Can being proactive vigilant not be a good thing?

[jjbeck]

I am now going on 16 wks pg. On 3rd pg but lost the last two one due to severe HG and related problems.
I have HG again. I have been planning this PG for the past three years wanting to be as proactive as I can to have the healthiest PG possible and learning as much as I can about HG.

When I began having High Bp I really wanted to know what this was all about as I have always had a low BP...even up to 7 wks of this PG. Someone recommended I vistit the Pre e boards. Many woman also commented that they had HG and went on to have Pre E...this happened with a family member as well. I am not saying I am so concerned and think I am destined for pre e ...I know no one knows for sure...but I am trying to be as vigilant as I can and just keep an eye on things.

Now while at a doc appt Monday afternoon, I had a fever of 101, elevated liver enzymes BP of 150/110 and severe upper rt quad pain and trace protein. The doc was sure I had gallstones and dev an infection as a result and admitted me to the hospital and told me to prepare for surgery.
Well, at the hospital my gallbladder US was fine, my temp was lower and my BP was normal throughout the time I was there...of course I was laying in bed the entire time.
SO we are back to not know what the pain is from or the reason for the high BP. They think my liver enzymes were elevated from either the HG or meds. They thought the High blood pressure was from steroids which I am no longer on...so it is not that. The side pain may or may not be from where I have gastroparesis. As far as the fever....they have no idea.

With these UNKNOWS, I now more than ever wnat ot keep an eye on things, but am learnign more and more docs do not seem to like the qustioning and especially do not like any mention of talking to other woman with simular problems or finding info on line....places like hyperemesis.org or preeclampsia.org are insinuated as not being reliable sources of info. One OB at the hospital just gave me a look and commented in a not so positive way...." you seem to know a bit about pg conditions", when I asked about my liver enzymes being elevated, having HG & high BP and asking if there might be in increases likelihood of PRE E or hellp. She went on to say absolutly not. There is no connection.

I am beginning to think it is better for me to not ask questions and just keep an eye on things myself.

Does anyone else have this problem with docs? mean about patients asking questions or having to much info?

Thanks and hope all is well with everyone.

Jen

[ileana]

Oh, yeah, this is a common problem... And no, it's not a bad thing to be vigilant and proactive.

The problem is that the doctors are feeling threatened... The solution is to make them feel that it's ok, you are just trying to help. This is easier said than done.

I am in the same situation myself, not knowing how to talk to these guys so that they will listen and cooperate. Another problem is that they are so short on time, so a patient that requires them to do extensive studies is taking time from their other patients.

We should build a heath center and have us all in there for 9 months with doctors that are interested in this disease... Or create the virtual doctors, have email consultations.[:D]

But seriously, Anne and the others, do you have any suggestions, success stories, etc. on communicating with doctors that seem to not have time or be willing to listen to us?


Ileana 33
Angel stillborn 24w p-e 2/17/03

[akemt]

Did your doctor say that elevated BP had nothing to do with PE and Hellp? Did I read that right? Well, you know the answer to that one! Some doctors definately don't like their judgement being "threatened" and don't like delving into subjects they know nothing about. And, as you know, getting info on the internet in general is "iffy." Not that I beleive this foundation fits that description one bit! I had a doctor that raised his eyebrow at the mention of the internet, but he did listen closely to what I was saying and didn't automatically discount it. Liked that doctor.

Yes, be vigilant...hopefully you and your doctor can reach an understanding about you trying to be proactive and simply wanting to understand things yourself, not necessarily questioning their judgement. Maybe say that to them?

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

[jjbeck]

"Did your doctor say that elevated BP had nothing to do with PE and Hellp? Did I read that right? "

When I asked her if my current symptoms ( which I included the BP) increased my liklihood of getting pre e she said no. I think if I asked her about ONLY my BP...she probably would have said maybe....as her partner said.
I was wondering if by that point she was only half listening as many of the docs at the hospital seemed to be doing while I was there. Gosh, when I was first admitted, I told the 1st doc I spoke with the list of meds I was on and the times I took them. He said he would resume my meds right away.....it took 8 hours and even then, they got it wrong...of course the nurse cold not do anything until she got a hold of the doc who ended up yelling at her for calling and hung up on her. She did the best she could getting the verbal list from the doc before he hung up...but still did not get it right. THEN, they asked my husband to put it in writing...the next morning they STILL could not get it right...
Honestly, I know that doctors are so rushed and have very little time, it is just so frusterating.

[laura]

You know a doctor's ego is a fragile thing... If you are too challenging they seem to disagree with you so they can roll their eyes and just be right.

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?"

Even if I knew the answer, I made it just look like I was curious, and though confident in their care, I wanted to understand better.

And I never said "web site" I always said stuff like "I read somewhere that sometimes abnormal liver enzymes were associated with HELLP, could you explain to me how my labs are different?"

You know the old adage "you catch more flies with honey than vinegar"[;)] Oh, the stretches we go through to get good care!!

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/

[kim]

Jen,

I can appreciate how frustrated you feel. It's enough to be sick and not know what the heck is wrong, but then to have doc's treat you like an idiot.... My doctor was always great at communication, so I was lucky. I am not a doctor, but I would be seriously concerned at your blood pressures and elevated liver enzymes. It all boils down to the fact that you are the only advocate for you and your baby. If they can't figure out what is wrong, then they need to refer you to someone who can.

If your bp was normal when you got pregnant, then something is causing it to rise. Maybe you could preface a conversation with your doctor "I have already lost two pregnancies and cannot bear to lose a third. I just really need answers. I KNOW that my bp should not be this high and that my liver enzymes should not be elevated."

Don't let them blame it on your meds. Throughout the course of my pregnancy, I was on Reglan, Phenergan, Zofran, Ambien, Unisom, Benedryl, Z-Pak, Bactrim, and none of these drugs "caused" my high blood pressure. At the very least, they should look in to anti-hypertensives to get your bp lower. That bp is not good for you or your baby...

I just wanted to let you know that having hg is horrible and dealing with docs while you are that sick is awful. Take care, and email me if you need anything.

Big Hugs!!
Kim

Kim
Ainsley Kathryn 11/26/02-36 Weeks Preeclampsia
http://home.austin.rr.com/schwintz

[catherine]

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)

[annegarrett]

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

[akemt]

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

[laura]

check out our little Annie on the roster:

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