Friday, April 20, 2007

Aortic aneurysm and being pregnant

I s’pose it’s about time I talked about the health issues for me associated with having a baby. I have an aortic aneurysm, which is a ballooning of the aorta. Mine is in the aortic root (which is where the aorta connects to the heart), and is currently around 4.4cm. The upper range of “normal” is 3.8cm. My dad and aunt died of aortic aneurysms when they were 28 and 24 respectively, and their aneurysms were both in their aortic root, so it’s definitely genetic and not just a coincidence.

The cardiologist over here I see is David Liang at the “Stanford University Center for Marfan Syndrome and Related Aortic Disorders” who is fantastic. I was seeing a cardiologist back in Australia, but they were nowhere near as knowledgeable as the guys over here in the US.

Anyway, so Dr Liang said if we wanted kids we should do so sooner rather than later because if my aneurysm got any bigger, it would be too risky to go through pregnancy. So my Depo Provera injections finally started to be wearing off a year after my last injection, and Andrew and I were deciding whether we should wait a bit longer, or start trying to have kids. Next thing we knew, I was pregnant. How ‘bout that? Decision made!

So I booked in for the high risk obstetrician, and she ended up bringing our first appointment forward a week to recommend termination to us. Apparently they see young people with aneurysms who get pregnant as very risky because of the lack of data. The most common sex and age group for non-genetic aneurysms are older males who funnily enough don’t often get pregnant :)

There was so way we’d get a termination, I was grinning like an idiot the entire time she was telling me she didn’t agree with us being pregnant – I didn’t care, I had a little baby growing in me and was pretty bloody excited!

We’ve since had another OB appointment, and I’ve spoken to someone else who has genetic aortic aneurysms in their family. I now have more information and understand the consequences a lot better and fully realise the risks of me being pregnant.

So during pregnancy the body’s hormones make things like connective tissue stretchy to let the child grow. This is bad for things like aortas that are already bigger than they should be. The heart is pumping a lot harder to support the little life form, which is why a lot of pregnant people get high blood pressure. For me it means the blood is pumping harder through the weakened, stretchy aneurysm. So things could go wrong at any point.

The risk is my aneurysm could dissect (split). When this happens, it is generally rather painful - it was described to me by this girl who has aneurysms in her family and had a dissection 3 years ago at age 28 as “like someone had ripped my chest open with a chainsaw and someone was blowing a blow torch inside”. It requires open heart surgery to replace the damaged aorta, and is a long surgery with a very long recovery time.

I previously wasn’t too worried about the risks as I know they’re pretty low, and I didn’t really understand how the body changes during pregnancy (except for the obvious changes), and what it means.

Now I have a much better idea of the risks involved, why it could change all of a sudden, and the girl I’ve been talking to about genetic aneurysms said that in her family they seem to be getting dissections at between 4.2-4.6cm (mine’s 4.4). I had no idea they COULD dissect that small. So it’s a massive reality check for me, and the risks are all of sudden a lot more real, and it’s all sunk in.

Understanding this a lot better now, if I could go back in time and have the choice again of getting pregnant again, I probably still would... I am confident that if I do end up having a dissection (which is a very slim chance, but still a chance), that I am near the best cardiologists and surgeons in the world, and will be well taken care of.

It all hit me on Wednesday, and was still sinking in yesterday and I was very shaken up about it all, and quite scared of the consequences, but I got it all out of my system, and feel much better for it today. I hate the fact that there’s absolutely nothing I can do about it, and there’s nothing else the doctors can do about it - they won’t operate unless it grows suddenly, or reaches the 5/5.5cm mark over time. I’m on beta blockers to keep my heart rate and blood pressure down, and I just have to be very careful – they recommended easy walking as the maximum amount of exercise, and to do nothing to get my blood pressure or heart rate up.

We’d also planned a trip to Dublin in June to renew our US work visas since Andrew will already be in Edinburgh for a conference, but they won’t let me fly because I’ll be 6 months pregnant then and my heart is working very hard at that point, and the risks are too high. As well as that, if anything goes wrong, I’m a long way away from my doctors.

So hopefully Andrew can renew his work visa, and mine is dependent on his, so the lawyers should be able to sort something out so I can just go to Canada to renew, or even better, do it from the US (apparently you can’t reapply from inside the US...)

So that’s the latest on the health dramas for those of you who have been wondering.

8 comments:

chispita said...

Good luck and keep us posted!

--
Lu.

palekitty said...

Sarah, I just stumbled across your blog accidently and I have to say you strike me as an amazing person. I had an abdominal aortic aneurysm repair last year it was at 6cm and id known instinctively for about 6 years that i had it but my cardiologist had told me no despite having marfan syndrome! After 2 heart attacks a wonderful physician scanned me and found it in the nick of time. I now discover i have a previously unreported gene fault on the marfan 'fibrillin gene'. Some doctors can be so good and he saved my life. I wish you all the best in your pregnancy you are so courageous. Doc's have always told me no way. Will check back on you for sure to see how its going. Luv Emma x

scottplant said...

Hi Sarah, I stumbled across your blog looking up E-3 information.
We actually just came back from renewing our E-3/E-3D's in Canada (we live in Seattle so it’s just a drive across the border). Congratulations on the pregnancy. My wife is also pregnant, a few months further along then you, has aorta problems (a coarctation) and loves exercise but has to keep her heart rate down too. So, eerily similar you!
I can answer your question about renewing your visa and put your mind at rest.
Short answer: You can renew your status my mail without leaving the US. The next time you do leave the US you will need to make an appointment at a consulate (outside the US) and get a new visa before you come back.
Long answer:
There are two concepts that sometimes get confused
1)visa;
2)status
A visa is that coloured sticker in your passport. You ONLY need it when you turn up at a US border seeking entry.
Once you are admitted to the US the visa is no longer relevant. At the border you had a white card (I-94) stapled in your passport that shows what your new STATUS is. The validity date written on the I-94 is the date you must leave the US by. The visa expiry is only relevant if you want to come back in again. The visa expiry date and the I-94 validity date will be the same for E-3 visas, hence why the terms get confused.
You can renew your E-3D STATUS from within the US by mail. You can however no longer renew your VISA by mail (you could a few years ago) and have to go to a consulate outside the US
If you wish you can renew your E-3 & E-3D status every two years without ever needing to leave the US. When you do eventually leave the US you will need to get a new visa in order to be let back in (remember it is the visa that counts when you turn up at a US border). This might require some forward planning to make sure your travels take you past a US consulate, to get a consulate appointment on a day that suits and to be able to go back in order to pick up the passport(*1).
Bottom line – enjoy your pregnancy, stay where you are, rest and treat your body well. Once Andrew gets back with a renewed visa and new I-94, which should have the same validity date as the visa(*2), ask your lawyers about renewing your status by mail. I’m not sure of the timelines of when you need to apply, so check with your lawyers. If you want a visa so you can travel Internationally without restrictions you can renew status now and go to Canada to get the visa at a time that is more convenient for you (e.g. once the baby is born and you can safely fly again).

(*1) There is a special case, of going to Canada/Mexico with a valid I-94 but expired visa. You will be let back in if the visit was for less than 30 days, your didn’t go to a US consulate during your trip and you didn’t go anywhere else. [details from memory, look up an authoritive source before replying on this].

(*2) Tell Andrew to be careful when reentering the US on his new visa that he gets a new I-94 and the validity date is correct. When we just came back from Canada our I-94s still had six months validity on them and the first border officer was not familiar with E-3s. He just said that I could go through and gave my passport back. This would of really sucked because we would have had to do another border crossing in six months and would not of been able to renew my wife’s work authorization. I pointed out that the new visa was valid for another two years and asked for a new I-94 valid for the same period. A bit of discussion later (you can’t get a new I-94 now, you’ll have to come back in six months – … - could you send me inside so I can talk about it further) and we got the new I-94s. Remember to be really really polite when disagreeing with the man who has the gun and the authority to deny you entry arbitrarily.

Nick said...

We don't know each other, but I just stumbled across your blog. Ask Dr Liang about losartan after you deliver your baby. Pregnant women cannot take it, but it's been shown to halt aortic growth and, in rare cases, reverse aortic growth (shrink it). A max dosage usually has to be taken. There are clinical studies being conducted now from Johns Hopkins, but undoubtedly Dr Liang knows all about this. I know of several people, including myself, that have been helped by losartan or other drugs in the ARB family.

God bless
Nick

cjcoopers said...

My wife has an acending aortic aneurysm. It measures 4.4 . We go to Mayo clinic. We might be pregnant and we're both concerned but we still would like another child. She is 33. If you would have time to speak to her I know she would like to talk with someone that truly understnds the risks. Thank you, Chris

frida said...

hi sarah i my self had coarctaion of the aorta corrected twice when i was 21 years old im now 27 years old i now have 3 beautiful kids 5 year old 2 year old and a 3 month old i was very worried too with each pregnancy but now im glad i got all my precious kids and i pray the lord to keep me healthy to watch them grow up. take care of yourself and good luck but most of all dont give up

Josie Therapy said...

OMG! Finally someone I can relate too! I just found out I am pregnant and I have an aneurysm on my aortic root.Please call me @ 210-999-0960. This is my bizz /cell so its already public. Please call or email me if you can.

Eileen said...

Sarah,

Did you carry full term? I was just told I also have an aortic aneurysm as well and it is at 3.7 right now, my cardiologist told me to start trying right now for kids but my husband is hesitant and wants to wait until my 6 month heart check up. I do not want to wait in case it is getting worse, however I do not want to put the baby in any danger as well. Any suggestions?