!
Hi, as people get older they all get some calcification and plaque in their arteries. It's pretty normal in today's society. Calcification is usually measured by an Agatston score. I believe anything under 100 is classed as OK, mine was 987 and classed as very severe. Do you know what yours is? Because they've said they're not concerned I would think yours is pretty low. I really wouldn't worry about it if I were you. I guess they want to know your arteries are healthy and well enough to withstand the other treatment you are going to have.
However, see this as a warning of what could happen years down the line. You have the time to really look after your heart health before CAD starts to hit. See this as a time to really cut down on foods you know are bad for you and maybe bring in a little more good fats like fish oils and olive oils. Vitamin K2 foods too like dark green vegetables, spinach etc. But like all foods, everything in moderation and treats are good for the soul!
If you're not happy or don't really understand what they've told you tell them and ask questions. I don't think they realise sometimes how hard it is to be fed partial information especially for people like us who really care and want to know exactly what's going on with out bodies. Good luck and keep in touch
Hi Susie, thanks for this, it helps to know what to ask for in terms of getting an indicator of how advanced the calcification is. Will they be able to give an Agatston score from the CT, do you know?
It's a good opportunity as you say to approach the diet more mindfully. We eat red meat probably once or twice a week so could cut back a bit more, and switch the fish in breadcrumbs to plain fish etc. Buy a weekly bag of kale and cronch our way through it over seven days 😄
I'm lucky to have a good contact in the ACHD team who is quick on email and I'm sure he could help get me information if I feel in the dark.
Thank you! I just went back on MyCharts and see my last cholesterol reading was 5.5 so that is a little high. Perhaps there's something in it but fingers crossed... I'll ask the team for the score after the CT too.
if you have a report of a mild condition it will now be on your notes and when you go for future routine appointments will be checked for progress - I think that can only be positive ! It’s very easy to let worries grow in your mind - easy to say but I am probably the worst example of doing just that ? PH.
I hope you're right, Peter, that keeping tabs on a condition is better than not knowing about it, though I do rather miss my blissful ignorance before all of this kicked off! Thanks for the reassuring words.
If its not one thing its another. I think they need to check as much as they can before they make a decision to go further. It is a worry though and I feel for you in all that you are going through. I had good news on Thursday the specialist does not want to see me until next year. But I have got to do a stress test in 3 months time. ( I thought last time was bad enough )She said you need to put the effort in. We did have a bit of a laugh because I said right I know what i will be doing for three month down the gym practising. But we will never know what they find when you do the test or checks. Will the heart and body play ball.? I have to admit I had a few test on the Thursday, another echo, another ecg , another full blood test, but I assume she had good vibes from these to say iam doing OK I don't want to seem again for 12 months. But it is one hell of a roller coaster. Any way you take care. You will be fine. I am now off to weigh myself after having Sunday dinner.
Hi Felly, thanks for your reply. Yes, it is a rollercoaster. I have the TOE tomorrow and have to be nil by mouth, and then the CT the following Monday, and all of this is made more stressful because I started a new full time job last Monday! I need the hospital appointments to let up a bit, or at least for them to get what they need from one visit...
I saw your update and am really pleased for you, great news that they don't need you in for another 12 months, and you've only an exercise test before then. A weight off the mind for now! Take care of yourself!
Thank you. Yes the hospital appointments do take over your time. I hope your work respects your appointments. They should but I for one do feel guilty. And to save the hassle I sometimes take the day off as holiday. Fortunately my firm are now allowing you to buy extra holiday. But they should allow you time for health reasons. But it is a stressful time.. yes it would be nice if the technology was there for everything to be done in one day, but it will come. Thanks for your reply.
Work have been great - they're old friends, I was there for a decade and I've nothing to prove, but I still feel awkward. I'd much rather be working than sitting about waiting for invasive procedures! Also because I'm a returner it counts as my first year and I only get 20 days paid sick, which I'll be maxing out if OHS goes ahead. I miss the 26 weeks' paid sick I'd built up with them before!! I guess this is just another step and hopefully the CT next Monday will see me back to work before I'm missed!
I hope you get on OK.
I read your blog, you got on OK then. Its funny how your mind plays trick before the event. I liked the bit about how felt like you had had a few drinks. Be nice if you could feel like that All of the time while we face these challenges. Glad you got on OK.
Thanks Felly, it was quite a long and exhausting day given I was in bed most the time! I think the procedures remind you about your challenges and can be more mentally wearing than anything. Appreciate your reply
Yes the mental side is the worst. Trouble is, we as adults have to face them, and especially with hospitals. Here is a little story about my dog. When she had to go to the vets I would walk her there. Any way everytime she came to the bridge over the river to the vets, she knew and would just lay down and not move. I could not drag her by the lead, would look a bit cruel, so had to pick her up and carry her into the vets. She was a fully grown labrador. Sometime I wish I could just lay down and say iam not going. But as they say we have to face our demon's. Trouble is that comes from people who are not in your shoes, feeling your pain and anguish. But we all get there in the end and learn to live with the issues. Just becomes a new way of life. Like when I went to see my cardiologist last week I walked in and the nurse says. You are down for an echo, first I heard about it. I know echos are very simple test, not as invasive as yours but it that, sort of shock where your mind then starts to run away and think why does she want that test, why does she want this test. But I have to go along with it, I carnt lay down and say iam not doing it. Any way you seem to be doing OK. Take care.
It's a really difficult balance of managing the information too, so that you're not overwhelmed or set off worrying about things that aren't relevant to you, but are prepared for possible developments and well-enough informed to ask the right questions. I think all my research into the TOE actually made me think it was going to be much worse than it actually was for me, but I will have more procedures to come and I do want to understand what happens, but I also never want to have to go to the hospital again and just want all of this to be over and sorted - and obviously it can't be sorted without more time in hospital!
The mental battle is the biggest by far and I'm not winning it yet!
Hi everyone - to update on this, as the hospital called today. I do have moderate disease - with 25%-49% blockage and an agaston score of 156. They're going to put me on statins and aspirin.
They also told me I'll need OHS for sure, which is the more scary thing. But like many on here, I'll come through it...
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Coronary artery spasm
Scared
Coronary artery disease 
Coronary artery spasm
Abnormal right coronary artery 
