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.

[Lola]

Lola, what is a right heart cath?

Sorry, Phil. Similar to angiogram for diagnosis of coronary artery blockages - called a left heart cath.

Right heart cath is the introduction of a pressure monitoring tube into the right groin vein. The tube is introducted into the right atrium, right ventricle, and on into the pulmonary artery. Used to evaluate the heart valves, blood pressure in the lungs, and function of the entire heart muscle.

[pberggren1]

I got an e-mail from Mark's wife Jodi. Here it is:

Phil -
I found out some more information on Mark's death yesterday. They said that he had quite a bit of scar tissue in his spleen, kidneys and heart. At first they thought that it all had to do with his heart but they said that it looks like it was the Wegs that ended up killing him. I was not very happy when I found that out because they doctor that he was seeing kept saying that it was only affecting his joints and that he had the limited side of things. Not quite sure how they missed it that he had this other stuff going on. Since you would think that it would have showed up in blood tests that other things were going on. I am planning on getting a complete copy of his medical records since he was just at the doctors office for a visit the week before. The doctor told him to come back in 2 mths. Needless to say I will be checking into what happened. Because this is rediculous. If this could have been prevented in any way it should have been. He is now going to miss out on getting to meet his daughter when she is born and watching both of his kids grow up. I know that this disease is a silent disease however there should have been some kind of sign to a doctor.
Jodi

This makes me worry even more.

[Jack]

Just been reading through Mark's posts. There were not very many of them. :(

With hindsight, he seemed to still be quite unwell when posting, but was only on Azathioprine and a fairly low dose of Pred. Did he ever find a specialist to consult? The usual way that untreated Wegener's gets you is by renal failure and there is no mention of renal involvement in his posts. I wonder if this was ever checked.

[terrilyn18]

I'm so sorry to hear of Mark's passing. This is what I fear the most. Joe had a pace maker put in in March. They said his heart is strong and they want to keep it that way.He has a history of arthymia[don't know if I spelled that right] We will see the electrophysiologist in July. He just saw the cardio doctors two weeks ago. everyone keeps saying it is rare for wegs to attack the heart. I have him convinced we have to call the Cleveland clinic. Someone told me that they do not accept medicare. Joe will be going on it in September. I'm sorry the news of Mark is upseting and I am rambling.

[elephant]

Phil thanks for sharing that information with us. I have told so many people about this,mostly my family.

[pberggren1]

Jack,

He told me on the phone that He and Jodi went to see Dr. Ulrich Specks at the Mayo Clinic. I don't think he had kidney involvement and was being treated by the local doctors. I don't think the Azathioprine was enough to knock the Wegs back.

[coffeelover]

can someone direct me to the thread regarding Mark. I know I am not on often, but when I read someone has died, my alert button goes off. Would like to read all related posts if someone is willing to share
lisa

[elephant]

Coffeelover, his thread was Idtracing just look him up under members and you will see all his posts.

[Sangye]

(Lisa, you can click on someone's name in a post and select View Forum posts. Mark only posted a handful of times and didn't mention seeing Dr Specks if I recall. When we got the news, I reread all his posts, too.)

How on earth could this have been missed? If his heart was so badly damaged ("like jello") that didn't happen overnight. Did his doc listen to his heart the week before? That would not sound normal. I hope his wife has someone examine the medical records and take action if necessary. I didn't realize his wife is pregnant and they have another child. I've cried about his death a lot the past couple days, and this makes it so much worse.

Terrilyn, please do whatever it takes to go to Cleveland Clinic as soon as you can. You can't reverse damage to the heart.

[MCC]

What would symptoms of heart damage be? I've sent an e-mail to my doctor about what has happened to Mark. I had tachycardia when I was first ill.

[pberggren1]

I'm still very shocked and upset about Mark's passing. I cried a few times last night about it.

Sangye, you are right. How could the docs miss something like that?

Jodi sent me another e-mail:

He did only see Dr. Specks once. I actually found the paper work that Dr. Specks sent to us after Mark's visit and he wanted to see Mark back in 3 months which would have been some time in June. I do have family and friends that are close. My father-in-law is not happy with what we have been finding out about this. His is going to find out as much as he can and if anything like you said we willl file a malpractice suit against his local doctor he had been seeing.
Thanks

[Sangye]

Mandy, heart involvement often won't cause symptoms, but if you have any of these symptoms you have to rule it out: short of breath, irregular heartbeat, tachycardia, bradycardia (slow ht rate), pounding heart, sense of your heart rolling or flipping in your chest, chest tightness, retaining fluid, unusual weakness.

I know I'm missing some but our nurses will list what I've left out. :)

Phil, can I email Jodi through Mark's email info?

[elephant]

Actually after reading Marks post he had extreme fatigue and felt awful that is a good sign. I went to the cardiologist 6 months ago and had a echo and complained that my heart rate goes up and sometimes felt like it flipped...but not all the time....but alos my potassium was low too. So having a stress test, EKG and echo cardiogram confirmed my heart was good. I had good exercise tolerance. Sometime 's medicines can cause these side effects ( tachycardia which is fast heart rate, bradycardia, pounding heart rate), so it is important to get it checked out.

[pberggren1]

Sangye, do you mean on the Forum?

[katarzena]

This is so sad. :(
I have googled the echocardiogram and realised they do this to me almost every month. It's really uncomfortable, but I guess now, extremely important.
Thank you Sangye

[elephant]

Wow Katarzena that is alot for you to get a echocardiogram once a month. Do you ask why?

[Sangye]

Phil-- yes the email connection in Mark's profile. Will Jodi get it if I send her an email?

[pberggren1]

Yes, Jodi will get it Sangye.

[Col 23]

Hi Phil
please let Jodi know that Im thinking of her from Australia and feel so saddened, just reading this thread has reduced me to tears. Although I have never
met my heart goes out to them at this sad time and her sudden loss.
Col 23

[katarzena]

No I didn't ask anything. Now they stopped with it but at the beginning I was every month on it if we're talking about the same thing. EKG I know what is but I guess echocardiogram is when you lay on your back and they go over your chest with some thing that has gel on it and you can see your heart on the monitor black and white and you get three pictures of your heart. That's what they were doing to me if that's echo. I really don't know

[Jack]

Yes, EKG (or ECG) is an electrical test where they wire you up and check what impulses the heart muscle is giving. The echocardiogram is an ultrasound test with gel used to make a good connection and shows the blood flow through the heart's chambers and valves.

From the posts on this forum it seems that opinion is divided as to the importance of the echo test. I have had one in the past, but my consultants attitude seems to be that if my ECG results are good and I am showing no heart trouble symptoms then I don't need the test. Who knows? They certainly don't hesitate from testing me for everything going if they have any doubts so I just go along with them on this one.

[pberggren1]

I think I am going to get my GP to do an echo just to be on the safe side. And then when I go to Mayo I can take that with me along with all my other test results.

Not to get off topic, but maybe I will get an ultrasound done of my kidneys again and maybe of liver or other organs in that area?

So what you are saying Jack is that I would have to go in for an ultrasound to have this echo-cardiogram done of my heart?

[Sangye]

An echo is a special type of ultrasound. You just ask for an echo. Unless you're having problems in other areas, it probably doesn't make sense to get ultrasounds of everything. Do you suspect worsening kidney problems?

[pberggren1]

No I just like going to hospitals to have tests done. I'm kind of weird that way. I like to stay in hospitals.

[Jack]

The perfect excuse to lay in bed all day! ;)

[Deanne Hull]

That is very sad, I will ask my doctor about that when I see him, thanks for bring it to our attention

[ranpar01]

While supporting and advocating for my Dad in various hospitals I've heard doctors say he has 'limited involvement' Wegener's or variations on that theme. It gets me furious, because I know something like this can happen. I don't believe there is such as thing as limited WG. We have learned at this point to completely skip our local small town hospital which gave the ubiquitous 'you just have pneumonia' diagnosis originally and we drive to the larger research hospital in San Francisco.

It's so sad to hear of this passing, my best wishes and prayers go out to his family.

[Jack]

I think that most of us who have spent some time on the forum now know that the concept of "limited involvement" is a dangerous one. The disease can turn around and bite you in an unexpected place at any time. It is a shame that some doctors use this term although perfectly understandable when the symptoms can be so different between patients.

[Nancy]

I have learned even with my "Limited Wegener's" to carry additional prednisone and pamphlets about Wegener's and vascultitis from the Foundation - because most people will look at you with a blank stare and go "Never heard of it". I was recently working - still testing out my wings after this exacerbation from my now regretable H1N1 shot....when I started to lose vision in the middle fields of both eyes. No headache, although me eyeballs felt sore...I could see peripherally and since I was at the hospital working - stopped work and went to the ER (small town)... I reported new onset vision loss and reported Hx of Wegener's vasculitis...then sat............... I called my daughter to let her know where I was, then called my wegs specialist and left a voice mail for nurse...
Someone was watching out for me... my vision improved on it's own. Just about the time the ER physician and I started to discuss vasculitis - which she had NO idea about - my Wegs specialist called - he spoke with her - took 5 minutes. I got IV solumedrol and then increased my pred. I saw wegs spec 2 days later - waiting to see if Genetech will help me out...
"Limited Wegener's" is like being partially pregnant.....there is no half and half... just sometimes less symptoms, sometimes not...