Information For The Recently Diagnosed

What kind of medical team do you need?

Speaking from experience-and its been a major pain- I've gone through a couple of neurologists and hematologists. I finally have a team I like. This took some time to build. You have to shop around. Many doctors and dentists are not educated on what it takes to help out a clotter. If you really like your doc., but she doesn't know much about clotting disorders, you're going to have to educate her yourself.

Your basic team should be a hematologist that specializes in clotting not bleeding (Here is a link to help find a doctor) and an internist who will work with your hematologist. If you have had a DVT or stroke you should probably add a vacular doctor (vein specialist) and perhaps a neurologist.

If you are thinking of having children than find an OB-GYN who will work with your hematologist. If the docs you pick won't work with each other-pick another. They must be able to work as a team.

As an example, I'll list my team (I've had several clotting episodes and more than one stroke). I see more doctors than the average person with thrombophilia because of my stroke:

• OB/GYN - I see her once a year for the usual women stuff.
  
• Hematologist - I talk once a month with my Dr. Clot. When my INR is going nuts, I speak with him more often. When it is behaving, it's only a monthly finger stick with my home INR machine and then I call in my results. If my INR is not behaving, I'll go in for a stab to check my INR (and remember to ask for a butterfly needle!). I also discuss the latest anticoagulant drugs that are currently being researched so that I can keep up with what might be able to replace coumadin (when there is another option out there). Your hematologist is going to be the most important doc. you work with -if you are on anticoagulant therapy. You'll be getting your INR checked often. If you don't like him/her search for another.
  
  This year (2011) my doc and I discussed the fact that with a therapeutic range of 3.5 - 5.0, I still was clotting (most folks are kept between 2-3 on coumadin). We decided to try Arixtra® and I've been on it for 5 months now. So far so good. No clots. But I'm leaving the info up about Coumadin® because the majority of folks choose it as their anticoagulant. Arixtra® isn't for everyone. It's a daily shot. Just like taking any other LMWH.
• Vascular Surgeon - I see him once a year for a vein scan of my really bad veins and for getting those nifty prescriptions for compression stockings. We discuss the new technology out there for bad veins. There are many websites now where you can order compression stockings. You don't even need a prescription anymore.
  
• Neurologist - I see Dr. Head once a year for my usual MRI scan to see how my head is doing. If I'm having a problem, then I see her more often. Most people won't need this kind of doc. But I had a major stroke.
  
• Internist - My internist does everything that my other docs don't. If I have cold I see her etc...

If you haven't had a major clotting episode or stroke you probably won't need Dr. Head or Dr. Vein. Also, remember if you start coumadin therapy your INR might bounce around for a while until it settles to the range they want (usually between 2-3). It took mine 6 months to settle down and be consistent. Don't get upset if you are constantly getting stabbed. It happens to all of us. My INR goes waco at least once a year. some of us using Coumadin® can not take Warfarin (generic Coumadin®). Because it is a generic drug, multiple people produce it and the binding agent is not consistent. I could not keep my INR stable on it. Some of us can't. If you are one of those folks than you will have to ask for Coumadin® and if you are given Warfarin then refuse it or have them refill the bottle. This has happened to me more than once and if the pharmacy goofs. You don't have to pay for the fix.

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