Thursday, October 27, 2005

Luck of the draw

I'm back from my RE's appointment, and I have news, and bad news.

The news: surgery is not yet scheduled, but will probably not be before December or January due to the schedule. (Sometimes it really SUCKS to live in a city with a "center for excellence in women's health," usually when it relates to being seen QUICKLY.) I suppose it's good news that surgery will be scheduled at all, though, so I have to try to keep my perspective. The doctor who will be doing the surgery (Dr. S) is out of the office today, so I will be actually setting the date on Monday. The word is still out about whether they will do a lap/hyst or just the hysteroscopy, and Dr. W said he'd defer to whatever Dr. S wanted to do. I don't know whether I'll push for the lap or not (or whether they'd agree even if I push) -- we'll see.

Ok, now for the bad news: remember when Dr K's (my old doctor's) office called me and told me that all of my bloodwork was completely normal?

Well, guess what. It wasn't.

I'm not sure what happened, but the packet of labs that I picked up from their office and delivered to Dr. W was incomplete, so he decided he wanted to re-order some of the tests. While the NP was going over the tests with me (Factor V Leiden, Prothrombic Gene Variant and MTHFR, I said "I *know* I had those done." So she called the lab for me, who faxed over the results.

It turns out that in addition to the septum, I am homozygous for MTHFR. (In other words, genetically speaking, I'm a train wreck all over the place! Hmmm.)

Despite the obvious jokes about that name (yeah, I'm a homozygous MTHFR) this could be pretty serious, for more than just pregnancy purposes. Gynecologically speaking, I will need to start on mega-folic acid and when we're pregnant again, I'll need to be on some sort of blood thinner. Pregnancy risks aside from recurrent miscarriage include:
  • preeclampsia
  • placental abruption
  • intrauterine growth restriction
The risks to my general health, though, are greater as well, and I've been referred to a hematologist to further discuss them. However, the short list of risks* can include:
  • increased risk for developing atherosclerosis, which can in turn lead to coronary artery disease, heart attack, and stroke
  • increased likelihood of having a blood clot in the veins
  • possible dementia, particularly Alzheimer’s disease
The obvious burning question in my mind is "why didn't Dr. K's office TELL ME THIS??" From the copies of the chart that I have it does clearly look like this was an addition to the earlier results, and perhaps it was not all sent at the same time, so I don't know whether the lab or the office would be at fault for not getting the information out to me.

I know it could be worse news, truly. I have read of success stories with this disorder and that with the surgical treatment and proper medication, there should be no reason why I wouldn't be able to have a healthy pregnancy.

But I'm still pissed.

*Risks from "Homocysteine and MTHFR Mutations" in Circulation

8 Comments:

Blogger Lorem ipsum said...

Wow. Just, wow.

Risks are just risks. You are healthy otherwise. And when you have your surgery, it will help get rid of more risks that otherwise would not have been addressed.

Yes, you will need to be stuck a lot. Cat can talk to you about that. But you can jump off that bridge when you get to it.

I'm happy you have answers now. Knowledge is power. So how come I'm so suddenly optimistic for you?

(((((hugs)))))

10/28/2005 12:54 PM  
Anonymous Kath said...

Of course you're pissed. I would be too. It's bad enough to go through the miscarriages and then the testing testing testing, but then not to be told about the results because of some organizational mix-up? Baaaad. But, much as I want to resist saying "look on the bright side," look on the bright side: the information has not come too late. You can now take concrete steps to protect yourself and your next pregnancy. And you will be monitored closely, which will be a big help.

I'm optimistic for you too, my dear. And I hope your surgery can be scheduled earlier...

10/28/2005 1:42 PM  
Blogger Catherine said...

Nothing surprises me anymore where doctors are concerned. They can lie and make mistakes and Jane Q. Public is just supposed to accept it. Personally, I think you should call and demand answers. How could this have slipped by without notice?

I'm glad you got this bad news, quite honestly. It's better this and a plan of treatment than loss after loss after loss...or something serious happening to you. I wish you all the best in the surgery and planning how to deal with all of this.

10/28/2005 4:29 PM  
Blogger Kathy McC said...

Well, shit. If it's any consolation, one of my best friends has MTHFR and she just delivered a healthy boy. She was on heavy duty Folic acid and baby asprin. No blood thinners. I hope between removing the septum and treating the MTHFR, you'll be on your way...

10/28/2005 4:41 PM  
Anonymous pixi said...

Yeah, that's frustrating. Thank goodness you've got the information though, so you can start figuring out how to deal with it. I'll be interested to hear what you learn from the hematologist.

10/28/2005 8:23 PM  
Blogger lauralu said...

what the fuck?!?!?

to the universe: enough already!

10/28/2005 11:19 PM  
Blogger Thalia said...

Lisa I'm so sorry on two counts - first that you have to deal with yet another barrier, and second that your doctor's office are being thoroughly incompetent. I hope you gave them a good kicking.

10/29/2005 1:04 PM  
Blogger Jill said...

Unbelievable. Do you think doctors dealing with other conditions are equally as realaxed about life threatening complications as ours are??

But I concur with the others - at least you have this info before another loss has happened. I'm sorry you have come across such incompetence:(

10/30/2005 6:03 PM  

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