What should I do???

[shinebrite]

well bout 2 weeks ago I was diagnosed with a pulomnary embolism (blood clot in my right lung) and it was pretty much touch and go at one point but now Im on a daily clexane injection (Blood thinning agent) im at home and stable. I was refferd to a Obstetrician at the Canberra hospital and was told by a nurse in a normal situation they would induce me before 37 week (im currently 33wks) because they will need to plan to take me off the clexane and thicken my blood up which could take 1 or 2 days then induce me to have bubs and quickly get put back on the thinning agent.

the first time i went to the OB he said I would need to be tested for "underlying" genetic problems and we asked about inducement and he said it wasnt as easy as just setting a date at this point. So off i go to get a BT and last thursday I got the result back that there is an underlying problem, he really didnt explain it very well to me what the actual underlying problem was and i was nearly in tears as he was telling me that the result was "abnormal" I have a bad immune system, my body rejected the baby and as a result has been growing on its own as of 20wks and as a result becase my body doesnt like being pregnant I got a blood clot and will probably have problems in the future with my kidneys.

Well really the twist starts here, In 2001 I had a BT for Von willibrands syndrome because my grandads mum had it (she bleed for 7 months of her pregnancies) my grandads sister has it (they found out when she nearly died under the knife getting a histerectomy) and my mum has it she has nearly died from it several times including getting her wisdom teeth out and then hemerraging(sp?) after giving birth to my brother. Von willibrands syndrome is a bleeding disorder that runs in families (usually females) and U DONT clot and can usually b picked up with BAD periods which I have. On a regular period basis I usually go for 14 days and can loose so much blood that I faint, and vomit. I was tested for endo but that was neg and then tested for Von willibrans and it came back Abnormal! so how the hell did I end up with a totally different Blood disorder???

All Im worried about is the fact that when i asked my OB about Von willibrands syndrome he said it would have nothing to do with me and then we asked about inducement...still he doesnt have an answer. he also went on to say there could b a high chance of me having a small baby so im getting a scan this tuesday. We also asked about bleeding after the baby and he said "we will just get to that when we come to it" and said with inducment we will just play it by ear!

So PLEASE can someone tell me what to do? Im SO confused??? should i ask to see another OB or even pay to see one?? we are So broke atm living off one income and havent got private health cover... I really dont know what to do Im just really confused...

Im also really stressed about this baby cause I dont want it to have any problems if its too small what will they do? what if all the drugs Im on r actually harming the bubba and its not happy....

I know your not doctors but you are all very wise women so anything u suggest will be greatly appreciated!

[CJandMum]

I have to say that you need a :hugs: right now. I can't imagine what you must be going through. I know doctors aren't always the best source of information all the time. A lot of the time they just assume that you know about the disease and assume that you know all the medical terminology that they know. The doctor probably strugged off your question about your condition due to the fact that most women with your condition don't require medical treatment. I was reading in my medical book about Von Willebrands disease and it states that pregnancy can increase the production of the von willebrand factor and can temporarily improve clot formation. That could be why bub isn't happy and you developed the pulmonary embolis. A embolis is actually part of a clot that develops in another part of your body called a thrombus.. usually develops in the legs (most of the time) and part of the clot breaks off causing an embolis. Hence, the reason why you're on clexane to dissolve any clots you may have. If you are going in for a c-section they will take you off the clexane a few days prior and put you on a drug called desmopressin to increase the von willebrands factor long enough for your surgery. I know you must be increasingly concerned about your situation but just stay positive.

If you aren't getting the answers you require, stay and ask as many times as you need until you feel confident in the information. Also, if you need to you can also ask the nurses.. sometimes they know more about how to communicate in terms that people actually understand.

I'll keep praying for you.