I agree with rmb. I was told that a follow-up ultrasound wasn't normally done and that they just assume that eventually the clot goes away unless you are have a change in symptoms. so I told my dr. I was having new pain and she ordered another ultrasound.

We could seg into a nice health care insurance rant right now easily. All this is so stupid and I hate having to deal with insurance crap.

Tom covered the INR testing issue more thoroughly than I ever could... very interesting stuff.

What really bothered me about your doctor's comment was this:

"what's the point? You're going to be on warfarin for life anyhow."

Er... no. There is a "probably" missing from that sentence.

When I had my third ultrasound, (several months after I was told I would be a lifer on coumadin) it took forever and I was sure something was wrong. The technician said, "No... actually, you have grown so many new collateral veins that we couldn't find your femoral artery." They couldn't... FIND it.

My clot went almost right up to my groin, and the ileo-femoral thing was pretty much trashed-- some blood flow, but very little, mostly full of that post-clot crud that's not dangerous but blocks the vein.

I've been off coumadin, as you know, for over three years now, and skiied for three seasons. (If there's enough snow on a good day, I'm going to try for a day or two this season.) The second and third ultrasound informed the decisions to take me off coumadin even though I was a lifer.

Even if I have to go back on coumadin at some point, these three years have been very important to me. And that recanilization, I think it goes on for well over a year, more like two years.

Also, what if a new anticoagulant is developed, or you decide to join some study? At some point, I would insist on at least one more ultrasound. If they will only give you one, and there is no crisis or new pain (as bikeswimski observes) then I would at least insist on one at 18 months. Even if you don't go off coumadin, I think it's very helpful to know what the general picture is, how much blood flow you have, and how much collateral vein growth. That may be one of many factors that helps you decide what risks you take, how much you fly, exercise, etc...

Best,

--Catalyzt

You've brought up some good points for the ultrasound argument. And maybe my "blood doctor" is the wrong guy to ask...seems like people who see Vein specialists get scanned more frequently too.
Normally I like people who tell it like it is. I don't require a lot of hand-holding in general, so I think the thing that ticked me off about his attitude was hearing the doors slam shut. As if there are no other possibilities beyond what they've seen and done before.
Guess I'm naive about it, and a little out of touch with healthcare in America, 2009, but I was expecting a more proactive approach.

Laura, You sure hit the nail on the head on that one. It really irritates me that insurance companies dictate what is medically necessary yet they rape us on insurance rates. Luckily I have a decent insurance company that paid 90% on my hone INR monitor and my doctor was all for saving me some money.

Laura Lu and RMD: I have recently changed Drs for some of the same reasons you have taken the time to share. My current primary care Dr that is managing the warfarin for me took the time to share with me the following:

"Managing people on anti-coagulants is a high risk and a low pay area of our practice". He went on to explain that the insurance companies (maybe not all) do not allow the Drs to bill for the time it takes for them to retrieve, review and convey INR lab results to us.

I felt like saying, "try being and real estate agent and see how much you will work for free before seeing a pay check!" But I also bit my tongue and asked if he had a suggestion that would make him feel fairly compensated, and I will get the care and attention I deserve. He said their were different codes that can be used with the insurance companies.

So what I have received in return are two visits, short, checking INR with the little machine (whatever it is called), and a "see ya in two weeks". Another complaint: I have bilateral PE with Infarc, and can you beieve he did not even listen to my lungs even after hearing me say - "my chest really hurts." Can you believe I waited a month to get in to see this Dr.

Yeah, $$$ trumps compassionate care in most cases. I know we have to be our own advocates when it comes to our health, but I didn't expect I had to be a friggin' battle-axe!
Reading these stories makes me more jaded by the minute. It's not just the lack of compassion, or the been-there-done-that "show me the money" attitude but the actual danger these people put us in. No wonder doctors crab about the high cost of malpractice insurance...some of them will need every penny of it, I'm sure.
I wish someone would weigh in with a positive story here pretty soon...I'm really getting in a bad mood.

LauraLu: Sorry to add more negativity with my last post. I was somewhat surprised to see several people being treated as I have been with two Drs in my town. I'm searching for the positive in this.

Oh no, YOU'RE not putting me in a bad mood; I'm doing that all by myself! :)
I think it's essential to hear the negative experiences we all have, and I appreciate that I'm not alone in my dismay with the "system".

Ok, just a positive story, but it's not related to PEs or DVTs.

My Gastrointestinal doc is a wonderful, carring and attentive doctor. And I personally like him. Like I think in another life we could have been friends.

My ulcerative colitis went out of remission in June and I've been sick on and off ever since. We're experimenting with new meds which are somewhat scarey to me due to potential serious side effects and they make me feel kind of lousy. I have to have my liver functions tested every month or so to make sure the drugs I'm taking are causing damage. Whenever I have new blood work done, I call for the results and my doc always calls me back personally, sometimes when he's in his car, trying to eat lunch, on the way to the hospital. He never has his nurse call me and give me directions for care. He does it. And when he calls me, he always asks me first how I'm feeling, how I'm doing. He'll even ask me what's new. It's small stuff but it really creates a relationship, you know. The only issue I have is that he runs late, but I figure if it's because he's taking time with his patients, how can I complain about that?

When I'm in his office, he actually PUTS HIS HANDS ON ME. That's a big complaint I have about my current PCP. She rarely touches me. I think that's f***ed up.
I'm not a leper, I'm your patient.

I've reached that point where I've moved from frustated to pure anger. So, when I get to that point, there's no turning back for me. I'm on the hunt for someone new; I just have to get some recommendations and do some research. I've already taken the steps of ordering all my medical records to be sent to me so I can give them to whomever I end up seeing.

Remember the movie "Network" where Peter Finch's character yells, "I'm mad as hell and I'm not going to take this anymore!"? Amen, dude.

Okay...great story to add. My PCP is a fantastic man...he really, really cares and is mentioned in Phoenix magazine as one of the top docs in the area. He always calls me as soon as possible with any test results...even calls me on Saturdays or Sundays. He will listen to every concern I have when I am in his office and if I have a problem of any kind, he will get me in to see him that day. The nurses at his office (and the physician asst.) are also terrific. They've always taken me seriously. Even before my PE was diagnosed and I knew something was wrong because I was so short of breath...they ran breathing tests on me (gave me an inhaler to try), did an EKG, and had chest x-rays done (all in one visit)...and when they were unsure about me...referred me that day to a cardiologist for further testing. He has always tested me right away if I have concerns...I was having some leg pain that concerned me last October...he sent me straight to the lab for a d-dimer and got me in for an ultrasound that afternoon. I can just not say enough wonderful things about this man....I feel that I have been very fortunate. And the doctors that he has referred me to have also been great (I always feel like he is great, so he will only refer me to other great doctors). Even now...I have just discontinued warfarin (my third day off)...and they are working out a good plan for me. I am getting a full physical on March 16...my hematologist will take a d-dimer test at the end of one month off warfarin. I asked her if I could be tested monthly, so she wrote me a standing order. She also wrote me a prescription for a box of Lovenox that I can fill whenever I will be traveling any long distances next.

So there are some really good doctors out there. We should start creating some type of list of great doctors, offices, and hospitals for each major area.

Nancy

So,am I the only one with a great hemotologist around????
I can NOT complain about anything she has done for me, in fact, she even told me that we might go for a bike ride this summer,
you believe this?
For those who have been here for a while, know that I have nothing but a good rapport with the Thrombosis Assessment and Treatment
unit here in Ottawa, the whole staff has been extremely good to me.
What can I say?
On the other hand, my surgeon for my gall bladder is another story...LOL Same hospital, different floor.

I like the list idea Hopper!
On the news this morning there was a bit about websites where patients log complaints against doctors, and how some docs want their patients to sign a waiver that they won't post on these sites. But something like an Angie's List for doctors, where patients talk about positive experiences and doctors they would recommend could be a nice reference for people.

I just was out on a website called RateMDs that rates doctors from all over the country based on patient feedback.

There's also a forum on the site with a couple of posts about a specific doctor threatening to sue the website. How about not paying attention to a subjective website and spend that time TREATING YOUR PATIENTS.

Yeah!

Anyway, doctors shouldn't be worried by one or two bad reports (unless it's clearly malpractice). After all, we respond to eachother differently, and my experience with my doc is not going to be the same as your experience with the same guy. Plus, people can ALWAYS find SOMETHING to complain about.
But when you see a long string of negative feedback about the same doc, and the complaints are about quality of care and not merely personality conflicts, then that seems more like a public service. That seems fair.
I guess the problem is determining what is truthful critique and what's slander.

I'm going to check out that website RMB!

Ohhhhh laura..........you are so right about that........

My insurance co wanted me to be discharged after 3 days.....my Dr went berserk. Needless to say, he won, but yes.....those pencil pushing idiots at their cushy desks are the ones that are really in charge of whether or not we are treated properly, now aren`t they......gggrrrrrr