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Sticky Blood-Hughes Syndrome Support
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Heart problems and APS

I never thought much about how Sticky Blood can affect the heart. Without a family history of heart disease I expected to be free of major heart problems beyond what has happened due to clotting in my lungs. But this past Monday I felt chest pressure that was unlike any I had experienced before. I called for an ambulance and after running different tests it was found I had a heart attack. A small one anyway. A heart catheter procedure was done and one stent put in. The discussion around all of this was APS and the inflammation it causes and thus, it can cause heart attacks. Has anyone else had a heart attack or even other heart problems?

I see Dr Schofield in several weeks, she is my APS specialist. I am curious what she will have to say. I am back on antiplatelet therapy, starting with Brilinta, then going back to Plavix after several months. I was also put on a small dose of Lisinopril and Lipitor was added. I also have Nitro for angina.

Thanks for your sharing.

Patti

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There was an interesting link about heart disease posted on here. I'm away from home right now and won't be back until Wed 22/3. I can't remember who,posted it, but maybe Admins who are fount of much knowledge will know.

I had 2 small heart attacks last year and mod/severe mitral valve regurgitation. This, fortunately, has resolved over the months and I have another heart echo in June. My angio was clear and I don't need a stent as arteries are all clear- so I'm always thankful for small mercies!

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I have a faulty mitral valve diagnosed as a problem of Aps.

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I have Pulmonary Hypertension and two leaking heartvalves and yes, heart-issues are a symptom of APS. I am selftesting on Warfarin with an INR around 4.

I think you should call Dr Schofield as soon as possible and tell her what has happened. What anticoagulation are you on at present?

Best wishes from Kerstin in Stockholm

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hi I had a miocardial infarction when was 41 years old . MI is one of the several thrombosis you can get with APS

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My GP is trying to prevent heart disease by checking my cholesterol regularly. it needs to remain super good (cadiovascular risk management) because of the APS and pregnancy complication (HELLP) I had. So I think there's a link indeed.

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Thank you so much for the comments. It's very helpful. I do have mitral valve thickening but no regurg. I was borderline pulmonary hypertension with a right heart cath several years ago. I was thinking of calling Dr Schofield and letting her know, so I should do that on Monday. I'm looking at all of this thinking gosh, we learn so much when having APS. So much about our bodies and its various conditions it develops.

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I too had mitral valve issues and had mine replaced with a mechanical valve in July 2006. I was diagnosed with APS in December 2005 after a complication with my first attempt at heart surgery. I also take atorvastatin for my cholesterol as well as altace for high blood pressure. The valve looked indicitive of someone who had rheumatic fever. I never had that but had a history of strep throat (a rheumatic disease. The heart surgeon couldn't say whether the strep throat or my APS caused the valve damage.

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Hmm. I wonder with APS if the mitral valve is likely to worsen with time.

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Hiya. I feel I came to APS via the back door lol. Over the years it'd been thought I may have MS, lupus etc. It was discovered I had mitral valve stenosis in 2010 and was put on warfarin at inr of 2-2.5. I had a valvuplasty which they said would last about 5-10 years. However 6months later it had gone again. Everyone said I must have had rheumatic fever but I did not!! 2012 I had open heart surgery to replace the valve. The next problem was they couldn't wake me and I remained in a coma for a month before waking. (Possible catastrophic APS?) Only months later, the TIA's started. I had a great consultant who did a raft of blood tests and he told me about APS. My warfarin was increased to 3.5 to 4 and he sent me to a haematologist at the local hospital. She too was great and directly wrote to Guys hospital and I see a haematologist there every 3 months or so. My metal valve is doing great but the aortic valve is now regurgitating and a watch being put on it. So, yes it can affect the heart.

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Wow! You have been through a lot! My heart goes out to you, Af

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Look up libman-Sachs on google. Also you may ba able to have your valve repaired instead of replaced. They say this is suppose to be better. Just another possibility

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Hiya. I think they always try to repair the valve first, if at all possible , but they can't be certain until you are on the operating table. 🤗

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Not true I went in for a"repair"

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My surgeon told me he would repair my valve and only if it was beyond repair, would he replace it. I remember asking as soon as i woke up.

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Interesting! I was also diagnosed with a mitral valve problem around 10 years ago - shortly after I was diagnosed with APS. However, an Angiogram came back all clear. Despite that, I believe the problem persists. Just last week, the soles of my feet suddenly swelled up with fluid at work - making it painful to walk. My ankles, particularly my left one, have a perpetual edema problem, and I'm wearing compression stockings to compensate. I recently procured an Apple Watch 2; I use the heart rate sensor (with an app called HeartWatch) to monitor my heart rate. I've had it drop down as low as 45, even though my average for the day is about 80. I've hit 131 while driving home - are these symptoms of mitral valve problems too? I know that swelling ankles can be related to this. I work full time everyday, despite my APS.

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Hi DataOdyssey and nice to hear from you again!

After your diagnose and mitral valve-issues have you had a Specialist for our Hughes Syndrome? I also would like to know if you are properly anticoagulated.

I have Pulmonary Hypertension and 2 leaking heart valves today and I had TIAs in 2002 and were diagnosed some years later as I all the time had micro-emboli and they were not seen on a Scan of today. Triple-positive incl Lupus Anticoagulant since 2002 with high titres.

Then I got exstremely high bloodpressure several years and the BP did not resolve until I was properly anticoagulated with Warfarin. I must also have had micro-PEs as I today have these heart/lung-issues.

I have done several Ecocardiographies with doppler at the hospital for over 5 years. I believe 100 % on Anticoagulation as the key to our problems. We do not always feel when we are not ok. I did not know I had PEs, only knew I had exstremely high bloodpressure even on BP-drugs. Now my BP is ok but now I am properly anticoagulated.

45 is a very low pulse i think. The Cardiologist told me to get to hospital as soon as I was breathless. I exercise almost every day and am not breatless but get some cough sometimes. Heart problems are symptoms from Hughes Syndrome! I am not a Doctor but just wanted to tell you what has happened with me as we learn so much from eachothers stories and experiences. Put your own question here and you will get more answers.

Take care!

Best wishes from Kerstin in Stockholm

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Mine was discovered by TEE( transesophageal echocardiogram) you can search it on google. They decided to do this when I had my stroke, prior to my mitral valve repair.

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45 is low enough to be concerning. That would be the nurse side of me saying that. You might benefit from a 24 hour or longer heart monitor.

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Hi Patti. Sorry to hear of your illness. I've only recently come out of hospital with atrial fibrillation and tacichardia. Not sure if it's related to aps as I've been tested 3 times for aps antibodies, 2 positive, 1 negative so apparently I don't have aps although I display many of the symptoms including dvt, pe's, headaches, joint pain etc plus I'm still relatively young at 44. I obviously don't have an aps specialist so as you say it would be very interesting to hear his/her thoughts. Hope you get well soon. X

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Hi NeilNicholas01,

I am pretty sure your symptoms are caused by Hughes Syndrome/APS and that you shoudl try to get a Specialist and a Cardiologist who both are specialistzed of autoimmun illnesses and APS contra Heart-issues. So many here are positive and then negative on antibodies and a Specialist knows that.

Do not wait!

You are still young and today so much is possible to treat regarding this tricky and rare illness only if you get in touch with a Doctor who knows what he is talking of. Very few do!! It is a fight to get well with this illness!

Kerstin in Stockholm

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Hi NeilNicholas01. Thank you. And sorry to hear you were in hospital as well. With 2 positive and 1 negative I would think you do have APS. Of course it is up to a doctor to decide that but having read a lot of medical literature on it and talked about it with my own specialist, your symptoms are as important as your test results in diagnosis. No provider should ignore your clinical picture. I am learning myself the role the heart plays in APS, with the help of the wonderful supporters on here. And myself, I had minimal positive test results but my symptoms were so compelling and my doctor said it is difficult to get positive results. I hope you can get more answers in the days ahead. I just called my specialist's office and spoke with a medical assistant who wanted me to email pdf files of the records I might have. I'll pass. I called to let the doctor know what happened and recommend they request records with one of my signed forms and he clearly didn't want to participate. As a medical professional, he was also clueless to what a NSTEMI is, which is the type of heart attack I had. Frustrating!!

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Has any one with a mechanical aortic valve replacement ever was able to take an over-the-counter flu medicine if not do you recommend and anything that could be used to relieve the symptoms of the flu

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We are not medical trained here and I do not think you have the same illness as we all here have. You have put several other questions today on our site

ANTIPHOSPHOLIPIDSYNDROME/Hughes Syndrome/ Sticky Blood (all the same illness).

Better ask someone who knows!

Best wishes from Kerstin in Stockholm

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The answer is meant for Hagen D 320.

Kerstin in Stockholm

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Professor Hughes wrote a paper on this called “Syndrome X”. Basically the small vessels they can’t see get plugged because our blood is to thick. I called him because the drs were talking about many hear stents & open heart surgery. He told me not to worry they would find nothing on the angiogram. He was 100% correct. My mitral valve leaks but the hematologist suggested to leave it alone until I had to do something because it can be dangerous going off warfarin etc....I seem to get worse when they do things. Read “Syndrome X by Professor Hughes”

Designer16

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