DawnUK's 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