Pre-existing Retinopathy

[Kaz C]

Hi everyone, am new here and hoping for some advice. I'm a 33 year with T1 since age 4. I've been through the wars over the past few years with severe retinopathy and vision loss in one eye (Lucentis, vitrectomy etc) The other eye is classed as dormant, and vision still good there - currently, and keeping it all crossed.

Has anyone gone through a pregnancy with this problem? My eye doctor has said I will be ok to try providing the macular in both eyes remain fluid-free but it still a daunting prospect. I obviously can't afford for anything adverse to happen in the good eye. We're desperate to become parents and this issue is causing no end of upset at home.

Last HbA1c was 6.9. Taking aside the eye issue, diab consultants would give me the green light at 6.9 but ideally 6.5. Am working on it. Have just been approved for a pump and should be on that by October.

Any advice/experience would be gratefully received.

 

[Northerner]

Hi Kaz, welcome to the forum 🙂 Sorry to hear about the problems you have had with your eyes I haven't had a pregnancy with this problem as I'm a bloke! But I believe we have one or two members who may have, so hopefully they will be along to share their experiences 🙂

 

[novorapidboi26]

Has your HbA1c always been on the 7 mark.........

if so, what do you think has caused your eye issues, blood pressure?

 

[trophywench]

Hi Kaz

Girl on another forum had minor eye troubles exacerbated greatly by preg - mainly her BP rather than her BG that did the damage. Took her about 18 months, and the eye man was highly dubious as to whether she ever ought to get preg again. However when No 1 was 3, she got the go-ahead and has recently had No 2 baby, with no eye troubles at all.

We know that sudden improvement in BG is actually really bad for your eyes, retinopathy wise, even if your BG/A1c was rather good to begin with - the main problem being that in preg, you constantly strive to keep your BG within very narrow margins for far longer out of every single day, than is humanly achievable on MDI or 'that' incentive - enough insulin to stop the spike at 2 hrs, then snack to stop the hypo at 4 hrs .... there's just not enough time in a normal life to do that, methinks. Without a pump that is......

I had a pump in mid 2011. Feb 2012 and my eyes were a minefield of (only 'background' TG) retinopathy. I wasn't best pleased. Feb 2013 after another year of improved control - NO TRACE OF ANY. And there had been one spot in one eye, since the mid 1990s !

Get that pump and improve your 24/7 BG.

Then GO FOR IT !

 

[Twitchy]

Hiya. I don't really want to advise you, as this is a hugely personal, massive decision, but I'll share my experience in case it's any use to you. I was dx at 11 months old in '79, & had my first baby in 2007. I'd already had background retinopathy for some years & it took about two years before trying to conceive to get my HbA1c from high 7s to 6.5ish, it got down to 5.8 during pregnancy. I had severe pre eclampsia & had my son by c section, but I don't know if it was that that affected the eyes or not, but a year or so later I had proliferative retinopathy needing lots of laser to both eyes. Things seemed to stabilise eventually but because of everything that had happened (long story) we didn't know if trying for another baby would be safe. We had some long talks with eye & obs docs & a barrage of blood tests (to check kidneys etc) & got the go ahead...during this pregnancy the proliferative retinopathy took off again, & continued after, meaning mutiple bouts of laser during the pregnancy & eventually needing a session of laser in theatre afterwards. Scarring from all the laser eventually meant I needed a vitrectomy in one eye & now, 3 years down the line, there are the first signs of maculopathy.

If we'd been advised that it was too risky, we'd have looked at adoption...as things stand I was told that my second pregnancy should be my last one, due to the eye problems. I'm extremely fortunate to have been able to have two kids,I know other 'old' diabetic mums who were advised not to go for second pregnancies. Hopefully in the future women won't have to even worry about it, if more people have access to pumps from day 1?! Ultimately I guess you have to take abalanced view - you alone know how bad your eyes are now, & what the docs have said about the risk to your sight if you have a pregnancy. I guess you need to think about how you will manage if your sight does deteriorate, and how you'd manage with a small child in that situation (not trying to scare you, just that's how we approached it!). Not an easy decision to make, one you both need to talk through I guess. Best of luck, fingers crossed for you!

 

[Kaz C]

Thanks for your replies everyone - it's true what they say, it's good to talk.

Twitchy, thankyou for sharing. The situation you were in with Baby No. 2 seems to be where we're at. My husband has, understandably, said he doesn't want to go ahead if it would leave me unable to cope with a small child. And I am selfish enough to admit that the thought of losing my reading sight in both eyes is too terrifying to risk having a baby.

I have another check up next week at Moorfields so will await the results of that OCT scan. Have noticed a slight drop in vision in good eye in the past few weeks so not looking forward to the appointment

No, HbA1c not always been good. I went off the rails in my late teens, then ran pubs up and down the country and trying to get into a new clinic system with each move was a bit of a postcode lottery.

You never think it will happen to you I guess. Wish I could give my 18 year old self a talking to........

Thanks again

 

[Twitchy]

Hi Kaz,

It's not an easy predicament is it? To some degree if it's 'just' retinopathy affecting the periphery of your vision that's more manageable, but worth getting your doc to give you likely & worst case scenarios for your central vision so you can make an informed choice. The massive thing in your favour is being under Moorfield - after my initial experiences at a local hospital (long horrible story) I managed to get my care transfered to Birmingham, which together with Moorfield is top of the eye hospitals in this country...so you've got the right team looking after you! 🙂

Once again, very best of luck whatever way you decide to go. Xx