I’m a Lifer

I had an appointment with my hematologist this afternoon.  I really like my hematologist.  He saved my life and that kind of creates a certain bond with a person.

It’s been almost nine months since my hospitalization for pulmonary emboli and we still don’t know what caused them in the first place.

We first started off talking about my lungs and how things are going with them.  I gave him the run down and while he does not think the nodules in my lungs are caused by the PEs he does think that more time should improve the situation with my lungs.  He pointed out that I am not the typical patient and the pulmonologists I saw were looking at me as if I was.  He commented that my time with running made me more likely to notice subtle changes with my lungs that the average person would not.  I told him about the one guy telling me that my clots weren’t “that bad.”  He said, “Yeah we get those kinds of doctors and medical students and when they come through we can only hope that they become radiologists.”

He agrees that, in theory, with time and exercise the scarring in my lungs should loosen up so he thinks its okay to push myself with the walking and jogging.  I told him of my goal to do a marathon before I’m 35 and while he doesn’t understand why anyone would do that to themselves he didn’t think it would be impossible for me to do with time so I’m going to still hold onto that goal.

I told him how running was almost a drug to me and how much I miss it.  He responded by telling me, “You don’t need to run, you just need a good cocktail.”  He had me laughing quite a bit during the appointment.

In regard to the blood situation, since my emboli came up with very little real reason he said that no matter what caused them it will not change the way we handle things.  This means that I will be on Coumadin for the rest of my life.  This wasn’t completely unexpected and to be completely honest it is a small price to pay for the peace of mind to not have to worry about another clot.  In the hospital he had tested me for mutations in thrombin and Factor V, both of which were negative.  The other things he can test for are mutations in fibrinogen and Proteins C and S as well as some other more recent discoveries.  His plan is to test me for those in October because he wants me to have spent a full year on Coumadin before going off it for about 10 days for these tests.

Ultimately I want to know what caused the clots not only for my own curiosity but also to know if this is something genetic that I’ll need to watch my kids for.  Mayo Clinic is still on hold for a bit until we see a bit more with my lungs will do and I see him again in October.