Being the spit-fire that I am, I began a journey to figure out if these clots were simply just the standard PICC line clot, or if there was something else going on.
My first stop was a no brainer: to my OBGYN to get a non-estrogen birth control Mirena IUD (medication with estrogen can make you more likely to throw clots). I have been on estrogen birth control since 1995 to control loooooooooooooong periods and to help with hemoptysis (although it never really seemed to work. i was probably going to try seasonale, as less frequent periods has helped a few CFer's at my clinic with their frequency of hemoptysis).
My next stop was two different hematologists. Many of you know that I'm involved in healthcare not just personally with CF but also professionally. I have seen that it's simply essential to see specialists for the issues that I have - there is no possible way that a CF pulmonologist can be up to date on all the latest and greatest info for every part of our body (CF pulmo's are even up to date on CF related stuff). I'm healthcare reform's worst nightmare - I see an allergist for my allergies, and ENT for my sinuses and ears, a gastro for my reflux, an OBGYN for my lady parts, a pulmo of course for my CF (and many, at that - Denver, Minnesota, Stanford, Cincinnati), an opthamologist for my eyes, a dermo for my skin, and a dentist for my teeth. Only the best for my health - why not see an expert to ensure you have the latest and greatest for the body?
So I went to see the first Hematologist at the beginning of December who said simply my CF doc had me on too much Lovenox for too long to treat my DVT and she thought going off the estrogen BC pills was a good idea (and commented that CFer women can't really get pregnant anyway.... to which I corrected her that women with CF CAN get pregnant and besides, that's not why I'm on BC in the first place). Other than that - she recommended prophilactic Lovenox (low dose) next time I get a PICC to prevent a clot. She didn't want to draw blood and do tests because she said we'd treat my clot throwing propensity the same way regardless of the results.
On to Hematologist #2 about 3 weeks later (at a totally different medical center across town). This doc was pretty convinced that stopping my estrogen BC pills would have a HUGE impact on my clot-throwing propensity and asked me why my pills weren't stopped back in January when I threw my first clot (to which I answered, I have no clue, it didn't even occur to me and of course my CF care team didn't even mention it... grrrrrrr.... and I only see my OBGYN once a year and once I did see him in Nov this was brought to my attention).
Hem #2 also wanted to draw a bunch of blood (seriously, I thought I was going to pass out it was the most blood that's ever been taken from me) to run a boat-load of tests. He said I could have some genetic blood clotting issues, and although we most likely wouldn't treat me any differently with a genetic issue, it would be good to alert the rest of my fam of this gene. Well since my enormous family hasn't even been tested for the CF gene, I have a feeling this wouldn't phase them either but what the hey, let's test!
Fast forward two weeks to yesterday and I get a call from Hem #2 with some interesting test results:
- Everything came back normal including the test for the most common blood clotting genetic disorder Factor V Leiden (Up to 30% of patients who present with deep vein thrombosis (DVT) or pulmonary embolism have this condition). So good news
- I do, however, have a mutation (heterozygous for this mutation) on the gene right next to the Factor V Leiden gene which, according to Hem #2, has only been seen in the literature once. The clinical signficance of this mutation is unknown, but evidently the labs and geneticists at this medical center are going bananas at this mutation I have. So I was sent the lab to measure my Activated Protein C Resistance Ratio, which, from what I gather, measures if my blood likes to clot a lot.
Naturally I have a HUGE amount of questions regarding why this genetic mutation is so exciting to the geneticists (and as luck would have it, my Hem #2 is heading to Antarctica for 3 weeks today so I can't really discuss more with him for a bit), so I've found out the name of the geneticist and I have emailed him to set up an appt to discuss what's going on.
Bottomline, all of this testing could lead to absolutely no new info (it's possible that this gene mutation means absolutely nothing clinically)- but at least I know I investigated the issue thoroughly and I'm not missing an opportunity to treat this potentially deadly issue of DVT (my clinic has had 2 patients die from PE that originaled as a DVT from the arm).
But it's my health, and my life, and I'll be as proactive as I want to be. I deserve it.
Here's to a healthy and happy 2010!