Keeping Our Heads Held High...

Despite being told by my OB that she would rather we not get pregnant, we still want to see all of our options. She recommended three perinatologists and suggested that one of them have a care conference with my hematologist, as my health history is quite complicated. Well, as I've previously posted, my hematologist has point blank refused to care conference about one of his patients, so I've taken matters into my own hands. I've started calling perinatoloy myself, leaving messages and talking with the nurses about my history and seeing where to go from here. I was able to get through with one very nice nurse. She said that they have patients with FVL and MTHFR (even Compound Hetero) frequently, but when I put the spin of my history of clots in my head, my possible Arnold Chiari, and the POSSIBLE need for a sperm donor, she suggested that I make an appointment for a consultation with one of the doctors there that my OB had suggested. She also said that their office was very familiar with my hematologist and worked quite well with him (really? That makes one of us), so I made the first available appointment that Jim would be able to come with me, which would be in June. I'm hoping they'll say that it doesn't matter whether or not I have Arnold Chiari and I won't need to have more scans, but I have a feeling that won't be the case. I also see Neurology again next month (was supposed to follow-up with them for a 1-month follow-up over 2 months ago. Nurses are the worst patients, ya know!)...hopefully I can get off this Topamax since it clearly has done nothing for me except make my hands and feet tingle. I'm anxious to hear what the perinatologist says...I'm sure they've seen the worst of the worst...I'm hoping that I'm not in that category...I'm not ready to give up yet.

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