Hello

[Fahmida_zz]

Hi everyone

I’m new to this but I have a rare for of vasculitis called Takayasu Arteritis which lead to a heart valve replacement twice, and an aneurysm, late last year I had endocarditis. I’m on a bunch of meds such as prednisolone, methotrexate, bisoprolol, mycophenolate, aspirin etc.

I’m in my mid 20’s so it’s been extremely difficult especially since I was fine before my diagnosis 4 years ago. Luckily, I still managed to complete my degree whilst all this was happening, so I’m happy about that.

I’d like to hear from anyone who may have had a similar experience. It would just be nice to know I’m not alone.

[Snowdrops_17]

Find a community especially who has these heart problems. Mid twentieth, oh dear, you are still so young darling. I am 63 years old now.... I find quite a few younger people end up with heart problems either genetic , inherited or to bad lifestyles, partying and drinking.

There are quite a few people following me so hopefully someone will respond soon my friend. Just stay safe and well please! ❤💜

[Fahmida_zz in reply to Snowdrops_17]

Hi 447510

Thank you for replying. I hope your doing ok during these unpredictable times?

I actually had the swine flu couple of years back which set all this off, Weirdly I have no family history of any of these problems. I was actually very active and healthy. Weird how life slaps you in the face and brings you to your senses.

Thank you for your kind words. 🙂

[Snowdrops_17 in reply to Fahmida_zz]

Just look up heart aneurysm or endocarditis.....on here and you will find a few people who suffer with this condition and heart valve replacement.

I personally cannot advise you. That's up to a medical professional doctor or heart consultant Fahmida. Where do you live, in UK or abroad? 💜❤ it be really good if you get to know people on this forum as many have experienced or are experiencing heart problems variate kinds....

[Fahmida_zz in reply to Snowdrops_17]

I live in the UK

[Milkfairy Heart Star]

Hello Fahmida_zz

I am sorry to read about your rare condition and how it is effecting you.

Have you tried contacting a support group for Vasculitis?

vasculitis.org.uk/about-vas...

Are you under the care of a Rheumatologist? Do you have a clinical nurse specialist who could point you in the right direction?

There is something special about being to share your experiences with someone else with the same condition.

I hope you are able to find the support you need soon

[Fahmida_zz in reply to Milkfairy]

Hi Milkfairy

I have been doing ok lately but it’s painful I get pain on a daily basis and claudication. After my operation I have developed vertigo which is the worst bit. My condition limits blood flow to my limbs. It’s not the nicest thing to go through but I’ll be ok there’s always people who are suffering more than me.

Yeah I have a very dedicated team of health professionals, their the ones who recommended getting in touch with people in similar situations but I don’t know about vasculitis uk until I came on here

Thank you

[Milkfairy Heart Star in reply to Fahmida_zz]

I live with a a type of angina that is difficult to treat so live with alot of pain as well.

I found attending a Pain Management Programme helpful

Perhaps ask your team to see you to a Pain Management service ?

[Snowdrops_17 in reply to Milkfairy]

Milkfairy you are brilliant. Didnt know that either..... glad you responded here. Thanks girl 💜❤

[Canbe]

I can’t comment about your conditions but would like to say Well done for getting your degree you should be proud of yourself and good luck in all that you do in the future xxx

[Fahmida_zz in reply to Canbe]

Hi Canbe

Thank you!