educating ourselves and our families.....

Are you pregnant again after having preeclampsia once already in a previous pregnancy? Post your thoughts/concerns here - there are others who share your feelings. This is also the home of our Bedrest Buddies Support group.
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Re : educating ourselves and our families.....

Postby 3preemiekidz » Thu Apr 15, 2004 01:26 pm

It's pretty insiteful reading everyone's responses and different reactions to this question. In my case, I feel as if I CAN'T talk about it. Not that no one is interested or wants to know what happenned but because by me telling them or them reading about it, they get a pale look on thier face and start going on about how I'm going to die. My husband is the only one that seems a little more grounded and he just sort of accepts everything as it comes. It doesn't help that my mother is an NICU nurse and 2 of my brothers are doctors. Mind you, none of them really know much about preeclampsia but the little knowledge they do have just affirms their prophecies of doom and gloom for anyone that gets it. I was even talking to my brother and he asked me how many weeks I was. I told him almost 20 and he said "well at 20 weeks you'll get pre-e again" as if that was the magic number because that is what he read in a medical book. I tried to explain to him that it doesn't work that way but he refused to listen.

So although I very much want to educate others about this condition, I feel that if I do, I'm reaffirming their beliefs that it's going to kill me and that I shouldn't be having another baby. How do you talk to someone about preeclampsia and the dangers of it without them looking at you like you just told them you have cancer?

Mom to Audri 3,
Ezra 2,
Liya 1
and #4 EDD 8/1/04
born at 35, 29 and 31 weeks due to Pre-e/HELLP

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Re : educating ourselves and our families.....

Postby meljoi » Thu Apr 15, 2004 06:42 am

I completely agree......DH and family don't understand that this is something that can cause problems in years to come. And because I wasn't watched after my PE with Peyton, it scares me to death. I felt so horrible after having him and being released from the hospital.....when I was able to get around by myself, I suffered severe dizzy spells every time I stood up-it lasted for months. What also scares me is what effects if any his little body is going to have. I believe I read somewhere on the site regarding possible Diabetes-which already is an issue on my husbands side of the family.
I would say that I have not felt healthy since I had Peyton 3+ years ago......and now being pregnant again, I just feel like I wasn't prepared for this preg......(not that Peyton wasn't a surprise too) but now having gone through PE, I wish I had had time to go to a specialist prior to getting pregnant to make sure my body was in the best condition for this babe, in the hopes that I could take some precautions....and now here I am![:I] I constantly think about things that happened during Peyon's pregnancy and wonder about HELLP as well. I suffered horrible, painful heartburn from 6 months on......taking Tums like they were candy.....and when I was in the hospital being induced and doped on Mag (and begging for a c-sec) they checked my platlets and they were low......I dunno, it makes me think I had a whole lot more going on than I was actually told. I am now freaking out over every little thing.....last night I had really bad sternum area pain....almost felt like I ate WAY too much.....when I checked my BPM was just over 100, which I know isn't uncommon for it to rise during preg. of course when I laid down to go to dropped to the high 70's......I hate feeling like I am on gaurd! It making me loopy [:p]
Okay...I have written a book here. So, sorry!
On another note, DH and I finally broke down and got Peyton's haircut after 3+ years! His hair ws almost to the middle of his back....and with such a pretty little mug, he was getting mistaken as a girl all the time. He actually started telling people he was ALLERGIC to haircuts [:D]
and after his haircut, the woman said-"See, that wasn't too bad, huh?"
and Peyton said, "I only had a MILD REACTION!" [:o)] What a clown!!!

Thanks again girls......

Melissa Joi 32
DH Jeremy 43
mama to Peyton John 12/04/00 (severe pre-e @ 38wks)
2nd babe due 12/04

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Re : educating ourselves and our families.....

Postby deerhart » Wed Apr 14, 2004 10:12 am

What I think people don't get is that PE isn't just confined to pregnancy. Its not over for us. There just isn't enough information on what the actual effects of PE are on our future health and what having PE increases our risks of something else happening.
Doctors also don't know what permanent (if any) damage has been done to our bodies, our organs, or blood vessels, etc.. from having this condition and if we just drop it and say oh its a pregnancy thing, we may be passing up the opportunity to be proactive to prevent something else from happening later on.
We don't live in bubbles were each event is a singular event, seperated and not effecting things that come later, but instead live in a linear world where what happened to me today, yesterday, 4 years from today will effect and perhaps cause what happens to me tomorrow.

Moderator - First Time Moms, Parents of Preemies
Missouri State Coordinator
Mommy to Alex and Mason

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Re : educating ourselves and our families.....

Postby haunaniv » Wed Apr 14, 2004 08:53 am

I have found that it is hard to have someone understand something for which they have very little frame of reference. I think it is very difficult for someone who hasn't experienced PE to fully understand not only the physical difficulties of the disease, but even harder the emotional side of it all. There is no one cause for PE or one outcome which makes it even more difficult to understand. I find that even those closest to me, even after two PE pregnancies, worry that I spend too much time dwelling on it. I think their way of dealing with it is, "You don't have it right now, so why worry?" As for me -- I find that learning as much as possible about PE has helped me feel like I have a little more control in this all. I may not be able to control whether or not PE happens again, but at least I know what to look for, etc. It does give me some peace of mind. Rather than becoming too upset with those that don't understand, I have just resolved in my own mind to take those precautions I feel are necessary for the best outcome for me and my baby. Also, I guess in part they are right (although exremely hard for me to admit[:)]) -- It's one thing to educate myself about PE, and to be proactive, but it is quite another thing to become totally consumed by it all. With this pregnancy so far I have not had any major complications. No PE at this point. It's taken a lot of work for me to allow myself to actually enjoy this time instead of constantly worrying about "When is it going to happen?!" In short -- in my own experience I have found that it is just about impossible (and can be extremely frustrating -- i.e. Why don't they believe me? Why do they think I'm paranoid? etc. [:)]) to change the reactions of others, but I certainly can change my own reactions/perceptions. Take care - Nancy

Nancy: 36 yrs.
dd: 1994 - 40+ weeks, PE
dd: 1997 - 38 weeks, No Complications!
ds: 1999 - induced at 36 weeks, PE
Another boy! - EDD 6/23/04

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Re : educating ourselves and our families.....

Postby megansmom » Mon Apr 12, 2004 03:37 pm

It is so good to know that I am not alone! I know that glazed eye look. I get it from most people when I mention PIH or PE. I have been consumed with it since Jan 2002 when I had my little girl early due to PE. I don't think anyone can understand unless they've been down that road before. It is a scary and sometimes rough road. I know next time I will be well educated and hopefully will find a doctor that is understanding (still looking). I am getting copies of my medical records this week so I will know exactly what I am up against. Not sure if I want to know, but would like all the info I can get before the next go around. I just found out this weekend that my sister is expecting number 2. I am trying to gently tell her that she is at an increased risk since I had it. I don't want to scare her, but she needs to know. She had a lot of swelling last time and ended up having a c-section, but other than that had a great pregnancy. I just hope she never has to know the fear that PE brings. Hopefully our families will try to be a little more understanding. It sure does help to have all these women here that know exactly what I've been through and are willing to let me ramble anytime I want to. Although I am still new here, it has helped me so much all ready. Thanks so much!

Amanda, SAHM to Megan born at 34 weeks due to pe

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Re : educating ourselves and our families.....

Postby pugmommy7 » Mon Apr 12, 2004 09:07 am

Catherine, the shrek description is right on! Those pix are so gross. JABBA!

I think it is a little denial and a lotta fear.(on their part(s).
I think you are wise to want to educate yourself.
At some point, with many people, you just have to accept the limits of the relationship, and that this could be one of them.
We have a fantastic support group here, that will never tire of the subject.

Within my Dr.'s practice I can already tell which appreciate that I am gaining knowledge and which are annoyed by my armchair physician outlook, mixed with my natural anxiety. (although I find it pretty chaming[;)])
So..., instead of making an issue of either, I just try to modify the relationship with each individul, while maintaining a strong sense of self.(can ya' tell I have given this a lotta thought??)

Anyhow, I am always interested in what you have to say, and will offer an open ear whenever ya need one.(and I know the other memebers will too, since they do it for me every day!)

Mama to Bella,1/02/03, born 33 and 5/7 weeks at 3 lbs,6oz.Pre-E and PIH,& HELLP.
Babygirl #2,EDD 6/24/04

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Re : educating ourselves and our families.....

Postby catherine » Fri Apr 09, 2004 11:13 am

Laura, hey faceless moderator, I didn't know that you looked like Shrek, I just know that I did, right down to the colour of my face. Sadly my eyes pop a bit also (no surprise why you don't see my ugly mug) so adding to the overall effect LOL!

Melissa, if you go way back to this time last year, you'll find me stewing in a big old vat of denial, alternating with panic. I had no physical problems with my last pregnancy.. but I was fearful. I don't think anyone ever takes having a baby for granted after preeclampsia but for most of us, things work out well. Being forewarned, alert and wary is IMHO the best possible protection of your and your baby's health. So you are right on top of things [:)].

Mom to Finn, Lucy (preeclampsia and HELLP) and Chloe.
Moderator HELLP Syndrome Survivors

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Re : educating ourselves and our families.....

Postby akemt » Fri Apr 09, 2004 11:01 am

I agree with everyone. It has definately become a part of my life though there are people I know (pregnant now as a matter of fact) that had pre-e before and know nothing about it and could care less. I think it all depends on how much trauma we go through. I could be wrong. My mother and husband understand somewhat because they were there with me worrying when we were told I'd have to deliver at 30 weeks pg. Afterwards, my mother had the "stop dwelling on it, you won't get it again" theory. Where my husband has learned alot from what I've said to him. He doesn't look for info himself and doesn't feel the need. But, he is supportive and worried a bit this pregnancy too (hard to know with the silent types). Now that I'm showing signs and my doctor is taking this all very seriously, my mother has come around somewhat. I was trying to be prepared...she thought I was being overzealous and both were right, I'm sure. I have found that the general public could care less for the most part. Their eyes glaze over. I can't talk about pregnancy without talking about PIH. And lately I've hated the "how are you?" greeting. I've given to saying "it's all relative" LOL because in some ways I'm great, in others...freaked out about what is starting to happen. But, how do you explain all that and do they really want to know? Sorry! This is getting long.

Catherine (22), Moderator (pregnant again)
DH Britton (27)
Emma Margaret (03/02/03) 37 weeks from PIH & oligo
Baby #2 due August 11, 2004

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Re : educating ourselves and our families.....

Postby laura » Fri Apr 09, 2004 10:39 am

Catherine, how did you know I looked like Shrek? Did you see my pictures? You must have. And I agree, part of my family's head in the sand reaction is based on the fact that hypertension is so ingrained in our family 140/90 is kid stuff, round these parts.

Melissa, no, not just moderators can have their pictures, anyone can have an atavar! Let me do some checking though- before, the process involved emailing a pic to our webmaster, Angela. BUUUT, she's in the process of moving to the UK, so let's see who is runner up in that particular pageant.

Hang in there- the anxiety is definitely worst in the second pregnancy after PE- it'll get better, I promise![:D]

Moderator/AK Coordinator

Mom to Alicia (severe PE) 5/98 and Camille (htn, oligo) 4/03

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Re : educating ourselves and our families.....

Postby meljoi » Fri Apr 09, 2004 10:38 am

well.....A bunch more of you chimed in while I was about to post.

I want to thank each and everyone of you......
you understand, and I can not tell you what that means to me.
Maybe DH and the family will come around,
Deerhart.......I envy you!!! I hate to call myself passive.....but-well, I am passive. Hey this might be cause for me to become assertive, right? I vowed that I am going to be assertive with all my medical care this time who knows, watch out family!!!!!!
ha ha

Really, you guys are great
Thank you so much for the support!

Melissa Joi 32
DH Jeremy 43
mama to Peyton John 12/04/00 (severe pre-e @ 38wks)
2nd babe due 12/04

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