28 year old male with congenital AVS with recent mechanical aortic valve replacement with ascending aortic graft

[Kalivia]

Hi all,

I have lived with my congenital AVS fairly well up to the age of 22 when I needed the intervention, which was to replace my leaky valve with a mechanical valve, along with this unfortunately I also needed an ascending aortic graft put in too due to the damage caused over the years.

Ever since my surgery in 2018 I have experienced intermittent chest pains which sometimes can start randomly in my right leg or even right arm. I had never experienced this before my surgery and actually started 24 hours after the op when I was in ICU.

Having investigated with several doctors overs the last 5 - 6 years noone has been able to pinpoint it. I presumed it may be Coronary Artery spasms as it only happens at rest, never when I am exercising or moving. However, cardiologist seem to not think It is and advise the only way to diagnose is to go through a provocation test, which doesn't sound too fun if I am honest! It happens once / twice a month and doesn't respond too well with nitrate/GTN spray.

As I have a 2 and half year old daughter, I am always so worried about having this pain when I am alone with her.

Has anyone experienced this? I feel like I am the only person, especially in my age group!.

Thanks

[Pefki]

I am 26, same history as you it seems, managed to live perfectly normally after a balloon dilation and then a valve repair as a newborn up until this year when I had the exact same op as you. So far I havn't had any noticeable pains and I have my post op full check up next week to see where I'm at. I'm sorry you have these concerns and I can understand your reluctance to do the test where they push you to your limit, it isn't something I would take lightly, even considering that people in our position are considered to be 'fixed'. I personally am fed up with the hospital visits for the constant time consuming blood tests for INR. I really wish I never had to step inside another hospital again. How do you handle the testing if you don't mind me asking, and is your INR stable?

[Mitchum in reply to Pefki]

As someone with a mechanical mitral valve, I would advise you to buy a Roche Coaguchek INR monitor, which enables you to home test. I monitor my INR closely and am in range over 90% of the time. I visit the GP annually to check their machine against mine and actually went yesterday. Their machine was 3.4 and mine 3.5. Perfect!

[Kalivia in reply to Mitchum]

Agree with all of this, it's bit pricey at first but definitely worth it.

Also do my 6 monthly EQA they call to check it's calibrated with their machine.

[Kalivia in reply to Pefki]

Hi, sorry you've experienced this! I'm glad I can relate to someone around my age as I have never actually spoken to anyone with this condition before.

I just don't want to take a risk in doing this procedure before I exhaust all options, very good to hear you don't suffer from these pains.

How are you in terms of migraines? Unfortunately, I suffer from these. I get monthly retinal & standard aura migraines.

Re INR, mine has been fairly stable bearing in mind I love all sorts of food including my greens, which as you know we need to limit. However, after 1 year of heading to my local warfarin clinic I had enough of the trips/time it took and found out that I could self test, if I purchase the Roche INR machine. This transformed my life and gave me much more freedom. Currently, the warfarin clinic call me every 6 weeks to take my INR. I test as usual once in the morning and jot the result down.

I do know that some areas of the NHS do not offer this service, so best to check. The machine cost £300, the strips are supplied by NHS (who are quite reluctant on handing out when running low due to sheer cost of them) I've never had to buy strips, just take extra care when doing my INR every 6 weeks to not waste a strip.

[Mitchum in reply to Kalivia]

Can I just say, you DON'T need to limit your greens! The key is to adjust your warfarin dosage to your diet and not the other way round.

[Pefki in reply to Kalivia]

I have lived with migraines since I was about 13 which gradually became more and more frequent and debilitating. Since surgery, I may have had about 3 migraines but not to the point of full blown throwing up, which was very common previously. I have read that an upside of warfarin can sometimes be a reduction in migraines. As far as diet, I love all cuisines and lots of vegetables and I don't cook, I dont drink or smoke. It is obviously not just greens that effect INR, it is inconsistency and that is inevitable at the age of 26.