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...
Back to Information For The Recently Diagnosed