New Here....need support

[huntersmommy]

Hi I just checked the boards this a.m. and your situation sounds very similiar to mine, although they had mine labeled as "severe p/e"..anyway mp b/p would skyrocket and then they would take it on my left side and it would (most of the time) go down to a very normal reading and they would send me on my way. Once they set me up with the perinatologist I felt a little better about how I was monitored. I was delivered at 37 wks..b/p went to 180/120 and I was on mag to prevent seizures. It can be very dangerous if a doctor doesn't know what they are doing. Your and your baby's lives are in your hands so if you are not satisfied with the care you are getting then by all means find someone that you are happy with. It is just not worth something bad happening!! Take care and please let us know how you are doing.

(I see you are from NC. I am from Upstate SC. We are basically neighbors!)

LORI 27
JOEY 30
HUNTER 21 MONTHS (DELIVERED AT 37 WKS DUE TO SEVERE P/E)

[cjellavsky]

The hard part about this is...most of the high readings are when I take them at home. I have a home monitor. I am supposed to keep track of them. Well, when I show it to them...they say " Well, these are not the kind of readings we are seeing in the hospital, maybe your machine is broke". How frustrating is that?. The Dr. ones are around 140/90...the consider that borderline. I am staying vigilant in letting everyone know what is going on. I do have a favorite dr. there that takes me very seriously. So, I will be banging down her door. Thanks for everyone's help...please send me anything else you might know and your experiences as this is a whole new ball game for me. Thank you so much for your support...you guys are awesome!!!

[annegarrett]

Cary is close to the University of North Carolina in Chapel Hill. I would recommend that she see Kim Boggess, MD. 919-966-7890 for patient scheduling.

Dr. Thomas R. Easterling
University of Washington

(Tom Easterling is one of the best and most innovative doctors in this field--if he recommends Dr. Boggess, I would make an appointment for a second opinion ASAP just to confirm what your favorite doctor is thinking.)

Best wishes!!


Take care!

Anne

[ileana]

Caroline,

First, you should take your blood pressure monitor to your doctor and check it. They might be right. We usually have higher BP's at the doctor's office. If both monitors show the same BP and you are taking it correctly, then they should consider your readings.

Second, 140/90 is not borderline, it is hypertension! 130/80 is borderline.

Third, did they do a 24h protein for you? How much was it. If it's 300mg/24h or slightly higher, then it's mild pre-e. If it's 5000(5g) then it's severe pre-e. They can't evaluate the protein from the dipstick. I have a renal diseases books that actually says that the dipsticks are unreliable showing both false positives and false negatives. They need to do a 24h test or at least send the urine to a lab to measure the protein correctly and diagnose mild or severe pre-e.

Good luck and look for the good doctor!

I'll look up for some expert answers for you that you can print and take to the doctors that are unresponsive...

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

[cjellavsky]

I know what my last 24 hr was that they did in the hospital, it was 297....which barely meets mild preeclampsia. But, the nurse told me that the other two were high, which I didn't ask how much. I assume that they went down because I was flat on my back in the hospital and not moving at all. My headaches got a little better. Now, they let me go home and I am at home, but, it is hard to rest as much as in the hospital. I have a 3 yr. old who is sick and with me today, my Mom came to help out. But, of course my daughter wants her mommy who has been in the hospital. My headaches are back with a vengeance...I take another 24 hr. urine test on Sunday. So, we will see how this goes. I did take my monitor into the dr. office and it was very close, the bottom was a little higher, but, not by much. So.... who knows?.

[ileana]

Check these:

-protein limits:
http://www.preeclampsia.org/forum/viewtopic.php?t=61

-this is less relevant, but it shows that even fluctuating BPs should be carefully monitored
http://www.preeclampsia.org/forum/viewtopic.php?t=386

--hypertension and other Pre-e definitions
http://www.preeclampsia.org/forum/viewtopic.php?t=124

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

[laura]

I'm glad to hear that your pressures do go down- if you get 160/100's please go in! It can be the nature of PE for your BP to spike and lower-so it's likely that those high readings are accurate ones if your home cuff is right. And it's great that your protein isn't too high yet- but you still have a while yet to go, and PE by nature is a progressive disease. It will get worse, the only variable is how quickly.

And things can change very quickly. With my first, my first 24 hr was 195. Two days later it was 4500, and finally two days after that it was over 10,000.

I think our big concern would be that their insistence that your pe is only mild, though perhaps technically correct, would give you (and quite honestly your providers) a false sense of security- especially when things can change so doggone quickly- I was where you were and then less than a week later I was flirting with kidney failure. Most women will have two weeks between when they're diagnosed with PE and when they're forced to deliver.

It's a fine line for us- informing you of what could potentially happen (and has happened to some of us) versus unfairly and unnecessarily scaring the doo-doo out of you. There's no way of telling whether you'll hang on til term or be forced to deliver tomorrow- so we have to come to it from the stance that it could get bad, and fast. Especially with the BP's you're reporting. Those BP's are just bad, and they can do harm.

In the grand scheme of things- Dr. E is the great grand pooh-bah of preeclampsia doctors. I have unshakable faith in his judgement- and if he recommends a consult (a consult, mind you, a 30 minute meeting without any expected committment)with this doc, it can't hurt to have it.

In any event, regardless of what you choose to do- please let us know if there is any way we can help. I know I've been there. It's hard, and scary, and confusing- and you have to follow your own instinct on what's the best course. I'm keeping my fingers crossed for a healthy time until delivery....


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/

[annegarrett]

From another response from one of our experts:

Her best bet is to seek out someone from Duke or UNC. Those institutions are staffed with full time clinical perinatologists that do deliveries. If she desires, she should ask for a transfer of care and referral to anyone of the perinatologists at UNC (Kim Boggess, Honor Wolfe, Bob Strauss, Ken Moise, etc) or Duke.
Hope this helps,

Dr. Garrett Lam
Preeclampsia Foundation 2001 Vision Grant Recipient


Anne

[kelly_0204]

Hey Girly,

I had a dr of the same ignorance. I kept telling him I was sick I had severe nausea w/ vomiting, spikes in bp ranging from 150/90 and up, SEVERE HEADACHES, Streaking of lights in my eyes etc etc etc. He said my bp spkes was due to me throwing up and the headahces was due to straining and the streaks was due to me straining to throw up. I was admitted at 16wks and kept for 3 weeks but they kept saying "nothing was wrong with me too" I overheard the nurses talking about me saying I was being such a baby and they'd love to see how I handled birth. I am the type of person who WILL NOT complain unless something severe is wrong with me.
Well, when I went into preterm labor he even said I wasn't in labor and sent me HOME @ 100% effaced and 3cent dilated. I returned 2 days later with contractions ever 2 mins I was at 4cent dilated and a -2station. I was 30 wks at this time. WELL instead of letting me go ahead and labor they decided to make me wait. My protein at the time was 750 and still going up. I was gaining 7-9lbs a DAY and my dr kept saying "Oh your not swelled." Well he flew off to cancun and the dr who was taking his place came in and noticed how sick i was. He decided to induce me on April 1st. This was around March 22. Well under the new dr's care I went eclamptic and had seizures on March 25. In turn I HAD To have surgery due to the ignorance of my doctor! If he would have actually LISTEND to me instead of going by a monitor he would have found out I had hyperthyroidism which is what CAUSED ALL MY PROBLEMS. I suggest you find a doctor that REALLY know's what he's doing b/c Preeclampsia is NOTHING TO joke around about or IGNORE. Doctor's need's to learn to listen to the patient and look at the signs/symptoms WE"RE exhibiting instead of thinking their all and mighty health fixers and know it all's. [:(!][:(!][:(!]

Girly I will pray for you and I pray that you find somebody who know's what their doing and you don't have to indure what I did.

((((((hugs)))))))
Kelly

[cjellavsky]

Thanks for everyone's responses....you all have been a wonderful resource. Thank you for sending the info. about the Dr. at Duke.. Ironically, one of my OB's that I told you about in the hospital (the one that has discounted everything) said he called a Dr. Wells at Duke Perinatal and he said that they called me an enigma, because they couldn't figure why I could have these headaches. I think that my OB probably told his side of the story, which like I said...discounted what I am going through. Well, the latest since the night before I left the hospital is that I have been having a LOT of Braxton Hicks. In fact tonight, my lower half is cramping so bad it is hard to stand up straight. I am having a lot of those Braxton Hicks in the past 2 days. My BP readings today have been over 140/90... You can only my hesitation in calling anyone at L&D about these contractions, because they are so irregular. I want to wait until my Dr. appt. on Monday. I cannot believe that I have gotten to the point where I am nervous about calling anyone for fear that somehow I will be made to feel that it is all in my head and they will be like "My goodness, is she a hypochondriac???". I actually have a high pain threshold...but, my two weaknesses are bad headaches and cramping...can't stand those two things. Any advice???