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When will I start feeling better???

Have you suffered from HELLP syndrome or had a pregnancy complicated by an underlying disorder? Discuss your concerns here

When will I start feeling better???

Postby dracarey » Sat Sep 03, 2011 00:54 am

by dracarey (5 Posts), Sat Sep 03, 2011 00:54 am

Hi all.

I wasn't really sure where to post this, but I had read some similar posts in this forum, so I figured it was worth a try. Sorry for the length of this post. I have a lot to get off my chest.

I've always had health-related anxiety. Over the years, I'm sure that I've diagnosed myself with hundreds of different conditions, and I've always been incorrect. Except this time...I feel very lucky with the timing and how everything worked out, but it is still terrifying to me to think of how ill I was.

I'm 29, and this was my first pregnancy. When I was 26 weeks, my blood pressure had started to spike periodically. Not going above 140/90, but higher than it should be in the second trimester. I wasn't put on blood pressure medications, and the word "preeclampsia" was very foreign to me. I was aware of it, but I think I failed to grasp the seriousness. Considering my anxiety, I'm actually glad I didn't find this forum until a little further along in my pregnancy. ;) I was monitoring my own blood pressure with a monitor someone had given me, and at 29 weeks, my blood pressure was up around 170/110 and was not coming down. I went to labor and delivery, they confirmed that bp was very high and not coming down. I was started on mag, hydralazine and was airlifted to a more specialized hospital with a higher level NICU.

My experience at that hospital was terrifying, although again, I feel so lucky to have been surrounded by specialists who recognized everything that was happening to me. I got steroid injections and was started on labetalol. Ultrasound showed that while my dopplers were still okay, our baby was only in the 6th percentile for her size. (I was told that my uterus was measuring small prior to the ultrasound). This was supportive of IUGR. After 4 days, my blood pressure was sky-high again (180/116), I was experiencing wracking back pains, and my blood work was showing the beginnings of HELLP. They tried to induce me, but even with minor cramping, Lucy's heart rate would drop. She was delivered at exactly 30 weeks via emergency c-section, and weighed 2 lbs 9 oz. I developed pulmonary edema in the 24 hours postpartum, which resolved with lasix. Otherwise, things seemed okay.

My blood pressure was "okay" after delivery. Everyone kept assuring me that birth was the cure and my blood pressure would regulate. 3 days postpartum I was back in the ICU with crummy blood work, pressures of 200/113, and bleeding from my heparin injection sites. My incision was bruised and swollen. 1 week postpartum my incision broke open due to a large hematoma, which soaked through my jeans and sweatshirt. I suspect this was likely due to the HELLP and my drop in platelets.

I was discharge with blood pressure of around 140-150/85-95. The doctors told me they were comfortable with blood pressure under 160/106. I knew I would monitor myself very closely, and I was desperate to get out of the hospital at that point. I was discharged on 30 mg Procardia XL every 12 hours and 300 mg labetalol every 8 hours. My pressures were 120s/80s at home, and 130/80s at the doctor's office. I was told I would be on that dose of medication for 6 weeks at which point they would start weaning me.

For the most part, my pressures were okay after discharge, with the exception of spikes of 140-150/90-100. Generally, these spikes were short-lived. I am OBSESSIVE about measuring my blood pressure. I am terrified I am going to miss something. I was so anxious during those 6 weeks postpartum, waiting for the other shoe to drop and have PE rear it's ugly head again. And I kept waiting for my pressures to just start dropping like everyone assured me they would, and it wasn't happening!!!

I'm now 7 weeks postpartum. My pressures at home can be anywhere between 114/69 to 147/97. Generally they are "normal", but I still have those high blood pressure spikes!!!! My doctor thinks I am ridiculous, and is starting to wean me off my meds, because at his office my pressures are 130/70-80. Sometimes I think his nurse isn't measuring my pressure correctly. I complain about certain things, but I really think he is dismissing me because he thinks I'm hypersensitive. He thinks I need to relax, stop monitoring my pressures at home and "let him drive" to quote him directly. He also repeatedly tells me that "I'm young and my body wants to heal." SCREAM! My pressures still aren't great, I've still got edema around my ankles (which he tells me isn't that bad), I develop tightness in my chest and a cough periodically, I get migraines (that are unrelated to blood pressure spikes). My skin feels crawly and sensitive, and I still can't get my wedding rings on. My blood work is perfect, I'm not spilling protein, but other than that, nobody seems to give a hoot about my symptoms or my pressures. I think I'm just supposed to sit back, relax and let go of the intense anxiety that plagues me. Because I'm young, and my body wants to heal. From where I'm standing, it's not really acting like it wants to heal. I'm scared to do anything because I'm afraid I'll start to "feel" my pressure rising. I'm driving my husband insane with my constant monitoring. I'm driving myself insane by worrying about every little twinge and weirdness.

Is my body so damaged that I'll never be normal again? I feel like at these dosages I should be passing out from low blood pressure. I know I'm probably a chronic. I have no idea what my pressures were before pregnancy. I'm tired of all these other symptoms. I just want my body back. Is this all normal? I need some serious encouragement.

As far as my daughter goes, she is now 4 lbs 11 oz, and is doing very well, all things considered. We have been moved back to our home hospital, and while she still needs her feeding tube and still has dips/desats, we are really happy with how she's progressing. She's a real brightspot.

Thanks so much for your help and support.
dracarey
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Re: When will I start feeling better???

Postby caryn » Sun Sep 04, 2011 00:04 am

by caryn (10131 Posts), Sun Sep 04, 2011 00:04 am

Welcome - I'm glad you've found us. And no, you are not overreacting. This is terrifying when it happens, and it threatens most everything you really value. I'm really glad to hear that your daughter is doing well!

It took me 5-6 months before my pressures really dropped to the normal range, and even then the readings were high, for me. The just-feeling-off-in-your-body thing really resonates for me as well. It does get better, I promise. But I am a bit worried about the anxiety, not because it's unreasonable mind you. Because it reinforced a level of vigilance over your health that you say you're not comfortable managing. A *lot* of us have postpartum PTSD, and In your shoes I would really want to follow up with a therapist, let that person know that you need help with this, and see if there are suggestions that can help.

These conditions are acute, and you really do get better. Recovery for those of us with serious damage takes longer than the textbooks say, sometimes. For some women, underlying conditions appear, but you're not postpartum enough yet to say that that is what is going on with you.

Please do keep posting. Everyone finds us after the trainwreck, and while I'm sorry you're in our club the good news is we have a club and you're in it!
Science! The articles you don't want to miss:
The Preeclampsia Puzzle (New Yorker) and Silent Struggle: A New Theory of Pregnancy (New York Times)
Looking for recent articles and studies? Lectures from researchers?
A chance to participate in research? For us on Facebook or Twitter?

Caryn, @carynjrogers, who is not a doctor and who talks about science stuff *way* too much
DS Oscar born by emergent C-section at 34 weeks for fetal indicators, due to severe PE
DD Bridget born by C-section after water broke at 39 weeks after a healthy pregnancy
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Re: When will I start feeling better???

Postby Ginny » Tue Oct 04, 2011 08:07 am

by Ginny (1 Posts), Tue Oct 04, 2011 08:07 am

Hang in there! I was post partum HELLP September 6 2010. It took 4 months for my liver to heal. My blood pressure is still erratic, even today and I'm still on BP meds but MUCH, MUCH better than it was. It's my new normal. Keep asking the doctor about what you are feeling and keep telling the doctor your symptoms. Some of us just take longer to heal. As for your anxiety, it is perfectly normal to feel it. Don't feel bad about asking for some anti-anxiety medication. You've been through a tremendous amount and it may take just as long to heal emotionally and mentally from the whole thing. I still have nightmares about my experience but I have them less often now. Still healing emotionally as well. It's a traumatic event to go through. Time does heal all wounds. This is still fresh for you. In my experience, the syndrome hung on longer than most people experience it and certainly much longer than my doctor said it would. Every body is different and will respond in different ways. Rest and know that you are not alone. Trust your body and listen to it. -Ginny
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Re: When will I start feeling better???

Postby catherine » Tue Oct 04, 2011 05:13 pm

by catherine (2832 Posts), Tue Oct 04, 2011 05:13 pm

You"ll get there in the end, it just may take you longer than you expect. The aren't misleading you when they tell you that you are most likely to recover completely.

I too had HELLP syndrome with my Lucy (clearly we have some karmic link) and I remember how lousy I felt even as I healed. Even when the numbers declare you on the mend, you may not feel like that is true. Part of this which you may not have registered in all the frenzy is that you are also recovering from delivery. With that comes the extreme nastiness that is the post partum phase with ick and hormones battling it out for supremacy....only in mythology and Hello magazine do women rebound from pregnancy with a bit of yoga and a spritz of coconut water.

So, I want to say that I was completely dragging for about a month, then my recovery started to pick up. Incrementally at first but then by leaps and bounds and I know that I was back to dance class in January... Say 2.5 month because my Lucy's birthday is in 10 days time.

That said, the other posters are correct, emotionally this can be tough and there's no harm in finding help, either here or in the real world.
Mom to Finn, Lucy (HELLP syndrome) and Chloe
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Re: When will I start feeling better???

Postby AClore » Sun May 06, 2012 07:29 pm

by AClore (19 Posts), Sun May 06, 2012 07:29 pm

I am the exact same way. Constantly waiting for the "ball" to drop so to speak. My anxiety is through the roof and I refuse to check my bp because of it. I dont see my family dr for another week so I wont know what my bp is until then. Im trying my hardest not to think about it. I am a week postpartum and my little one is doing great!! He was born at 38 weeks. I had a seizure and had to have an emergency c-section and i think alot og my anxiety stems from that. My dr put mr on an antianxiety med but I wont take it becausd I am breast feeding. Im on aldomet 3 times a day and its ok to take while breastfeeding. If you need a friend id be more than happy. I dont want to struggle in silence
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