A diagnosis! Yipee! Kawasaki Disease, look for calcified aneurysms! (also a question about warfarin)

[MarmiteB]

Hey you lovely lot!

So, some of you know that I needed a 2x CABG Jan 2022 aged 34 (very nearly my newly plumbed heart's birthday!) and every Dr/Cardiologiost that looked at my notes/history/angiograms came away scratching their heads and not understanding what had happened or why my vessels were so diseased. None of it really made sense.

BUT I was told there was a Cardiologist, Dr Johnson, who specialsied in the "Weird and Wonderful" who wanted to see me. He looked at my notes and diagnosed that I had had "atypical Kawasaki Disease" aged 20 (it normally happens in kids under 5).

So, what is Kawasaki? It's a immune reaction to a virus or a bacterial infection that leads to vasculitis. If left undiagonsed to run riot, as it was in my case, the vasculitis leads to anuerysms of the coranary arteries (my biggest is 7.8mm) followed by narrowing and the artery being blocked. My LAD artery looks like a fat string of sausages, not normal at all. Also, the aneurysms are calcifed which are pretty unqiue to Kawasaki, but very few caridologists are aware of this.

Why am I telling you this? Well, Kawasaki disease is a leading cause of acquired heart disease in children in developed countries but if you present with issues from having it as a young adult (frequently undiagnosed) with heart disease in your 30s, your much more likely to be missed. If there are any young hearties on here with aquired heart disease ask them to do a calcium score and look for calcified aneurysms. BUT the likely finding someone like me is rare as it's literally a one in a million chance of happening with just a handful of cases across the world each year...lucky old me!!

About warfarin... I have been told I need to go on this for life now due to my anuerysm and I was just wondering what it is like? I know you have to go to anti-platelt clinics/blood tests. How frequently do you need testing? Any side affects to look out for other than bad bruising?

Thank you xx

[Milkfairy Heart Star]

I am so glad to hear that you finally have a diagnosis. It's such a relief. I felt validated and vindicated when I finally got my hard won diagnosis of my rarer form of angina.

Next part is learning to live well with your condition. Work in progress for me.....

Is warfarin the only option? A Direct oral anticoagulant DOAC not suitable?

DOACs are easier to manage as you don't need to check your blood frequently to determine your warfarin dose, however they can't always be used if warfarin is thought to be more suitable.

[MarmiteB in reply to Milkfairy]

Hey Milkfairy! Good to hear from you

Yes, having a diagnosis has been good, I don't think I realised how much it had been playing on my mind. The bonus of having the diagnosis is that I got in touch with one the world leads on it in the USA (oh the power of google!) and she wants me to be in her study and she sent me a paper about KD patients going on to have kids which was really reassuring.

I'm on DOAC at the moment but they want to "upgrade" me to warfarin... bring on the extra brusing! People will just think I am cage fighter...

[Hidden]

congratulations seems a weird word to use when it comes to a heart condition but it fits when as you explain it can be very very easily missed and you finally have the relief of a diagnosis. You’re definitely and literally one in a million! Wish you well!

[MarmiteB in reply to Hidden]

Thank you, I know, congratulations shouldn't feel right but actually, it does! Ideally, one goes through life without open heart surgery at 34 but, hey they are cards I have been delt!

[jeanjeannie50]

I've taken Warfarin for years and get on with it well, so long as I take it mid breakfast. It makes my stomach sore if I take it at night, but that happening is just a distant memory for me now. I bought my own CoaguCheck machine and check my blood level (INR)myself, they cost about £300, but I bought mine second hand from someone I knew who'd had it about a year and then gone on to the newer anticoagulants. Before getting it I went to the nurse at my docs surgery to have it checked and it was a pain trying to find somewhere to park. So I bought the machine, but the NHS supply me with strips and lances on prescription to use with it. I have to ring my result in to them about every 6 weeks.

Jean

[MarmiteB in reply to jeanjeannie50]

Hey Jean! Thank you, your reply was really helpful. My husband asked if such a gadget exsisted and even though I'm in the medical industry I wasn't sure, so thanks! I will probably invest in one at some point after I am set and stable on it. If I get pregant though I will need to move to a twice daily injection of edoxaban which I have used before, just something else to look forward to!! Also, I have made a mental note to take it with food which I do with my other drugs - best to protect the stomach!

[richard_jw in reply to jeanjeannie50]

Why warfarin? I know why cardiologists want me to go from a DOAC (Rivaroxaban) to Warfarin. It's because DOACs are contraindicated with Phenytoin. I was under the impression that apart from that sort of reason, DOACs and warfarin are pretty interchangeable and DOACs are a lot less hassle.

[MarmiteB in reply to richard_jw]

It's because I have a "giant" anuerysm...I don't know why but I say "giant" to do it in the voice from the X factor or a film advert!

[MrsSuzuki]

My husband has been on warfarin for about 10 years, a bit of bruising but nothing much. He takes his tablets after his main meal about 5 or 6pm. He gets tested at the doctor's about every 2 months.

Kawasaki disease?! My husband would say that is too much sitting on one of those foreign motorbikes 😂! (hope you don't mind the pun).

Lily

[MarmiteB]

hahaha yes! Named after Mr Kawasaki, the Japanese dr that discovered it in 60s…maybe his brother designed the bike?!

[RichardUK2]

Wow that was really interesting thanks for sharing. It always amazes me how complex the human body really is.

As a bike rider I can’t really forget that one. I have Ducati disease myself 😛

[MrsSuzuki in reply to RichardUK2]

My husband has a terrible Triumph disease 🤣

[Valentino1XXX]

Good Morning MarmiteB.Warfrin is what I was told to be put on for life in 2006.

Everybody's reacts differently with medication.

I hope that for you to be put on Warfrin for life helps you greatly.

Unfortunately for me after taking Warfrin for 9 years I was then only to be told that it dose not work for my body.

Regards

Michelle

[gladliz]

Hi MarmiteB. Am also on Warfarin for life, (Afb) and have been for the past 10 years. Because of other meds I am taking I like to space them out so take my warfarin 17.00-18.00. I go to my local surgery for INR tests and as I am usually fairly stable in my readings am tested about every 10 weeks. Having said that, having to stop taking them for a week prior to a procedure then going on a course of antibiotics for a chest infection over the Christmas period has really messed up my dosing and am on weekly testing for now.

Other than slight bruising, I haven't had any problems with warfarin, don't even bleed that much, eat green veggies as usual, no cranberry juice, but don't like that very much anyway.

Hope you get your readings stable as quickly as possible and into a routine.😊

[MarmiteB in reply to gladliz]

Thank you

I'm the same...not a grapefruit lover and I only like cranberry juice in a Cosmopolitan! Good to know that I will need to be aware of having antibiotics. I'd be gutted to not have my green veggies though, I eat a lot of vegetables but as you said, it doesn't really affect you. I'm currently on clopidogrel and aspirin...I do bruise very easily but I am wondering if there is a hormonal pattern to it as well?! I have no idea!

[ParrotLover22]

Hi MarmiteB. I'm on Warfarin (for Life as well). My INR is very unpredictable therefore I have to go to the Clinic more or less Weekly. The Nurses have said that I am very sensitive to it!! They don't like the thought of me getting a Machine to do it myself!! I have 'Mechanical Valves' and haven't got a choice of another Drug. Warfarin is the only one 'Approved' at present! A lot of things can affect your INR but it's just something I have to do. It keeps me safe!

[MarmiteB in reply to ParrotLover22]

Yes, I have to have warfarin now because of my "giant" 10mm aneurysm in my LAD coronary aretery. I hope your mechnical valves are treating you well Apparently aneursysms can lead to blood clots because of their odd shape which can lead to blood can building up/get clogged leading to a clot which can then be dislodged and cause trouble else where.

Hopefully I am not to sensitive to warfarin and I get a good INR balance quite quickly!

Quick question...how about having a drink with warfarin? Can you have a night out? I am not a heavy drinker but I am only 35 and don't want to give it up forever!!

[ParrotLover22 in reply to MarmiteB]

Hi again. I'm sure you will be ok and you will be monitored closely. It is Classed as 'High Risk' so that's why! I can understand your position though being young. I'm a lot older than that, unfortunately! I have just looked in the Book they gave me and it says, regarding Alchohol, it is recommended that you do not exceed the National Guidelines, 3 units a day for Men and two units a day for Women. One Pint of Beer is two units, one Pub measure of a Spirit (25ml) is one unit, one Pub measure of Wine (125ml) is one unit. It is dangerous to Binge Drink on Warfarin! You should get a Booklet anyway and a Card to carry around, just in case of Emergencies. Your INR will depend on what Target you are given as well!! As for me, my new Valves are 100% better than my own used to be lol 😂. Hope this helps a little and look after yourself

[MarmiteB in reply to ParrotLover22]

Oh I am so glad that they are working better for you! That's great!

Hmmm...I'll have to be careful going out for the night then. Damn it!! I wouldn't say I am a binge drinker but if a 750ml bottle of red, white or rosé wine (ABV 13.5%) contains 10 units and "binge" drinking for a woman 6 units...then maybe I am?! Crikey.

[ParrotLover22 in reply to MarmiteB]

Lol 😂. A little Story for you - When I go to the Clinic which is more or less Weekly, there is a Fella there who's always drunk!! His Name is Dennis, Nurses have called him 'Dennis the Menace'. So they say to him, oh come on now Dennis, what have we told you....! He said last Week, I know you tell me but as soon as I get out of here, I go to the Pub and have a couple and anyway I was drinking before you lot were born lol 😂. They just laugh. Don't worry about it too much, you can't stick to everything in the Book all of the time. It would drive you Nuts lol 😂

[Classof1988]

I have been on Warfarin for 34 years and it has never caused any problems. The only issue I have had was with dental extractions and this has been a mild inconvenience which was easily dealt with at home. Your dentist will give you advice regarding this, and my dentist liked me to have my INR tested 36 hours before any major treatment but other dentists may do it differently.With regards to INR tests mine are anything from 2 to 10 weeks apart. Basically if the INR is within the desired range I get a retest in 8-10 weeks, if my dose needs changing then next test in 2 weeks then building up to the 8-10 if my dose remains unchanged.

Different hospitals have different appointment systems and some have appointments that allow you to attend before or after work if you are working full time, check which clinic best suits you.

Hope this offers reassurance.

[MarmiteB in reply to Classof1988]

That's really helpful, thank you very much. There are so many things you have to think about at the beginning when you are diagnosed with a long term condition but after a while I am sure that they just become the norm. I am sure that regular blood tests will also become routine... at least this time these blood tests aren't "scary" as I know what is wrong and they aren't looking for anything malicious, just a check up. Touch wood, I have really good teeth (genetics not immaculate hygiene) and so I don't have to go to the dentist very often...but give me 30 years and it might change!

[richard_jw]

I had a STEMI 30 months ago. The RCA was completely blocked. The reason for the heart attack was slow blood flow through the artery. The slow blood flow was caused by the artery being ectatic which I'm told means that it was wider than it should be. Only part of the artery was wide, and other parts were narrow causing the blood to speed up considerable. In my case this caused a lump of plaque to be dislodged from the artery wall causing the STEMI.

Cardiologists asked me if I had had Kawasaki disease as a child, but since I am over 70 I really did not know.

I am on Direct Oral Anticoagulants (DOACs). They do however want me to go onto warfarin but in my case there is a solid reason in that DOACs are contraindicated with Phenytoin.

It only means that in my case the DOAC is less effective because of the Phenytoin so as far as I can see I would have to take more of the Rivaroxaban. so I am waiting for a cardiologist who actually knows something about DOACs and ectatic arteries to pronounce.

I'm pretty unimpressed with the cardiologists in my part of the world, since I had to point out the fact that the small dose of Rivaroxaban seemed to do nothing. I came to this conclusion when I cut myself and bled very little. So instead of 2.5mg of Rivaroxaban I am now on 20mg while they get their act together.

I would be very interested in why they are recommending warfarin in your case. DOACs are much less hassle

[MarmiteB]

it is due to the size of my aneurysm no getting away from it, and no hiding from it. What is a girl today? I just have to listen to the doctors, they are there to save your life after all!