Letting you hear that I had a big clot,(calf to hip) and your body takes care of it, the body has a natural process that disolves the clot.
I am 4 years post diagnose and 2 years off anticoagulants .
The veins in my right leg were totally occluded, which is why it swelled up three times it's size.I never had any surgical procedure to remove the clot, the body took care of that, mind you I now suffer with PTS, but you learn to live with it.
I walk, I breath and I'm up right, not six foot under like some people I know that can't call themselves DVT Survivors.

You made me feel better. They told me I had the clot in the popliteal and the femoral. The femoral was the one that is totally occluded.
I feel so good when I walk, but have trouble somedays doing it with other problems. My swelling was very bad when I went into the hospital. I still have some, but its only been 2 weeks since I got home from the hospital. Were you on Coumadin? Also, how long did you have to stay on the anticoagulants? They told me 6 months to a year.
Not familiar with PTS. You seem to be active. Is that what helped you? Thank You for sharing all this. I feel I am a Leukemia Survivor, being diagnosed in 1998 with no transplant. Total remission since 2003 now, but on meds for the rest of my life.

I had a clot from ankle to IVC (above belly button) last May.
Because I have stents from IVC most of the way down the iliac vein, it will never clear on its own because the metal has a good grip on the clot and there's no natural thrombolytic stuff going on, like there is in the endothelium of normal veins.
I have developed collaterals all over the place, to shift some blood about, some are massive and varicose so they stick out like you've put a string of sausages on my leg and belly.
I can still walk, not as fast or as far as I'd like, but like other people have said, I'm still alive, that's the main thing.
Frustration, numbness swelling and pain are my main problems! Some days the thigh on my bad leg is larger than my waist, which made my daughter laugh when I told her! Didn't make me feel quite like that, but hey...

Susan,

Much like Dero, I also have a series of DVT's going from my ankle to hip. That took place back in 1992.

Your body natural creates something called Urokinase which is a thrombolytic (clot dissolver). Depending on the extent of damage and number of valves damaged, most patient will have some form of PTS (aka Chronic Venous Insufficiency or Venous Stress Disorder). Here is a link to a patient article pertaining to this condition:

http://stoptheclot.org/Newsletters/Natt_Newsletter_Spring_2006.pdf

I'm not a big believer in vascular intervention (surgery). There are member of this form who have had it and done well, but there are others who it hasn't helped.

In your state there is an excellent Thrombophilia (blood clot disorder) Treatment Center:

UMDNJ-Robert Wood Johnson University Hospital*

New Jersey Regional Hemophilia Program
Division of Hematology
One Robert Wood Johnson Place, Room #378C, CN-19
New Brunswick, NJ 08903-0019
Phone: 732-235-7223
Fax: 732-2235-7115

I'm a big believer in seeing an actual blood clot specialist when problem persist. Most doctors, though treating patient with blood clots, are far from being a specialist.

Regards,
Tom in Connecticut

Thank You for the information Tom. I printed it out. I am very familiar with Robert Wood Hospital. Its right near my mother, and have been there many times. I am going to see how I do, and if I have to it will be there or Deborah Hospital in Browns Mills who saved my Fathers life twice in his lifetime.
I have to think Positive thoughts, and not look into the future. Just take one day at a time. Right now I am feeling fine. The pain I have is getting up from the recliner or in and out of bed. Thats when the leg feels so heavy. The swelling is very slight right now from when I was in the hospital. Its only 3 weeks, and I know I have to be patient and give it time. Thank You

I don't think my clot was "huge" compared to some of the other folks on this site. Mine was only about twelve inches long, but the vein was mostly occluded and even now (six years after diagnosis), that vein is still partially occluded.

That said, though, I don't really have any issues with that leg. It is a little bigger around than the other one, but doesn't really cause pain or limping or problems. My body absorbed as much of the clot as it could and the rest became part of the vein wall. My body has formed other pathways for the blood in my leg and so I don't really have any problems. Never developed PTS or anything and I was only on thinners for that DVT for six months.

It did take a while to reach this point in recovery though ... so just be patient, you're improving every day even though it may not feel like it.

My femoral vein was also totally occluded, with a series of clots from calf to groin. I was first diagnosed last November and had been doing very will until last week, I'm currently in the hospital to get my INR under control.
I think the biggest thing is to remember to take care of yourself. My problem is I just didn't feel sick, so I forgot to make myself a priority. Walk when you need to, put your leg up and rest when you need to, watch your diet and try to limit your outside stress. All of those things seem like they would be very easy to do, but in the end turn out to be incredibly difficult when you are trying to power through the day and get stuff done.
All the best to you.

Thank You: I am doing okay with the leg itself. My problem right now is terrible nausea, and I had some stomach and back pain. This only started when I started Warfarin. Is this concidence, or can Warfarin cause all this. I wrote this in another posting, where I feel like I amhaving Gallbladder problems. I know Warfarin or Coumadin has to build up in your system, and this all started 2 weeks after I started my treatment. I am calling my doctor on Monday. I cannot take this feeling any longer. Somebody told me to switch to the Brand Name Coumadin, as maybe the Generic is causing a problem.

Warfarin can cause GI upset, ie gas, bloating, nausea, indigestion, etc. I don't know if it out right causes gallbladder problems, but your diet can affect your gallbladder. Have you changed what you eat since being on warfarin?

Hi: I started to diet after the holidays, and was only on my diet for 4 weeks before I found out I had the clot. So no I cannot say my diet changed since starting Warfarin. I just think this is so odd that this all happened after being on the drug for 3 weeks. Today I have no pain in my stomach or back. Just periodic nausea. Nobody has said that it can cause these GI upsets so far. I am glad to hear someone say that it can happen. Its just too weird that I would have all of this just as I was starting a new drug. I am wondering if they can cut down my dose or something.

If I remember correctly, GI upset was listed as a possible side effect in the materials I received about warfarin when I was in the hospital, but if you google warfarin side effects, GI issues often come up. So, it probably is from the warfarin.

If they cut your dose, then that kind of blows getting therapeutic with your INR. Have you talked to your doctor or pharmacist about it the GI issues? They may have some ideas to help you. Some people do feel better when they switch from warfarin to coumadin (or vice versa) for some side effects.

Hi: I am thinking about switching to the Coumadin also. I have to see what my doctor says on Monday. Can you explain what you mean by Thereapeutic with the INR. I still do not understand the PT/INR. I skipped my half a pill like I said I was going to do, and have felt just fine all evening. I am leaning more to the Warfarin then the Gallbladder, but I am willing to do the ultrasound just to be sure.
If I am repeating myself here, please excuse me. This whole thing has me jittery. The leg is feeling pretty good, and I do not want any mishaps over the medication.
Everyone has been so helpful to me.
Susan

Your INR measures whether your levels are therapeutic for preventing a clot. They usually want your INR between 2-3. If your below 2, then you're at a greater risk for clotting, because your level is not therapeutic. Above, 3, then your INR level is considered too high and if it climbs far enough above 3, then you're at a greater risk for bleeding. So, the doc plays with your dosages to try to get you in therapeutic. It can take time, and you may not see the affect of a dosage change, even if a slight change, for a few days.

I'd suggest not changing your dosage unless your doctor tells you to. INR management is tricky and if you start making changes on your own, it will be that much harder to get your INR in the proper range, and it makes your doctor's job that much harder to find a proper dosage for you.

You explained it very well. I do exactly as I am told, but I just skipped that half pill last night to see if I got any relief from the nausea etc.
I did feel good.
Its hard for me to determine what is going on. I will take my pill tonight. The medication I am on for Leukemia, also has a tendency to sometimes cause some nausea and other thins. Its hard to deal with 2 different diseases at the same time, and I am sure many others are going through the same thing. I really hope my doctor will see me tomorrow, so we ca work things out.

I hope so too, and yeah, when you have other things going on, it can make things more complicated, and difficult to tell what is what. Don't get discouraged. It will all get sorted out.