DawnUK's Journal

  Hello everyone, here is a copy of my questions for my appointment tomorrow. They are also notes/prompts based on answers I have receieved from other members on here and so bits might not make sense to you, but I thought it would be helpful to share them anyway. Thanks to everyone who helped me compile them - I have tried to put them in some kind of order so that they get answered - red questions are the main ones.

Please feel free to use them yourselves for appointments and share the answers you get. I will type up mine as soon as I get them. I don't expect I will get them all. Take Care Dawn x x

P.S I do have a front page that was a bit personal, but it bascially gives an aetiolohy of my previous medical history just so I can set the scene for my Dr before diving in with the questions. x x

Lung damage – lung function test?   Treadmill stress test?

What were my oxygen saturation levels and what are they now? (94 – 100% is good). 

Why do I still experience pains in my chest – mainly in my left lung area, but also in my right at times. I was told you cannot feel clots, so what is this pain? – there are nerve endings near to the top of the lung?

What were the results of my heart scan – was told it was normal limits by the Drs Secretary – what does this mean – have I sustained any damage to my heart? I still get heart palpitations – had these worse over past few months, but always had them.

D-dimmer test – what is this and what were my results? Only is raised when you’re actively clotting? Over 3000 ris classed as really high?

How do you detect new clots - what are the tests and are they done routinely or only when one is presenting with symptoms?

Do consistent re-clots always damage veins/internal organs?

Is there a connection between hyperthyroidism and clots – what test do I have to rule this out? Underactive thyroid – blood thick/sluggish.  Have had problems with thyroid in the past – my mum was very ill.

Can periods cause your INR to drop? I get very tired and short of breath at his time. Periods very heavy and painful – a lot of clots in blood – was on my period which was particularly heavy when I flew out to NYC.

What else causes INRs to drop or rise suddenly apart from food/drink?

How do you know the INR range for me is therapeutic for me, especially as I still get pains and shortness of breath? Pains in my legs.

Why do the NHS not use CT scans like in the US, as it is stated in NICE guidelines that this is best practice for detecting PEs?

Why use Warfarin and not Clexane (Lovenox)? Clexane causes some people to clot?

Why have I not had support stockings or an IVC filter – preventative measures for clots? Will I have to have an IVC filter?

How will they tell the difference between Costocondritus and a PE in the future?

What are the tests to differentiate?

Especially as symptoms similar as anxiety attacks.

How likely am I to clot again?

What are the thrombophillia tests and how reliable are they?

Protein S (58-125 normal range) and C deficiency, lupus, beta2glyco, antiphospholipid antibody syndrome (APS), factor II mutation?

 If I test positive how do these affect my health and that of any children I have?

Preventative:

What preventative measures can I take to stop this happening again?

Are there any alternatives to Warfarin for life – Aspirin?

What are the long-term risks of taking Warfarin for life? Side Effects?

How will starting a family be affected by my condition?

Do I need to be on Clexane whilst trying for a family?

 Will my pregnancy be categorised as high risk and will I be under a consultant for the duration?

What is a VQ scan – can this harm the baby?

How long after do I stay on the meds?

Travel/flights/alcohol

Do my family members need to be tested for genetic disorders? My dad had been very poorly after flights.

Follow-ups and aftercare seems limited– why is this? Will Dr B be my new Dr now – how does this work?