questions about dvt

[southeastastra]

anyone have any knowledge? have a few questions for my sister.

Have had two. One when pg. One in between dss.
There are a few people on here who've had this.
What do you need to know?

thanks really she's just concerned with the future and what will happen when she leaves hospital.

she's also wondering what could have caused it. she did have a slight fall. i'm googling for answers but there seems to be so much information out there.

I suppose it depends if she's pg or not.
Assuming she's not she'll get a heparin type drug straight after for about ten days. If she's discharged before the end of this period community nurses'll visit her in her home to give her the jabs a couple of times a day. At the same time she'll get warfarin. After the heparin dosing finishes she'll continue with the warfarin - usually for a minimum of six months I think (practice varies from trust to trust). It takes a bit of time for the effect of warfarin to build up in your system and a while for your system to adjust, so your sister will need regular blood tests to check her platelets (I think) and that they're within certain parameters. Mine was tested in the blood clinic up at the hospital. It's a pin-prick test. Over time the amount of time between these tests will lengthen as your body gets used to it. You get what is called a yellow book which records your dose and gives you some safety guidelines. Here there is an anticogulation helpline and you get assigned a dvt nurse. You can call any time if you have any worries.
If your sister is under fifty then she'll be tested to see if she has any genetic predisposition to having blood clots. This will help inform how her treatment is managed.
Hopefully she'll be discharged with a good prescription for painkillers. I found the pain with mine indescribable.
It may affect pregnancies in that she may need to inject herself with heparin as a preventative measure, but I'm sure she'll be advised about that if it's relevant.

Let me know if there's anything else.

H

that's really helpful thanks. (she isn't pg) and in her early 40s. did it take a long time for you to recover?

Second time (wasn't pg then) the pain eased off after a couple of weeks and had gone by six weeks. Was probably about three months in all before I felt properly fit again. I felt the warfarin probably had a big part to play in that though and it was only when my body had adjusted that I stopped feeling so wiped out.

are there certain things you have to avoid with warfarin?

anyone?

I was on Warfarin for more than 15 years (before I got pregnant with ds). Certain drugs that thin the blood like asparin can't be taken, as well as alcohol (!) which needs to be had with caution.

Also, don't get pregnant on it! (I did - ds is fine, but it can damage to fetus).

Apart from that, life on Warafrin is pretty much normal - although you bleed a lot more if you cut yourself!

HTH

my sister was wondering about alcohol (of all things do you have to cut it out completely, anything else

The advice I was given is basically not to change your habits. In other words, if you have a glass of something each night, carry on doing so. It's the binging every now and again that seems to be an issue; the INR test that she will need regularly will tell the relevant medical people what dosage of Warfarin she needs to be taking, so if she's had a lot of alcohol (but doesn't normally) it could mean that she gets the wrong dosage of the drug - which is potentially dangerous. (I'm not sure if that makes sense to anyone but me! )

Also, she will need to tell her doctor/dentist etc every time she visits them that she's on this drug as there are some things they will avaoid because of it.

ah that makes sense gumbo thanks. the dr has said she has to be on warfarin forever afaik! she's shocked atm

Sorry to hear she's on it long-term. It's not a particularly nice drug to be on, but she'll get very used to it. And at the end of the day it's keeping her from clotting, so it's got to be a good thing!

(I'm currently injecting myself with anti-clotting agents - believe me, Warfarin is a lot more pleasant! )

thanks gumbo, she's texting me atm. i think she's quite down. thinking of all the lifestyle changes she has to make.

she was fit and healthy two weeks ago. it's horrible isn't it.

Yes, it's a huge shock. For a long time afterwards you tend to realise that potentially there could have been a very different outcome... (I had several hundred clots in one of my legs. Within months of leaving the hospital & being able to walk without crutches I'd re-evaluated my life, sold up and moved countries!)

Hopefully your sister will be fine now that she's on the right medication and (presuambly) is being looked after by haemotologists. Good luck!

oh gumbo that's alot. thanks for posting. i'll direct her to this thread when she gets home (soon hopefully!)

Hope she feels better soon - she's lucky to have a caring sister looking out for her!

i do miss her being up and about with me the consultant told her she has to wear support stockings all the time too

Hello southeastastra. So sorry to hear about your sister. Hopefully she is being thoroughly investigated for possible causes of this DVT. If she smokes she needs to stop. Smoking pushes the risks right up.

Warfarin interferes with the chain reaction known as the clotting cascade, which is the process that brings about clotting. People respond to warfarin differently and so the dose required will vary between individuals.

Lots of things can affect warfarin - including alcohol, dark green vegetables, some painkillers, including those bought over the counter, alcohol and some herbal remedies, in particular St John's wort and cranberry preparations, and multivitamin tablets, if they contain vitamin K.

However, as yomellamoHelly (sp?) mentioned earlier, the key thing is to remain consistant with diet and alcohol intake, though obviously, not to excess.

Your sister will be given an information pack containing advice about diet, unsuitable medications and general advice about staying well and safe. She will have a yellow book that she should keep with her, which will contain important medical information and a record of her INR (blood tests) results and warfarin dosing.

Some people on warfarin do take aspirin as well, but it has to be prescribed as part of specific management for their clotting disorder. Generally, people on warfarin should not take any medication without checking with a Health Practitioner TRAINED IN ANTICOAGULATION. Sorry about the capitals, but not all health professionals know everything about warfaring treatment.

Some people can eventually manage self testing, using a machine and test strips that are similar to those used by diabetics to check blood sugar levels. Otherwise she will either attend hospital, or in many areas either the GP or local pharmacy can do routine testing and dosing.

There is a very active and knowledgable patient support group - the name escapes me at the moment, but your sister's doctor will be able to put her in touch with them.

Sorry about the essay - I hope it answers some questions, and I hope your sister feels better soon and adapts to her treatment.

HTH

That should be warfarin - not warfaring! I am getting as bad as my spellchecker.

thanks frogs x