New member, new diagnosis

[Bestgirl20]

Hey all, I stumbled across this forum via the NHS site and am hoping you can help me please.

I'm a 39yr old female and I developed DVT in my groin nearly 3 weeks ago. After 2 hospital stays, countless scans & failed thrombolysis treatment I've been discharged today on a week's worth of Clexane & daily Warfarin (5mg in the 1st instance.) I've got my first appointment at my local anti-coagulation clinic on Friday.

I feel completely overwhelmed by all of this. It's so new to me and I'm trying to get my head around it all. Up until now the most medication I've ever taken is antibiotics or pain killers. Any advice or support would be gratefully received as I feel like I'm entering a whole world I know nothing about. What should I expect on Friday? How often will I need blood tests? What's INR all about? How does DVT impact upon your daily life? After a serious clot when did you all start to drive? Do I need to inform my car insurance? What about returning to work? Exercise? Diet? So many questions! TIA

[maejane]

Hi welcome to the group! It is overwhelming and frightening I had my first episode of clotting in 1997 and then again in 2009, and to be honest nothing has changed in the support network. Do you know why you clotted? They might ask you for tests for hereditary blood clotting conditions if there is no reasoning for the episode. The inr clinic is where you have to attend to get your blood tested to keep in range of 2.5-3.5 (although some clinics have different ranges) it is a simple prick on the finger on a plastic slide that they put Into a machine that reads your blood, and they enter your details in the rat, and that's how they determine how much medication you need and tell you to come back to get retested. A dvt or PE has an enormous impact in your life physically and mentally you need a great support network, this site really helps! I recovered well after my first PE but not do well after the second I developed Pts in my legs, also pulmonary fibrosis due to undissolved clots. I am on lifelong anticoagulant. I didn't have to tell my car insurer and drove when I was able, exercise when you are ready take it slowly, the clinic will tell you about your diet you should have received a booklet telling you all about warfarin and its side effects etc, good luck for tomorrow don't be afraid to express your feelings and ask questions! X

[Bestgirl20 in reply to maejane]

Thank you so much for taking the time to respond. I had a doctor's appointment today to discuss my feelings about it all. I can't believe I've gone from being a healthy outgoing independent woman to a gibbering wreck! I've got amazing support at home but I think this forum will be my lifesaver too! Thank you 😊

[Bestgirl20 in reply to maejane]

Btw the reason for the clot isn't yet clear but there are several factors at play; I have deliberately lost 7st this year, I went back on COCP in August AND I also found out last week that before she died of PE my aunt had and 2 of my 2nd cousins have the Factor V Leiden gene. My consultant is pretty convinced I have it too but obviously they can't test for it just yet. I suppose I'll find out more tomorrow.

[maejane in reply to Bestgirl20]

We have antithrombin def 3 a hereditary condition that contributed to the death of my maternal granda and great grandmother. We had a 50/50 chance of it but my mum has then passed it to me (she has had 2 episodes of clotting) and unfortunately my son has too (he was tested when he was 12) they won't be able to test you until you come off the blood thinners, so all the best of luck x

[Bestgirl20 in reply to maejane]

Thank you 😊

[AlisonClark]

Totally agree with maejane. It is very overwhelming and I was like you, never really been ill and very rarely in the doctor's surgery!

I had an unprovoked PE 2 and a half years ago and have been on Warfarin ever since. It takes a little getting used to but you will eventually find your level. INR tests at the clinic will depend on how stable your INR results are, I'm currently 6 weeks between appointment! I vowed that it was not going to stop me doing things that I wanted to do and I just keep a positive outlook n life. My partner is Ugandan and I travel there. I have a Coaguchek XS device to check my INR while I am away, all has been ok.

I would say, don't let it get you down and down't be afraid to ask questions (however trivial you may think they are!) on here or with the anti coagulation clinic nurses.

[Bestgirl20 in reply to AlisonClark]

This is so helpful, thank you. It's wonderful to know I'm not alone with this. My doctor today said my feelings of anxiety and stress were absolutely normal considering what I'd just been through. I supppse you never really know how you'll cope with things until you come face to face with them. Thank you 👍🏻

[jackdaw50]

Hi,

Like you I had a DVT in my groin early 2013. Like you I was previously healthy and it was a shock. I found the best thing to do is to concentrate on getting better. They will find your INR level and monitor it so that's a positive. I am on Warfarin for life and the frequency of blood tests depend on whether you are on target with your INR. Recently mine have been weekly but have been one over 12 weeks. I also have to wear compression stockings for life which is a pain and I hate that aspect. The Warfarin taking is OK. I also suffer more from anxiety but, as you say, that is normal considering what you've gone through. I've started taking 'mindfulness' classes which help. For me life has changed and I know my limits. Having said that life is still good. Good luck with your results.