APS and heart disease

[hihannula]

Hello again. I would like to know if anyone has heart disease relating to your APS. If so I'd like to hear from you! Thank you,

Holly

[WendyWoo50]

At Christmas my heart rate dropped. I had numerous investigations as to the reason with no specific diagnosis. I have had a pacemaker fitted and I'm finally getting my life back. I am certain that APS played a role in what has happened.

[hihannula in reply to WendyWoo50]

I’m so happy you are feeling better.

[justlymostly]

I have a mitral valve regurgitation problem. Initially diagnosed cause as undetected high BP then Aps now after in depth tests it is thought to have been caused by an unnoticed bout of childhood rheumatic fever. Controlled by bp medication.

Professor Hughes thought it was caused by Aps as mitral valve problems are part of the Aps "bundle".

It has taken since 1989 to decide on Rheumatic fever because of the shape of the heart valve flap tips.

[hihannula in reply to justlymostly]

When I had my mitral valve replaced they did a biopsy on the diseased valve once they removed it and were shocked it was caused by rehumatic fever and not lupus or aps..

[GinaD]

I too have mitral valve prolapse with moderate regurgitation. Also an a fib which I probably inherited from my Father. One cardiologist wanted to do open heart surgery. I said, No, no, nononononono and backed away. The Cleveland Clinic cardiologist prescribed a calcium channel blocker to control the arhythymnia. Coming attractions? Stay tuned. But for now I am very active and the heart irregularites are controlled with an inexpensive med.

[hihannula in reply to GinaD]

Glad to hear the med is helping out. It’s amazing how eagar the Dr’s are at wanting to do such invasive surgeries. Glad you said nonono!! All the best😃

[Ageingfemale]

Hiya. I was diagnosed with mitral valve stenosis and had op to inflate balloon into valve which they said would last 5-10 years. It lasted 6 months. So had open heart surgery to replace valve. They couldn’t wake me up after op and I was in a coma for 4 weeks after before coming round. It was only after all this that I started with TIA’s which in turn led to a diagnosis of APS. and yes, consultants now agree the heart problems are due to APS and not that I must have had rheumatic fever as a child (which greatly upset my mum as she was certain I hadn’t had it and she was adamant she would have known if I had). The coma also was put down to catastrophic APS. I am now getting problems with the aortic valve.

[hihannula]

So sorry to hear the difficultly you’ve been through. The good thing is now you know what you are dealing with! I wish you all the best. Holly

[Holley]

Like several people on here, I too have had problems with my mitral valve. Before I was diagnosed with APS, I was diagnosed with a heart murmur in 1994. Had an eval done with a cardiologist and it showed mild-moderate regurgitation. Fast forward nine years later... I was having trouble keeping up with my husband when we walked (I'm tall and normally walk faster than him). Activities became labored. I went back for another eval and it showed the regurgitation had gotten worse. Options were to 1) do nothing & eventually have heart surgery to repair/replace the mitral valve, 2) have the surgery at the time when I was younger and could bounce back easier after surgery. I chose the latter. My heart surgeon said my valve looked indicative of rheumatic fever. I had strep throat a lot as a kid. Apparently, strep is a rheumatic disease. They went in with hopes of repairing and if they couldn't, I was going to get a pig valve. I had gotten married in October 2005 and we wanted to have children. With the pig valve, it was chosen as it wouldn't require coumadin and was better for a pregnancy. It was explained that the bio valve wouldn't last forever and eventually, I'd need to have a second open-heart procedure to replace it with a mechanical valve. That was the plan.

December 2005: Scheduled for heart surgery. Got knicked in one of my carotid arteries in my neck during inserting the central line for anesthesia. A hematoma had to be evacuated by the vascular team. It was observed that my blood was acting strange. Surgery was postponed. Hematology was brought in for an evaluation. I was diagnosed with APS. With this new development, it was decided to go straight ahead to the mechanical valve.

No one could say for certain whether it was the strep throat that caused the valve to deteriorate or the APS. At the end of the day, it was the same outcome.

[hihannula in reply to Holley]

Wow, how things can change so fast. I don't know if the Dr's told you about the horrendous side effect of warfarin. I just found out after 12 years of taking Coumadin that I have severe coronary calcification. This drug affects your vit k intake which plays the role of depositing calcium into the bone and not soft tissue, which then causes heart disease. If you haven't already, I'd talk to your APS specialist about some sort of prevention plan. Diet, excersise, vits and minerals etc. I would get on that right away.

My Agatston score is off the charts at 800. Because of this high score they feel I need stents, and beta blockers etc. I'm only learning recently about this side effect of Coumadin. Had my Dr's been transparent from the beginning, 12 years ago, I could have done something to help myself with maybe a more favourable outcome. Just wanted to inform you in case you weren't told anything about how you end up with coronary calcification. Ask a lot of questions about that drug. There's a lot to learn. Best Wishes Holley.

Holly

[Holley in reply to hihannula]

I too have been taking Coumadin for 12 years. I knew it could affect bones but had no idea about coronary calcification. I see my cardiologist in a week and a half and will discuss that with him. Also, I'm not familiar with the Agatston test. I'll ask about that too. Thanks for bringing it to my attention.

Lisa

[Lure2]

Hi

I have a rare symptom of APS and that is Pulmonel Hypertension. I have also two leaking heartvalves (Mitral- and Tricuspidvalve).

Important for us with APS is that we keep our bloodpressure down and use Warfarin with a rather high and stable INR. I have had no surgery. I think they are afraid to do that and would it help? I am no youngster any more.

[hihannula in reply to Lure2]

Hi Lure2. As long as you have a good quality of life, then surgery may not be necessary. It sounds like you have things pretty much under control which is great. I agree with you it's important to keep our BP down and a stable INR. In my case however my INR readings every week are all over the map. My BP has always been great until recently, last couple months when Dr put me on a calcium blocker for my angina. My diastolic (I think that's the lower number) is so low, that most days I'm trying to not fall over from the dizziness and horrendous weakness. I'm going to make an appointment to see the Dr. about getting off of it. It's not helping with chest pain anyway.

Cheers

Holly

[Lure2 in reply to hihannula]

Well, anyway you do not have dangerous high bloodpressure which is usual with some of our symptoms. Bloodpressure is quite under control as I bought a bloodpressure machine 10 years ago when the bp was high most of the time. You should get such a machine.

When we have irregular INR-numbers going up and down all the time we also often get dizziness as one of the symptoms from APS. Try to get your INR under control.

Best wishes!

[hihannula in reply to Lure2]

I've always wondered why some days I'm so dizzy and maybe I should pay attention to INR readings, to see if there is a correlation. I know with the timed real ease beta blocker I've been taking, I get light headed all the time. It really is annoying! I do take my blood pressure in morning and evening. It's always low. Sometimes so low, I can't believe I'm even able to stand. As well as low INR the dizziness could also be compounded as a result of the beta blocker. My goodness our bodies truly are a mystery! Very cool though how much they can take and how hard they work to try to keep us well. Have a wonderful evening Lure2,

Cheers Holly

[MaryF Administrator]

I don't have heart problems, (a history of Pericarditis), which has calmed down of late, however my daughter who has Hughes Syndrome/APS had mitral valve stenosis. MaryF

[hihannula]

So sorry to hear about your daughter Mary. How is she doing presently? I'm happy to hear you have minimal heart involvement and the pericarditis is under control. When it flares though, it is so painful.!,,

Cheers Holly

[Wittycjt]

I have had Libman-sacks vegetation removed from my heart valves at the same time followed by a mitral valve repair due to mild to moderate regurgitation at the time. When I ask my cardiologist if I have heart disease he says “no”... my heart is now fine.

[hihannula in reply to Wittycjt]

Such great news to hear!! It sounds like you have a great health team.

Holly

[Lure2]

I read that you had seen your Specialist of APS for the first time (you diagnosed 20 or 34 years ago)!

I wonder if he or she was good on our illness? Were you content?

As most of our problems come from this illness it is vital to get a Specialist who is really up to date with our symptoms and what to do.

[hihannula in reply to Lure2]

I only saw him last week. It's was my 1st time with an APS specialist. He should be good because he actually is a research scientist specializing in

APS. He is head of the rehumetology dept. Nevertheless he did not impress my husband or I. He was very nonchalant throughout the visit. Had nothing really to offer in term of advice or what I should or should not be concerned about. I asked about the 1 gram of protein in my urine and waved his hand and said it was good. I left feeling like the visit was a waste of time and I'm still concerned about the protein. Many years ago my protein was at 5 grams so I received 3 an a 1/2 years pulse induced cyclophosphamide for kidney disease which thankfully worked. Looks like my kidneys are acting up again. I wouldn't want to go through chemo again.

Who knows what our relationship will be. Time will tell!

Overall the 1st visit was a bust.!!!

Holly

[Lure2 in reply to hihannula]

But what did he say about your APS-symtoms? Low bloodpressure and your INR changing a lot? Did he take all the antibodies again?

Are you sure he was knowledable with our illness even if he was head of the dapartment. Do you also have SLE perhaps?

[hihannula in reply to Lure2]

Yes I have SLE and pulmonary hypertension on top of APS.

No he did not order any tests because they were done 6 months ago by my old Reumetologist and he felt that they looked good, so come back in 6 months. They are reluctant to do tests too frequently because of cut backs and the state the medical system is in right now. I want to get tested for D, B12, thyroid etc, but I'm sure they'll say no. I may go to a naturalpathic Dr and get the requisitions needed.

About the APS symptoms, he said I can't expect them all to go away.

I mentioned the irregular INR, he said APS is an illness that is extremely hard to stabilize the INR, unfortunately!!

As far as low BP he said I'll have to talk to my cardiologist who put me on the Beta Blocker heart pill. I'll see how it goes next visit.

Have a great day!

Holly