Hi everyone, I wanted to introduce myself - I'm Kirsten and wife to Daniel (39 and very fit and healthy) and we have 2 sons 7 and 9... Dan suffered a HA and CA on the 19th July - Long story short we were told to prepare for the worst and he has pulled thorough! SO HAPPY! But 3 days ago Dan tested positive for APS (needs another test in 3 months?) He has been put on warfarin as well as being on statins and beta blockers and other meds (he's allergic to aspirin/NSAIDS) Dan is currently now recovering in a rehab hospital as due to the CA suffered hypoxia of the brain but the damage is mild - his memory is most effected as well as needing to regain his strength and some coordination - but hopefully this should come back!
We hadn't ever heard of APS until 3 days ago, and Dan will be is hospital for another 4 - 6 weeks ish in rehab - so I'm trying to find out as much as I can before Dan comes home, any advice would be greatly received! Thank you!
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KirstenW
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I should also say he had 2 stents out in due to them finding a 98% blockage to the main left artery to the heart. No pains on the lead up to the attack - very sudden!
HI and welcome, where are you located? You have clearly had a rough time, but thankfully you have had a swift diagnosis and things will now improve immensely. Sometimes other members of the family provide clues to this disease. perhaps having other autoimmune diseases, including Thyroid problems, and or early heart attacks, strokes and also miscarriages We are here to answer questions and provide support and there are also quite a few men on here! MaryF
Thank you Mary! We're based in Warwickshire. It has been a rough month but I think it's so encouraging that Dan's improvements have already surpassed what we expected and at a faster rate. There doesn't appear to be any daily history that points to this. Should I be getting our boys tested? They are only 7 and 9.
No please don't test them, they are too young and it does not run in every family, in my family there are many members with the disease and that does happen in some. However if something suspicious took place then yes. I presume you have a dedicated specialist, but if not these are the recommended ones in your area who understand Hughes Syndrome/APS - Sticky Blood, otherwise known as Antiphospholipid Syndrome!
Hi Mary, I have just been told his specialist is Mr Hamway at Good Hope hospital and that he has to stay under him? He's not on your list.. I'm wondering if he's a heomotologist and not an APS specialist. I've never spoken to him but he must be who ordered the test whilst Dan was in Good Hope hospital last week
Hi and welcome to this friendly site where we try to help eachother!
My name is Kerstin (yours Kirsten) and I have APS and the same drugs Daniel has got.
I am sure he will now be fine since he has got an APS-Specialist and a diagnose. These two things are the most important things to have and also anticoagulation for our thick blood of course.
I suggest you read "Sticky Blood Explained" by Kay Thackray. She has also this illness and it is also very good for relatives to understand how it is to live with this illness. She writes about the different symptoms. There are not the latest drugs in it (written some years ago) but we still have the same symptoms. It is a very good book that many of our members have today.
Please give my regards to your husband! I am sure everything will be fine very soon. Stay with us here and tell us how it goes for him.
Hi my heart goes out to you! Yes as my friend b4 me have given youbgreatvadvice! Having been diagnosed is half the battle! Unfortunately it took this to get DX'd! It's been a lifetime for me and many others due to this being rare! Yes please get thT book by Kay Thackray tha KERSTIN said to! It helped me and gave it to my sister to understand this disease! I made my sister get tested for this and yes he has it too! Our Mom must've had it! It CB b familiar, but agree with Mary ur boys are young yet to be tested! I too had left main heart disease in my mid fortie! I'm from USA, NEW YORK, where it's very difficult to find SPECIALSTS in Hughes Syndrome! You have come to a very friendly forum and we try to help everyone! Please keep in touch with us and let us know how u get on! GODSPEED!!!
Thank you - I have just suggested to Dan's brothers and sisters that they get tested too - there are 8 siblings all together - I'd hate for one of them to have APS and not know!
Hi - this is similar to what I went through 11 years ago. I think it was harder for my wife than me as doctors were not positive about my outcome for the first 6 months. The hardest for me was adapting diet and stopping some contact sports and dealing with losing sight in one eye as that's where my clot went. We didn't test our sons. Now the main issue I have is sometimes getting tired while travelling or coping with diet when overseas. I hated getting blood tests in the hospital so when local doctors surgery got one things got easier and then when I got my self test kit even better.
Thank you David, gosh you and your wife must have gone through so much, and you've come so far - it's great to hear! Dan is still in hospital, and eating what they give him, so we haven't even given diet a thought - he was very fit and healthy before but is there a certain diet to follow with APS? (sorry if that's a silly question!)
Well they have said it all but just wanted to comment on your beautiful photo! If there are any other questions you can think of no matter how weird you may think them- ask away-there are probably others on here that have had the same thing.
What a nice picture of the two of you. So grateful that he is with you after suffering such an ordeal. Everyone is correct so far but just wanted to send him and you well wishes from the US and a very speedy recovery for him. I can tell he already has a great support system in you and his family. Like everyone has said, if you need anything about Hughes Snydrome this is the place to find it (aside from medical treatment). Sending love and light your way.
Thank you everyone, it's great to hear other peoples experiences.
I don't think we have been given a specialist yet, not one that we've spoken to anyway but maybe that's because he's still in hospital and has been moved the the rehabilitation hospital.
Is there a certain diet he should be eating with APS? at the moment he is just having whatever is on the hospital menu?
Your picture is lovely. I have Primary APS and I have had two heart attacks and three TIA's. The only diet I have ever been prescribed was a heart healthy diet. I have three stents and my heart is monitored regularly. I do drink filtered water and am careful what foods I do eat. I generally eat alot of fresh fruit and vegetables, not so much red meat or pork. I very rarely eat sweets or sugary things as well. I dont know if this helps, but it has helped me. I was told when I had my youngest son, now he is 27, I wouldnt see him graduate from university, now I am 52 and he is raising his own son. I attribute this to lifestyle changes I had to make such as these. I also see a hematologist, an Internist, a Cardiologist when I need to, and a Respirologist sometimes as well. I hope my reply helps a little with what you wanted to know.
Thank you! It's been a long month but now we can see the light at the end of the tunnel and although it's not great news, it's good to know people live with this and manager it.. I need to find out who our specialist is!
Thank you it's good to know to be prepared. Dan is now on Warfarin. He is allergic to aspirin so is on an alternative clop something?! I can never remember the name!
I too had cva, Am female. At age 53, was totally fit, Able to do cartwheels and splits, not overweight and worked full time. The stroke effected my left side... Causing paralysis. It had made me unable to walk.
Don't fret... Good news is I am walking again now. My left hand grasp is not what it was but I can manage. I had 4 months of rehab and occupational therapy, my point is tell him to stay focused and be totally committed to his therapies as this will be his saving grace.
Encourage him, tell him I said " the mind believes whatever you tell it, tell it good, positive things". My memory comes and goes.
As far as the "warfarin, (aka Coumadin) diet, yes you do need to watch vitamin k intake.
Mainly the things that are very high in vit k such as kale, spinach, lettuce. I initially monitored every mg of every food I put in my mouth. That was a big mistake... if you eat regularly what you/he normally would eat, they will adjust the warfarin/Coumadin around him. Not vice versa. It also will not make you both crazy! Thankfully like you, my husband is very supportive. Much wellness to you both💕
Thank you so much for this information.. At the moment Dan is having his INR tested really often, yesterday it was 1.5 and they want it between 2-3 so they upped his warfarin. He is in the Rehab hospital and I think they are just focusing on INR for now - I feel they are kind of overlooking the seriousness of APS! Or maybe they're not - maybe it all kicks in after he leaves hospital with the GP. We have a meeting with his docs this week from the hospital so I will be asking them lots of questions then.. I'm finding it all a little frustrating as the doctors are never there to speak to and yesterday didn't return may calls!
Hi, Please try to find the nearest APS-Specialist from the list Mary did send you! Preferably as soon as possible! Talk with the secretary as APsnoFab suggested.
It is important to have an INR high enough to avoid more damage like microembolies or DVTs or PEs.
Kerstin
Welcome to the group. You look like a wonderful couple and I wish you the best and offer prayers as I don't have any advice to add at this point but the others have given great advice.
Would you be kind enough to point me to an article where Dr Hughes recommends a Gluten Free diet. I would like to show it to my doctor.
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