Retinal Detachment & Vision Loss due to PE

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Retinal Detachment & Vision Loss due to PE

Postby cgellura » Thu Aug 11, 2011 08:20 am

Hi everyone. I'm typing this pretty much blindly but thankfully I can type without looking at the keys. So please disregard errors and such.

My son was born on Sunday afternoon via csection at 32 weeks due to severe PE. He is absolutely perfect and doing amazingly well in NICU. We could not have asked for a better outcome for him at this point in time.

Me, on the other hand, am kind of a mess at this point. My PE quickly went from mild to moderate to severe. Delivery became necessary on Sunday (August 7) because everything was just getting out of control from PE. So the c-section took place around 4:00 on Sunday and was totally uneventful. I was started on Magnesium Sulfate just prior to the surgery and also some IV fluids. I had the typical side effects of Magnesium like very heavy eyes and some blurry vision. I was on the Mag for 24 hours and after being taken off things returned to normal for me pretty well. My eyes didn't feel heavy any longer and my vision went just about back to normal. I was able to get up a few hours later to use the restroom and transfer to a chair (though it was PAINFUL!). I felt like things were going very well. My swelling was pretty obvious (face, hands, legs) but to me it seemed less than it was with my first pregnancy. At some point overnight I startted to notice that my vision was getting blurry again. I thought it was odd since the magnesium was over, but I just mentioned it to my
nurse anyway. Over the next few hours it went from a little blurry to basically non-existant. I mean, I wasn't sitting in the black totally blind, but I had ZERO focus and ZERO detail on anything. It was absolutely terrifying. Things progressed pretty quickly from there. The hospital called in an eye specialist from a Philadelphia eye specialty hospital and it was quickly determined that I needed to be transfered. So the decision was made at that point that my vision loss was more urgent than my post-surgical and preeclampsia care and they sent me over. It was a gunwrenhing move for me because here I am laying BLINDLY in the hospital with a newborn in the NICU and they were taking me out of my comfort zone and transferring me away from the baby. I knew it had to be done though. As it turns out, my retinas detached due to all of the swelling from preeclampsia. My doctors and nurses had HEARD about this happening as an extremely rare side effect of preeclampsia bad had never had it actually happen to their patients (this is a pretty large group and hopsital too!) So as of now, I have very limited vision. What I CAN see if very blurry and unfocused. When I was discharged from the hospital last night we stopped by NICU to see our son and I could tell that my vision is much worse in the darkness/night. The doctors are hopefull that my vision will return to almost normal at some point but they just can't say how long it will take. I've definitely had some improvement int he past 24 hours but it's still not enough to function normally. What kills me is that I can't see my son.I mean, I can see his shape but I can't see the details of his face and stuff. That is the hardest part for me right now.

If you respond to this message please keep in mind that I can't really read your responses. I plan to get my husband to sit with me later on and go through some of my email and facebook stuff so we'll stop by here later too.

And PLEASE, if you've been through this situation (blindness or retinal detachment due to PE) PLEASE write to me! My email is christinageorge1976@gmail.com

Thank you!
Christina :!:
Last edited by cgellura on Tue Jan 03, 2012 10:59 am, edited 2 times in total.

Mom of 2 young children. Severe preeclampsia with both pregnancies. Having a third in 2014
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Re: Retinal Detachment & Vision Loss due to PE

Postby sam10 » Thu Aug 11, 2011 09:59 am

First of all, I am very glad to hear that your son is doing well, so Congratulations little one! Not to be able to see him though must be so hard and terrifying for you. I hope very much that your vision will improve soon, so you an move on to some sort of normalcy. It sound all very scary. I will keep you in my thoughts. (hugs)
~Julija (40)
MC 3/2009 and 3/2011
Henry (1/1/2010-1/7/2010) - forever loved and missed; severe PE with Hellp; partial placental abruption, classical c-section at 25.6 weeks
Matilda (Nov. 2012, born at 35.4 weeks) - severe PE


Our pain has been put into words, placed into empty cradles, to remember that all our babies lived, that they mattered and always will. - Field of Cradles http://www.fieldofcradles.org/
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Re: Retinal Detachment & Vision Loss due to PE

Postby heather j » Thu Aug 11, 2011 01:47 pm

I am SO sorry; I can't begin to imagine how scary that must've been for you. :( Julie, one of our former Forum Administrators, I believe suffered from something similar after her first baby boy was born. She isn't able to be around much, but I'm going to see if I can get in touch with her for you. Hang in there!
Heather (PAI-1 4G/4G) mama to:
Nicolas Edison (6/2004) 36 weeks, PE, HELLP, and placental abruption
Ella Amelia (3/2007) 37 weeks, lovenox, PE-free
Oliver Lyon (1/2011) 37 weeks, lovenox, PE-free
Milo Mason (2/2014) 39 weeks PE-free
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Re: Retinal Detachment & Vision Loss due to PE

Postby cgellura » Thu Aug 11, 2011 02:23 pm

Thank you! I'd love to hear how her recovery went and if vision ever fully returned...

Mom of 2 young children. Severe preeclampsia with both pregnancies. Having a third in 2014
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Re: Retinal Detachment & Vision Loss due to PE

Postby julie f » Sun Aug 14, 2011 03:36 pm

Christina,

I will send you a private email, but wanted to post here as well in case there are others that read through this thread later.

With my first pregnancy in 2003, my preeclampsia went from bad to worse very quickly as well - and my eyesight went along with it too. I was never diagnosed with detached retinas, and I can't believe it but I can't remember what they did call it. It was very similar to what it sounds like you're going through, they stated that it was due to all of the internal swelling - my optic nerve had been squeezed, blood flow had been restricted and it was causing the loss of vision. Technically, I could see, but I couldn't focus on anything. It was almost as if I could see better out of my periphery versus looking at something straight on. There were big brown thumb prints in my vision that got progressively worse for the week I was in the hospital. And I needed A LOT of light, when it was dim in my room, I could see/focus even less. I remember the neurologist holding up a large sign at the foot of my bed and I couldn't tell what it was, so frustrating and so scary. I was discharged with it still being like that and I remember wondering how in the heck they could send me home like that, I was terrified. All of the doctors told me they "thought" my vision would return to normal but no one could give me time frames, or specifics. We had several follow-ups were continually told to wait and see, sit tight... I feel so much for you, I remember being so scared.

Thankfully, I can tell you that everything did eventually return to almost normal. I can't remember specific time frames, I'll have to search through some of my old posts and get back to you. I want to say that it was dramatically better within the first few months, I could focus, but whatever I was looking directly at was still a bit blurry. I remember looking right above what I wanted to see, in order to be able to see it best - does that make sense? I still needed more light than normal, I had all the lights on in the house, all the time. But I could watch TV, I could read signs, etc. I was able to use the computer, and read books/magazines but it did take a bit longer to get through things because everything I looked directly at was slightly distorted. At this point, it's obviously as good as it's going to get and it doesn't bother me anymore. I still use more light than I used to, but I don't have distorted vision, I can clearly focus. The only time I really notice is in the dark. For example, when I'm putting the kids to sleep, or checking on them, I have too look at their foreheads to be able to see if their eyes are closed - if I look directly at their eyes, I only see a dark blur.

I hope this gives you a little bit of hope. I know how bad it is right now, and how scary. I pray that your recovery is swift. I'll email you my number and please feel free to call me anytime. And if you have any questions, don't hesitate to ask. I remember how helpful everyone here was to me, and of the support and encouragement I received - it literally was the only reason I got out of bed most days.

Thinking of you,
Julie
Julie
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Jackson, January '05; 36 weeks
Ellie Jayne, August '09; 38 weeks
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Re: Retinal Detachment & Vision Loss due to PE

Postby cgellura » Sun Aug 14, 2011 09:38 pm

Julie, I am so happy to hear from you! It is so nice to hear from someone who has been through just about the exact same situation - there don't seem to be many of us. A woman named Rachel contacted me by email about her PE vision loss which was helpful as well.

I know exactly what you mean about having to look at things off-center to see them more clearly. When my vision was at its worst that was the only place I had any type of vision (peripheral vision) - everything in the center was blurry, wavy, 'stamped' with color, etc. It is very frustrating. My vision is definitely a lot worse in darker settings and at night. Even with all of the lights on in the room it's still much darker than normal. Both of my retinas detached, not 100%, but there were very evenly detached in both eyes. There was no pain or anything associated with the detachment (thankfully!). It's so scary to think that something so dramatic can take place without a person even feeling it or knowing something is going on. My only clue came in the middle of the night when I got up to use the bathroom and noticed things were getting very blurry. By 7 am it was just gone...

Mom of 2 young children. Severe preeclampsia with both pregnancies. Having a third in 2014
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Re: Retinal Detachment & Vision Loss due to PE

Postby laughinggirl127 » Tue Aug 16, 2011 01:48 am

I had roughly the same problem with my second child. shortly after delivery my vision got that brown thumb print that was talked about. I could see blurry light but not much else. I do not know if my retinas detached or were starting too. NO one ever looked in my eyes. I just reported the vision problem. The doctor told me it was cause by the swelling in my retinas and that it would return to normal. after about two days the "brown" went away but the blurry stayed for the next 3.5 weeks. and then one morning I could just see. My bp were significantly higher in this pregnancy that my first. I remember in the delivery room the last pressure aloud was 225/180 and I did have significant swelling. I dont have the residual problem of the blank spots. It returned to 100% what is was before pregnancy, which is pretty blind with corrective lenses and glasses. Hope that yours clears up like mine did. I remember not being able to go anywhere because I wasn't cleared to drive. (just can't understand not wanting the blind to drive) and my daughter was at a hospital two hours away so I didnt get to see her but twice a week when someone could take me. Spent many an hour "listening" to the tv because I couldn't focus on it. From what I could determine the swelling there took the longest to clear so I pray that you have a speedy recovery. my thoughts are with you.
DS born 2003- 39 weeks preeclampsia, 6LBS 7oz
DD born 2009-32 weeks preeclampsia, 3LBS 1oz
DD born 2012-38 weeks, PIH, IUGR 5lbs 4oz- no pree
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Re: Retinal Detachment & Vision Loss due to PE

Postby julie f » Tue Aug 16, 2011 12:35 am

Christina,

I tried to email you, but for some reason wasn't able to - if you email me at pelote77@aol.com, I'll email back my contact info in case I can be of any help.

Julie
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Zachary 07/22/03-/7/27-03; 26 weeks
Jackson, January '05; 36 weeks
Ellie Jayne, August '09; 38 weeks
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Re: Retinal Detachment & Vision Loss due to PE

Postby cgellura » Tue Jan 03, 2012 11:02 am

Just following up on my August vision loss (Serous Retinal Detachment) due to preeclampsia. It's now just about five months since my son was born and my vision has pretty much returned. It's not back 100% but I'd say about 90% is back. I can't complain. Night vision is not as good as before. Also, if I get sick (a cold or allergies) my vision gets a little worse. Next appt with the eye specialists is end of February. Thanks for all of your nice comments! -Christina

Mom of 2 young children. Severe preeclampsia with both pregnancies. Having a third in 2014
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Re: Retinal Detachment & Vision Loss due to PE

Postby cgellura » Mon Aug 20, 2012 01:54 pm

Hi everyone! I hope this message finds all of you healthy and happy. It's now been one year since I lost my vision due to severe preeclampsia. I am very happy to report that my vision is back to somewhere around 90-95% of my original vision. I can do everything I did before the vision loss. Yes, I've definitely lost some of my vision (5-10%) but it doesn't limit me in any way at this point, thank God! I've been seeing the retinal specialists at Wills Eye Hospital in Philadelphia, Pennsylvania all year and they have cleared me for the year. (meaning I don't have to go back for another year unless I sense a problem with my vision again) Yay!

My son continues to have absolutely perfect health and development despite being born at 32 weeks and 3 pounds. We recently celebrated his first birthday and I am so incredibly thankful that I was able to see the joy in his eyes and the smiles on everyone's faces that day, and every day.

My blog page about my vision loss: http://theloadeddiaper.wordpress.com/2011/09/12/preeclampsia-vision-loss/

Christina

Mom of 2 young children. Severe preeclampsia with both pregnancies. Having a third in 2014
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