D.v.t.

[Jack]

I'm well aware that we are at greater risk of thrombosis than the general population, but I've never had it. Until now!

I've had a lot of vascular pain in my left leg since the week end and had my suspicions of what it might be. However, because I already had two hospital appointments for this week and was getting a bit fed up with it all, I decided that it might go away by itself. It did not , so I went to get it sorted today and spent the afternoon at the hospital. They confirmed it and started treatment, so I've now got more pills to take and follow up visits to the clinic. Damn!

Yes, I know how dangerous it is and that I should have gone right away, but I didn't. OK?

[Sangye]

Shoot, Jack, I'm so sorry. I understand how it gets-- another symptom pops up, and you just think, "No, I'm not gonna go in. That's it. I'm drawing the line." I do the same thing.

As someone who has clotted more than clotted cream, I can say you must consult with an excellent hematologist. They have to know about the Wegs-Clot connection, otherwise they'll just treat you like a typical case of clots. That happened to me.

My JHU rheumy sent me to the Chief of Hematology at JHU, who told me I have to stay on blood thinners the rest of my life. I was initially on coumadin and got more clots. They switched me to the dreaded heparin shots (Lovenox) for the next 2.5 yrs. I switched back to coumadin in December and it's not so bad. The way they're managing coumadin now is very different than just a few years ago.

I know you're probably still in the "Dammit" phase. I don't blame you. If you want more info, I can help. Clots 'R Me....

[Jack]

Thanks Sangye,
I had Heparin and Warfarin today and have to go back tomorrow to get my levels checked. Because of my reduced kidney function, they are treating me quite cautiously with low doses at first.
I know nothing about DVT so I'm open to all information, but I expect I'll soon become an expert.
Interesting that you should suggest seeing a specialist. Against my wife's better judgement, I am just going to my local hospital. Perhaps I should let my main (Wegs) consultant know what is going on.

[Sangye]

Listen to your wife--

They'll need to do a thorough evaluation (bloodwork) of genetic factors that predispose you to clots. I have a partial genetic factor (heterozygous Factor V/Leiden) , but it alone is not enough to cause clots. A history of massive clots + Wegs + mild Factor V puts me in the "Lifetime blood thinners for you" category.

I'm concerned that you're not in the hospital. Until they get your blood anti-coagulated to the proper level, you really shouldn't be walking around much.

When they get to the Coumadin diet, they might say you have to limit your intake of foods high in Vitamin K, or that you must eat the same amount of them every day. Both are wrong and are outdated. That was hammered into my head originally, so I really fought switching back to coumadin.

The new way of thinking is to eat the same level of vitamin K-rich foods on average throughout the week. Most people eat pretty uniform diets anyway, so it's not that hard. And instead of cutting back on your veggies to suit the coumadin, you eat what you normally do, and they adjust the coumadin level to you. VERY big difference. I eat whatever I want, and my coumadin level stays great.

[Jack]

Hi Sangye,
I hear what you say. I'm spending most of my time sitting with my leg up at the moment because it takes the pain away and I really don't want to be in hospital. Far too dangerous!
I have no intention of taking up any special diet, I eat far too little at the moment because of my other problems. Also, I'm vegetarian (lifelong) so I am trying hard not to become malnourished at the moment.
I doubt that there is anything genetic in my condition, but I could always be wrong . I come from a background of large families who all live well into old age with little in the way of medical problems.
I'll give my consultant a call today and let him know what's going on.

[Sangye]

Yeah, no blood clots in my family, either. Good Greek genes. It's doubtful that you have a full gene, but a partial gene can predispose you. At any rate, any time someone gets a blood clot they do the panel of blood tests routinely.

The pain will go away within a day or two as the anticoagulants get to work. I'm glad you're not up and about much.

[Jack]

Just got back from another day at the hospital. I went to see the anticoagulation nurse who organises daily treatment at home, but she was not happy about treating me with the standard regime. I've had to have more tests and an ultrasound scan so that another consultant can give specific instructions. They gave me some more Heparin (called something else) and Warfarin and hopefully the home treatment will start tomorrow.

[Sangye]

Smart nurse.

[Jack]

I think this may turn out to be an interesting journey. Or am I jumping the gun here?

Although diagnosed with DVT, in the past I have had a couple of problems due to excessive bleeding so I sort of thought I would be at lower risk. I have now started treatment, but only at half the usual dose because they wanted to be cautious in their treatment of me. I was told that this would mean that it might take a while to get my clotting level down to the reqired INR of 2.5 However, here we are on day 2 and my level is already 3.3 and so I don't need any medication today!

I wonder what is going on? Or perhaps this was the reason for their caution?

[Sangye]

Jack, some coumadin comments for you :
It's perfectly normal for it to take awhile to get the INR in range. Lots of trial and error. It's particularly difficult the first several days, as they have you on Lovenox (heparin) while the coumadin levels are building. So by day 3, you're on nearly double-duty anticoagulants.

An INR of 3.3 is not scary high. But anytime you're above range, be extra careful about bumps, falls, etc.... Make sure you get a medical necklace or bracelet that says you're on coumadin.

I got massive leg and lung clots while my lungs were hemorrhaging. So having bleeding doesn't mean you can't get clots. Sometimes actually it predisposes you, though I don't remember the physiology of how that works.

Coumadin takes a few days for each dose to kick in. So if your INR is low and they raise the coumadin, the INR won't go higher for another few days. It's tricky business sometimes.

I don't remember if your calf muscles are weak, too. If so, that can predispose you to clots because the muscle action helps pump blood out.

When you get a prescription for coumadin, ask for/ insist on "Brand name only." The generic has been on the market a long time, so they'll automatically give it to you. Generics aren't a perfect match with brand names-- they allow up to 20% less of the drug. So balancing INR on a generic can be more difficult. And the generics can come from many sources. Little differences in coumadin make a big difference in the INR.

At the risk of you throwing your shoes at the computer screen, I'll say it again : don't delay in getting an excellent hematologist on board.