Can being proactive vigilant not be a good thing?

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Re : Can being proactive vigilant not be a good thing?

Post by alysa » Wed Dec 03, 2003 01:47 am

Goodness! I pretty much agree with everyone's comments... I just have to respond as well. I have experienced a struggle with doctor's since I can remember - during and outside of pregnancy. I've heard stress, anxiety, hypochondriac comments etc. It's the fight between patient and doc. if the doc. doesn't understand - or is negligent to investigate it, it is left as a [?] and usually their quick response is for reassurance, but when there are evident signs of "something" wrong, no dr. should ignore the body's warning signals and I would ask to see the bloodwork lab results and ask for a copy. - They can't refuse to show you, if they do - there is something definitely wrong.
I am currently changing my ob dr. for this reason. When changing dr's. I indicated that I did not feel my current dr. is concerned and was looking for a dr. that would be thorough with me. A good dr. is one that listens and works thoroughly on your behalf, if they don't ask for a perinatologist that can help. I also like to add that I myself never developed preeclampsia and PIH is just as serious (I have experienced what a dangerous BP level is like, thankfully for me it did not worsen to other ills as well). Do not let your BP be ignored or anything else due to your dr.'s "brush off". Keep up with researching yourself as well and if you feel HELLP is something to watch for - don't be afraid to ask for bloodtests to show if in fact you should be careful of it.
Always ask questions. If the dr. ignores them, so to speak, seriously seek a second opinion for the specific questions you need answered.
Take care,

Alysa

Chloe (Feb 99, born 37 wks PIH)
Isaiah (Feb 04)

Re : Can being proactive vigilant not be a good thing?

Post by deerhart » Mon Dec 01, 2003 08:45 am

LOL really want to get the best info and results out of your doc and the hospital

Take a med student with ya...
1) usually the med student has done some research
2) they ask all the right questions and get responses then translate
3) the doc doesn't want to be shown up by a med student
4) the doc wants to show to the med student they know what they are doing so they do the research themselves

Okay so some of that is in jest LOL, but I will admit that in my first pregnancy, it made a huge differnece how the hospital doctors treated me when I went with my husband and when a friend of ours who was a med student and following my pregnancy for school came with us. When she was there, I got some pretty good answers etc, and when she wasn't you would get more oh its fine nothing to worry about etc...
It actually was quite interesting because many times she thought of questions to ask that I would never have thought of and got answers to them, plus she could look stuff up in her medical books to translate for me [:D]

Erin

Mommy to Alex and Mason

Re : Can being proactive vigilant not be a good thing?

Post by jjbeck » Thu Nov 27, 2003 12:20 am

Hi Anne. I have spoken to four docs so far regarding my BP. My OB, two Peris and my cardiologist. None think it is time for meds yet...they say it needs to read high and stay high for at least two consecutive days. My fluctuates so much. The numbers do scare me. A lot. I see them again on Wed. I am going to ask them about it once again.

Now when I was in the hospital, it was normal the entire time I was laying down.

I will let you know what they say on Wed.

Thanks again for all of your help,

Jen

Re : Can being proactive vigilant not be a good thing?

Post by annegarrett » Thu Nov 27, 2003 11:27 am

Thanks for the link Laura! I personally take offense at the suggestion that all things on the internet are garbage. The forum is largely our opinion and that will vary--but the main section (see HOME) has been reviewed by six+ experts in the field and represents their consensus.

People who are threatened by patients who are educated--are people without enough self-esteem. I questioned my perinatologist--brought in medical textbooks with yellow sticky tabs on pages I had questions about. It was HIS willingness to listen and to answer those questions that made me trust him. As a result--he helped me found this organization.

You have to insist on numbers--that BP of yours is really high. It would be entirely reasonable to ask for a second opinion. If you email me--we can help you find someone in your area to double-check you.

Take care,

Anne Garrett
Executive Director
Preeclampsia Foundation

Re : Can being proactive vigilant not be a good thing?

Post by laura » Thu Nov 27, 2003 10:32 am

Oh no, don't play dumb, I didn't mean that! I just feel that the more assertive I got, the more my doctors retreated. They don't get excited over stuff, so if it even looked like I was going to get excited, they looked nervous and for a way to get me out of the door. I can understand to a certain extent, I worked in a prenatal clinic and I saw some pregnant ladies get pretty upset and pretty vocal at the docs for transgressions ranging from little to large.

(aside, not preeclampsia related- one of my girlfriends became emotional at a prenatal appointment- her doctor blanched, RAN for the door, and said "I'll get a nurse" Can you imagine?)

What I'd probably do is tell them you're worried, and ask them to explain they don't think it's preeclampsia. That you trust them, but you need to know to set your mind at ease.

I did avoid mentioning the word internet myself, the last midwife I saw before I changed care launched this huge lecture about how I needed to stay off the internet, that they were the ones who were responsible for my care, and would take care of it, and I didn't know what I was talking about. Uh-huh. Please. That was my LAST visit to see her. I didn't hesitate, though to mention that I was in touch with people here at the Foundation. Good luck, and don't give up!

Laura-28
DH Jack-30
Allie 5-13-98 (35 weeks-pre-e)
Baby Camille 4-17-03 (36 weeks- htn and oligo)
http://www.babiesonline.com/babies/c/camilleandallie/

Re : Can being proactive vigilant not be a good thing?

Post by jjbeck » Thu Nov 27, 2003 09:11 am

HI all thanks for the great info and input. You have no idea how grateful I am to ladies like you being out there.

"I have to confess I tended not to show all my cards at appointments. I just asked a bunch of questions- so I'd be like "so how'd my labs turn out?" (if fine, continue) "ok, so all of them were within normal limits?" "Oh, my liver enzymes were off a tad? Really? That's strange, what do you think is causing that?"
"
Laura, I like that approach, I recently figured this was what I needed to do....but I found they were very reluctand to even answer those simple questions, when I asked what my BP was they would would just say oh, it's still a little up there. It was a task to try and get them to tell me what it was after explaining my Cardio wanted to know, they told me it was 150/110. Same thing with the liver enzymes...when I asked how elevated, oh its up there a bit...they were up into the high 100s but have since gone down and are now only mildly elevated, thankfully. I find they just do not wna tme to think ahead. They do not want to hear any questions regarding pre e unless or until it happens.
I am going to have to live with that I guess....this site and you ladies have helped me in knowing what I need to keep an eye on.

I will try and avoid using the word internet with them.
I will try to play dumb just enough not to compramise my or my babies health.

Thanks again everyone and have a
HAPPY THANKSGIVING!

Jen

Re : Can being proactive vigilant not be a good thing?

Post by laura » Thu Nov 27, 2003 03:18 am

check out our little Annie on the roster:

http://www.nhlbi.nih.gov/resources/hyperten_preg/index.html

Re : Can being proactive vigilant not be a good thing?

Post by akemt » Thu Nov 27, 2003 01:38 am

WOW Anne,

Thanks for that post! I had been wanting that kind of info[;)] and had to copy and paste it to my word processor for future months when I may need it! lol

BTW, what are those NIH task force guidelines? Are they guidlines for treating hypertensive pregnancies? If so, I'd love to get a copy MYSELF! lol [:D]

Catherine (22)
DH Britton (27)
Emma Margaret (03/02/03) 37 weeks from PIH & oligo

Re : Can being proactive vigilant not be a good thing?

Post by annegarrett » Wed Nov 26, 2003 11:25 am

Echoing everyone's comments above--and a simple statistical reminder--half of PIH turns into preeclampsia.

Per whether or not to "believe" the Preeclampsia Foundation? There are a lot of websites---March of Dimes, for example, who do not have AS good preeclampsia information as we do--there are a LOT of website with very good and solid preeclampsia information--the NIH, the American College of Obstetricians and Gynecologists, etc...We are young but you might MENTION that we are referenced by CNN, the New York Times, the BBC News, the TODAY show, as THE source on preeclampsia. That might shut them up.

If that DOESN't...mention that FOUR of our five Medical Board members (+ me) WROTE the National Institute of Health's Hypertension in Pregnancy Task Force GUIDELINES. Happy to send them a copy if they have any questions.

If they need names--tell them Roberts, Lindheimer, Sibai, August and me. If they don't know THOSE names (two wrote THE medical textbook called Hypertension in Pregnancy) then they are not worth your time and you need a new doctor.

Anne

Anne Garrett
Executive Director
Preeclampsia Foundation

Re : Can being proactive vigilant not be a good thing?

Post by catherine » Wed Nov 26, 2003 09:48 am

Don't doubt yourself Jen. I think that when a patient's symptoms don't fit a recognizable pattern two things happen. The patient begins to feel like a hypochondriac because the vibe is "I'd don't recognize this, is this a "real" disease syndrome I'm seeing?" So you feel as if you're making things up, which is entirely untrue. The second thing is that the Drs seem to become defensive. No surprise really, it is probably difficult to admit to a patient that you haven't a clue as to what is causing their problem, whether you're seeing one thing, or a group of things overlapping etc.

I think the best thing you can do is deal straight, look the relevant OB in the eye. Remind him or her that is your precious baby that you are carrying and you want to do the very best you can for him/her. At the same time point out that you are not whiny, needy, acting out or seeking attention. Furthermore, that you do understand that the OB may not have all the answers right now. I would also explain what your major fears are, eg. preeclampsia. I think that some doctors have a standard "bedside manner" sometimes vague, usually cheery etc. Just say that this particular style doesn't suit you, you would like to be considered a partner in bringing this baby to full term but that you understand that you are not a peer. So, "you're fine" etc. doesn't reassure you, you'd be more comfortable with a concise description of where you are healthwise.

Before you start thinking.. "get off your high horse woman, did you do that?" The answer is not entirely. However, I did tell the OB the two things that scared me most, a)being as sick again as I had been in the previous pregnancy... and he promised that he would do his very best to prevent that happening (with no guarantees), and b)that it would come at a point in the pregnancy where the baby wouldn't do as well as my daughter did. I think that is when I realized that the man was being as honest as he could be because he straight away told me that it was possible that those two things were incompatible and that he would be concerned for my health first. If I wasn't willing to accept that, perhaps I should look elsewhere for another OB. It made me a little sad to acknowledge such a possibility but at that point all the cards were on the table.

It's hard to deal with Jen but stick to your position, ask your questions. Keep reminding your OB that you want to understand what is going on, after all you're altogether for only one reason.... your baby!

Good luck

Catherine (37)
DH, Dave (40)
Finn (6)
Lucy (2)
Chloe (7/2/03)

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