Journal

 Here are some of the answers from my appointment. It takes a while to process the answers and I am still a bit confused, but I am thinking the session went well, although I am still left with more questions. x x

Very unlikely it was a clot caused by a mosquito bite in Sorrento in Oct 2006.  The Dr thinks it came from the leg, as most clots do – 95%, but she cannot be sure. I suppose I will not get the answer to that one. The reason why the Doppler did not pick up any clots in my leg might be because the clot was higher up in the leg and this is sometimes missed.

Costocondritus is a condition that can be made worse by stress and she said over time I will learn to distinguish between that pain and another PE, but she expects that I probably will have to make a few trips to A&E (ER) during this time to make sure.

Overall, she classified my PE as a ‘Provoked PE’ – i.e. caused by the flights. In the future, I will have to have one injection for an outbound flight and one on my return. Also if I have the flu or go on a coach journey I will need injections and support stockings. It is very important to get stockings fitted by someone who knows what they’re doing, as the wrong size can make the situation worse or just do nothing to help.

I will have the thrombophillia screen 4 weeks after I come off of the Warfarin and then she says it takes about 4 weeks for the results. So my follow-up is on the 17th December, although they were going to book me in on 24th December!!!

She added that even if I do have a deficiency or disorder they will still treat my condition as ‘provoked’ and so will not have to go on Warfarin for life. She said there are a lot of people with coagulation problems who do not go on Warfarin for life and do not have PEs. I am not sure how I feel about this. On one hand I am happy that I will not be on Warfarin, but then I feel I am waiting until I get an ‘unprovoked’ PE before they put me on Warfarin for life – this feels risky.

For pregnancy I will have to have two injections a day into my stomach. Dr said these were safe and they did not cross the placenta and so would not harm the baby. However, that means I will have to have over 660 injections throughout and that is not very appealing to one who hates needles!

Lung: Not much wiser on this really. She examined the CT scan results from the US and said I would probably still experience some pain, but that the results seem to indicate that the PE was small and got stuck in the smallest part of the lung? She could not see where it said I had 3 – but the Drs in Us said I had 3??

Heart: She said it looks from CT scan that there was no damage to the heart and that the scan I had here confirms that.

Clotting:  D-dimer test s when you’re actively clotting and the x-ray checks to see if you have a chest infection. CT scans are used to check for PEs, but not in the first instance. I will not get a CT scan to see if clots dissolved because she said if I found out they were then they would only be used to stop the Warfarin immediately – never heard that before? She added that the body of evidence is that clots will be dissolved after 6 months. Also she said between 2 and 3 is the therapeutic range for the majority of people based on 50 years of research.

She did not think there was a connection between hyperthyroidism and clots, but I am going to get my thyroid tested anyway.

Periods: She did not think periods caused your INR to drop, but she did say it was normal to have more clots in the blood because they’re heavier.

She said I would not need an IVC filter – preventative measures for clots, as mine was a provoked clot. They are working on the assumption that I will not get another PE if I avoid ‘provoking’ my clotting system – however, this unnerves me slightly – feels a bit risky, but also feels good that I don’t have to be on Warfarin – I can’t win?

The thrombophillia screen is basically to see whether my sister and other family members will need to take injections in ‘provokable’ situations – i.e. flights, pregnancy etc.

She also added that Aspirin makes no difference to venous clots or to prevent DVT, she said Aspirin only aids arterial clots which can cause heart attacks and strokes.

Preventative: Losing weight and moving around and staying hydrated are the top 3 ways to help prevent clots – basically exercise. I have bought myself a treadmill and cross-trainer (don’t worry; I am not going to go crazy training, just gradually get fit).

Pregnancy: As I said above, I will need injections, and I will be monitored more closely. I do not need to be on any meds whilst trying, as the main hormones kick in after you’re two or three weeks pregnant, so you just have to be on the ball and plan tests regularly.

Overall, I have mixed feelings about the appointment. I came away feeling happy, but then I pondered on things and analysed (I do annoy myself doing this all the time!!) and started to think of more questions. I was in with her for an hour and I did ask a lot of questions, which she was happy to answer and she said it was good that I had brought a list, but now I feel I want to ask more in-depth questions.

I basically still feel that I do not know what damage I have sustained – on one hand I want to know and on the other hand, I feel like I don’t want to keep asking and find out something that will make me even more worried – it’s confusing. I am going to write down three or four questions to take to the next appointment, but I am sacred about coming off the Warfarin in the meantime, but I am just going to have to manage.

I know I still have great support here and so that makes me feel better. I guess it’s a lot to take in and I can’t expect to know everything – I guess it just brings it back how horrible it’s been and even good news takes a while to be processed (and to work out what is good news). Anyway, let me know your thoughts x x x

  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?

Ok, so this is my first journal.

Just going to update my circumstances so that I can keep a tab on my own progress, as I found reading others journals really helpful.

October 2006 - Suspected PE (I believe it was misdiagnosed) after a flight from Sorrento, Italy, back to the UK. Was covered in mosquito bites and feel they may have contributed in some way, along with the flight, to the blood clots.

Over the next year and a half had chest pains when breathing deeply - was diagnosed as having costocondritus or a bad cold - no tests or medication given.

April 2008 - whilst on holiday in NYC I became very anxious and short of breath over 5 days. Was taken to hospital - CT scan done- diagnosed with 2 small PEs in left long and one larger one. Flew home (don't know how I did that - loraziopan helped) a week later. INR was up to 6.7!!

On warfarin now until Oct 20th - then I will have the tests.

My care by the NHS had been poor - long story.

This site has helped me enormously and I feel so empowered by the intelligent, caring and sensitive people who have been through the same trauma as myself.

I have an appointment with a specialist next week (Aug 20th) and so will post an updated journal on this. I have a list of about 22 questions so far. I had to insist on this appoinment and so I am worried that they will be dismissive of me, but I am not going to be dismissed, as I have the backing of this forum, which has made me a stronger person.

Thank you to all x x x