Gathering my medical history wasn't as bad as I'd imagined...I'd spent several weeks (no joke) calling hospitals, offices, clinics, etc, trying to send out my history from everywhere (current) to this perinatologist. It was quite the battle with a couple of places, which, unfortunately, were very much needed with this consult. Thankfully, the nurse let me know that they were able to get all of my records (whew). My husband made some type of smart-ass remark while walking behind me. Had I not been tearful the entire walk throughout this clinic, I may have turned around and backhanded him (joke, for all of you APS people out there). :) The nurse seemed to be pretty cool and calm, given my history, which I understand, there are many other people out there with much more extensive histories than mine, but given my age, I am still somewhat surprised with my own history some days. The doctor came in right after her, and I knew immediately that I'd made the right decision in choosing him (whoa...not used to that feeling!). After gathering my history and our current situation, he said that he didn't feel that we shouldn't keep from TTC based on that. He did say that, given my history, of course I am at higher risk (duh), and if you didn't want to get hit by a truck, don't play in traffic, in essence, if you don't want to risk clots or miscarriages, don't get pregnant. Another duh. :S Of course, I would be on Lovenox from start to almost finish, depending on the delivery. Obviously, I would have to be closely monitored. Given my history of MTHFR and the Spina Bifida Occulta, he suggested that I take Folic Acid (yet another duh). Pretty much everything he said, we knew....however, he DID give us something we didn't have...No, Dorothy, not a heart or a brain....haha Couldn't resist. He gave us reassurance that, just because I have this history, with or without our current fertility issue, does not mean that we should completely scrap the entire idea of conceiving and go straight to adoption. He did say that he does not deal with fertility (yeah yeah, we know), so that's something we will have to keep looking at. However, he did say that I cannot be on hormones (yet another DUH), so that will make it interesting. I asked him about seeing Genetics, and he suggested that we hold off....I already know that I hold a 50% chance of passing FVL to my child, however, MTHFR is a different story. I believe he said that it would be a 25% chance....given that I have compound heterozygous, I'm not sure I understand that. I asked him about my neurologist wanting me to have an MRI and MRA to rule-out Arnold Chiari, and if I did, would it make a difference. With a HUGE relief, he said that it would not matter either way. THANK YOU!!!!!!!
My husband said that, while I didn't smile throughout the appointment, he saw something in my eyes and face that he hasn't in a long time, which apparently resembled that of a smile. The doctor asked me what my current thoughts and feelings were....as I'd been holding back tears the. entire. time. I struggled for words....I wasn't sure if I was in total shock, or relief, or just in overload, even though the information given is what we'd already known, it was still uncertain until handed over on a silver platter by the perinatologist. It's hard for me to believe that this doctor doesn't think it's absurd for me to get pregnant when my own OB/GYN does, and I did express that to him. Fair enough, she's not the expert. However, I've also done my own research...finding women in similar situations losing babies up to 36 weeks, having 8 miscarriages, suffering from HELLP Syndrome, giving birth at 24 weeks. I'm not sure I could live through any of that. When I mentioned that to him, he answered with, "not everything is related to FVL or MTHFR." Fair enough. I suppose we are well-prepared, and we will be as careful as possible, but given my history and my known susceptibility to become dehydrated at the blink of an eye, it makes me worry JUST A TAD.
After that appointment, we had to jet over to Neurology. EEG was done...normal. Duh. :) (sounding like my stepdaughter). I explained to the doctor that I have no desire to continue with Topamax, as it cannot be taken while pregnant, it's expensive as hell, and it's making my hands and feet tingle to the point of pain. He followed me down the road and said to taper down and even off, if I choose to do so. In the meantime, he suggested some vitamin, which I have no intention of taking, as it cannot be taken while pregnant either. He also mentioned that I'd refused the MRI and MRA. Yes, yes I did. They're expensive, and I've had too many already, thanks. Besides, if I do have Arnold-Chiari, what's my treatment? Deal with it. I wouldn't qualify for surgery, and even if I did, I wouldn't go through that hell. He then proceeds to tell me that he'd looked back at some old ones, and he doesn't think I do have Arnold-Chiari...um...didn't I ask you to do that months ago, and you told me that you couldn't??? Whatever. Money saved, cancer-prevented (hopefully). Whew! He DID say that he believes these headaches to be migraines, which could be related to the history of thrombosis or my FVL or MTHFR, or may not. Either way, I've dealt with it for my entire life, and I'll continue to live with it. I refuse to be on the meds that I've been on...they make me feel awful, they're killing our bank account and insurance, and I can't be pregnant while on them, so what's the point in getting used to them?
So, I'm starting to "somewhat" get back into wanting to baby-plan again, with the exception of still worrying...we still run some high risks, and we have a long way to go. Hopefully, we have some of the tools we need to get started. I'm glad I have the perinatologist that I do....I really do like the doctor, the staff, and the clinic. Here's hoping!
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