Stroke Recovery: 3 Month Post-Stroke Consultation

I wasn't expecting another consultation for a couple of months but last Tuesday I got a call from my Consultant's secretary saying "The Dr has found the cause of your stroke and wants to see you this week to discuss your treatment", bricks were shat. We all know how long appointments take to come through so the fact that I was being seen within days felt rushed and urgent and that can never be good news. I returned to my desk and sat and had a silent panic / flap. I told my friend what happened and she advised calling them back and asking what was wrong with me and if it was something terrible. I called back and the secretary was really reassuring, she said that if it was something life threatening I'd be rushed in via ambulance immediately and I was to try and relax and enjoy spending time with my son. I tried so hard to chill out but I was a mess, still shitting bricks, having panic and anxiety symptoms and generally flipping out. After approximately 34 years, Friday came along and my Mum and I took that dreaded trip to Newcastle and here's what went down.


First things First 

Rhiannon and I spent a lot of time speculating what could be wrong, I was expecting something like Atrial Fibrilation which is really manageable but on top if that and in a my state of panic I had also convinced myself that I had bowel cancer, kidney failure and heart disease. Rhiannon had set herself on Vascular Dementia or HIV, we're a positive pair. When the consultant opened the door to invite us into his office we noticed that he had a mate (another Dr) in there with him which immediately made us think SHIT, there's always two when it's bad news. Turns it the news wasn't so bad but I still have no idea why he was there...he was a nice guy though. 

The first thing that the consultant did was get my MRI scan pictures up because he knew I was keen to have a look at my brain, he went through each image and explained what had happened. The two light areas are the two spaces where the stroke had damaged my brain, I think he said that the lightness or darkness of the patches of damage show how recently they happened and the damage of my noggin was definitely due to the old stroke. He also reconfirmed that there wasn't any damage done to my Internal Cartoid Arteries that is most common in older stroke survivors. 



Diagnosis 

He then went through the blood results that had come back and said that my blood had high levels of two anti-bodies; Anti-cardiolipin and B2 Glycoprotein and these fitted me right into the box of someone with Antiphospholipid Syndrome or, APS or, Hughes Syndrome. Obviously I know pretty much nothing about this at the moment but in a nutshell it's sticky blood and the fact that I went on a high Estrogen pill caused my blood to thicken right up and whack a clot on my brain. I asked some very important questions that my consultant had already anticipated because he's dead good like that;

Why have I developed APS?
Pregnancy, most women who don't have APS before pregnancy often develop it afterwards, it could be something to do with the change of hormones or it could be something dead complicated and sciency that I have no clue about but the good news out of this is that it means that it's not hereditary and it's very unlikely that I've passed anything on to Freddie. 

Can I still have more children?
Yes, but with very strict monitoring and I would be induced early and very likely need a section. Sadly most women are diagnosed with APS after suffering multiple miscarriages or still births so the fact that a stroke was the indicator or my APS seems more like a blessing now. With the right medication and monitoring 80% of women with APS go on to have successful pregnancies so as you can imagine the decision to have another baby isn't something that we'll be taking lightly. 

What are the symptoms of APS
From what I can gather it's pretty much symptom free hence why it's hard to diagnose and most people are only diagnosed after having suffered, DVT, Strokes, Heart Attacks and Multiple Miscarriages so again, I think I'm pretty lucky. 

Watch the consultation vlog here 


Treatment 

My treatment will change, I need to go on a blood thinner rather than anti-platelet; I'll be joining my Granddad at the Warfarin clinic, this is the main thing that scared me, Warfarin seems like such a scary drug but so many people are on it and have normal lives that I'm coming round it it. The regular check ups at the clinic will work wonders for my anxiety as the monitoring will really put me at ease and maybe stop me from pestering that poor pharmacist at my local pharmacy for blood pressure checks...maybe. I'll be on Warfarin for the rest of my life and will probs have to get some fancy warfarin medical jewellery because it's better to be safe than sorry. The consultant said that there's no great rush to start the warfarin so I've got time to get loads of tattoos and piercings before I do. 
Warfarin does cause birth defects so during pregnancy I would get Heparin injections to keep my blood thin to try and avoid pre-eclampsia and another bloody stroke, or worse. 

Going Forward 

I have mixed feelings, there's no cure for APS so it's all about ongoing lifelong treatment which seems daunting but it's also tough shit, I have to deal with it. I'm happy to have a cause for the stroke and the fact that I'll get ongoing and regular monitoring really puts me at ease. The thought of being on Warfarin forever still scares me a little and there's the pregnancy dangers but ultimately, I'm glad it's a condition that thousands of people live with and go on to live normal and healthy lives. My stroke seems like such a teeny factor in this mental journey that my body is taking me on.






14 comments

  1. It's brilliant that they found the cause and that there is treatment. You were definitely very lucky xx

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  2. So glad that they found the cause.

    Candice x

    natalyaamour.com

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  3. I'm so glad that you have some closure (if you can call it that) on the cause of this. I know this has defined this chapter of your life but I think now you have a diagnosis you get to take back the control and dictate your future. You're a boss and your journey has seriously inspired me issy x

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  4. It's good that you now know the cause! Wishing you all the best for the future x

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  5. I hope getting more information has put your mind at ease a little. It must be a lot to process! I totally understand why you panicked given the circumstances.

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  6. So great that you have a diagnosis and know more about what's happened and how you can treat it going forward x

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  7. Love you Issy. You know we will be here for you every step of the way, so glad you have the answers you need. <3

    Erin || MakeErinOver

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  8. You just need a lovely little Warfarin tattoo .... maybe a "tramp stamp" one ... LOL ... the problem is, it may be mistaken as a tattoo of the name of a "Game of Thrones" character!
    Seriously though, I'm just so glad there IS medical intervention to prevent further problems .... XXX

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  9. I can imagine it is a daunting and uneasy feeling moving forward after your stroke and all the uncertainty surrounding it. But your positive outlook is so inspiring. I really wish you all the best and so glad to hear that medically you are being well looked after. xx

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  10. I can't imagine how worried you must have been after receiving that phonecall lovely. It must be a huge relief to finally know what the cause was and how you can move forward. You're such an inspiration hun xx
    The Girl In The Tartan Scarf

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  11. I can't imagine how worried you must have been after receiving that phonecall lovely. It must be a huge relief to finally know what the cause was and how you can move forward. You're such an inspiration hun xx
    The Girl In The Tartan Scarf

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  12. It's been such a tough few months for you - at least you have a diagnosis now and a bit of a plan despite it not being anything more than ideal.
    Em x

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  13. I'm really glad you were able to find some answers and treatments are available, as scary as finding out something like this must have been!

    Jasmine xx

    Jasmine Talks Beauty

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  14. I’m glad they’ve been able to diagnose it and now you can take the right measures of care moving forward

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