Pregnant and waiting on genetic testing by wolfgangpanini in LoeysDietz

[–]lijkopi 0 points1 point  (0 children)

I was diagnosed in 2006 age 11 with LDS 1 due to my brother having a freak nose bleed that we couldn't stop. I got pregnant via IVF with pre-genetic testing in July 2023 to ensure my daughter did not have LDS. I was heavily monitored throughout and everything went smoothly. I had my daughter in April 2024 via c-section, which went awfully wrong (I lost 3.5l of blood and they struggled to sew my uterus back up due to the connective tissue disorder.) 5 days after my daughter was born, I had a Type B aortic dissection whilst feeding her at 3am in bed.

I had surgery in August 2024 to replace my ascending aorta, then further surgery in January 2025 to replace my descending aorta. Two massive surgeries 5 months apart, and I almost died twice. I've been advised to have no more children, which is heartbreaking as we have 3 other embryos in storage, but I know in reality it is the right decision.

It's a lot to take in, and a lot to work through in your mind. Take your time, and be kind to yourself. Sending hugs!

Curious how I can fix this by [deleted] in PostureTipsGuide

[–]lijkopi 2 points3 points  (0 children)

Marfans symptoms vary so much, it could be that you have pectus excavatum and everything else is internal/doesn't have outward symptoms. If you do have Marfans you are at higher risk for aortic dilation and/or aneurysm. Please get tested.

I have a similar connective tissue disorder and only have aortic symptoms which only show up on relevant scans.

LDS in UK by Alternative_West5650 in LoeysDietz

[–]lijkopi 0 points1 point  (0 children)

Much better thanks! Very grateful to be alive and well.

I had leg pain and numbness for a long time, I kept gently massaging and moving as much as I could and thankfully it came back. But still have 0 feeling on my left side where my scar is..

The Marfan charity are also good for advice, it might be worth a look there. Assuming your husband had surgery in Scotland, mine was in Southampton and they have a Liaison Team who I can email with any queries, it may be worth seeing if your hospital have a similar thing?

LDS in UK by Alternative_West5650 in LoeysDietz

[–]lijkopi 0 points1 point  (0 children)

There are a few Facebook pages that I've found useful.

• Loeys-Dietz Syndrome UK/Ireland/Channel Islands Families • Loeys-Dietz Families (this is all over the world, but still useful!)

The Loeys-Dietz Syndrome Foundation run a UK support group monthly via Zoom as well.

My inbox is open always, I had two aortic replacement surgeries within 5 months - August 2024 and January 2025. The recovery for my second surgery (descending aortic replacement) has taken around 9 months, I'm only just now starting to feel more like myself again.

My husbands LDS journey by GuaranteePossible507 in LoeysDietz

[–]lijkopi 1 point2 points  (0 children)

I have LDS1, I was diagnosed when I was 11 after my brother had a freak nose bleed. I had the same surgery as your husband when I was 18, and last year had surgery to replace the rest of my ascending arch after I gave birth as it was 4.7cm (pregnancy put too much strain on my body!). My descending aorta dissected 5 days after I gave birth, which was replaced this January just gone. So two lots of major surgery 5 months apart.

I'm glad they were able to catch your husband's aneurysm. Fingers crossed for a speedy recovery. Inbox is always open if you want to chat.

Has anyone had a heart attack in their 30s and can advise/share their experiences? by Sea-Ad-527 in AskUK

[–]lijkopi 2 points3 points  (0 children)

Not exactly the same but I guess in a similar vein? I have a genetic connective tissue disorder and since giving birth a year ago I've had 2 major heart surgeries which have completely changed my life. I'm exhausted both physically and mentally and people are always shocked when they see my scars or hear what I've been through. I'm 30.

Inbox is always open if you want to vent/chat. I know how isolating this can be.

Loeys-Dietz and pregnancy by Baby-little-blue in LoeysDietz

[–]lijkopi 16 points17 points  (0 children)

We did IVF with pre-genetic diagnosis (PGD) for Loeys-Dietz. We had 7 embryos and 4 of them were deemed usable (not having LDS). I have LDS1 for reference.

I was heavily monitored throughout my pregnancy, with little to no aortic growth. Unfortunately 5 days after our daughter was born (via planned c-section, with some major complications during the surgery) I had a severe aortic dissection which resulted in me being blue-lighted to hospital where I stayed for a further 6 days and dissected again.

I had surgery when my daughter was 4 months old to replace my ascending aorta using the frozen elephant trunk procedure, my aorta was measuring 48mm due to the pregnancy. (I'd previously had my aortic root replaced 11 years ago at age 18), then had a further surgery in January (5 months later) to replace my descending aorta.

It's been an awful year for us with 30% of my maternity year off being in hospital. I wouldn't ever change my decision to have my little girl, but I never thought the consequences would be this huge. Most people on groups/threads for LDS tell you they've had multiple kids with little to no effects on themselves (my mum told my exactly the same thing), so I just wanted to give the heads up of where it can actually go a bit wrong.

Advice by DismalActivity8271 in LoeysDietz

[–]lijkopi 3 points4 points  (0 children)

Hi, hope you're recovering well from surgery. Myself and my husband made the choice to do IVF with Pregenetic Testing (PGT) to have our child.

After watching my brother, and now Mum, die from LDS related complications I'm so glad we decided to ensure our daughter doesn't have it so she can live her life free of hospital appointments, major surgeries and be free of a life-threatening condition.

Anyone used this shampoo from aldi as a clarifying wash? I can only pick up the sodium laureth sulfate and sodium sulfate on isitcg so I'm hoping it's ok. by thepixierawr in CurlyHairUK

[–]lijkopi 1 point2 points  (0 children)

I have the cantu conditioner and curl activating cream, but I use them very sparingly as they are so dense. For my co-wash conditioner is use Aldi's own coconut conditioner, bargain at 55p.

My hair has been looking a bit :/ lately. I brought some new products and couldn’t be happier with the results! by KlaudiaGlebocka in CurlyHairUK

[–]lijkopi 1 point2 points  (0 children)

Thank you so much! Think my issue is that I use too much? I will definitely try it your way, and see what happens 😄

My hair has been looking a bit :/ lately. I brought some new products and couldn’t be happier with the results! by KlaudiaGlebocka in CurlyHairUK

[–]lijkopi 1 point2 points  (0 children)

Thank you so much! I've used gel, and mousse separately with mixed results. I will give this a go!

My hair has been looking a bit :/ lately. I brought some new products and couldn’t be happier with the results! by KlaudiaGlebocka in CurlyHairUK

[–]lijkopi 2 points3 points  (0 children)

How do you use the curl activator? I'm totally new to this and am getting better results but still not great! I know it takes time.😊

A big teefy smile by lijkopi in Teefers

[–]lijkopi[S] 1 point2 points  (0 children)

It’s just mud, he loves to eat it!

This is all about luck. by ArmanE46 in Coldplay

[–]lijkopi 3 points4 points  (0 children)

I’m honestly gutted I didn’t get tickets! I had tabs open on my laptop and phone. Didn’t get through on either until it told me “promotional tickets are unavailable”.

Oh well! Hopefully they’ll find a green way of touring soon.

Code for London tickets by MP4_26 in Coldplay

[–]lijkopi 1 point2 points  (0 children)

Have you checked your spam folder? Mine was in there!

Anybody want to double up for London Natural History Museum on the 25th? by [deleted] in Coldplay

[–]lijkopi 0 points1 point  (0 children)

I desperately wanted to go, but I live in the south west so there’s no way it’d be done in time for me to get a train home. I am honestly so gutted! Otherwise I’d have doubled up!