katybops

Wishing you good luck! The haematologist was quite positive about it. Said it interacted with so much less than Warfarin (and I'm on a bucket load of other medications), and didn't require the constant INR tests. I asked about reversing it and she said look, if you're in an accident that you're losing blood at that rate this won't lose or buy you any time. It's got a short half life so there are things they can do to make sure you don't bleed out if you're being operated on, etc. I felt quite reassured. I have to add at this point that I'm just repeating what I'm told and that I have not googled it. I have tendencies to google things to death and become a Google GP about subjects so I'm just trying to roll with it

Not especially. It has a short half life and taken twice a day. Doc said if you're in a situation that you're going to bleed to death it won't make a jot of difference.

Not really, other than Warfarin interacts with a couple of other medications that I'm on and the last time I took Warfarin it took 8 months to stabilise my INR. I just had a DVT in my arm which is the first spontaneous clot I've had (I had a PE in 1999 after a c-section) so they wanted to put me on something. Apparently this one is now approved by NHS / NICE so they were quite willing to put me on it

Thanks James. They've put me on the newer one rivacoxiban?

I just got put on it today

Just thought I'd let you all know that Harry underwent surgery without complications. Unfortunately it wasn't successful as the cause of the SVT he's been suffering was found to be something a little more complicated and they were unable to ablate that area safely. Also since the surgery he's been having more episodes. We see the surgeon again in 3 or 4 weeks to discuss further options. Re the PSD, he tested for the genetic mutation so I guess that is a definitive answer that he has PSD. He is heterozygous for it - meaning he only inherited it from me, not his dad (who as far as we know does not have it). He was anticoagulated during surgery as a precaution and thankfully it was not a problem.

I don't know the answers - I was quite dubious as to whether this was going to be accurate and they were insistent that it was. He is heterozygous for PSD (i.e. just has the gene from me not from his dad), and his levels were about 29 and 29.... mine were 11 and 15 so they are higher than mine were when I got tested... but still below normal range. With the genetic testing done is it likely he'll 'grow out of it' ? Hopefully the heparin will reduce clot risk. Thanks for your good wishes xxxxx

Well, boo, he has it

Just a quick update in case anyone is interested. The DR (first a fellow and later a consultant) at Seattle Childrens Hospital both wanted him tested for PSD and said that the test should show conclusively whether he has it by now (7). They say if he does have it, given the length of the surgery (5 hours) they will recommend anticoagulating during but not before or after. *fingers crossed for a negative result*

Thank you SO much James... best wishes to you and yours too xx We are seeing the Hematology dept at Childrens Hospital on Tuesday so I guess we'll talk to them more about whether they will bother testing him etc. Scary times X

Hey James or anyone else that might know the answer to this My 7 yr old son Harry is about to have a cardiac ablation procedure. It's a 5 hour general anaesthesia and the consultant was explaining that while they treat the left side of the heart small clots form around the 'thing' (sorry, not tech enough here) which will usually disperse without issue but if they treat the right side they'll anti coagulate because the clots are more potentially threatening. I mentioned that I have Protein S Deficiency and that we don't know if Harry has it, so he's referred us to a Hematologist prior to having this surgery done. It's my limited understanding that PSD testing in a kid his age isn't necessarily going to be reliable so I'm a little nervous. If they test him he might show negative even though he has it? Is he at more risk of clotting in that case? And If he does have PSD at 7 does this mean he won't have the same dramatic clotting issues that an adult has? Yours nervously Katie x

Thanks!

Something has just occured to me about the Vit K issue.... having decided not to go ahead with it. I apologise if I've ever posted this before, I have pregnancy brain and can't remember but would appreciate any input. Breastfeeding while on Lovenox..... tiny amounts may pass into the breastmilk, correct? Ergo, will I be putting my baby at increased risk for clotting and therefore should I do the Vit K after all? Yours confusedly. K x

in my experience the thigh hurts more!