Vasculitis vs arteriosclerosis, getting pregnant after a CABG and statin/diet questions!

[MarmiteB]

Hi!

I’m 34 and have just had a CABG, I’m 6 weeks post op and feel almost back to normal. Yes, I know, I’m young and have bounced! They think that my coronary arteries were damaged by vasculitis I (might) have had when I was 19, it wasn’t diagnosed at the time as I had just classic viral symptoms although they were quite severe.

After 3 years of being basically ignored by doctors - if your 34 and female and complain of chest pain they DO NOT think you have angina…. VERY LONG story short turns out that’s exactly what I had been living with and normalising! I’m happy to go in to detail if asked!

Anyway, my coronary arteries are simulataneously dilated and narrowed at points - think string of sausages! They are unsure if I also have “classic” arteriosclerosis as well as although histology saw signs of it in my left internal mammoth artery, my surgeon is still convinced the damage was done 15 years ago.

My cholesterol is raised (has been since I was 18, it was about 7.5 so not severe) but I had a good ratio as it was my HDL that was quite high so I wasn’t put on statins until my recent diagnosis . I’m now on statins, beta blockers and clop/asprin . My cholesterol is not under 4 yet been on them since October, but it is down to about 5.5.

They have said that I should be OK to start a family next year (when I’m off blood thinners and can temporarily stop statins and maybe beta blockers). I’m nervous! What if I could pass any of what happened to me to my children?

I have a couple of questions!

Has anyone been diagnosed with “burnt out” vasculitis leading to a double CABG 15 years later?

Has anyone had a baby after CABG surgery and how did it go? The more details the better!

Do you know if I need to be on beta blockers, asprin, statins for life now?

With statins, how long will they take to get me below 4? I think I eat well (normal BMI) and I exercise (well not as much post op but getting there!). Do I need to go on a much stricter diet? Cut out fats and see what happens?

Thank you very much for your advice in advance, I realise I am the exception and not the rule but any words of wisdom are appreciated

MarmiteB x

[Milkfairy Heart Star]

Hello MarmiteB,

Welcome to the forum.

Have you been able to have some pre pregnancy counselling by a team that specialises in women with heart disease and pregnancy?

Here's is an example of such a service in London.

rbht.nhs.uk/our-services/he....

Another way of trying to connect with someone would be through the Sommerville Foundation, a charity that supports adults born with congential heart disease, many have had surgery and then had families.

sfhearts.org.uk/

I hope you find the support you are seeking.

[MarmiteB in reply to Milkfairy]

Thank you Milkfairy!

I’m being referred to a maternity cardiologist, I was just wondering if anybody had experienced it and gone through the process.

Also, I’m so confused about whether or not my heart disease was caused vasculitis. I want to get to the bottom of it!!

[Milkfairy Heart Star in reply to MarmiteB]

Good to hear you have been referred for pre pregnancy counselling.

Do you see a Rheumatologist?

I was screened for Vasculitis as I live with an unusual type of angina. I also struggled at first to get a diagnosis. My coronary arteries are unobstructed, they go into temporary transient, constrictions, vasospasms which causes angina.

Your condition is rare, though you might be able through the Sommerville Foundation make contact with women who have gone through open heart surgery and then had a baby.

I suggest you ask your Cardiologist and Rheumatologist to explain to you how vasculitis is related to heart disease.

There is also a support group for people living with Vasculitis, you may find further help from this group.

vasculitis.org.uk/