Agatston Score

[hihannula]

Hi Everyone. I have been taking warfarin for almost 2 decades. I am on warfarin for 2 reasons....APS and a mechanical heart valve. I would like to know if since being on warfarin have any of you developed coronary calcification?? I have, and my agatston score is 800. It should be under 35-40. I do have angina attacks off and on and can't walk too fast or too far. The Dr wants to do an angiogram and put in stents. I have not agreed to these procedures at the moment because it's a huge decision to make with knowing how high the risk is. I do have Lupus with organ involvement as well. More risk.. has anybody else developed coronary calcification because of warfarin? If so did you have stents put in? I'd really like to hear your story... Thank you.

[Lure2]

Hi,

As my memory is not too good i do not remember if you have told us what therapeutic range you have got for your INR and if you have got a Specialist for your two illnesses who knows autoimmun illnesses and that the heart-issues can be involved also.

I have pulmonell hypertension and two leaking heartvalves and diastolic dysfunction.

I have Specialists and also lung/cardiolog and yearly do en ecochardiography with doppler. They want me on an INR of 4.0.

For us it is very important to have the right Specialists around us!

Best wishes from Kerstin

[hihannula in reply to Lure2]

Hi Kerstin. I am presently on a 2.4-3.4 range. It is always all over the map so I spend more time at the blood labs than at home. I will be seeing an APS Dr in August for the 1st time since being diagnosed with APS 20 years ago. I too have 4 leaky valves one of which is mechanical. Even my mechanical valve is covered in calcification. I also have pulmonary hypertension. Yesterday and today I feel like a plastic bag is over my head and face. Can barely breath and feel like I'm in a dreamy state with poor balance and low energy. I'm not too sure if I should go sit in emergency for 5 hours just to send me home like usual. I think I'll tough it out.

Cheers. Holly

[Lure2 in reply to hihannula]

The problem is that they (emergency-clinic) do not understand this illness and that we must have to thin our sticky blood to feel ok.

Who is in charge of your leaky valves and mecanical valve. Probably a lung/heart-Doctor who could help you before August. Try to contact them if they are not on vacations yet. Try to keep your blood at the upper allowed level of an INR of 3.4.

Kerstin

[hihannula in reply to Lure2]

Hi Kerstin

I do have only an internist who also knows some things about the heart. Presently no one is addressing the one level to be higher and this Dr wants to do an angiogram and put in stents asap. I told him I have to digest this news before making a commitment to such high risk procedures! I feel confused and anxious! I will get ahold of my interest and have him send me to a cardiologist in Ottawa. Anyway I have lots of things to think about. Thank you for you input.

Cheers. Holly

[Lure2 in reply to hihannula]

Hi,

I wish I was a Doctor but I am not, only have APS with pulmonell hypertension and leaking heartvalves. I am sorry but I do not know so much about your heart-issues but I think you should have a talk with a Cardiologist who knows what APS is and that heartvalve-symptoms are connected sometimes with our illness. Also to get a Specialist.

Kerstin

[hihannula in reply to Lure2]

You’ve been great Kerstin. I will be sure to get the right Drs for all the different issues. So complicated and exhausting ! Have a terror day😄😄Holly

[hihannula in reply to hihannula]

Have a terrific day I meant to say.😂😂😂

[MaryF Administrator]

HI, this procedure may be the best thing for you, however I would not proceed until I had an Hughes Syndrome/APS specialist on board, to help not just you but your GP, hopefully this is coming up soon? The appointment?

MaryF

[hihannula in reply to MaryF]

Hi Mary. My 1st appt with the APS specialist is sooner than I thought. I'll see him July 10th. Because I won't get all my questions and concerns answered in a 20 min appt, what suggestions would you have for what I should bring up at my 1st meeting with him. My list is 2 pages long and I feel everything is all interconnected somehow and I always have a hard time discussing one topic at a time.

The whole angiogram and stent discussion sounds morbid. They'll have to say something to convince me and build up my confidence before I could ever agree to those two procedures after everything I've read. I'll keep everyone posted after appt July 10th.

Cheers Holly