Wife of newly found out APS husband... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Wife of newly found out APS husband...

KirstenW profile image
27 Replies

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 profile image
KirstenW
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27 Replies
KirstenW profile image
KirstenW

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!

MaryF profile image
MaryFAdministrator

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

KirstenW profile image
KirstenW in reply to 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.

MaryF profile image
MaryFAdministrator in reply to KirstenW

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!

NHS Specialists

Professor Caroline Gordon

Consultant Rheumatologist

Department of Rheumatology

City Hospital

Dudley Road, Birmingham

West MidlandsB18 7QH

Telephone: 0121 627 2535

Dr Will Lester

Consultant Haematologist

Department of Haematology

Queen Elizabeth Hospital Birmingham

Queen Elizabeth Medical Centre

Edgbaston, Birmingham

West MidlandsB15 2TH

Telephone: 01216 272000

Dr Steve McKew

Consultant Rheumatologist

Department of Rheumatology

Royal Shewsbury Hospital

Mytton Oak Road, Shrewsbury

ShropshireSY3 8XQ

Telephone: 01743 261000

Dr Siobhan Quenby

Consultant Obstetrician

University Hospital Coventry

Clifford Bridge Road

Coventry

West Midlands CV2 2DX

Telephone: 02476 967528

Dr Benjamin Rhodes

Consultant Rheumatologist

Department of Rheumatology

Queen Elizabeth Hospital Birmingham

Edgbaston, Birmingham

West Midlands B15 2TH

Telephone: 0121 627 7957

Dr Deva Situnayake

Consultant Rheumatologist

Department of Rheumatology

City Hospital

Dudley Road, Birmingham

West Midlands B18 7QH

Telephone: 0121 554 3801

Dr Jonathan Wilde

Consultant Haematologist

Director of the Haemophilia Centre

Queen Elizabeth Hospital Birmingham

Mindelsohn Way

Edgbaston, Birmingham

West Midlands B15 2WB

Telephone: 01216 272353

MaryF

KirstenW profile image
KirstenW in reply to MaryF

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

Lure2 profile image
Lure2

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.

Best wishes from Kerstin in Stockholm

KirstenW profile image
KirstenW in reply to Lure2

Thank you - I will get that book!

Manofmendip profile image
Manofmendip

Hi and welcome

My colleague, Mary, has given you some good advice, which I totally agree with.

Let us know how things progress.

Best wishes.

Dave

Debbweb01 profile image
Debbweb01

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!!!

KirstenW profile image
KirstenW in reply to Debbweb01

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!

Robertsmom profile image
Robertsmom in reply to Debbweb01

Im in ny may i ask what drs upu see its so hard to find a dr that specializes in aps. Thanks

Lure2 profile image
Lure2 in reply to Robertsmom

Hi Robertsmom,

Please see my answer on your question from today. This is an old question.

Kerstin in Stockholm

Davideccroft profile image
Davideccroft

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.

KirstenW profile image
KirstenW in reply to Davideccroft

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!)

Ozchick profile image
Ozchick

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.

Tammylola2012 profile image
Tammylola2012

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.

💛☀️Noelle

KirstenW profile image
KirstenW

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?

JanetL profile image
JanetL

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.

KirstenW profile image
KirstenW in reply to JanetL

Thank you Janet! Dan pretty much eats that way too anyway so that is great! So pleased you're able to see your son raise his own family!

KirstenW profile image
KirstenW

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!

Lure2 profile image
Lure2

As others already have said be sure that you get an APS-Specialist (Hughes Syndrome) involved now!

Take care of yourself also. It will be ok you will see.

Kerstin in Stockholm

KirstenW profile image
KirstenW

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!

Wittycjt profile image
Wittycjt

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💕

Cindy

KirstenW profile image
KirstenW

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!

Lure2 profile image
Lure2

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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