Wegs and Your Heart

[Sangye]

Still reeling from last night's news of Mark's (Idtracing) death from heart complications, I decided to take this opportunity to remind everyone of the necessity of getting annual echocardiograms. Heart involvement with Wegs is uncommon and usually silent. By the time you have symptoms you might already have major damage.

If you're newly diagnosed, you should have an echocardiogram within the first month. This is routine. While you were waiting to be diagnosed, Wegs might have been causing silent damage to your heart.

Your future echocardiograms will be compared to prior ones. Sometimes seemingly small decreases in function over time are a sign of trouble. It's best to have each one done at the same facility so they have the prior study to compare, but if you go to a different place, make sure to bring copies of the old reports with you.

If you have any heart symptoms, tell your doctor asap. Mine have never hesitated to order an echo if I have any unusual symptoms, even if we've just done one in the last few months. Echos are inexpensive, non-invasive and fast. No doctor should refrain from ordering one.

If you have heart symptoms and have to go to an ER, you must tell them Wegs can cause silent heart damage and that they should do an echo. Don't expect them to know this. Most of them have never even heard of Wegs and heart involvement is not on the "short list" of things to look for.

I know many of us get tired of all the tests and doctor visits. We might even think we're too young for heart trouble. Mark was 38 with no prior history of heart problems. Please, let's not lose someone else over this.

[Jack]

Sangye makes a good point and something to bare in mind. I have also had an echocardiogram in the past, but more recently they seem to just give me regular ECG tests. Since I don't have any heart related symptoms that I am aware of, I guess that this is considered to be sufficient.

[Sangye]

Jack, EKG and echo are two very different tests and give different info. An EKG shows the electrical function of the heart, while an echo shows the mechanical function. A normal EKG doesn't rule out mechanical problems. The standard of care diagnostic test for Weggies is the echo.

[Jack]

Yes, I'm aware.

My consultants are aware of the potential problems too and did not hesitate to get me an echo test when they thought that I needed it, but they have seemed to be happy enough with ECG (EKG ?) results since and I'm still alive. I have to trust them on this one and they usually seem to know what they are doing.

[pberggren1]

I thought that ECG and EKG were the same thing. What do the letters of each stand for?

I am a little worried after hearing about Mark.

[Sangye]

EKG and ECG are the same thing. There is no abbreviation for an echocardiogram.

We should all take note of what happened to Mark. I think there are important lessons we can learn from it-- 1) a Wegs specialist is a necessity, and we should each make every effort to have one involved in our case. Sell your house, move cross-country if need be, but enlist the help of one. 2) Heart involvement is silent and can be deadly and 3) There is no such thing as "limited" Wegs in terms of being permanently confined to one area.

I'm deeply saddened by his death.

[elephant]

I am too, I can't believe it...Diagnosed March 1 and gone May 31......

[Lola]

Another thing my cardiologist said is that it is very common for autoimmune disease to cause pulmonary hypertension - high blood pressure in the vessels of the heart, which presents as shortness of breath and then swelling of the feet and legs.

One test to determine if Pulm. Hptn is present is an Echo. THe gold standard, however, is a right heart cath, when pressures are measured in the right atrium, right ventricle, and pulmonary artery.

He said that this problem can come and go, as in a flare. Good reason to ask for an echo when shortness of breath is present or has worsened.

[pberggren1]

Lola, what is a right heart cath?

[MCC]

This is very sad.