New diagnosis : First post! I’ve just... - Hughes Syndrome -...

Hughes Syndrome - APS Support
9,493 members9,580 posts

New diagnosis

GillyA
GillyA

First post!

I’ve just been diagnosed with a blood clot on my brain and possible APS (subject to 3 month test). Been started on short term heparin and long term warfarin. Feeling pretty nervous about it all.

I normally lead a busy hectic life with lots of travel, including months at a time in Africa. The consultant seems to think that once stable I should be able to return to this through self monitoring, but I must admit to being really worried that I won’t be able to do a job I love. I’ve also just realised how many green veg I eat, a minor frustration in comparison, but the immediately apparent one.

Really welcome any thoughts or advice. Feels like the worst possible time to have to come to terms with this sort of diagnosis.

17 Replies
oldestnewest
KellyInTexas
KellyInTexasAdministrator

Hello GillyA,

It is a bad time... I agree.

But - you do not have to stop eating your greens- you just have to stay very consistent. That’s vital.

Where are you ?

GillyA
GillyA in reply to KellyInTexas

I should be in Nigeria, but at the moment I’m in Buckinghamshire NW of London. Fortunately I’ve ended up with Prof Cohen treating me as the clot was found by the UCLH neurologists at Queens Square

KellyInTexas
KellyInTexasAdministrator in reply to GillyA

I was asking where you were, so I could recommend an APS specialist.

You have one- very good. ( she’s also my consultant hematologist.)

You’ll have to see yourself how you do with the finger stick machine. ( a coagucheck xs would be the one. )

The antiphospholipid antibodies can interfere with the reagent on the test strips , and make them unreliable for a APS patients. ( it can give you a lower reading than a vein draw value, which is always more accurate for us.)

I’m just letting you know, so you will not be disappoint if you can’t depend on it. Some people do very well on it- you would need to trial it along side your vein draws ( within 20 min or so) and compare for 6 months or a year.

ghicworld.org

For general info

You should consider a rheumatologist. I would let professor Cohen guide you here. Hopefully she would think your NHS rheumatologist is very keen, if not, she will know how to advise you.

I have been advised By my former Dr at London Bridge, ( who is now only NHS) to continue my care with professor David D’Cruz. I have not yet had my first appointment with him.

As I’m in Texas, I can’t see doctor on the NHS,.

I live in Texas- but had a hard time continuing to clot initially- so my doctors sent me to Dr Hughes/ Prof. Jordan.

GillyA
GillyA in reply to KellyInTexas

It all feels very wierd at the moment. Unlike many others on this site I haven’t had to fight for a diagnosis, it’s rather been thrust on me. My optician picked up papillaedema during a routine eye test. The ophthalmologist she referred me to diagnosed IIH. 12 months later there was a minor deterioration in my visual field.

I mentioned this to my neurologist at my annual check up (I’ve had well controlled epilepsy for 20 years). This resulted in a full round of scans in the last month or so which found the clot and confirmed the hypertension. All the doctors and radiologists keep saying are you sure you don’t have a headache.

I feel fine. But I’m now coming to terms with a potentially life changing diagnosis and having to take warfarin. I’ve been told I’m lucky, no stroke, no major symptoms, we caught it early. Intellectually I know this is correct. Emotionally I’m self injecting and taking warfarin and worrying about my job and I feel fine!

GillyA
GillyA in reply to GillyA

Sorry this sounds like a major whine. Just confused and dumbfounded. Not helped by the fact that the initial real query came in March, all the tests got caught and delayed by covid, my OH dept wouldn’t let me return to work in Nigeria without a diagnosis and the drs are saying at least 2-3months to stabilise.

KellyInTexas
KellyInTexasAdministrator in reply to GillyA

Well,

We have had a similar path.

I had never heard of APS .

My Opthomologist saw my optic nerves were thinning- called my neurologist ( I was having seizures) - together they sent me to a neuro ophthalmologist.

I did have a host of prior problems- classis APS- undiagnosed. I also have had a clot in brain- vein not artery. CVT

HollyHeski
HollyHeskiAdministrator

I agree with your specialist, no reason at all to carry on with the job you have and love.

All a bit worrying at first but you get used to the new regime and adapt.

Keep eating your greens once on warfarin, key is to have same quantity daily, your dose of warfarin then accommodates your INR.

Hopefully your stable by the time travel is permitted again.

There never a good/right time GillyA but you’re very lucky to have been diagnosed before anything major happening like a stroke and seems like you have some wonderful people looking after you.

You will get to do whatever it is you want and live your life 😁

back in the day, doctors told warfarin patients to avoid high K foods all together. Now that the importance of a healthy diet is finally taking center stage, the advice has changed to; take the warfarin that fits your healthy diet, and not vice versa.

I too was diagnosed after blood clots in the brain. A follow up MRI scan done a year after dx and treatment showed that almost all the stroke damage was gone.

Also, I too was alarmed at how this dx would change my life. But here I am, 20 years later, happy, fit, recovered well from 2 arthritis induced surgeries. The major change for me was giving up my plans to learn to ski, and no more white water raft trips. That and making sure I stop every 60-90 minutes in a car ride to walk around and stretch, AND, to request leg room seating on airplanes ( keep a note signed by your doctor!)

MaryF
MaryFAdministrator

Hi, there is a very good book around 'Eat on Warfarin' which a lot of people find most useful, if flying please make sure you get measured for compression stockings, it is a good idea, and keep in good contact with your main consultant re what is safe for you to do at this time. MaryF

Hello GillyA

I remember when I had my clot on the lung out of the blue and they also found mini clots on my brain. I was devastated. I hated taking the warfarin as I try to eat and live a natural lifestyle. Life does get better with time and taking the Warfarin and self monitoring does become the new normal. I pretty much get on with my life just as before and don't give it all too much thought from day to day. This forum has been great because it makes you realise you are not alone with all this and that helps a lot. You will get to know very quickly which foods affect your iNR but don't feel you have to stop eating veg. I live on veg mostly and it is fine.

Re travel, insurance can be tricky but I have travelled around. You can get a pen apparently that you can use if you have a bad bleed from a cut or something which is like an antidote but I heard about that years ago when I first started my warfarin journey. I live in Cambridge but took trips to London see prof Hughes and am now looked after locally.

Ask any questions and also order yourself a book called sticky blood explained by Kaye Thackeray if you doter out to have APS. it s available on Amazon.

Very best wishes

Kaz

Hi GillyA

As you can see already from the lovely members on here how helpful every one is and how much information you will receive from everyone which when your newly diagnosed is such a great help also reading through all the posts I found very helpful when I first joined .I had a stroke out of the blue 2years ago at 55 I ended up in hospital for 2 wks thank god I was with my sisters and they got me to hospital very quickly and I was treated straight away so I was lucky to have no really lasting problems just a little pain in my leg and arm but that's managble now while in hospital my lovely stroke doctor did all kinds of tests as unbeknown to me he suspected APS, now reading your post I was transported back to exactly how you feel now ..so I hope the next part of my story helps you to see life does not have to change or stop after APS in fact it can even get better as once on right medication you start to feel so well .I was due to go 2 Australia to visit my daughters the wk I had my stroke after I came out of hospital still with no APS results as it takes 3 tests at 12 wk intervals to know you have it I told the doctor I'd changed my flight and was goin to Australia in 5 wks time, he was a little reluctant to let me go to say the least as I'd not had APS results yet but I was determined I was going so he put me on asprin and plaivx and gave me advice on what to do during flight .like constantly walking no alchol lots of water which I followed and I flew to Australia and had a great holiday I came home after 6 wks and got results that I had APS so he moved me to WARFARIN now like you I hated the thoughts of going on warfarin I felt my life would change so much in as far as eating what I wanted having a drink work and holidays which I love , I had been a smoker for years but gave them up and still off them since my stroke, so I felt really upset by it all, was my life to be so different now but you know what it isn't, its actually better my doctor told me warfarin is worked around your life style not the other way round so yes you need to find your level of what warfarin is needed to keep your blood right, I was on heprin injections for awhile took a bit of getting used to injecting myself and a lot of lovely bruises as result 😏till my levels were found but they were and then it's just the warfarin tablets and I was fine some times, luckily for me not often the doseag needs adjusting but with regular testing it works great ,so talk to your doctor go through all you eat and drink what your life style is ,like you I love greens and I also like to have a drink work and travel I still do it all and my WARFARIN works around me of course I'm more aware of what I eat and drink and I also self test which I find an absolute life saver as it stops me worring , I can check my levels if I feel I've eaten or had that extra few drinks, I found after probably a year I was able to tell when I felt my levels were off and been able to self test is great and when I travel it's been brilliant to have, I also have taken up walking I was definitely not a very health conscious person before as I said I was a smoker but with a little few changes like walking and diet changes I feel very well I even walked the CAMINO last year which if you'd known me before you would know how big a deal that was 😁but I continue to live my life and have the same fun I always did just now without the constant fatigue and joint pains i had before , now my blood is the right level I feel better then ever so please dont think your life wont be the same it will take a few wks maybe few months to get your levels right but the wait is worth it every one is different of course and your doctor will be your help line it's so important to have the right doctors as not all of them know enough about APS but if like me you get a good one then you will be ok and this site is a god send for information and just for helping you not to feel alone it's great to hear and read other stories and know life can be ok with APS .

KellyInTexas
KellyInTexasAdministrator in reply to July9

What a fantastic post!

Thank you for this. There’s an interesting contrast the warfarin literature is all very stern. The nurse at the anticoag clinic said one of the advantages of self testing is that you can be much more flexible with lifestyle, food and alcohol. She wasn’t encouraging me to live a bad life, but accepting that occasionally you may want more than one glass at a family party or a special meal.

I actually eat pretty well and one advantage of working where I do is that there is far less junk food or opportunity for snacking. But I do enjoy a glass of wine or a g&t and occasionally more than one or two.

Fortunately the flights aren’t too bad (6.5 hours) and perhaps I’ll pay to upgrade 😎.

Having lived with epilepsy which didn’t start until I was in my 30s I do know I’ll get through this, I think it’s a combination of shock at the diagnosis and worrying about if warfarin and my lifestyle are compatible. Of course going through all this uncertainty on my own during lockdown has made it so much harder, but my big sister came through and bubbled with me for 10days as soon as it was allowed, which really helped.

It’s really helpful to hear positive outcomes, because inevitably you focus on the negatives and risks. Thank you

KellyInTexas
KellyInTexasAdministrator in reply to GillyA

It all really depends on the patient- but you will need to be quite consistent with your greens on warfarin.

GillyA,

Welcome to the club! You're very fortunate to have caught it in time. Sounds like you're in good hands with your docs. Some patients have an extremely difficult time regulating on warfarin despite efforts to be consistent. I was one of them. Name brand Coumadin seemed to be a better fit for me for some reason. And there are many things that can exaggerate the effects of it (further thin your blood): alcohol, grapefruit, antibiotics, CBD, etc. Start reading labels, many OTC medications have a warning like, "do not take this if using blood thinners." I'm also positive for the Lupus Anticoagulant which interferes with the reagent in the self testing machine. I was getting wildly different readings compared to the vein draws. Not reliable for me. I was rarely in my target INR range. You will want to test frequently. I was getting tested at least once a month for 12 years. Then in May 2018, I had a severe headache for a few weeks. Despite taking warfarin everyday, I had a clot that caused a stroke. Like I said, I was hard to regulate (I was on 17mg of Coumadin). I also hadn't had my INR tested since January!! My son was having a lot of problems at school and I was so focused on him that I negelected to take care of myself. In February 2019, I had a second stroke caused by a bleed (take my learning the hard way about warfarin, CBD & antibiotics). I'm now on enoxaparin/lovenox injections as I have to be on something due to my mechanical heart valve. Like I say twice a day, "grab your flab & jab!" Humor goes a long way! I saw somewhere, "Autoimmune Disease: because the only thing tough enough to kick my butt is me." I wear funky compression socks every day. They've become my defacto style. Definitely a must if you fly a lot.

Do any members in your family have autoimmune diseases? Many of us on here have close relatives with Multiple Sclerosis, Crohn's etc.

Holley

Washington, DC

GillyA
GillyA in reply to Holley

When I went through the self injection with the nurse I think it’s the first time I’ve ever been grateful for that muffin over my jeans.....

You may also like...