Questions to ask ACHD consultant

[LadyZ13]

Hello my dear hearties! And Merry Christmas to you all.

This time next week is (finally!) my appointment at Papworth for an Echo and then a consultation with Dr Clive Lewis, their Adult Congenital Heart Disease specialist. Following a letter about my MRI last month, I'm expecting to learn more about this Atrial Septal Defect they've uncovered.

I have a bunch of questions, mainly 'how bad is it, how urgent is treatment, what happens if untreated, what happens if treated, what is nature of treatment, when(ish) might that be' and then a stack of lifestyle questions as I've rather put my life on hold while awaiting more data.

To ensure I'm as prepared as possible for this opportunity to Find Stuff Out, I thought I'd turn to you good people for any advice about what I should be asking. This whole hospital business is a majorly new thing for me, let alone having a heart condition, and I don't want to leave and think 'damn, I wish I'd asked about X!'.

So, tapping into your wide-ranging experience, what advice can you give me? And do they write anything down? Should I bring a PA?? (I joke, but am bringing my husband as another brain and memory bank...

With advance gratitude and good wishes for the festive season, Zoë

[ScoobyDoo71]

Hi Zoe, you are already half way there by getting to see a specialist in ACHD. The questions I would ask are as you have already said.

How significant is this ASD

If needs surgery will it be minimally invasive and done via catheters or does it need open heart surgery. The recovery times for both are very different.

Has there been any damage to my heart muscle already and what would happen without intervention?

What are your success rates with this surgery and how soon can it be done ?

Do I need antibiotics cover for dental procedures etc as ? increased risk of endocarditis

Are there any long term complications that I may encounter and what are risks with surgery ? Big things here are strike, arrhythmias and infection.

Is there an ACHD specialist nurse that I can contact for support?

Hope this helps, as a fellow ACHD patient this is what would be on my list.

Good luck

Sarah x

[LadyZ13 in reply to ScoobyDoo71]

Thanks Sarah, this is super helpful! I'd not thought to ask about the risks of surgery - from what I've been told I think in all likelihood I will need this and it's good to be at least mentally prepared for what this may mean.

It's all A Lot to get your head around but I'm so encouraged by the experiences of people on this forum who have lived through it and come out the other end in good spirits and good health!

[Kristin1812 Heart Star]

Hi Zoe. Its a shock, isnt it, being thrust into this Hospital world, and the patient role. But you seem to be doing just the right things in preparation.

Preparing yourself. Getting the right information together so they get a good story from you,

Asking other people who have been there before, what to expect.

Checking exactly whats on your own mind, and trying to anticipate what questions you might forget to ask.

Taking a good listener with you. (Mine takes notes and agrees to only jump in if im struggling to remember, or have missed anything crucial out.).

You have a good list of your own questions ready. But you might well be given some handouts there, designed around your particular issues, and possible treatments,

The BHF has such a good range of booklets/ information sheets and research reports on here, and remember their Helpline. Always helpful.

[LadyZ13 in reply to Kristin1812]

I'll be asking to be loaded up with all the booklets, believe me! Anything to reduce the need to Google this stuff 😅. I have found the BHF helpline handy already - prior to hygienist appointment I asked them if I should warn my dental practice and they said that for smaller procedures many dentists wouldn't bother with antibiotics now; which was useful to know. But they also warned me off a lot of exercise that the first consultant said was OK, so I think another lifestyle discussion would definitely be helpful next week...

[devonian186 in reply to LadyZ13]

Some very good responses.

It would be helpful to know what you SHOULDN'T try to do. This might include strenuous exercise (define strenuous) eating big meals late, avoiding certain foods or alcohol, travel- especially flying. Should you avoid any over the counter medications such as Lem Sip or paracetamol. Does he want you to lose weight or to exercise frequently and often but gently by taking short walks?

Is it desirable to go armed with BP readings for 4 or 5 days?

Take a note pad and pencil as you are sure to be prompted to ask other things once the conversation gets going.

[LadyZ13 in reply to devonian186]

Thank you, this is all helpful. I think given my age and the fact that I'm fairly fit (run 5km regularly, gym 3x a week, walking 15k steps a day now I'm not working!) means most of the lifestyle stuff is fairly predictable. BP is normal, always has been, was told by last consultant I was OK to fly. Main areas of caution were around heavy weight lifting, HIIT training and pregnancy, so they're right up there on my list... But a very good shout about over the counter medicine, plus I was thinking caffeine intake is worth checking... And it'd be amazing if they green light the ski holiday, I have everything crossed. It's something I've done for over a decade with no symptoms so, unless it's making my heart worse (or becomes prohibitively expensive to insure me?!) that'd be a real boon.

[Pilgrim2]

Hi Zoe, great news you have the appointment. Some great advice already and I just wanted to emphasise the point from ScoobyDoo on dental. I hadn't realised how important this was and unfortunately they had forgotten to tell me. This resulted in me being told a few days before surgery that I had to have a dental check up or they wouldn't operate. Apparently you have to have had one in the previous 6 months and I hadn't. Needless to say I could have done without that panic just before surgery. So make sure you understand exactly what they require on the dental front before surgery.Good luck with everything!

[LadyZ13 in reply to Pilgrim2]

That's a really interesting point about the dental checkup. I see my dentist annually and had a scale and polish about a month ago - when the heart murmur first presented in October I took the point about fastidious dental care very seriously and am still taking time for flossing daily etc... I had no idea they needed a dentist's green light to operate though. Out of interest, was that a catheter procedure or OHS?Thanks for sharing your experience!

[Pilgrim2 in reply to LadyZ13]

It was OH surgery and hadn't been told previously that this was a showstopper for surgery to proceed. So worth checking.

[LadyZ13 in reply to Pilgrim2]

Thanks for confirming! I guess it depends on the waiting time for surgery and whether they want a full dental checkup etc, but it's really helpful to be aware of this now!