Pregnancy and POTS

[AKhanna]

Hi:

I am a 35-yr old woman who was diagnosed with POTS about a year and a half after the birth of my son 3-years ago. My symptoms started soon after the birth of my son, but the doctors kept attributing it to the post-partum hormones, and even attributed my complaints to post-partum depression at one point. I finally got diagnosed a year and a half ago, after having a work-up with an electrophysiologist.
My husband and I are now contemplating having a second child. I am terrified, however, by the fact that my OB does not understand my condition at all, and blows it off as somewhat low blood pressure. She does not think I need to work with a high-risk OB till such time as I develop complications during my pregnancy. I am very uncomfortable with this approach. I have severe orthostatic intolerance symptoms and fatigue with wild variations in my BP on a normal day, and would like to go into a second pregnancy with an OB who atleast understands my condition and can try to do all the right things when and if complications arise from my condition.
We live in downtown Chicago. I would appreciate any recommendations that you might have for an OB in and around chicago, or even in another state, who is well versed with this condition. Thank you so much for your help in advance!

[Heiferly]

Oh, and Happy Mother's Day!  Sheesh, you'd think my head isn't attached somedays ...  brain fog, feh!

[Heiferly]

The way that I usually find physicians for posters in cities/states other than my own is to get a list of likely candidates and cold call their offices and flat-out ask about their knowledge/experience with dysautonomia and their willingness to take on a dysauto patient and address the unique concerns this will entail.  Are these two hospitals the main ones for high-risk deliveries in Chicago (I'm just going by what the internet is showing me so I could be off or missing something)?

http://nmhphysicians.photobooks.com/list.asp
Er, that's not going to link to my search results ... here's what I'm looking at:
http://i.imgur.com/XHCiU.png

http://rush.photobooks.com/directory/list.asp
Likewise, here are my search results for high risk OB/GYN on this site:
http://i.imgur.com/ylgyU.png

I see that Rush UMC is ranked 12th in neurology; that could be an indicator that someone there might have an inkling about the autonomic nervous system and that could bode well for it being a good facility to get cooperation on the protocol for delivery with dysautonomia.  Which, incidentally, there IS a protocol because there have been medical journal articles published on this very subject, so it's not as though you're asking the doctor to make this up as they go along.  It sounds as though the doc you have now has not read up on this and is unwilling to educate herself; I think you're absolutely correct in looking for a new doc.

I'm more than happy to make phone calls on your behalf to scope out docs and try to see who is most "dysauto-friendly," if you're not comfortable doing it yourself.  I've done it for several other forum members in the past if they weren't sure of exactly what questions to ask or weren't confident using medical jargon when speaking with the offices, or just didn't feel well enough to handle the task.  If you go ahead and make the calls yourself, you may find it helpful to address dysautonomia/autonomic instability in general rather than POTS specifically whilst initially screening for a doctor.  Other situations where doctors may have dealt with high-risk pregnancy/delivery due to dysautonomia could be patients with spinal cord injury/para/quadriplegia, for example.  If they are familiar with these type of cases, they would likely be able to adapt to the type of autonomic dysfunction present in POTS, even if they aren't already familiar with POTS specifically (especially if they read up on the few journal articles on POTS labor/delivery).  

Here's a post from the last time (I think) that I gathered up extant peer reviewed journal articles relevant to this.  I haven't looked to see if any have been published in the interim.  I'm getting lightheaded right now and need to lie down, but if I think of it next time I'm feeling better, I'll have a look and let you know if I find any others.  Some you can access for free yourself, others your docs probably can get through their hospital's access and print off for you (or you can buy, but journal articles are always SO overpriced, in my opinion):

http://www.medhelp.org/posts/Dysautonomia-Autonomic-Dysfunction/POTS-and-Pregnancy-/show/1034253

Best wishes, let me know any help you need, I'll do what I can.  Keep us in the loop,
Heiferly.

[acesew]

One--get rid of the OB who doesn't understand.  YOu would probably be better off with an OB who has knowledge of high risk pregnancies, just to be ahead of things.  Maybe some one on here will know of one in the area.  Also, make sure the hospital the you use has dealt with high risk pregnancies.  These were recommendations I received when diagnosed with Lupus.  I am not planning on getting pregnant right now, but I wanted to know the risks for future reference.   Hope this helps some.  and good luck