Is there any corelation between Wegeners/GPA and Cardiac?

[Auntie TooToo]

I was recently seen by my Pulomonigist due to increasing shortness of breath and chest heaviness; after a series of cardiopulmonary tests, I have now been diagnosed with Disytolic Dysfunction - Left Ventricle. Currently on medical leave from employment who as a matter of fact relieved me of duties due to claiming that I am a "liability" because of increased pulmonary problems and possibility of dispersment of chemical agents {I work/worked in prison system}. I am wondering if there is any relation between Wegeners and cardiac problems; my rheumy says usually not related. Can anyone give me any input?

Thank you,
AuntieTooToo
"fellow weggie" in Texas

[Pete]

Haven't heard from you in awhile, Auntie!

Your post reminded me of a lesson in statistics: correlation does not imply causality.

Hope they get you back to health soon!

[marta]

Hello Auntie,

I haven't been on here for a while, but here I am dabbling in posts.
I have seen a number of cases of cardiac problems associated with Wegeners. I know a fellow who passed from myocarditis early on in my diagnosis. In fact he was the first patient I knew that passed right after I learned the existence of WG. I also have a friend from British Columbia who had cardiac issues, and his doctors, who were not at all versed in Wegener's, stopped his treatment for WG to focus on the heart issues. I told him to go to Vancouver immediately and talk to someone more knowledgable because he was going to get killed by their ignorance. What I've witnessed is that if anything major goes off after WG diagnosis, the first thing to consider is that it is WG related. He did go, and it turned out that it was 100% related to the WG, and once they started treating him more aggressively for the Wegener's his heart issues were resolved. He ended up moving to Ontario so that he can be closer to more proficient WG doctors. His docs in Prince George were always fighting with him and letting their egos make erroneous decisions.

I myself acquired a significant collection of pulmonary embolism (PE) clots in my lungs last June when I had a significant flare. Our local docs had no clue. I ended up figuring it out myself and contacting my rheumy (who is AMAZING) and she immediately made me go get a CT scan which confirmed our suspicions. That day I ended up checking myself into the hospital and hung out there for a week or so. Since my case, my rheumy is now using baby aspirin as part of the treatment for WG patients as she had suspicions that clotting is a high possibility with WG. Once you have PE this weakens your heart, so your heart issues could be a secondary symptom. Here's a quote from Mayo website:

"Pulmonary embolism can also lead to pulmonary hypertension, a condition in which the blood pressure in your lungs and in the right side of the heart is too high. When you have obstructions in the arteries inside your lungs, your heart must work harder to push blood through those vessels. This increases the blood pressure within these vessels and the right side of the heart, which can weaken your heart."

I hope this helps in some way.

I found that my most recent flare was a completely different experience. I am armed with knowledge now and didn't feel as helpless as I did at diagnosis. I can have an intelligent conversation with docs, and they (if they're good) will respect that. Just before my last RTX a pulmonologist wanted to put a scope down my lungs, and I wasn't keen into potentially introducing a foreign substance into a closed environment just before blowing my B-cells. I asked him for his risk-benefit assessment and then gave him mine, and he actually agreed with me and we didn't do it. We figured out a different way to ascertain if the the hole in my lung was infectious or a WG lesion. It was of course the latter and we proceeded with treatment. My point is that if you go in armed with some knowledge, you are the boss.

Also, default setting is that the radius of blood vessels that WG attacks are actually everywhere in the body; lungs, sinuses, kidneys, ears, eyes, legs, arms, skin, heart, liver, brain, everywhere. So even if it's not a common organ associated with WG, I think it's safe to assume that if you're flaring, and something odd goes out of kilter, it's most likely Wegs related.

All the best in figuring it out and nipping it in the bud.
Peace,
Marta

[whatthewhat]

I love this post, Marta. Well-written, good mix of anecdote and science, encouraging... seriously. Thanks for taking the time.

[Auntie TooToo]

Hello Pete & Mata,

Thanks to both of you for your response. Yes, I haven't been on-line in quite awhile; finally was able to go back to work but the struggle was difficult to say the least. Majority of days, I come home exhausted and go to bed and then it takes the weekends to recoup.

I have a very good "team" of specialists here in Houston Texas and they all work together on my case. I have had numerous bronchoscopies since first diagnosed in 2013 due to other infections in my lungs {history of cryptococcal fungal infection and they found TB when first diagnosed}. Due to my most recent flare, my pulmonary was concerned about blood clots in lungs as well; the lab work showed predisposition for them however lung venilation scan was negative. However, the 2-D Echo w/doppler revealed a "diastolic dysfunction - left ventricle"; my rheumy doesn't think related to WG but I'm not too sure since as it was explained to me that when the lungs pump blood back into heart, the heart is "stiff" and won't accept so it backs up into the lungs causing pulmonary inflammation, SOB and chest pain.

I agree with your comment about "default setting" ... it seems to me as well that if the problem is related to the blood vessels and since WG causes such inflammation within the vessels that any associated problem would be related. As for now, I'm in a holding pattern awaiting final test results regarding this new problem and for the meantime, I've been relieved of duty from employment {which puts another stress factor into the mix}.

Anyway, thanks for your kind words and hopefully things will get "nipped in the bud" soon.
Thanks,
Auntie TooToo

[Jaha]

My specialist says that all Wegener patients should have a cardiology work up. She says it can indeed affect your heart. I'm wishing you all the best.