Hughes and left ventricular impairment?

[MrsMouseSJ]

I am aware of the potential for HS to affect the heart valves, but what of left ventricular impairment? I have both and would be grateful to hear from anyone affected and how you have fared; how your condition is managed, etc. Many thanks.

[Lure2]

I have APS and leaking tricuspid- and mitral valves. Pulmonary hypertension and leftsided diastolic dysfunction.

This is a translation of the Swedish version. Hope you can follow.......? I am on warfarin since 3 years back and selftest since 2 years. I can climb stairs, I am 70, take my usual walk for 45 min or I hour. They always ask about my breating. I have no problem with that. I had very high bloodpressure befrore i started Warfarin. My Pulmonarey hypertension is the same since I started Warfarin. That is good.

.I have done several Ecochardiographies with doppler with a clear picture,

Hope to hear more from you. Take care

Kerstin in Stockholm

[MrsMouseSJ in reply to Lure2]

Hi Kerstin. Many thanks for this. No problems following your translation - your English is, as ever, excellent! I'm sorry to hear about all that's happening with your heart but it sounds like you have things under control and it is very heartening to learn that you are able to take so much exercise. I, too, had high blood pressure pre warfarin - which I now think was to do with undiagnosed and treated Lupus and APS. Best wishes.

[MrsMouseSJ in reply to Lure2]

Forgot to ask; do you take meds other than warfarin?

[Lure2]

I still take Plendil 5 and 2.5, Seloken zoc Enalapril and Enalapril comp, Esomeprazol (not often) Ficortril, Fragmin 5000 (if I go too low in INR) Kalcipos D forte, Oculac drops

Can you tell me about your symptoms? Have you Pulmonary hypertension? Have you had Ecocardiography with doppler many times?

Kerstin

[Lure2 in reply to Lure2]

I forgot: also Simvastatin 10 mg

Kerstin

[MrsMouseSJ in reply to Lure2]

Blimey, Kerstin - you are certainly not under-medicated! But I'm really glad that this regime allows you to get up and about; being able to walk for up to an hour a day must be great.

I don't have pulmonary tension - that I'm aware of. The echocardiograms I have are to check the validity of my heart valves (I had one rebuilt a couple of years back in an emergency operation and now I have been diagnosed with APS such checks become especially pertinent, I would imagine). But in terms of my original post, I believe that valve problems can be associated with heart failure and I'm not sure whether this is a relatively common occurence with APS (or Lupus) or whether I am simply a bit 'odd'!

[Lure2]

I need those drugs for APS. I am so lucky that I can exercise. I have no difficulties to breathe

Hearvalve-problems go with APS and Pulmonary Hypertension and often very High Bloodpressure.

Best wishes from Kerstin

[CMac13 in reply to Lure2]

Hello Kerstin, I'm a 'quiet' member (generally!) on this site as I'm only query Hughes syndrome, but I've always thought you have a great approach & knowledge. I'm a bit complex, as I have had major Lupus involvement for years with lots of 'side orders'- like multiple pulmonary emboli (chronic thrombo embolic disease); bronchiectasis; asthma; migraines; fits; dysfunctional bladder; kidney problems; colon ulcers/ inflammation; gastric reflux/ poor swallow; immune deficiency (C.V.I.D); chronic anaemia; etc- (sorry sounds like a shopping list!). But in the last year I've had a major problem with clots, increased unstable angina, new symptoms like irregular heart beat, dizzyness, palpitations, on top of existing hypertertension, chest pain pain, & I'm on oxygen constantly & pretty much w/chair bound. I'm really sorry if this sounds like I'm miserable etc- I'm not :). But I am worried at the moment, as apparently my heart has been enlarged in several X Rays & CT contrast scans in last year,& the Doctors seem to have decided I have Pulmonary hypertension with probable heart failure. As I'm in my 40's with two kids-12 y.o girl & 16 y.o boy- I don't like the sound of this... (meant to say- I've had heart murmur for years with some valve regurgitation. Just wondering if I'm worrying unnecessarily (sp?!)- any thoughts or suggestions would be much appreciated. Thanks, Claire ps: sorry MrsMouse for interrupting!

[CMac13]

Hello Kerstin, I'm a 'quiet' member (generally!) on this site as I'm only query Hughes syndrome, but I've always thought you have a great approach & knowledge. I'm a bit complex, as I have had major Lupus involvement for years with lots of 'side orders'- like multiple pulmonary emboli (chronic thrombo embolic disease); bronchiectasis; asthma; migraines; fits; dysfunctional bladder; kidney problems; colon ulcers/ inflammation; gastric reflux/ poor swallow; immune deficiency (C.V.I.D); chronic anaemia; etc- (sorry sounds like a shopping list!). But in the last year I've had a major problem with clots, increased unstable angina, new symptoms like irregular heart beat, dizzyness, palpitations, on top of existing hypertertension, chest pain pain, & I'm on oxygen constantly & pretty much w/chair bound. I'm really sorry if this sounds like I'm miserable etc- I'm not :). But I am worried at the moment, as apparently my heart has been enlarged in several X Rays & CT contrast scans in last year,& the Doctors seem to have decided I have Pulmonary hypertension with probable heart failure. As I'm in my 40's with two kids-12 y.o girl & 16 y.o boy- I don't like the sound of this... (meant to say- I've had heart murmur for years with some valve regurgitation. Just wondering if I'm worrying unnecessarily (sp?!)- any thoughts or suggestions would be much appreciated. Thanks, Claire ps: sorry MrsMouse for interrupting!

[Lure2]

Hi, I have "read" a little about you. I know you have Lupus but not diagnosed APS. Correct?

I want to thank you so much for those beautiful words about me. I want to help if I can but my Swedish language does not make it easier. As you know we are no doctors

I know very little about Lupus. I understand they have found "livedo reticularis". I have learned it is a sign of APS. I have it also but not always.

I did like you have murmur when they listened to my heart and also like you very high bloodpressure. My pulmonary hypertension has not increased after I was put on warfarin. It is 45 mm Hg. My bloodpressure (have an own machine for bloodpressure) can some days be very low. Never those high figures that before warfarin

My Rheumatologist said that my Pulmonary Hypertension was because of my leaking valves. I have no special Cardiologist but they send me to test very often. I do not know if she is right. I could have heard wrong also. Bad hearing also! ( Ha Ha)

Earlier I had chestpain. I am sure it was a lot of microclots I had probably also in my lung. Before warfarin I had "coldness" for some minutes and if I took the bloodpressure afterwards it had changed dramatically. This "Cold feeling" I had in my whole body disappeared with the neurological symptoms after I had started warfarin.

I have asked here on this site if someone else had this but no one has responded to my question.

I have done a lot of Ecochardiographys with doppler in the Hospital. They get good pictures of my heart.

There they see Tricuspid- Mitralis- and Pulmonalis leaking.

I have no breathlessness when exercising because my heart WORKS well but when it fills the blood go backwards and they are not sure how much my diastolic dysfunction can be. They do not want to make an operation as I am 70 and mrs "big trouble" with all my antibodies in high titres since 12 years.

I Think you can have APS and please ask to have an Ecocardiography with doppler done if you have not had it.

I wish you the best of luck and you may ask me again if you want to. I have only explained my symptoms but that is the way we learn from eachother.

Kerstin

[CMac13 in reply to Lure2]

Hello Kerstin, so sorry for delayed reply- I have been 'laid up' with kidney infection. I just wanted to thank you so much for your great reply, very interesting -though I think you cope so well with everything you deal with. You always seem to be able to say the right thing & provide many people on this forum with information & support. I'm also jealous you manage to keep your fitness & I must see if I can get some pulmonary rehab.

The 'coldness' you suffer from, must be very irritating & maybe your blood circulation limits itself to the chest & organ area, where its most needed, so you get a symptom like Raynauds.. (V much a guess- I have fairly severe Raynauds & it is annoying.)

I saw a Cardiologist recently, who suggested I have a right heart catheterisation, to confirm Pulmonary Hypertension & check for heart failure. He mentioned an Echocardiogram but thought the catheterisation would show more (ugh!).

I will let you know of the outcome- though I'm afraid to push for diagnosis of APS, as the Doctors may think I'm dreaming up more problems than I already have.!? They don't like it when you're very complicated!

Hope you are keeping well & thanks again.

Take Care Claire