Hi,

I can try to answer your questions but some of this you'll need to discuss with your doc:

1. I did not change my diet. If you're put on warfarin, sometimes people get freaked out by that because they tell you the types of foods that could interact with the medication. But it's about being consistent with your diet when you're on warfarin, not changing what you eat. .

2. I wear them because I had a DVT. I'm thinking if you didn't have a DVT or you're not experiencing leg issues, I'd not wear them unless a doctor prescribes them for you. You may want to just ask your doctor who is managing your care post PE diagnosis.

3. I can't speak to the bladder issues, but as far as a PE, most docs tell you activity is ok, but to go slow at first. I'd check with your doc on this because you have the added component of the bladder issue, but for me, I was up and exercising shorty after my PE, with my doc's consent. And my PEs were massive, both lungs. So it was light exercise initially.

I'm sorry for all you've been through, I can't imagine having to spend three weeks in the hospital, yuck! I was only there a week with my PE and couldn't wait to get home. What a nightmare to have the necessity for another surgical procedure when you're just starting anticoagulation treatment and trying to balance all of that. I'm glad that everything is on its way to getting better.

Regarding your specific questions, you'll get different answers regarding diet. And to some degree that will also be determined by which anticoagulant your hematologist decides to use for you. If you take one of the newer oral anticoagulants, you shouldn't need to worry about your diet or blood monitoring, similar to how the injections you now take are. If you decide to take warfarin, then the most important thing to remember is to be somewhat aware of vitamin K in your diet. Thankfully, my doctors never told me to limit that, but rather to try to be consistent. Some very old-school doctors still say to limit your consumption of leafy greens and other foods high in vitamin K while taking warfarin, but that really is an out-of-date way to deal with it. Consistency is the key. Some people take that to an extreme and try to know exactly how much they eat and measure it out to the microgram, which I think is also taking things too far. I personally think most people tend to eat rather consistently naturally, I mean, you either tend to like salads and vegetables and eat them daily, or you tend to eat little of them. Personally, I have been most successful with warfarin when I don't worry about my diet and just eat as I always eat. I'm permanently on anticoagulation and although I still have to test my blood monthly, but my blood has stayed in therapeutic range without dose changes for about two years. That's just my personal experience, if you take warfarin you'll just have to figure out what works best for you. And of course, you may not even need to worry about any of it at all if you take a newer anticoagulant.

I did/do still use compression stockings. But I had severe clotting in my leg also. I don't know that it would be necessary if you're not experiencing any symptoms of clotting in your leg. Personally, I probably wouldn't in that situation, but listen to your doctors' opinions and decide what you feel most comfortable doing. I can't imagine there being a really valid reason for you to wear one, but maybe they've thought of something I'm not.

Usually, I'd say do as much activity as you feel comfortable doing. You do have to learn to listen to your body and accept the limits it sets as you heal. The thing with you, though, is you have had another surgical procedure and you really need to talk to your doctors about what activity level they feel comfortable with for you. I don't know how your kidney procedure might be affected by you walking, if there's any risk of additional bleeding from what you had done or some other risk. To draw a (what might be stupid) comparison, I twisted my ankle a couple of weeks ago, and while the thing doesn't feel that bad now and I can walk on it, it does start bleeding again inside every time I use it. So my doctor told me that the combination of bleeding and anticoagulation has him far more concerned right now than whatever was strained or sprained or whatever. So he's keeping me off my feet for yet another unending week to try to let whatever is bleeding heal enough to stop bleeding. So I think that something similar might be the bigger concern for you right now, and you should ask your doctor what s/he feels comfortable with allowing.

At least you are home now, and I hope you're starting to feel better. Hang in there, sometimes recovery is very up and down for the first several months, so try not to get discouraged if you feel you're doing well then suddenly take a step back. Do whatever you can to keep your mind busy as well, that really helped me as I recovered.

Oh, rmb is so much more succinct than I am! Just read hers!

Thank you very much for the quick and informative responses. I'll definitly check with the doc about all the points.

Haha! Well, ShilosMommy's responses are generally far more thoughtful than mine. So you get the best of both worlds.

1. Diet, no change. Most up-to-date advice is to continue eating Vitamin-K rich foods, but to do so in steady quantities from week to week. I managed well for a few years as a Warfarin lifer, balancing dose, diet, and activity with little effort, until the GI doc told me to go off a few days for a procedure. That is a separate story.
2. Yes I wear compression, 20-30 mm Hg, and will continue to do so since I have Postthrombotic Syndrome. I've also seen 30-40 mm Hg recommended. Some sources advise that wearing them during early treatment can be a good idea for those who had DVT.
3. I was advised that activity as tolerated was ok - do what I wanted and felt up to doing. I was up to about 90% of previous activity level within a month.
As always, for the particulars of an individual case, a physician can best advise.

1. I also did not change my diet much.. i started off with very little vege intake.. I was always low on vege intake. I stabilized my INR in less than a week and continued to be inbetween 2-3 for 6 months. Maybe i got lucky who knows

2. Didn't use either. Follow your doctors advice.

3. You seem to have started to walks, I did as well. I started slow the first month and gradually pushed myself to do minor jogs. You will know when your limit is being stressed. About a month and half in, i started back gym training. It helped a ton, kept my mind off things and you relieved alot of stress. Take baby steps, your focus is on getting a good workout without killing yourself. This varies by person as I had a baby PE

So, today I start taking Marevan (warfarin), first day two pills, after that one per day (3mg). I also still need to take heparin injections twice per day until my blood check-up on 5th.

I'm a little worried, since I still have the double j stent (and will need to have it in for another month or so) that warfarin will cause blood in urine, which I have under control since 16th oct., one day after I was released from the hospital.

Anyone have any experience with taking both injections and warfarin, or did you immediately switch to oral anticoag. after hospital release? Any bleeding episodes during warfarin therapy I should watch out for?

I think most people start warfarin or some other oral anticoagulant right away. I didn't do both warfarin and Lovenox (heparin) after discharge from the hospital, but I've done them together several time over the years. Usually your doc will direct you to stop the injections once your INR gets close to being therapeutic or is therapeutic.

I've not had any bleeding issues being on both or on either separately, but the signs and symptoms for bleeding would be the same regardless of what anticoagulant you take, I imagine, so it would be the severe bruising, blood in your urine, stool, etc.

If you do have a bleeding incident while on warfarin, they're fairly easy to spot. Not everyone does and a small amount of blood in urine / stools / ... may not be serious. Just be aware that it can happen but don't worry too much.

It's pretty standard to do both the oral and injectible anticoagulants for a while. Warfarin is notoriously finicky and it may take a while to get your levels correct. You don't want to clot in the meantime, so you stay on the injectibles.

It's not that people stop the injections on leaving the hospital, it's that they stop them when it is safe to do so. Until they can prove the the warfarin is at the right dose (and everyone takes a different dose. Some people take 1mg, while others take 12mg), you'll stay on the injectibles to make sure you're safe. The checkup on the 5th should help figure out if you're on the right dose.

I don't know that you're any more at risk while taking both of the meds. Just keep an eye on things, and let your doctor know if you spot something that makes you nervous. Everything you describe sounds pretty standard to me.

Thanks for the info. So far, so good.

Last week I finally entered into the 2-3 INR range (2.4) so I could stop giving myself injections. Really do not like those since my abdomen was all yellow and blueish. :)

I'm now taking 2 Marevan pills per day (6 mg), and I have a feeling this is kinda a lot, but coag. doc says it's ok and my INR should stay around 2.5. Next check-up on Friday, so we'll see I guess. :)

On 26th I'm also finally getting my double J stent removed, I only hope there will be no complications. Urologist says INR 2.5 is ok for the procedure, since it's just a removal that takes a few minutes to complete.

Looking forward to having more movement freedom and one less thing to worry about. ;)

Glad to hear that you're doing OK! I wouldn't worry about whether your Marevan dose is "too high" or "too low." Everyone is different, the important thing is whether your INR is in the correct range.

For example, I take 5.5mg five days a week and 6 mg three days a week. I knew a woman whose husband took 2mg a WEEK to keep his INR in range. To her, my dosage seemed astronomical. Also, some folks take up to 20 mg a day. So, really, your dose falls neatly in the middle somewhere. I wouldn't worry about this as long as your INR is in range.