Mechanical valve: Has anyone had the... - Hughes Syndrome -...

Hughes Syndrome - APS Support

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Mechanical valve

hihannula profile image

Has anyone had the vaccines that has APS, Lupus, and a mechanical heart valve and on blood thinners and prednisone? If so, did you have complications? Thank you!

17 Replies
MaryF profile image
MaryFAdministrator

Hi, in answer to your question, no I do not have this particular device, however I know there are people on this forum who do have, so over time I am sure you will have some answers. MaryF

hihannula profile image
hihannula in reply to MaryF

Thank you Mary. I did get a lot of positive feedback.

Hi thereI have a mechanical heart valve, a pacemaker, APS and anti lupus. I'm on prednisone, warfrin and aspirin. I am 67 and had Astrazeneca shots and absolutely no problem. I live in Australia.

hihannula profile image
hihannula in reply to rockcats4

Wow. Exactly like me. So happy to hear you did well. That is encouraging! 🙂🌺

I have APS and osteoporosis and have recently had my COVID booster I have the Phizer and was fine I’m 74

hihannula profile image
hihannula in reply to Dot69

Good to hear! 👍

I have APS, Lupus, an electrical heart condition (Long QT Syndrome) and a Pacemaker. But no mechanical valve.

Amongst many drugs I take prednisone (steroids) and Asprin & Apixaban (blood thinners).

I had three AZ vaccines and in 6 months will have a AZ booster because I’m also on immunosuppressant drugs.

I had a few days feeling more exhausted than normal. After each jab the QTc became too long (but many drugs do that to people with Long QT Syndrome). I had a couple of near faints after the second jab too.

FYI: I also have Sjogrens Syndrome and Fibromyalgia, arthritis and other little issues.

Good luck.

hihannula profile image
hihannula in reply to WendyWoo50

Oh my Wendy. That’s a lot. I’m glad you did ok. What is QT syndrome?

WendyWoo50 profile image
WendyWoo50 in reply to hihannula

It’s a genetic electrical heart condition where the distance between the end of the Q wave and the start of the T wave is too long meaning the heart doesn’t always recharge to beat again at the right time causing fainting, cardiac arrest or sudden death. It is the condition that’s often undetected until a sportsman drops dead on the pitch etc. (Long QT is one of the conditions that causes sudden death in babies, adults and children).

hihannula profile image
hihannula in reply to WendyWoo50

Is it a condition brought on my Lupus or something separate. You are a strong woman. Amazing really! 👍Big Hugs!

hihannula profile image
hihannula in reply to WendyWoo50

I just reread your post. It’s genetic not caused from Lupus! But crap, what a bad break, as if Lupus , and APS is not enough! 💕

Hi, I have a mechanical mitral valve and am on Warfarin, but I have no APS or Lupus. I had the two Moderna shots in the Spring and just recently a booster shot. Thankfully, I have had no problems.

hihannula profile image
hihannula in reply to Loukas

That’s good to hear. I’m concerned about spike proteins getting lodged in the valve, but maybe I’m worrying for no reason. Thanks for a bit of relief! Cheers 🙂

Hi I have APS Antiphospholipid Syndrome Systemic Lupus and added to my list MS. I had a new mitral tissue valve and 2 new arteries done in 2019, my kidney was removed 3 months later due to lesions on the ureter. I am on high amounts of warfarin and aspirinI have just had my third Covid vaccine yesterday. All 3 were Pfizer vax and I was good with all 3

I was really frightened and cautious,

I am going to be immuno suppressed in the next few weeks it is Imperative I protect myself as much as I can.

Good luck which ever path you choose

I am only 63 and have a lot of living to do yet.

My mum Died of Covid April 2020 she died in 2 days after contracting it. I am covering myself as much as I can.

From Linda

Thank you Linda. I’m getting closer to a decision as the comments have been positive. 🙂

Really a good idea to question. I asked Dr Graham Hughes when he was hosting one of his world live connections linked through GHIC on Face Book. Another one due 9th Dec I believe

Great idea! Thanks

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