New Member - Diagnosed a Year Ago

[zylodey]

Hi there, I was diagnosed back in May 2009, after suffering from heart failure. I have a pacemaker. They told me it is fairly rare that WG affects the heart. I had severe sinusitis for about three months, until I finally had my kidney biopsy and was diagonsed. I was on prednisone and cytoxin. I have been off cytoxin since about November and am now on 4mg prednisone and 150 mg of Imuran. I have not had any flares yet and seem to be doing fairly well, I just get tired more often. I had to stop taking bactrim about three months in because I had an allergic reaction to it.

I do have the saddle nose deformity and as I said in another thread, I am starting to look into trying to find a surgeon who cold perform the surgery. In Saskatchewan, it is very hard to find. My specialists say I have to wait another year to get it done anyway, but there are very long waiting lists. I may have to look to Alberta.

I have only been a member for a day and already this site has provided me with more information then I could have imagined!!!

[DEE]

welcome zylodey
you have come to the right place ,this is a great forum full of kind and understanding people
when the others wake up im sure they will be able to answer any question you need to ask , better than me as im still in the learners class :)
i have learnt so much from others here take care of you DEEx

[Jack]

Welcome to the Forum, sounds like you are doing not too bad considering. ;)

It seems that heart involvement is actually quite common in Wegener's patients, but is usually asymptomatic. There is a report on the subject somewhere on these pages. Feel free to ask any questions that occur to you or even just have a vent about your current situation. There is so much collective experience on here that someone is sure to have something worthwhile to contribute.

[elephant]

Welcome and glad you chose this forum. How is your heart doing? Do you see the cardiologist often? Many of us have already gotten echocardiograms done, just to rule out any WG problems in the heart

[Sangye]

Hi Zylodey, welcome to the group. Wow, heart involvement has been a big topic on here the past couple months. I'm sorry you had it, but very glad they discovered it in time. It sounds like your Wegs is behaving itself--always good to hear.

[pberggren1]

Welcome again Cherie (zylodey)

Yes, elephant is right about getting an echocardiogram done of the heart every year just to play it safe. It is basically just an ultrasound of the heart.

DEE may just be a resident but Jack and I have our Ph D in Wegeners. There are a few other Ph D's on the site as well.

Sangye, otherwise known as the one who nags new patients on the site to get to see a Wegeners Specialist, is one of the other Ph Ds. She is awesome to talk to and very knowledgable. She has a holistic background being a chiropractor.

Anyway we all look forward to hearing more from you in the future.

Take Care,
Dr. Phil

[Sangye]

LOL-- And Phil also moonlights as our Tour Guide. :D

[pberggren1]

I specialise in Eastern Europe.

[pberggren1]

No, wait a minute, I meant to say Western Europe. It must be that darn Pred again!

[elephant]

Phil glad your in great spirits! Love your sense of humor!

[zylodey]

Glad to meet you all.

I have to attend the Pacemaker Clinic every three months and they test my heart every time. Right now one of my leads is not in the right position, so they have to put the pacemaker at its highest voltage in order for it to work, so that is why they are testing every three months. Usually it is every 6 months. They are not going to go back in and move it yet, as I am only using that lead 1 % of the time, so they think it is better just to monitor it for now. I also had a leaking valve when they put int he pacemaker, so I am supposedly scheduled for an echo anytime now. The cardiologist thought it might be due to my heart failure and would correct itself, so wanted to give me sometime to recover, but he said he would schedule it for the summer. I have not heard anything yet, but summer is not over - thankfully!

[Jack]

I think you should chase up the echo as a matter of urgency. Although I admit that I know little about it, this sounds like the sort of damage that Wegener's can cause.

[LisaMarie]

Glad to meet you all.

I have to attend the Pacemaker Clinic every three months and they test my heart every time. Right now one of my leads is not in the right position, so they have to put the pacemaker at its highest voltage in order for it to work, so that is why they are testing every three months. Usually it is every 6 months. They are not going to go back in and move it yet, as I am only using that lead 1 % of the time, so they think it is better just to monitor it for now. I also had a leaking valve when they put int he pacemaker, so I am supposedly scheduled for an echo anytime now. The cardiologist thought it might be due to my heart failure and would correct itself, so wanted to give me sometime to recover, but he said he would schedule it for the summer. I have not heard anything yet, but summer is not over - thankfully!
Hello Zylodey......Welcome.....I am a newbie...confirm diagnosis in May -June....Have trach right sinus right jaw right paritiod gland and heart involvement...per echo (no Symptoms from the heart except for pain...my ef is 55%).....I have been blessed to find this site and it has kept me sane ...vent ask question and share...we all learn from each other...welcome