Anyone with involvement of the heart?

[KathyF]

I am just starting this journey and my lack of knowledge regarding this unusual disorder is creating great stress. After two years of ever-increasing, truely odd and often scary symptoms, and visits to various specialists that threw up their hands and said "good luck", I finally found a pulmonologist that believes I have Wegeners. I am waiting for the results of bloodwork and CT scans to see what treatment he feels will be appropriate.

My symptoms began two years ago when I found blood clots in sinus drainage after a sinus infection. I wasn't terribly alarmed as that disappeared as the infection cleared. Shortly after that two unusual problems began. First, my blood pressure started to rise from a typical 100/60 to 140/80...then would drop to 90/55...odd. Then I started having flutters, then a racing heart to the point of nearly losing consciousness. At the same time I was having problems with frequency and amount when going to the bathroom accompanied by pain in the groin. Later my PCP would find blood in the urine as well without infection. Both these sypmtoms were more aggravations for awhile and I didn't see the PCP until the heart problem became scary. They measured my heart rate at 170bpm during one event and diagnosed me with a Supraventricular Tachycardia and put me on blood pressure medication that has worked well until recently. That summer I had an unusual rash on my face crop up. Thought it was Roseacea at first but the pattern did not fit. It last three months then disappeared. Last December 16th I came down with bronchitis (not unusual for me) but the cough was unusually bad. By December 31st I was coughing up bloody mucuous. Figured it would go away in a few days. When it didn't disappear by late in January I went to a pulmonologist and she did a bronchoscopy. Ruled out cancer, bacterial, viral and fungal infections. However she found my lung tissue was friable and inflammed and when she touched it with the scope, blood would flow out of the tissue. She was clueless and diagnosed COPD and GERD. That made no sense to me but I had a gastroenterologist do an endoscope and he found no evidence of GERD. The pulmonologist was lost.

My cough has continued but is very mild, however at first I was tasting blood all day, every day without mucuous. Felt like a vampire. Has anyone experienced this...dry cough with bloody taste? This lasted for over nine months. Now I only taste blood rarely but other symptoms are showing up. I have had blood in my sinus drainage again and more recently a bloody nose for the last four days. I have headaches, dizzyness, ringing in my ears and possible loss of hearing...it's hard to know for sure with all the ringing going on. Also, I have another rash on my face that just started a few days ago.

My heart is a huge concern right now. It has started skipping beats and racing, palpitations and pain in my chest. PCP has increased my meds but that was last week and it may not be enough. Has anyone had this experience and what happened? This could be a separate issue for me as heart disease runs in my family, however the timing and the fact that it is electrical and not mechanical (my genetic problem) worries me. If anyone has any experience with heart involvement, please let me know. BTW, I never smoked, drink only rarely and exercise often and weigh 120 lbs. My mother died at 55 from a heart attack so I have been very cautious.

I know this is long, but if I'm worrying too much, I would love to hear that. Also if anyone has recommendations about WEG specialists in the Oklahoma City area, another please let me know,
Thanks

[pberggren1]

I know TOBEY on here is in Oklahoma but not sure what city. I think he has a Wegs doc but not sure. I would message him to see what he has to say.

I only know of 2 or 3 other Weggies where the heart was involved. Heart involvement is extremely rare. Your symptoms sure sound like it could be Wegs. Have you had an echo/ultrasound done of your heart? What about a CT scan of the heart?

Bottom line, you need a WEGS EXPERT on your case if this is Wegs. Even if it means traveling to a large center. I would think Oklahoma City would have a Wegs expert. I know that Kansas City has a few.

[KathyF]

Thanks for the contact Phil. My new pulmonologist is associated with the University of Oklahoma and he is the first specialist (pulmonologist though, not WG specialist) I've seen that after reviewing my file immediately asked if I knew anything about Wegeners. He ordered tests and explained to me that once he had the results he would be able to determine whether to do a biopsy or feel comfortable with starting a course of treatment or monitoring my condition. I was so shocked that he didn't come back with the usual..."I don't see what your problem can be", that I was a little dumbfounded and forgot to tell him about my heart symptoms. This is something that I will have to discuss with him next time I see him, which I hope will be soon.

I had believed the heart problem was a separate issue until lately. I had read that heart involvement was highly unusual. However the timeframe for the symptom presentation and the most recent reoccurrence of those symptoms even with medication gave me second thoughts.

[whatthewhat]

I am so sorry for your struggle, Kathy. I am also so glad you got a diagnosis and I echo Phil that you need a doctor experienced in WG /GPA. The Vasculitis Foundation has a list, if that helps.

FWIW, 2 out of the 13 pediatric weggies I know thru fb have cardiac "irregularities" - one may be related to meds but the other seems WG itself. That child is in the process of further tests.

I hope you keep posting. Usually getting the diagnosis marks a turning point, it seems.

[mishb]

Hi Kathy

The heart palpitations can also be a result of the anxiety and stress that you are going through with this.
It can also be a major symptoms of menopause.
It can also be caused my medication.

I also have these events where it feels like a kangaroo is just about to jump out of my body.
The heart feels like it stops and then starts again with a thump.

I have previously had an ECG and an EKG (electro and Echo) and both have shown no heart problems.

For me, my doctor thinks it is perimenopause.

I do agree with the above comments, that you need to see a WG specialist.
You also need someone to help ease your stress.

Take care